My New York Minute

In a New York minute, everything can change
In a New York minute, things can get pretty strange

Lyrics by Don Henley & Danny Kortchmar

At age 51, I have shared many New York minutes with my wife, family and friends. But my personal New York minute came at 4:30 pm on Tuesday, April 13 with a single look from my urologist.

My wife, MaryEllen, and I were seated in Dr. Paul’s exam room when he entered. Before he even spoke, I read the verdict in his eyes. I had prostate cancer. Oddly enough, my first two thoughts were: “I’m glad to see that after years of practice, this doctor isn’t a bit jaded,” and “how ironic that I work at the Prostate Cancer Foundation, heading up its communications efforts.” Dozens of other thoughts followed in rapid succession.

Eight weeks earlier, through my annual physical and routine PSA test, I was told that my PSA levels had nearly doubled from 3.0 to 5.8 within a 14-month period. There was no immediate cause for alarm. There could be a number of medical reasons for the rise, including prostatitis or BPH, an enlargement of the prostate. I had no symptoms. It could even be a false reading or a temporary, inexplicable elevation. After all, when it comes to diagnosing prostate cancer, the PSA test does have its benefits and shortcomings. I was referred to my urologist who, after consultation, scheduled me for a needle biopsy.

I’ll be honest, the needle biopsy isn’t something anyone in their right mind would willingly volunteer for no matter how high their scientific curiosity. (See post script.) But I suppose I have been through things much worse, such as the pain that led to my first root canal years ago. Most important: the biopsy gave us the data we needed.

My doctor explained that my biopsy revealed a “significant” but earlier stage cancer. Six of the 12 sectors of my prostate gland biopsied contained cancer. My Gleason scores in four sectors were 7 (4s+3s); in three they were 6 (3+3). Within the core samples that contained cancer cells, the percentage of cancer involvement was 93, 75, 36, 33, 3 and 1 percent of the core volume. At this point in the diagnosis, these numbers can lead patients, depending on various personal factors, to a number of treatment options. But, in my case, harboring this degree of cancer at just 51 led my doctor, wife and I to decide upon a more aggressive course of treatment. In my case, proactive surveillance is not an option. For many, it could be the only course of action ever needed.

As a side note, I am not much for gambling—I hyperventilate just placing a $10 bet at a roulette table.

I have elected to have a radical prostatectomy in the second half of May. Until then I will be busy dropping some pre-surgical weight through diet and increased exercise, getting a bone scan to confirm that the cancer has not metastasized and consulting with my surgeon. My biopsy slides will also have a second reading just to make sure nothing was missed in the first review. My wife and I will also be chasing down asnwers to the numerous questions, big and small, that are now popping into our brains on regular intervals.

At this time I am at peace with my decision to have surgery. In addition to my urologist, all of the talented scientists I work with on a regular basis, and with whom I have shared my data, have conferred that this is something I want to get out. This makes me feel good.

So, the cancer communicator has jumped the fence and become the cancer patient. It’s a new role I need to balance with my roles as father and husband, and a full-time professional. My family and I have been placed on an emotional rollercoaster that we need to ride out. Armed with data, the love and support of friends and more caring colleagues than I can count, we will do just that.

Since joining PCF, I have been issuing a simple call to men and families: Make Prostate Cancer Something to Talk About. Hence, the initiation of this blog. Through my treatment process I will share personal perspectives and insights—in no particular order—with the hope that it encourages discussion or provides some company to families who find themselves on a similar journey. Pick and choose what you need. Share in my therapeutic endeavor. This is no exclusive country club. We 1 out of 6 American men and our loved ones are all in this together.

P.S. As I reviewed my draft of this posting I realized that I do indeed know a brilliant prostate cancer researcher who told me that he has volunteered for several biopsies in the past. His team needed healthy tissue samples for their research. I am sure there are others like him. With much appreciation I salute them for their bodily and scientific contributions to the field.

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130 Responses to “My New York Minute”

  1. Make Prostate Cancer Something to Talk About. We couldn’t agree with you more!

    We are so proud of your strength!

  2. Dan, I hate that you’ve earned a patient’s perspective, but this blog is terrific. It’s great to share your perspective and experience with PCa patients as well as their families and friends. And the links to PCF.org make it really easy to confirm definitions and to reference accurate, up-to-date information. Absolutely invaluable. I will send this to everyone I know.

  3. I wish you an easy surgery and recovery. I’m 53, was diagnosed in January (with a PSA that also had gone up but then had settled back down to 2.39 by the time of my biopsy) and I had a radical prostatectomy five weeks ago today.

    My biopsy had five positive cores with the highest at 90% and the others all less than 50% and with a Gleason of 7 but a 3/4 and not too much 4.

    I had it done the minimally invasive route assisted by a robot. I was in the hospital two nights. 16 days later I did a 5K walk to raise money for the prostate cancer research program at the hospital where I was a patient (there are some posts about this on my blog).

    I had no control issues on removal of the catheter. (No comments on the Internet about the other thing we all worry about.)

    I will soon be told the results of my post-surgery pathology and also will have a post-six week PSA test-those two things will determine whether anything further is required.

    I would be more than happy to correspond with you or speak to you on the phone if you’d find that helpful.

    Your sharing on this blog is an important thing to do-people will find it via Google and I just saw it on FaceBook with a link from Movember.

  4. Dan
    you’re an inspiration to us all…your friends in the Netherlands will be thinking of you and your family and wishing you a full and healthy recovery!

    Hang on in there buddy and tot ziens!

    • My husband & I just got the news that cancer was in his biopsies. We live in Cd’A, ID, near Spokane, WA. Any suggestions for finding a good doc?

  5. Hey there. Steve Tilden gave me the link to your blog. I’m 51, retired from the state fire department last year and last Friday the urologist told me my biopsy was positive. Gleason scores were 6 (3+3) on both sides. I’m going down to the City of Hope on May 4th to talk with them about robotic surgery. Have another retired fire guy up here who had the same thing done there, by the same doctor I’m going to see, 3 1/2 years ago and said they were great. I have no intention of putting things off for another day. Thanks for the blog…I’ll be checking in consistently.

  6. Thank you Dan for this very special blog, beautifully designed for a world that needs to hear your message. You’ve not known me long, but I have a highly sensitive soul that can find meaning in a leaf falling. (Granted, it has to be a special leaf, but still … ) So, you can imagine the degree of empathy I’m registering in relation to your story.

    What comes to mind is the idea that there are no coincidences. As you’ve heard me say, “I don’t want to get ‘church-y’ on you” but, I must go there in this case. Your courage, eloquence, intellect and career are divinely orchestrated to be a messenger of prostate cancer awareness. Your grade for doing your work is A+. The blessing is that your proactive “man-up-manship” (if that’s a word) makes it possible for you to keep making the A grade and thereby, save lives.

    On the topic of no-happenstance, your six-week mark on May 19th is my 25th wedding anniversary. I can’t think of a better day to send good thoughts up on your behalf for your journey … your family’s journey, as your wife indicates. Rest assured, my prayers are constant.

    Thank you for being you. Your work makes a difference. You make a difference.

  7. Dan,

    I’m in tears as I read this. I’d like to say its the same as the hundreds of cases we hear about at PCF. It’d be a lie. This time I know the person who is suffering.

    I’m sorry we have not found a cure yet. I’m sorry we’re only now learning what to do to reduce risk. Most significantly, I apologize for the consequences our shortcomings are imposing on you and your family.

    I admire your courage. You, more than anyone, know just how difficult it is for men with prostate cancer to share their stories. Your willingness to break the silence sets an example for the rest of us. Our prostates may be private, but men can no longer sit on the sidelines and let their stories go untold.

    Keep fighting. We’re right here with you – pipettes, scalpels, syringes, and pens in hand.

  8. Hi, Dan. I was shocked as we sat in your office and you told me the news just 2 days after getting your results. Like you, I immediately thought about how ironic it was given where you work but almost as immediately, I realized that you would seize the opportunity and help to change many mens’ lives for the better. You are spot on about how men avoid check ups and fear the unknown — choosing instead to play their own game of roulette with their lives and those who love them. God bless you for picking up the mantle and charging forward with this blog. It will make a difference.

  9. Dan, Thanks for making this a public topic. I’ve tried to do that in my own circle since my ‘prostate moment’ December 23rd, 2008. Sounds like our initial biopsy results were very similar. I opted for a RALP and been blessed with outstanding results since. Prayers for you and your family as you head into the next few weeks.

  10. Dan,

    First off – thank you for doing this. We must encourage men to share their stories. My husband turned 49 the day before he learned of his prostate cancer diagnosis. 8 out of 12 cores positive, 8 gleason on 5, 7 on the remaining 3, up to 90% involved. Radical Prostatectomy in November and getting better every day. It was a scary and intimidating diagnosis but we are determined to change the course of this disease. Regardless of the controversey surrounding PSA testing, it most likely saved my husband’s life, so we will do our part to save another. We discuss his diagnosis with people, regardless of how uncomfortable it makes them; we are participating in the ACS Relay for Life promoting awareness for testing and we will keep telling his story. We believe that we are supposed to do something good with this diagnosis and we will. So thank you for jumping on the bandwagon, let’s continue to fill the seats!

