Embrace of the Brotherhood

Living within the prostate cancer brotherhood is a highly personal experience.

All of us who have been diagnosed with prostate cancer are members of a brotherhood–an order that provides unique understanding, perspectives and bonds. In the 17 months since my diagnosis, I have learned that as with many fraternal orders, there are also levels. However, in our case, progression through the ranks is neither desired nor encouraged.

In the lowest and perhaps preferred rank are those diagnosed with low grade cancer, for whom we hope watchful waiting or proactive surveillance is all that they will ever require. But, their fears and doubts are the same as all members. What if my PSA levels rise…? When might they rise…? Am I doing enough? What about my family…? Then there are those whose initial treatments were successful, and who have passed that magical milestone and are declared “cancer-free.” For these, there is heartfelt celebration for their victories. I know. My heart lightens and my smile widens everytime I meet a fellow member who shares their marvelous news. I love to hear these stories and I share them with others to provide encouragement and bolster hope.

In the upper ranks of the order are those who have been diagnosed with advanced, metastatic disease. This group has two levels: those, like me, who are in primary treatment and still hope to hear those words–“you are cancer-free”–in a few years; and finally, those whose disease recurs and for whom life becomes a continuing series of treatments and remissions.

Whatever our status is within the order, we are all the same. All of us understand, all too well, the fragile nature of our human existence. We accept and lament our realities. We hope for good outcomes.

Life in the order provides remarkable experiences. Priorities are clear. Exchanges always begin with a sincere “How are you doing?” and a caring visual check or two to confirm the answer. Treatment plans and remission updates are often shared in hopes of providing some data that might be of use to the other. Even what was once a casual greeting in emails,“hope all is well,” takes on new meaning. When one of the brothers falters or has an obvious physical limitation due to current treatment, the physical assist and emotional support are always at hand. It is a kinder, gentler world instilled not by a lack of testosterone, but real human compassion and spirit. You can read it in many of the readers’ comments that appear on this blog.

This past week, I spent time with two extradordinary gentlemen I have had the honor of knowing for some time now. Both are battling recurrent disease. One was a powerhouse in the financial world prior to retirement, the other a powerhouse in government. Both are ardent advocates for curing the disease and big supporters of the work of the Prostate Cancer Foundation. Together, we attended PCF’s annual Scientific Retreat.

During the meeting, the toll that their current drug therapies are extracting from them was visible. Yet, they persevere, moving forward with determination and, as one of them says, “hoping to get another five or more years” out of his current treatment. They have supported numerous clinical trials, helping future patients while also trying to beat their cancer. When one looked at me and said, “Dan, I am blazing trails for you should you ever need them,” I could only put my arm around him and say, “Stop. You’ve blazed enough trails. Let’s see an end to your cancer.”

I know these two gentlemen are sincerely following my progress and hoping I never cross over into their ranks. I too follow their progress and hold them in my prayers and my esteem.

Following the retreat, I was invited to fly back to San Francisco with them on a private jet. As we flew to San Francisco, these two men sat on the other side of the aisle. They chatted a bit about their current progress and then dozed, I could see that the week’s schedule had been taxing. The aisle on the small jet provided but a small separation between them and me. I wondered if I would ever cross that symbolic divide. As I watched them in silence, I knew that, as brothers of the order, they would do anything they could to keep me and countless others from joining them–to keep us from rising in the ranks.

When we landed at SFO, we said our good-byes and embraced.

An embrace from a fellow member of this fraternal order is like no other. Unspoken, and in a way no other exchange can, it says: I wish you peace. I wish you strength. I wish you life.

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39 Responses to “Embrace of the Brotherhood”

  1. A moving encomium, Dan, especially for our Stage IV brothers, who fight on so valiantly.

    I am a member of an advanced cancer Internet board sponsored by Malecare, which includes those of us sitting on both sides of the metaphorical aisle you so aptly describe. These are men (and their wives and daughters who speak for many of them) whom I have come to regard as comrades-in-arms. Some have just recently crossed over the aisle; others fight on against their metastatic disease exactly as you described the two gentlemen you were with; others have fought the good fight and have passed on. (And those are emails that always bring genuine tears.)