  11. Best to you and welcome to the reluctant club…I had similar stats as you and today is my 8 week anniversary from my open RP surgery by Dr. William Catalona from Northwestern…and I have had my first PSA post surgery with a ZERO reading!!! I have found this journey to be very rewarding that would confuse most guys looking in but once you are here you will understand…Live each day

  12. Hi Dan,

    Thank you for sharing your story and I hope that it will encourage others to have the PSA and DRE tests, Unfortunately Prostate Cancer is not a well publicised from of Cancer, even though it is the second most deadly cancer in men and kills as many men, as Breast cancer does women.

    Even with the Movenber movement and all the famous men who have died from this disease, we cannot seem to create any where the awareness that Breast cancer has. I posted a question on my Facebook page, asking if “any one knew what the colour of the ribbon for Prostate Cancer was, other than sufferers their friends and families” I never got one response.

    I was diagnosed with inoperable PCa on 14 May 2002 and it became untreatable in October 2009, by conventional treatments. I am now on an experimental drug trial that seems to be working at this stage.

    You can read my journey with PCa at http://prostatecancernetwork.ning.com/ – if you are interested you can also read 12 Poems I have written about Cancer, on the same site.

    I wish you all the very best of luck, with your selected treatment and may you be cured of this disease, without to many side effects.

  13. Hi Dan, I want to thank you for this blog that you have decided to share. My husband was just told 5 weeks ago that he has prostate cancer. He will also be having surgery in May to remove the prostate. He has been encouraged by you and others who are speaking out about prostate cancer as it is something that is not really talked about much. I work for a company that devotes one entire month to fund raising for Breast cancer, of which my Mother passed away from , and my husbands Mother had. I am glad that they have this fund raiser every year but now I am more aware that we need to have a blue shirt at work for a month for the much loved guys in our lives. I am going to work on that at the company I work for and see if we can get money devoted to help research for men and for prostate cancer. Thanks again for encouraging my husband with your words and thoughts. Our prayers are with you and your family!

  14. Dan:

    No. I hadn’t seen your blog … but I have now … and I shall be sending others to keep an eye on it!

    If you need any help finding the right surgeon …

    :O)

    Mike

  15. i wish you well in your journey and a bit of luck…. i elected to respond when you mentioned irony…. how about a ” urologist with his own disease?” jm

  16. Another thing you might spend some time on pre-surgery is Kegels, see Should PCa patients do Kegels before surgery. Still looking for a definitive web tutorial on Kegels for men.

    In case the HTML in the comment didn’t work, the link is
    http://prostatecancerinfolink.net/2010/03/29/should-prostate-cancer-patients-start-doing-kegels-before-surgery/

    E Michael D. Scott, your web site URL is mistyped.

    • I had to go to a Physical Therapist after surgery because the nerve to my left leg was damaged and I have trouble walking. My therapist gave me a book by Janet Hulme, PT: Men over 50, now what?

      This has been very helpful in gaining back some control of my leg AND managing incontinence.

      The Best to my brothers.

  17. Dan – given your expertise, I would be interested in how you went about deciding who would do your surgery. Maybe you can comment on that in a blog post. My best wishes to you.

  18. Hopefully you have discussed all the things that could go wrong with other PCa surviors and your doc.

  19. My best wishes to you, Dan!
    I was also diagnosed at age 51, 8 out of 12 cores positive, 9 Gleason score on 7, PSA was 12 – 14. I had my open PR surgery in December 2006 in University of Miami. My cancer had staging pT3a. The doctor saved my nerves and currently I practically have no side effects. In exactly 21 day after surgery, I finished Miami half marathon with 2h:26 min, 3 weeks later another half did in 1:46 (my regular time), since that, I’ve done New -York full, Washington Marine Corps marathons (3:51, 3:54). This year I am planning to run Chicago. Right now my PSA is 0.8, it is rising and I was advised to start radiation treatment.

    Thank you for sharing your story, Dan! We all need that… Best of luck!

  20. Dan, all the very best to you. Your blog will be invaluable to men diagnosed with this particular cancer (including me!). Just a reminder, though, that TWO major treatments are in vogue: “RP” and radioactive seeds followed by 6-7 weeks of targeted radiation. Ten year “cure” results (numbers provided by the best institutions doing both procedures) are virtually identical. But “RP” is much more invasive, and recovery is a substantially longer process. That being said, it’s simply a matter of each man doing the research and arriving at a choice he’s most comfortable with. At any rate, keep up the good fight!

  21. CPDG in Dallas, TX Reply May 3, 2010 at 5:21 pm

    I just came of my radical prostatectomy that was done in April 1st, 2010. Surgery went well (performed by Dr. Julio Pow-Sang at the Cancer Moffitt Center in Tampa, Florida). However, few days after, I was surprised with blood clots that moved up to my lungs, leaving me with bi-lateral pulmonary embolism.

    Nevertheless, I don’t regret my decision to have a full removal of my prostrate. Yes indeed, still concern with the continence issue. My catheter was removed on Monday, April 26, 2010. Day after, I flew back to my home in Dallas, Texas and as of today still subjected to the use of pads. It is my prayer and hope that I can gain full continence.

    I do encourage those facing a decision making period to come together with your family and love ones. Consider every option and follow the path that will bring peace to your heart. Im the third in my family facing the surgery and the youngest when diagnosed (57 years old).

  22. So I just happened to catch your blog today and have been reading the comments. Deja vu. In 1997 at age 49 (no blogs back then) I was diagnosed with PCa…Gleason 6, PSA in the low 5′s. Fortunately my employer was (and is) Johns Hopkins, and I found some very good docs there and decided on the radical prostatectomy. Now 13 years later I’m cancer-free, no side effects, and the ordeal is a distant memory. Looking back, the high anxiety shortly gave way to getting my life back, which, of course, is more precious than ever. Best of luck to Dan and all who are considering their options…Dave from Baltimore

    • Dan,
      I just read your blog. I was diagnosed a few months ago. I had a gleason 6 and went through radiation.
      My first psa was 2.6 after radiation. I am stiff worried for my next psa. If it goes up, what is my next step? more radiation or prostatechtomy? Do you become totally impotent if they take your prostate out? These are my concerns, if you can respond honestly to me, i will appreciate it.
      thanks
      Carlos

    • Hi Dave
      I see you are from Baltimore. My husband (44) was just diagnosed with Prostate Cancer. No family hx, no symptoms. PSA 5.3ish. Gleason 6, stage 1 Grade 3. He is going to Johns Hopkins in 2 weeks to meet with Dr. Bavalaqua (sp?) to discuss surgery.
      Pray that you are still doing well
      Christine

    • Dave, I was just diagnosed with pc and am looking to go to johns hopkins for the surgery…i live in dc. do you have any advice on the best surgeons there?

      Thanks,

      • Al,

        I am sorry you have been given a diagnosis of PCa. While I can not recommend one surgeon over another, I can tell you Johns Hopkins, from my point of view, is a great institution. When meeting with a prospective surgeon, you should inquire on the number of procedures he or she has performed, and what are their stats for continence and erectile dysfunction.

        Best wishes for a great outcome,
        Dan

  23. Been there Dan. 1 year post now. Had the same procedure but with the da Vinci robotic system. I started a video blog when I found out guys don’t talk about it. You’ll find the first installment here:
    http://www.youtube.com/watch?v=cFEnX2E_4a8

  24. Susan Jannarone Reply May 4, 2010 at 12:23 pm

    Sorry to hear of your diagnosis. My husband, Dick, was diagnosed in January with metastatic prostate cancer and I have had Chronic Fatigue Syndrome for many years (dx at Johns Hopkins). Recent research suggests a retroviral link between prostate cancer and Chronic Fatigue Syndrome. XMRV, or Xenotrophic Murine Leukemia Virus articles are appearing regularly on CFS research sites. One physician with CFS has begun treatment with two AIDS drugs. I will attempt to copy and paste an article on your blog. We are learning that prostate cancer has more than one cause, and XMRV may be one of the causes. I wonder what other patients and their wives think about their husbands receiving treatment with AZT and other AIDS-related low risk retroviral drugs already on the market. Susan Jannarone

  25. At the age of 52 (in 2006) I was diagnosed with PCa; PSA 14.8,Gleason 7 (3+4).I elected to have Proton Beam Therapy at Loma Linda University Medical Center in Southern Calif.and I can’t say enough good about the experience. Anyone diagnosed with PCa owes it to themselves and loved ones to read “You Can Beat Prostate Cancer and You Don’t Need Surgery to Do It” by Robert Marckini. We had a ball during my 44 treatments over 2 1/2 months.They call it “The Radiation Vacation” for good reason. I am not taking PCa lightly but the care, nurturing and community we received will always be part of me the rest of my life. Currently my PSA is 0.25. There are 5 or 6 Proton Centers currently in the US.

  26. FYI my understanding is that the seeds are not an option when the Gleason score is above 6. This is also true of other treatments, such as HIFU.

  27. Tess Cacciatore Reply May 10, 2010 at 8:47 am

    I came online to research PCF and was instantly drawn to your story. It is very inspiring to read, also knowing that you will be able to share your experience with others to help them with your courage, knowledge and more.

    Thanks for sharing this most intimate part of your journey.

  28. Dan, I too am sorry to hear about your diagnoses. However, with all the positive comments posted we should be hopeful of whatever decision we make for treatment of our PC.
    May 7, 2010 my life changed. I turned 51, and was diagnosed with PC. Having 5/6 on the left side and 1/6 on the right and a Gleason score of 7, I will have surgery on June 7, 2010. I have been on a roller- coaster ride of emotions.
    I’ve come to some peace of mind with using an approach of stages, first, let’s get the cancer out and clean then I will deal with what is left, the sexual aspect. I didn’t really see a lot of comments on this in the post.
    I believe this is the part we all need to discuss just as much or more than the cancer itself. I would like to know from those who have had the surgery what sociological impacts (if any) their dealing with and what they have done to deal with that aspect of the surgery.
    Mark

  29. I had a psa score that hovered around 0.6 from 2002 to 2006. Then, in 2009 it jumped to 1.7 (over a three year period). This year (2010) it came back at 6(!). I didn’t know what that meant but after having it explained to me, I was stunned. A biopsy was recommended but JHU wouldn’t do it until I had the psa checked again. I went to their lab (mine gave the 6) and it came back at 3.8, which was still high. So, I will have a biopsy in June. I guess I’m in for the long haul.

    I’ve read this stuff about other causes for a high PSA. Walsh writes that “Only 15 percent of men with PSA lower than 4 ng/ml…will turn out to have cancer”. But, frankly, I haven’t heard much on blogs that actually do support that. Basically, from what I’m reading if you have an elevated psa (close to or above 4), you most likely do have PC. Seems like all I’m hearing about are those 15%.

    Any thoughts?

    Also, the question about sexual function is important. Can you have children after surgery, or are you incapable of generating sperm?

  30. Hi Dan

    So sorry to hear that you have had to go through this, ironic that you got it, makes the blog very pwerful!

    I am are looking forward to meeting you soon with the ‘brothers’and wish you a very speedy revovery. My very best wishes to you and your family.Wendy

  31. Hello Dan:

    I learned about your blog through a mutual friend. I was diagnosed with prostate cancer on March 26, 2010 after a negative biopsy two years earlier followed by a continually rising PSA. Cancer in 3 out of 12 sectors; Gleason scores of 7(3+4); 25%, 99% and 62% involvement.

    I’m 61 and also opted for a laparoscopic robotic prostatectomy. Surgery was June 2nd. Recovery was hampered by rather severe constipation (take your laxatives and discuss this problem with your doctor if it occurs, guys), but I got past that and I am doing quite well now, two weeks after surgery.

    The robotic minimally invasive technique is amazing. Thankfully, after removal of the catheter, continence has not been an issue for me. That was a pleasant surprise. Pathology reports on the surrounding tissue showed no disease outside the prostate so I’m hopeful that I am now cancer-free. At the very least I’m one more advertisement for regular check-ups and blood work. Once you have this disease and start talking about it, you begin to understand just how truly common it is.

  32. dan i also had a gleason of 3+4 .i had a robotic prostatectomy with a cooling procedure, 18 mos ago . my psa is now 0 and ALL works quite well! are you planing on a robotic? i am 78 now. good luck to you! another dan

  33. We have just started this journey with my father Sebastian. We found out about 6 weeks ago he has prostate cancer. He is 71 years old. They said he has had for itleast 8 years. He had his last test around 10 years ago. I have learned so much about this disease in the past few weeks.We see the doctor this thursday july 8th to see his options. He is not a candidate for surgery.In the last 3 weeks he has a bonescan &pscan. they are pretty sure it has spread to his bones since his test result levels are so high .Well best of luck to you. This site is wonderful full of great info to help my father.

  34. Dan, thank you for creating this blog. I’ve been looking for just this kind of forum for over a year. I am a Canadian living in Amsterdam, The Netherlands. 3 years ago my psa levels started rising. When the psa reached 4.6 finally a biopsy was ordered and it came back negative. The high level was explained as prostatitis. But from September 2008 to January 2009 it went from 4.6 to 12.6. The second biposy came back with cancer in 2 of the 8 samples, Gleason 3 + 3. The advice was “watch and wait.” I had a different perspective and found a surgeon in Germany who agreed with me that the prostate should be removed. He uses the da Vinci technique. Surgery went very well. No continence problems. But the pathology report was truly shocking. The cancer had escaped the prostate and the Gleason score was 4+5. The cancer was on top of the prostate, under the bladder where (at least here in Holland) they don’t biopsy. There was no cancer in any of the surrounding organs or tissues but a bone scan revealed what, at first, looked like metastasis on the left crest of my pelvis. It was also revealed that the psa, on admission to hospital for surgery, was 30. I began hormone injections immediately and had 1 every 3 months from June 2009 until February 2010. Starting in September 2009 I had a monthly infusion of Zometa, to protect my bones. The week after the first hormone shot the psa fell to 12.6 and it dropped by half almost each week. Since February 2010 it has been at 0.1 A subesquent bone scan revealed that whatever is on the pelvic crest doesn’t look like a normal metastasis but they actually don’t yet know what it is. So far they haven’t done a biopsy of the material because it would involve surgery again (the material is too dense for a needle biopsy). The last bone scan showed that whatever is there is contained and hasn’t grown. Needless to say this has been a roller coaster of a ride for me and my wife. But I feel fine and have come through the tiredness caused by loss of testosterone, due to the hormone shots. I still have muscle cramp and stiffness from the Zometa but otherwise I’m leading a full life. I’m 69, about 5 kilos(10 lbs) over weight because of the hormone treatment. For me one of the biggest battles was dealing with my emotions and belief system. Reading Gregg Braden’s book “The Spontaneous Power of Belief” really turned me around. He outlines up to date research which is prooving that what we believe about ourselves has a direct influence on how our immune system behaves as directed by the brain. Whereas a year ago medical staff were giving me 1 1/2 years to live, one year on they are now scratching their heads and saying “you’re doing fantastically well, keep up the good work.” There has been, of course, an excellent response to the hormone treatment and I’ve resigned myself to the fact that if it takes a medical castration to keep me alive then, thank you very much, I choose to live. The surgeon did spare most of the nerve bundles but of course the hormone treatment knocked all sex drive out of my system. I hope this posting will help other men and give courage – if someone with my case profile is still doing well, then those with better stats can take heart. Stories on here indicate a much more aggressive approach in America than at the hospital were I was under observation here in Amsterdam. I’d appreciate hearing from anyone who is in a similar situation to mine.

  35. Thank you for creating this blog.
    Should men seek monetary parity for prostate cancer research as is for breast cancerresearch?

  36. Hope you are doing well. I’m 6 months post robotic surgery and doing very well on all fronts. I noticed improvements continue month to month. Keep health and active.

  37. Dan: Sorry to hear the news but hopeful things will work out well for you. Thank you for sharing your experiences with others. I have to admit that this subject is frightening and troubling to me. My first thought was, well wasn’t he getting regular exams like you’re supposed to? I’ve learned that this disease can strike with very little notice and that is the most disturbing aspect to me. I hope they can develop better early detection techniques in the future.

  38. Hi Dan,

    Like you I was diagnosed with Prostate Ca in my fifties. I had an elevated PSA and a needle biopsy revealed that I did indeed have cancer. After reviewing all the data concerning surgical alternatives I thought…”there’s gotta be a better way”. I have several friends who have undergone radical prostate removal and all of them experience incontinence and impotence. There were other numerous post op problems too. while searching the internet I came across a website that described the HIFU procedure. High Intensity Focused Ultrasound is a procedure in which the prostate gland is ablated or burn away. The numbers for long-term survival, incontinence, and impotence were better or at least equal to the numbers for a radical prostectomy. Another upside was that there is no cutting of the urethra, no anesthesia (there is sedation and a spinal) and no hospital stay. The only drawback was that it is not done in this country. It has been done for years in Germany, Japan, Mexico, and Canada. I miraculously stumbled across a board certified urologist who actually lived only an hour’s drive from me who performed the procedure in Nassau, Bahamas. I saw him and was deemed a candidate for the procedure and went to Nassau on January, 17th, 2008. Long story short, I had the procedure done on January 18th, 2008, returned home on January 19th, and two years later I am cancer free with a PSA of 0.1, and I am fully functional in all ways. I would highly recommend that anyone who has been diagnosed with Prostate Ca look at this method.
    Thanks for giving me a forum to inform others about HIFU.