    I have never met any of these men personally, nor have we ever embraced physically, and likely never will. But I know precisely what you mean about this fraternal order of which we each wish we were never members, but since we are, we embrace—anyway we can.

  2. Amen. And a strong, warm embrace to all three of you.

  3. just begining my journey, surgery on Oct 4th, scary what the outcome will be as no one can predict

    • Larry,

      Sorry to hear about your diagnosis and I, like so many men and their families, understand the scare factor. You are not alone.

      I always try to counsel newly-initiated brothers to take a deep breath and go one step at a time without putting any carts before the horse. Remember, with more than 25 genotypes (varieties) of prostate cancer, many men have less aggressive types. Surgery is often the only treatment ever needed and I hope this will be the case for you.

      My prayers are with you and your family. And don’t rush your recovery period. Lots of delicate structures need time to heal!

      I wish you abundant health going forward.

      Dan

    • Larry,

      How are you doing?

      • Dealing with the incontence. 52 pads in 14 days. I think it is slowing down. Living by my self with the post surgical depresson, lost of function is ruff! Walking when ever I can.

        Thanks for asking Jay

  4. Very nicely done. Appreciate all you do. JM

  5. We corresponded earlier. 4 years after surgery and radiation my PSA is still 0.0 I can get an erection and only side effect is slight leaks handled by a pad. I wonder if this is due to the skill of the surgeon? My gleason was 9 and reason for radiation was the possibility they had not got it all on the margins. Bob

  6. Touching & scary. As a stage 4 Pca diagnosis feeling pain in my arm for the first time & wondering Is this the beginning of the end? but I will continue to fight on regardless

    • Bob,

      Let’s keep you on my side of the PCa aisle!

      I know the game of second-guessing pain. I’ve done it a few times. However, I force myself to reign in those run amok thoughts and rely on my quarterly PSA results. In my case, I remind myself that my random pains might have more to do with my Lupron (muscle fatigue and loss) and that fact that I am indeed over 50!

      Do remember, when in doubt, it’s always a good idea to call your doctor. He or she is the expert!

    • Bob, I have been in the “what if the pain is” seat numerous times over the past 6 years 9 months and a few days… thankfully only this year did that fear become a reality… I thought I had pulled a muscle in my hip during a workout or while playing raquetball (yup, was still playing and beating my 28 year old son)… I continued to exercise and play raquetball for about 6 weeks before going to see the doc about it…he was sure it was nothing… I, this time, was sure it was…unfortunately I was right… but still caught it early enough that 5 radiation treatments later the pain was gone… added Bicalutamide to the Eligard injection I was on and PSA’s started to drop again… next test on Monday…

      So, as Dan said, if you have pain and have any doubts about it, it’s always better to have a doctor check…but don’t be afraid to ASK for a test, doctors are only human too!

      Fight On!

  7. 8 years after radical…PSA <0.1, which is the lowest measurement most labs report in this area. Gleason was 7, have not had radiation at this time. My two brothers and I were diagnosed within 1 1/2 years of each other (Mom had breast cancer 45 years ago and is now 88!). My great sense of humor has allowed me to adjust to the side effects of surgery. I wish you all a full-life each day you get out of bed.

  8. Bob…good luck with your treatment. I am a 17-year survivor (radical prostatectomy in 1994)and now have recurrent prostate cancer. I have been on intermittent ADT treatments for the past 10 years. My University of Chicago Hospital’s oncologist told me that “you are never “cancer free.” Just hang in there and roll with the punches.