  39. Hi Dan,
    This may be inappropriate, but there are risks involved with a Radcal Prostatectomy.
    I was 65 when I had my surgery in August of 2008. I had a Gleason of 3 + 4. Biopsy showed 2 of 12 samples indicated cancer.
    During surgery my intestine was “nicked”. Intestinal contents flowed into my abdominal cavity. The hole in my rectum was discovered 3 days after surgery when I went into septic shock, had total renal failure, was put on dialysis, and was in a coma for 5 days. After a 35 day stay in two hospitals I was sent home to recover.
    I had a colostomy for 1 1/2 years (now reversed). The infection had also burned a hole in my bladder that would not heal. Since my urethral sphincter muscle was so damaged in the surgery, and there is so much scar tissue it became impossible to eliminate urine the “normal” way. So, my bladder was removed, my ureters were connected to a part of my small intestine that has an exit point (a urostomy) in my abdomen. My urine is collected in a bag I must glue to my body. I am told I will have this for life. [I do hold hope that a better future may be found in the new field of Regenerative Medicine.
    Meanwhile, I am adapting, and while not the man I was once, I can still do most things. My attitude was better when I was sicker, but felt I’d get back to normal, than it is now when I know I’ll always have limitations. If interested, you can read my (and some family) comments over about a 2 year period on http://caringbridge.org/visit/odellnelson. I try to be positive, but you may find my “humor” strange.
    My Best Wishes to you and yours,
    Odell

  40. Hi Dan,
    This may be inappropriate, but there are some dangers involved with a Radical Prostatectomy.
    My PSA had been at 3.0 for a few years, then shot up to 5.6. The “velocity” of increase made doctors suspicious. Biopsy showed 2 of 12 samples indicated cancer. My Gleason was 3 + 4.
    I was 65 when my RP was done in August, 2008. During the surgery my intestine was “nicked”. Intestinal contents flowed into my lower abdomen. The hole in my intestine was discovered 3 days after my surgery when I was in septic shock and had total renal failure. I was put on dialysis, and was in a coma for 5 days. I was in 2 hospitals for 35 continuous days before being sent home to recover.
    I had a colostomy that was reversed after 1 1/2 years. Infection had burned a hole in my bladder. A fistula developed that allowed “communication” between bladder and rectum — so another outlet for urine.
    Tubes were inserted through my back and into my kidneys allowing urine to drain into bags tied to my legs. The plan was to give my bladder a chance to heal. Finally it was determined my urethral sphincter was so damaged, and there was so much scar tissue, that even if my bladder would heal, or could be patched it would not have an outlet. My bladder was then removed, my ureters were connected to a piece of my small intestine which in turn connected to an opening in my abdominal wall (a urostomy). I now glue bags over my urostomy to collect urine, and I am told this will be for my liftime.
    Now, 2 years after my Radical Prostatectomy, I can do most of what I could do before the surgery. I am mostly happy with my life, though I feel more like an interested spectator than a full participant. My attitude was better when I was sicker, but felt I’d get back to normal than now when I know that’s unlikely. I do hold hope for better options; maybe the new field of Regenerative Medicine can find a way to regrow replacement bladders and sphincters.
    If interested you can read my blog with entries by me and my family, plus guest comments over about 2 years at http://caringbridge.org/visit/odellnelson. Beware of what I call humor — I’m just trying to wrap my mind around my situation.
    My Best Wishes to you and yours,
    Odell

  41. Hi Dan
    My stroy is almost the same as your. I’m 55 now, it was in Oct 09 and with physical for a pulled mussel and blood work. My PSA test level went from (3.0). 15 months befor and 4.9, and retest 5.0, and 5.1 in Oct 09. The biopsy results from the Gleason Scores were 3 + 4 =7 from 4 out of 8 samples in each section the other samples that were taken, the same score 3+4=7 total of 16 samples were taken . My radical prostateotomy was in April 29, 2010. Also with no other sign of prostate troubles, I’m doing great now, and I started a new Job at the end of June 2010
    Good Luck and stay healthy

    Danny

  42. I’m 65 (dec 25, 2010) I had a radical P done six years ago. I’m cancer free (PAs .0003) I have no erection, divorced for over 6 years.. is there any Blog to help provide any mental feedback as to how to have a relationship with a new partner?? I’m very open to my condition, no erection , pills and ‘shot’s’ don’t seem to work! I really don’t want to get into a relationship, what do I have to offer! How do you approach a new partner to explain the ‘problem’? it will take a very special person to relate to my condition. I’m healthy, not over weight and am active in my work. I have a 12 year old as my youngest child, that I have parental custody of and would like to have an adult relationship. Any suggestions! I’m not religious and do not have any outside groups that I associate with. I think the doctors should have a follow up relation ship with patients to address the problems that a radical P presents to the single male!

  43. Dan, your story is inspirational as well as the other posts on this website, I have just been to my urologist and been advised to have a biopsy. PSA is 4.1 and was 3.1 in march of this year. Dr. says DRE reveals right side is somewhat larger than left. I will keep all informed of my plight. Again thanks for this site, it really helps to hear from others who are or have gone through this.

  44. Dan … I am going through this now. read my bio on my site. I am a research person. Read the book “you can beat prostate cancer” by Bob Marckini. get it from amazon. it could totally change your decision. it did mine. I have researched just about “everything” in the world on this subject. I was booked for surgery with Dr. Peter Scardino, the Chairman of this area at Sloan Kettering and just cancelled after reading this book. John

  45. Hi John:

    Of course, in my case, the book doesn’t help as I had surgery last June. But I am totally pleased that I had it… I am metastatic with single Gleason 5 cells found in my lymph nodes in the post op pathology. With 24 known subtypes of prostate cancer, every case is different.

    Keep us updated on your progress.

    Wishing you health,
    Dan

    • RUBAKISIBO James Reply April 6, 2013 at 11:36 am

      I have seen this book on amazon,but how can one pay and get these books. I am in need of being more informed.can some one help/

      James

  46. I’m 54 now but was diagnosed at 47. After extensive research and consultations I opted for External Beam Radiation at Fox Chase in Philly. 7 years later (Aug 2010) my PSA rose back up to 7.5 and a new biopsy revealed it was “back”. This put me into the category of a salvage surgery patient and not many Docs will do a radical on a radiated prostate. If they will do it, they seem to have relatively little experience. Part of the challenge is to reconnect radiated bladder and urethra tissue. I landed with Dr. Peter Scardino at Sloan Kettering who has been doing salvage surgery for years. The deed was done on Dec 4th and just got word that the Path came back looking great! Right now I’m dealing with a 3 week minimum catheter and feeling good otherwise. The big follow up PSA is coming up on Jan 17th. Stay tuned. Hard to find info on “salvage surgery” patients. I elected radiation at a young age. Perhaps a mistake on my part although I was told the chances of reoccurrance were the same with radiation or surgery. Also, I agree with a previous post. If its in your family. Get checked! My brother was just diagnosed at the coincidental age of 47. He is going for the robot at U of Penn on Jan 14th.

  47. My wife and I sat in my Doctor’s office hoping for the good news all want to hear. It was a shock to us to hear the results of my scans. Six of twelve cells were showing envolvement, with two being totally dark. We discussed options. I researched three options, deciding to have radical surgery. My uroligist suggested a Doctor with advanced experience as the best option for lapariscopic surgery, which is less complicated than radical surgery. I had surgery on Jan. 18th 2006. The time spent in the hospital totaled 22 hours, and I was able to return to work in two weeks. My continence lasted fours weeks until I dried completely, and my sexual functions returned within 8 months.
    5 years have passed and it is January 8th. My PSA has been at .001 since my surgery and I have felt great. During my routine physical, my Doctor informed me that my PSA was now at 1.88. My wife and I have always thought if there were no prostate, my survival is guaranteed. I have scheduled a uroligist appointment and will have tests next week. They say if you are to have a recurrance it will be around the five year mark. Although I’m unsure of which way I’ll choose to proceed, I encourage all to continue checking their PSA each year.

  48. I have found exceptional support through the local cancer community center on the prostate group, once a month. Many different stories but all informative because you are dealing with peers whom have a history also.

  49. Hi Everyone,
    Just found this blog. I am trying to find a cryosurgen in the North East area. Does anyone know of one??? Also, has anyone had any experiance with cryosurgery of the prostate?

    Hope you are getting better Dan, and thanks for this blog. Les

  50. I am also 51 and going in for radical robotic surgery in a few weeks. Good luck I would like to know how you are doing dealing with all the potential negative side effects. Hopefully we wont experience any of these but the looming fear is there. All I can suggest is get into the best shape of your life. Physical and Mental endurance is going to help in the recovery. Wow this sucks. Hosty. By the way if you want you can use me as a poster child, film my procedure whatever to help bring attention to PC.

  51. STAY HEALTHY, BE WELL.
    My husband and I were told he had stage iv prostate cancer at the same hospital, at the same time that our daughter was born 24 years earlier.
    It nearly broke our hearts.
    Trying to determine which courses of action now.

  52. I was sent to a urologist in Jan.2011 I was scheduled for a biopsy the the last week of JAN.2011 my family Dr. found a lump on the right side of my prostate. The urologist confirmed and took 3 small biopsy’s. The results came back suspisous So we have another biopsy scheduled for April 19th at Piedmont hospital in Atlanta GA. Hw will take 25-30 biopsy’s to determine what is going on my PSA was 1.1 very low
    But there was a line of bumpy growths on the right size with one being a little larger than a cherry and in a very suspious place. He told me I have about a 40% chance of having prostate cancer and possible spreading due to the location of the one large growth it sometimes was just the tip of the iceburg Please commit

    • I am sorry you are going through the diagnostic process, but… if cancer is ultimately confirmed, early detection and treatment can deliver five year survival rates of more than 95%.

      As a patient, not a medical professional, all I can say don’t put any carts before the proverbial cart. Try to take a deep breath and take it one step at a time. With 24 known sub-types of this cancer, there are indolent (non-life-threatening) forms in addition to mid- and highly–aggressive forms. Your biopsy will provide the data you and your physician need to characterize the cancer (if it is indeed confirmed) and select a treatment plan that is right for you. No one sized treatment fits everyone. You can find more information at http://www.pcf.org

      My prayers are with you and your family.

      P.S. Following your biopsy, do not be alarmed to discover possible large amounts of blood in your semen and possibly your urine. Physicians warn patients of this possibility, but many patients are surprised by the amount of blood they see. It can take a while to clear up.

  53. Hi,

    You and I both started this too young. I was 50 when I had the first PSA and it was bad. That was in September 2004. I was told I had cancer in December 2004. I had 6 weeks of chemo and surgery in early 2005. PSA dropped, life looked good. Then the PSA rose in 2006 and I did eight weeks of radiation in the fall of 2006. 2007 was a wonderful year, but 2008, the PSA rose again and much like in 2006 they could not find any cancer, but I started hormones in January 2009. I was told they would work 3 to 5 years.

    That is probably too much about me, but my question is you are schedule for 3 years of ADT. They gave you a time frame? I was just under the impression that did not happen.

    Can you explain.

    I should say, I have had a very good PSA on hormones and my doctor has decided to skip the next treatment and see where I am at with the next PSA, so I am hoping to be off of them forever.

    Keep believing,
    John

  54. My son is just 49 with the same aggressive prognosis as Dan Zenka. It would be so good for him to talk to someone young with a few years on from initial diagnosis. His Gleason is 9 and one lymph node and seminal fluid involved and 3 murky margins on his removed prostate pathology. Actually, it would be good for ME to connect to Dan Zenka I love that he is doing a blog. I have genetic breast cancer and have had for 32 years so I am the light at the end of Don’s tunnel. I had 11 of 17 nodes involved all those years ago and am still here at 75!
    Trying to get Prostate awareness up to Breast Cancer levels. I paddled on the first Breast Cancer dragon boat team. Great awareness machine.

  55. Here is a perspective from someone who was diagnosed at a young age. I was 43 at diagnosis and surgery, 44 had 7 weeks of radiation. I am now 51 and have been on the Lupron roller coaster for two years. I have the most fantastic Urologist and Oncolygist that anyone could ask for. Fight hard everyone, the cure is out there.

  56. I am 61, PSA elevated over the past seven years to 8.5, biopsy three weeks ago, 12-cores, small lesion found in 1-core, 3+3 gleason, less than 4% of the core sample.

    I have to decide what to do….wait and see, seed implants, surgery….anyone have any suggestions?

  57. just found out about this cancer. i feel fine and am hoping it is all a mistake.The dr. wants to see me in his office on wensday the11of june just two days befor my b/d,will be 53yr.old.
    well keep me in your prayers, as.As i will keep all of you in mine.will let you know what happens.

  58. I am a 67 year old health nut who has been suffering with BPH for the past 10 years.I just wanted to share some of my recent in the hope that it may help someone. My PSA levels have typically started at about 3.5 all the way to 15 and back down to 5 with several negative biopsies and no suspicious finding with a DRE. I will not take drugs and have had little success with alternative prostate supplements. Though I do take prostate supplements among others- the usual- with mixed sterols- beta sitosterol etc. I eat plenty of vegetables (cruciferous) and fruits. I also drink pomegranate juice which is supposed to reduce the incidence of prostate cancer and I exercise – running, biking, rebounding and some weight lifting. I weigh 165 pounds at 5’7 and try to limit my calorie intake from meat.
    Recently I have read, I read a lot, about a preliminary Israeli report that shows the role testosterone plays in prostate cancer. What’s more there may be a way to prevent, treat, and possibly cure prostate cancer.
    What the Israeli searchers have found is that the testosterone produced by the body (testicles) moves into your general circulation via the spermatic vein, where it reaches the vena cava near the kidneys. There the testoterone is greatly diluted by the blood where most of it gets bound. Normally, testosterone reaches your prostate through the blood stream once it has been diluted and bound.
    Since testicles secrete testosterone into the spermatic vein it has to travel 35 to 40 cm to reach the vena cava. Veins have one way valves that aid in moving the blood against gravity. As we age these valves can become defective and the blood flows back down. The blood needs to go somewhere and so is carried by collateral veins that carries the blood through alternative routes. Remember this blood carries about 130 times the concentration of testosterone than in your general circulation. One of these routes is back through the prostate which sets up a dangerous scenario.
    Dilated network of these faulty veins are called varicocele and the their prevalence increases as we age. Taller men are more affected because of greated downward pressure.
    The Israeli team reasoned that closing off the collateral circulation (a simple scrotal cavity procedure) that flows back to the prostate would help. In 72 men with prostate cancer, all had incompetent pressures in the spermatic vein, they were able to reduce the testosterone that flowed back by 99.25% compared to chemical castration, which creates other dangerous scnenes, at only 80%
    Thus, six months after treatment they were able to shrink the prostate volume nearly in half and reduce the PSA levels significantly.
    It’s a very revealing and compelling study and sheds much light on prostate cancer. It seems we should be discussing this as a possible option even if additional testing is needed. I would not hesitate to pursue this course of action even if just to determine whether I have this venous condition.
    Compared to other options this seems the most promising. Good luck Andre Maynard
    Ref. Andrologia,41,2009, 305-315. The US government itself tracked this study, completed in 2008, at http:// clinicaltrials.gov/ct2/show/study/NCT006337208; Journal of Andrology, vol 29, no 2, March/April 2008

    • Andre,

      I am beginning to hear more talk about this. Certainly more study may be merited and I look forward to tracking this approach.

  59. I have been an advocate for PC awareness since my grandfather contracted it in 1994 and passed away in 1997 because it spread from his prostate to his bones, lungs and finally his brain. It is SO important to take care of yourselves, guys! I’m actually running a cookie fund raiser for PCF to raise awareness!

  60. The best Dan. That Israeli study sounds very interesting. I am 58 and just a few days after my 10th or so diverticular infection in seven years last January, I had my first PSA. Ironically, throughout this strange journey, I have cured my diverticulitis problem with cayenne pepper, grapefruit seed extract and olive leaf extract. I was stunned that it came back a 59. Though my father and grandfather had the disease they had the slow growing versions. I took another test two weeks later and it was a 55. I decided to “throw the whole book” at the problem, taking every supplement available. Unfortunately, I took too much, using grapefruit juice to deliver my health drinks (too much sugar) and far too many testosterone supplements. Two months later my number jumped to 79. I had three DRE’s two ultrasounds (one black and white and one color) and an MRI. Considering what I read about PSA literature online I should be gone by now or soon. Due to a deep abiding distrust of the medical profession, I have cancelled three biopsies. Everytime I schedule one I run into a worse nightmare story. The worst thing is to have a doctor do your biopsy that will “strongarm you” into one of their personal two or three techniques. Having recently learned about the triple androgen blocker therapy, the chance of spreading the cancer through needle tracking doesn’t concern me as much. Amazingly my symptoms have been minimal and though my DRE’s have gone from suspicious, to firm to a “rock hard” left side, my MRI, which I recently viewed with a great doctor in New Jersey, showed a suspicious, yet small area on the left side. The MRI and both ultra sounds have shown no sign spreading beyond the capsule, but with the high numbers, I’m not so sure. Any arthritic pain is suspicious for you know what.

    I am presently watching my sugar and tesosterone intake and am on quercetin, zyflamend, turkey tail mushroom extract, resveratol liquid extract supplements and vitamins C&D. My last number did drop to a 73.5, so in six months my PSA has gone from 59-55-79-73.

    I will probably relent to a biopsy in the next couple of weeks and am ready for the worst news, but educate yourselves out there, before giving in to conventional medicine. Even therapies such as food grade hydrogen peroxide, DMSO variations and baking soda, if done right hold tremendous promise. However, your doctor will not tell you about these treatments as there is little to no money in any of them, yet their (conventional medicine) “solutions” are quite UNSPECTACULAR. It is truly sad to say that I feel once I go the conventional route beginning with the biopsy, it is the beginning of the end.

  61. Hi Dan,

    Sorry for news. You didn’t have to get the disease to prove your point. I was checked many times with high PSA’s but negative biopsies. My urologist noted that he had to see me in 6 months. His office never followed up neither did I. Two years later, PC. I went to Hopkins. Dr. Partin did biopsy to confirm and Dr. Carducci to treat. No radiation only ADT. Started with 107 down to 0.7 and holding. Zoladex not Lupron. No side effects after a year. Saw above blog about Lupron and it is not the first one I see with strong affecting side effects. I was not a candidate at 80 almost 81 on 8/12/11 for RP. I had problem with anorgasmia but recently was resolved. However, it may be that it was at ending period of ADT. Hope I last until vaccine from Mayo/Leeds comes in. Wouldn’t you think that a discovery of a vaccine would have a ton of trials open up. No politics but with new taxes and cuts galore there will be very little money for new research. When are we going to stop sending money to over the world. Good fortune to all who have PC and those unfortunately will have.
    There is no one treatment so check them all out . Mike get your biopsy before it too late.

    • Bert,

      I assure you, I did not get my diagnosis to prove a point! I just happened to be one of those 1 out of 6 men!

  62. I wasn’t looking or expected to be a member of the Prostate club, i went to my urologist for other symptoms with ejaculation and found I had an enlarged prostate and really had no idea what that meant. My PSA was 1.0 but an order was placed for thge biopsy which came back as a 7 of the Gleason scale and the cancer in a bad spot closed to the wall. I was given options to a course of treatment but chose to take it out, that was on the 3rd of this month and I have started a regiment of walking 3 miles 3 x per week and have researched the web for cancer fighting diets and have lost 11 lbs. I want to get the word out there that Prostae cancer doesn’t have to be a death sentence and would like to know of any fund raises in Massachusetts. I beleive it is important to have a goal whether it is long or short term and mine is to complete the 911 F.F. stair climb next September and possibly every yr there after. I find out theresults of the surgery on the 25th and I am praying it is all gone. God Bless to you all and stay positive.

  63. I had robotic prostate removal 11/09 day before Thanksgiving at Mayo Jacksonville. While there 2/11 for my wife having cancer rt kidney removal my PSA showed .1. Was back July 11 and was .18 and met with radiation Doc and told to go home and have PSA check every four weeks and I should have salvage rad if goes to .25 and before .4. Had PSA done at home 2 weeks ago and .12 for baseline at a diff lab. Anyone with this experience.

  64. Well I have been on vacation this week and the weather has been great. I have been trying to stay occupied in anticipation of tomorrow’s appt and follow up with the urologist. It’s been 3 weeks and I am ready to return to work, of course the dr won’t see it but I have been a good boy not doing a darn thing. This is the only place I talk about my cancer and to be honest I am pretty nervous about the future. Well I hope the best for all of you stay safe.

  65. I am 57 and we just found out I have the prostate cancer….. we have a meeting with the doctor next week. Please give me any advise I may need. I want to know what questions to ask. He took the biopsy – the 12 sections – and I think 6 had the cancer but he told me over the phone that they use the seem to feel that the robotic surgery is what they may suggest. My PSA jumped from 3.7 to 4.7 in one year – that is why I had to do the biopsy……….

    can anyone tell me if they do take the prostate out – are you still able to have sex? Rick

    • You have two erectile nerves that run over the prostate capsule. They are necessary for an erection. If possible, save both, or at least one.

      I had my prostate removed 1/10 with Gleason score of 7 on one side and 9 on the other of the two-sided organ. It did not appear that the cancer escaped the capsule. After a heavy discussion with the surgeon,who would have felt more comforable excisising both nerves, he agreed to save one, which he did. It took almost a year and a half, but I happily have regained an erection. This was just a couple months ago. One development I had not considered was that they cut out several inches of plumbing that in fact are an essential part of your overall length, so while I now have hard-ons with pre-surgery frequency, the length of the penis is several inches shorter. I still am not sure what to make of it. Luckily I had a few inches to spare. At least it works, albeit, dry ejaculation.

      Some Viagra type pills work for some, or there are shots that can make it hard, The pills did not work for me and I did not try the shots. They cold get you by until the erectile nerve gets over the trauma and starts working again.

  66. at the young age of 44 I had my first P.S.A. test.I didn’t know what 13.4 meant but freaked out anyway. So I had to have it out and did the R.P.. T2c with 3+4 and focal extension to the inked surgical margin but confined to the prostate. 12 1/2 years ago and my P.S.A. is < than .2 (.1) used to be undetectable or they changed the language. Don't know. But I feel EXTREMELY fortunate after hearing the P.S.A. readings of you other guys. Lost a nerve i think and slightly incontinent but got to see my new grandson 5 weeks ago. I think I have a while to go yet and am more worried about my unemployment status. So life is good.

  67. My husband was diagnosed with prostate cancer. He found this out after I forced him to take a free PSA test. He had a biopsy. Now we found out that his insurance does not cover radiation or chemo because it is not major insurance. I am so angry at myself because I forced him to do the free test. Now why give a free test if no one can help you when you are diagnosed with prostate cancer. Please, any suggestions.

    • Doreen,

      I am sorry to hear of your husband’s diagnoisis and insurance predicament. I do not know what part of the country you live in, but first, you migth try contacting the nearest UsToo chapter. They are a patient support organization and might know of local rersources to help with your huband’s treatment.

      Here s a list of some resources tht might also be able to point you in the right direction.

      http://www.pcf.org/site/c.leJRIROrEpH/b.5856497/k.F968/Financial_Resources.htm

      I will also check with some other organizations.

      My prayers are with you,
      Dan

  68. I don’t know if my experience will be of any use, but decided to share it. I am now 62.

    When I first received an elevated PSA reading, I was referred for a biopsy, although I was completely asymptomatic. The urologist said that he would not do one with only 1 reading. He recommended a new PSA test every 6 months in order to develop a “history”. I did that for the next 1 1/2 years, with the readings remaining around 4.

    In May, it jumped to 6.5 and I was again referred for a biopsy. This time, the urologist agreed that one was needed. The biopsy itself was completely painless.

    It showed cancer in 5 of the 12 samples taken. I was told it was a Gleason 6 and appeared to still be fully confined to the prostate. I decided on radical prostatectomy.

    Between the time the biopsy was done and the actual surgery, the government released the draft report calling the PSA test unnecessary.

    I had the surgery done by robot on Nov. 15th. When I returned a week later to have the catheter removed, I learned that the post-surgical pathology showed that there were actually 5 separate and distinct cancers, one of which would be a Gleason 10.

    Had I simply taken the “watchful waiting” approach based on the original Gleason score, that one aggressive cancer could very well have metastasized and we’d have never known it.

    This is one of the great dangers in a government panel making an arbitrary decision and a general disparagement of the PSA test.

    Sure, it may only save the life in 1 patient out of 1,400 tested. But, if you are that 1 guy, it’s important to YOU.

    And, what business does a female pediatrician have in making a value judgment about what’s best for men anyway? She says, “So a guy goes from being completely without symptoms to someone who wears adult Depends”.

    I say, “Who the HELL asked you, Dr. Moyer?” It’s none of her business.

    For those who advocate universal health care run by the government, THIS is what will ultimately happen. Unelected bureaucrats will decide what is good for you and who is “worth treating”. When the decisions are made based simply on a cost-benefit approach, there will come a time when an anonymous 3rd party will determine that it is just too costly to treat and save someone.

    Welcome to Communist China.

  69. Just finished two and a half months of external beam radiation and four month’s of anti-hormone treatment. Urologist wants me to stay on hormone treatment for at least a year, but side effects are driving me crazy – lack of energy, moody, depressed etc. I questioned the doctor on effectivness and studies of such and got no response except that it is standard procedure. Whoopie doo. Show me the facts or I’m dumping it next week. Anyone have facts of the effectivness of hormone treatment? Ron

  70. I hope you are well. I feel like I owe my story to all of you out there, so that you can be fully informed. I posted a few months back about five PSA’s in nine months of 59, 55, 79, 73 and 73.4. I haven’t had a PSA in four months, but am very proactive and am presently taking food grade hydrogen peroxide in addition to several supplements. Hopefully I had a recent epiphany, when I took charge and decided that my “sudden PSA problem” and likely cancer came about as a result of a massive abuse of anti-biotics to combat diverticulitis. How does 20-25 doses (for 8-10 days each) over 7 years sound? Everyone is free to trust the conventional approach, but I truly feel if I went this route, I would be dead by now. The probability that my likely cancer is nothing more than a profuse overgrowth of fungus is well over 99%. So I am starting on an itraconazole regimen soon, in addition to an anti-fungal diet and several anti-fungal herbs. The problem with conventional doctors is that other than one recent John Hopkins study on itraconazole, conventional medicine scoffs at fungus as a causal factor for any cancer.

    Everyone reading owes it to themselves to ask themselves or loved ones with especially breast cancer: How often have I taken anti-biotics in the past 5-7 years? You may have nothing more than a fungal problem, but your doctor will never tell you this! They are not trained in this area. Be intospective and be honest with yourselves and may all of you get well! I will keep you posted.

    Remember, if you rip it out via surgery but maintain the same diet or do not eliminate the source of your fungal problem, it will come back.

  71. OK, after only one month on itraconazole, an anti-fungal diet and a few anti-fungal herbs, my PSA finally dropped to 60 from 73.4. I will continue on this regimen and will have another test in June. The worst things for prostate cancer victims are alcohol and anti-biotics. Try Braggs Apple Cider Vinegar for indigestion or for diverticulitis. Will keep you posted in June. The best to all.

  72. Dan,

    Thanks for sharing your story. My 54-year-old husband’s story sounds much like yours with similar PSA and Gleason numbers. He had 15 lymph nodes removed at the time of his prostatectomy, and two of them were cancerous. When I asked his urologist whether he should have any radiation, I was told that there was nothing to radiate. Will you address this comment? Should he have had radiation? I’m always afraid that we are not getting the correct answers. My husband is currently doing the androgen deprivation therapy as well. Thanks for any imput you can give me.

    • Susan,

      With more than 26 varieties of PCa, each case is unique and there is no one size fits all treatment.

      My “salvage” radiation was directed at the prostatic bed and remaining lymph nodes. Did you press your doctor? You are always entitled to a second opinion. That can provide a good deal of clarity.

      My prayers are with you both. Dan

  73. Thank you for sharing your experiences. Generally I find men don’t share or take the opportunity to learn from one another. You set a wonderful example — one that I hope others will follow.

    May you go from strength to strength!

  74. I get annual checkups and my PSA was elevated in 2009 to 6.9, referred to urologist, who did nothing, no biopsy, nothing!! Two years later PSA was at 23.0, sent to a different specialist who ordered a biopsy, diagnosed with stage VI prostate cancer, had surgery in July 2011, recovery went smoothly aside from discomfort about to weeks after surgery, I think it was due to early delivery of Lupron, (about four days after surgery), PSA was down to 0.08 first check after surgery, to most recent had elevated to 6.90 and 6.81 respectively, only had the one hormone shot after surgery. I did do about seven wks. of radiation therapy, considering other avenue of treatment currently!!!

  75. My PSA was 288 on routine blood work in January 2011. Had radical prostatectomy with 26/71 lymph nodes positive for tumor in September 2011. Many tumors in bones noted. Then got radiation to 2 sites in the spine and Provenge 6 weeks later in late November. PSA rose to about 20.8 after being about 6. Then I went to Church for Healing Sessions. Now PSA is 0.6 (for the last 4 months) and PET SCAN shows no tumor anywhere!!!

    Advice: Try healing sessions at Church and Provenge. It worked for me.

    May God bless you and guide you!

  76. Thanks for your story of hope. I wonder if you have ever heard of prostate cancer treatment using LASER ABLATION ? Never heard of it before. Thanks

  77. In spite of the many PC stories, here’s mine, because (1) some posts urge that we do so and (2) some of my story may be uniquely useful…. I’m alive because our local lab made a mistake. At every annual physical my PSA was about 3.5, which my doctor said was OK, but in 1995 the lab lost my blood sample, so another was submitted. Then the first was found and the results of both came back. The first was 3.5, which would have meant waiting until the next annual test. The second was 5.8, so biopsies were taken, showing aggressive cancer. I went through the usual succession: denial, terror, tears, aggressive study, then applied to the famous Dr. Walsh for a radical prostatectomy. He said I was too old at 70, so Dr. Jerome Richie of Boston, who had worked with Dr. Walsh, did the job. Just in time: 1 of the pair of vital nerves was lost, but 1 is enough for continence and sex. Five months later my wife and I drove from Maine to Alaska and I hiked the Chilkoot Trail. Three years later I finished hiking the Appalachian Trail. In 2004 I hiked to the bottom of Grand Canyon and back, and I’m still hiking at 87. My PSA remains at zero, while close friends who “watchfully waited” in prolonged expensive agony with messy complications have died. “Benign neglect” (watchful waiting) for me would have cost Medicare lots more money, and made my years far less pleasant. Details: for me the biopsies were just slight twinges, but I hated the 2 weeks of post-op catheter. I suggest (1) for that operation get a surgeon who has done (or been in on) 500+ of them, (2) avoid robotic surgery, and (3) read Dr. Walsh’s book. THANK YOU PCF.ORG FOR YOUR WORK AND THIS VALUABLE WEBSITE !

    • Dick,

      Thank you for sharing your story and am pleased that you like this resource.

      Wishing you much health and many happy hikes going forward!

      Dan

  78. It has long been thought among scientists that DNA damage leads to cncer.

    Please read below to learn more about prevention and a scientifically proven combination of 4 antioxidants- Prevennia.com

    Scientists discovered that 4 antioxidants (patent pending) block DNA damage caused by the reactive metabolites of Estrogen.

    •Over 40 years of scientific research at the Eppley Institute for Research in Cancer and Allied Diseases, University of Nebraska Medical Center,

    •Over $37,000,000 in grants from the National Cancer Institute, National Institute of Health and the Dept. of Defense

    •Over 190 peer reviewed articles.
    http://www.experts.scival.com/nebraska/expertPubs.asp?n=Ercole+Cavalieri&u_id=204

    SCIENTISTS:

    Dr. Ercole Cavalieri

    Personnel
    http://www.google.com/#hl=en&q=ercole+cavalieri+metabolism&revid=1113466925&sa=X&ei=bcWaTpnKIsm5tgfG8e31Aw&sqi=2&ved=0CBkQ1QIoAA&fp=1&biw=1187&bih=512&bav=on.2,or.r_gc.r_pw.r_qf.,cf.osb&cad=b

    University of Nebraska- http://www.experts.scival.com/nebraska/expert.asp?n=Ercole+Cavalieri&u_id=204

    BiomedExperts (This could be removed as it says the same as the “Over 190 published articles above”
    http://www.biomedexperts.com/Profile.bme/203928/Ercole_L_Cavalieri

    Drs. Eleanor Rogan

    Personnel
    http://www.google.com/#hl=en&sugexp=ckh&gs_nf=1&cp=13&gs_id=1e&xhr=t&q=eleanor+rogan&pf=p&output=search&sclient=psy-ab&oq=eleanor+rogan&aq=0&aqi=g1g-K3&aql=f&gs_l=&pbx=1&bav=on.2,or.r_gc.r_pw.r_qf.,cf.osb&fp=76b71a3030273bc6&biw=1051&bih=479

    University of Nebraska-
    http://www.unmc.edu/publichealth/Eleanor-Rogan.htm

  79. I was diagnoised with prostate cancer in Sept 2011 and under went surgery on 16 Jan 2012 using the DaVinci robot. In between I received lots of support and advice from former bosses and colleagues. One of the most helpful was a teammate who loaned me Dr Walsh’s book and shared his experience of his own recent surgery. My doc in Louisville also arranged pre-surgery physical therapy for me designed to help me strenegthen the pelvis floor muscles which I think combined with post-surgery PT, shorten my time with leakage. I am 5 months post surgery and am pad free for more than a month. I attend regular meetings of a support group which has been extremely helpful in my recovery. Did not know about this resource before my surgery, but glad I heard about when Mike M was on a Cincinnati Reds broadcast.

    • Tom,

      Thanks for writing. I am glad to hear that you are doing well following your surgery, though I am sorry you had to go thought it at all. Yes, the pre-surgical physical therapy can make a tremendous difference in abating the leakage problem.

      Glad you find MNYM helpful. Stay in touch.

      Wishing you abundant health,
      Dan

      • What is your current status at this time?

        • I am currently in the final three months of two years of ADT. Stage 4 metastatic. My oncologist gave me a 30-40 percent chance of being considered cancer-free in three more years…

  80. Hello, I have Intermediate level Prostate Cancer , Gleason 7 , PSA 6.5, my dilemma is that I have been given a choice of 2 ways to deal with it. 1 is the permanent seed prostate brachytherapy , radiation seed implant or the surgery which the Urologist has said that he can save the nerves on the left side of the prostate but uncertain of the right side , depends how far the cancer has reached to the outer wall , both sound like they can fix the problem , but which way to go. ???

    • Hi Tony,

      Sorry to hear about your diagnosis. As I am not a medical professional, I can not provide an opinion on what might be the best route to take. As a patient, I can recommend that you research both options thoroughly so you weigh the pros and cons of each treatment. For further clarity you might seek a second opinion which may be very useful in helping you select the treatment option that is right for you.

      Wishing you all the best and good health going forward,
      Dan

  81. I was recently diagnosed with prostate cancer (Gleason 6 (3+3) at age 60). I have recently lost both my first cousins to this disease and lost my father to it in 1989, so after careful consideration and discussions with urologists and radiation oncologists, I have decided on surgery even though I have a relatively early stage. Cancer was found in 15# of one core of a 12 core biopsy.
    I watched my father’s disease progress and know that he was not diagnosed until he had stage 4 cancer, I don’t want to give this disease another male family member, so I am opting to get the cancer removed now fully understanding the possible side affects of the surgery.

    I have read your blogs and wish you well when you come off your treatments.

    • David,

      Good luck with our treatment. I am glad to hear so much clarity in your voice. I often think it’s the most important tool we have. You are in my collective prayers for so many.

      Dan

  82. I’m a healthy active 60 year old diagnosed with PC in March. Gleason score of 8 and chose surgery. Had a RP April 12. Recovery went well, back to the gym on May 30. I developed a small inguinal hernia as a result of the surgery and had that fixed two weeks ago, so another six weeks of light activity. Have had a real problem with incontinence. No problem overnight and when sitting. However have virtually no control while walking around or standing for long periods. Go through 4-6 heavy pads a day. Did Kegels and other exercises religiously until hernia surgery, have to wait another two weeks to start again. Have some regrets I didn’t opt for robotic as all I’ve heard is control resumed rather quickly for those who had chose that option. My doctor guided me away from robotic due to high Gleason score and number of samples with cancer. On the plus side PSA is < 0.2 so no further treatments necessary at this time. Any one else that had a radical that can provide encouragement for a positive long term outcome with control?

    • Hello, I was diagnosed with PC in 2005 and, again, in late 2008. I elected, the first time around, for a non invasive form of radiation surgery called CyberKnife. Out of 350 “pioneers” of the treatment, I was one of the 3 “pioneers” where the treatment “failed” and I was, once again, diagnosed with PC after undergoing quarterly exams since my initial surgery. I would make the same decision for PC treatment now as I had made then after exploring all possibilities and their outcomes.

      Unfortunately, for me, my PC returned and I was told I had to make a fairly quick decision for treatment; the PC was considered “aggressive”. I elected to have RP and sought out Dr. Walsh.. what was available to me, when I was first diagnosed in 2005, was no longer available; Dr. Walsh had retired. I was referred to a disciple of his in Pittsburgh.

      I received a prompt return call from Dr. Walsh’s disciple on a Sunday evening during dinner. I put him on speaker phone so that my wife and I could hear what he would suggest… well, what he said brought my wife to tears; he basically said that when I elected radiation therapy as my first option, I ruled out the potential for success of surgical options. He told us that he would most likely not be able to treat the returned PC successfully and, given the aggressive diagnosis, I would most likely face the real possibility of death or, being left incontinent. He said that removal of a radiated prostrate, was like removing all the melted cheese from a grilled cheese sandwich; almost impossible. Radiation “melts”/fuses the prostrate tissue to surrounding organs making it a very difficult procedure. He did say, however, if he were in my position, there would be only one Surgeon he would recommend and that was Dr. Jame Eastham at the Memorial Sloan Kettering Cancer Center in New York (http://www.mskcc.org/cancer-care/doctor/james-eastham). I contacted Dr. Eastham and I can’t tell you what a life saving experience it has been.

      I underwent the surgery and, due to the radiation, there were complications. I had to undergo at least 8 more surgeries to control radiated tissue regrowth that kept obstructing my urethra which, as you can imagine, was extremely painful when you could not empty your bladder. I spent almost 18 months, post-op, with a catheter and not being able to lift over 20 pounds. I was virtually home bound for much of this time.

      When control of the radiated tissue regrowth was finally taken care of, I had been left with urinary incontinence. We tried everything to get control but, in the end, I was fortunate to have Memorial Sloan Kettering in my corner. Dr. Eastham referred me to Dr. Jaspreet Sandhu and, once again, I underwent major surgery for the installation of a artificial urinary sphincter and the rest, as they say, is history.

      I now have been cancer free since my RP and go through 2 pads a day to account for minor urininary leakage. The main point here is that I now can leave the house, exercise and travel with confidence. All I need now, is a job!

      The lengthy time it took to remove reoccurring radiated tissue and to get my incontinence under control, has left me without a paycheck for a very long time. At 63, I have exhausted what I had for retirement with the cost of the medical bills. I pray that your incontinence issues have been resolved and I hope that you will pray that I ultimately find a job.

      Best Wishes and Good Luck to All!

  83. Dan,
    I thank you for the courage and the ride you are about to provide. To the many healing on here and commented my heart goes out to you and wish you speedy recoveries. Unfortunately, I too have received the news of having prostrate cancer. For me, it was Stage IV, D and moved beyond the prostrate. I had the biopsy done when they discovered the PSA score to be 177.8. I am on Hormone therapy and I landed in a clinical trial getting chemotherapy. Currently I have a PSA score of 0.2 and have two more chemo treatments to go. I only hope the news stays good.

  84. I have recently been diagnosed with PC with a 7 Gleason score. I am a Canadian and would appreciate any feedback on HIFU treatments.. One of the comments on your blog sounded positive to this procedure and more input by your readers would be helpful.

  85. My husband was diagnosed with stage 4 PC in Sept 2011 at the age of 61. His cancer had metastasized in the bones, pelvic are and some lymophnodes. After intense radiation sessions evry day for a month, and Xgeva for the bones and Hormone Therapy , we have just received recent results that it has spread further into the lymphnodes and there is now a 4cm tumor in his lower spine. We are back on Lupron for now and if the next CT scans don’t show any improvements they are talking possible Chemo early next yr.

  86. All such brave and heartwarming stories…

    I am 51. Psa went from 40 to 65. Biopsy results all 12 specimen tested are positive, one was an 8, the rest were 7. MRI and bone scan are negative and my urologist was ecstatic and very surprised.

    So now I ve seen 2 surgeons. One advises to go with da Vinci. The other advises me to at least consider radiation/ hormone, citing the likelihood of the cancer spreading, even though the scans don’t show it. Speaking with a radiation therapist tomorrow. I feel like I’m stuck in the mud and not sure what to do.

  87. Hi Dan,
    I am a 66 yr. old who was diagnosed with Gleason 7 PC in Sept 2012. Underwent a total radical prostectomy in November. Resulting pathology report was not good. I will be starting radiation therapy as soon as I have healed from the surgery and have regained my continence. Thanks for starting this blog . . . it helps to know we’re not fighting this alone.

  88. Was diagnosed two years ago at age 59. Gleason score was 4+3=7. Underwent external beam radiation and psa has been dropping steadily. Today I got the results of a MRI of my lumbar spine because I had developed new onset of back pain. Neurosurgeon said MRI showed a “cyst”on my lumbar spine and has ordered a bone scan. Last PSA was two months ago and it was negligible. Is it possible for PC to spread without a corresponding increase in PSA.

  89. Dear dan
    You re inspirational psa 26 gleason 9 on 4+5 I am 59 I am on hormone therapy and my psa dropped to 3.2before now IMRT 39fractions my urologist said no to surgery due to advanced outside capsule however no bone mets r lymph node involvement
    Urologist aiming or cure do you think this is right
    My I’ve felt we shoul have pushed for surgery I trusted urologist
    Please can you advise me

    • Walter,

      I am sorry you have to deal with this disease. I am not a medical professional and this can not advise. I can, however, provide a fellow patient’s perspective.

      Once the cancer is identified as having reached beyond the prostatic capsule, many physicians will recommend radiation over a prostatectomy. However, some will still recommend removal of the glad. In the end, you need to select the treatment option that you believe is right for you. You are entitled to a second opinion. This might give you more data and provide further clarity that will give you peace in making your final decision.

      I wish you and your family strength at this difficult time. You are in my collective prayers.

      Dan

    • Actually, Walter IMRT might give you an advantage, as it not only treats the prostate itself but also the surrounding tissues. Since you say you have extra-capsular disease the radiation might be a better treatment.

      By way of background I am Urologist who has been treating prostate cancer for the last 30 years. I am also a prostate cancer with stage 4 disease.

      I hope your treatment is going well.

  90. Thanks, Dan for your kind words on 12/13/12. My PSA from 2/12/13 is <0.064. I will have my 3 month post surgical(Radical Prostectomy)follow-up this week. I will learn then the Dr's timeline for starting my external radiation. My best wishes for your's and all the other's continued recovery. I will keep you all in my prayers.

  91. Dan, I certainly can relate to all of this. I am a practicing Urologist for 33 years in New York City and have treated and helped many men with this disease. Little did I know that 2 months ago I myself would become a stage 4 prostate cancer patient. I had my five minutes of depression, asked “why me” and immediately answered myself with “why not me, I am just a man like everyone else”. Since that point I have maintained a very positive attitude and started treatment within days of my discovering that I had this disease. It is interesting to note that my PSA one year ago was 2.4, and rose to 76 at the time of diagnosis. My diagnosis was really an incidental finding due an MRI for chronic back pain due to bad discs in my spine. It reinforces what those of us who diagnose and treat prostate cancer already know i.e. PSA is not the perfect screening tool, but it is the best we have at present. Fortunately my PSA is now 0.2.

    You and I now have something in common, prostate cancer. We also know the right way to fight, and move on with our lives. Keep the faith, and may we both have many years to come.

    • Howard,

      I am sorry you had to be one of the 1 out of 6… We will get through this. We will survived,

      Wishing you abundant health,
      Dan

      • Thanks for the good wishes. We both strive to help others with this disease. In doing so, may we help ourselves as well.

  92. Dan,
    Thank you for starting this and sharing your story. My father has had an enlarged prostrate for years, just had neck surgery and had two urinary tract infections. We just found out today that his PSA level jumped from 4.1 to 5.8 in 3 weeks time. He is scheduled to have an ultra sound and biopsy on Tuesday 4-30-2013. As you can imagine, my sister and I are very concerned. My hope is that if there is PC that they catch it and we can start getting rid of it now. He is 64 years old. I have learned so much just from reading your blogs. Thank you so much for sharing your story and in doing so, helping us uninformed people get a better understanding of all this. Good luck to everyone and best wishes!!

  93. Dan,

    Thank you for your story and courage and the very forum you have created here which allows us to follow your progress and that of others. It is the very best therapy of all!

    Thanks, again, and our thoughts and prayers are with you and with everyone here as, in the end, we are all survivors.

  94. Dan,

    I am 63. recently I took a prostate biopsy and here was the result –

    Bilateral minimal adenocarcinoma Gleason 3+3 score 6 in sum total 0.94mm and in a total sum of core length from both sides of 147.0mm

    I have been given three options i.e. 1) surgery 2) Chemotherapy and 3) active surveillance
    After discussing with my consultant he suggested active surveillance with regular tests every 3 months and biopsy every 18 months.

    Any suggestions before I make the decision?

    Thanks,
    Angus

    • Hi Angus,

      Not being a medical professional, I cannot offer advice. From a patient perspective, I can suggest considering a second opinion which can provide additional input and clarity for your decision. You can also find more information on active surveillance at http://www.npsn.org.

      Wishing you clarity and abundant health going forward.

      Dan

  95. Debbie Daskiewich Reply June 11, 2013 at 12:09 pm

    Hi Dan,
    I just wanted to thank you for your blog and the wonderful work that you do. I was able to reiterate information to my father throughout his fight with metastatic prostate cancer. He lived much longer that expected due to the advances made with medications (both experimental and newly approved) and was able to truly live life to its fullest until the last couple of days. You and all of the others who share were a great source of comfort to my dad. Thank you for sharing and doing amazing work.
    Debbie

    • Debbie,

      I am sorry for your loss but pleased that this community was a source of support and comfort for you and your dad. I wish you peace and the comfort of many warm and wonderful memories going forward.

      Sincerely,
      Dan