  9. Wonderful to read all of the amazing, powerful and healing comments. Realizing you are not alone is of great help, realizing there is the aisle, whether it narrow or wider is too. But most of all. addressing the problem and taking the appropriate action is the way to go. My Dad ignored it, 22 years ago and crossed over the aisle and then some. Early detection and treatment, mixed with a sense of humor and fellowship will keep ALL on the other side of the aisle for another 100 years. Peace, healing and love to all.
    ~Char

  10. August 2010 I had robotic surgery, August 2011 I reformatted my entire business. It has been a whirlwind, but thank God for early detection at age 52. As a very active Mason I also read the brotherhood comments with great interest. Yes cancer survivors are part of a brotherhood and we all need to stretch forth a hand of relief.

  11. Dean and Jack have my story too. Radical surgery 12 years ago. Gleason 7. PSA <0.1 for 11 years. Thought I had "beaten it" but now the PSA re-appears. Not significant yet, but scary that it has surfaced again at all and it keeps me from sleeping well. But at 75, with a wonderful wife and family, and close to shooting my age on the golf course, I try to keep it all in perspective.

  12. As of 9/26 /11 I have become part of the brotherhood. I had a biopsy on 9/22/11, of the 12 sticks that were taken, 4 come back as positive. My Gleason score was 6. I’m 55, in decent shape, I’m a high school teacher and coach. No family history.My wife and son obviously know and I have told two very close friends. My mother, brother,sister and others do not know of my diagnosis yet. With those of you that are there/been there I need your support and you have mine.

    • Jay,

      You are not alone and we are with you.

    • Jay,

      10/18/10 was my diagnosis date. 12/01/2010 was radical robotic surgery including all lymphs. 3 tumors with high Gleason 7. PSA orginally was “only” 4.1 but had moved more than a pt for three straight years so I decided to check. Good thing! Only 59 so big surprise. Prostate was 4 times normal size and already attached to bladder.I am so thankful I did it and the outcome at 10 months is excellent with expected complications few and of nominal effect. The hardest part after accepting it myself was sharing with others but you HAVE to do it. The brotherhood support is great but the family and friends are strongest. Good Luck and keep the vision of success always.

    • Jay,

      I am sorry I have to welcome you to our club. Telling my daughters, ages 22 and 24, was the hardest thing following my diagnosis. They are young and carefree, just beginning their lives. I didn’t want to burden them with worrying about their old man. But, I took a deep breath and told each and they are fine and wonderfully supportive.

    • Jay,
      April this year biopsy and cancer diagnosis. I lost a few days. For the first time in my life something stopped me in my tracks. Like somebody put Abigail label on my forehead. ‘CANCER’. I was no longer a regular guy. I was one of those unfortunate with cancer. There were times I had to pull over because my eyes were full.Shock. Fright. I took a couple weeks to regain any direction. I needed help. I said a prayer. I am not the best Christian, but no one else could help. I gave it to Him and asked for guidance. I pulled myself together. Did my research. Contacted some brothers in our shoes.

      June 29th I had the Davinci process prostatectomy. Catheter out on 7 days. Went back to work light duty on 10th day. Incontenance quit at about three weeks. Working on the impotence issue.

      One thing I learned is to make use my knowledge, My common sense, my research, info from my doctor, and my feelings from my prayers and make the decision on what to do. Do not second guess yourself. Follow thru on your decision knowing you made the best decision for your cancer. Positive mental attitude and the desire to beat your cancer are big parts of your cure. I found family and friends werehelpful after I learned to speak about my cancer.

      On Aug 1st my doc agreed to full work ability. I feel good with my progress. I owe it to family, overcoming my fear, being decisive and agressive with my recovery, and most of all, my prayer asking Him for help. I got so bold I told my doctor”I am already a survivor, just a battle or two to win”. I am winning, as I know you can.

      Prayers shipmate.

      Steve
      7574369886

  13. Dan – nice post. I pray you stay over there on that side of the aisle. It’s getting to crowded over here, with good men who deserve better.

  14. Jay,
    I know the feelings you are having at this time. I had a similar result 7/09 and finally had robotic surgery 8-11. The cancer had advanced but the pathology report indicated all margins were negative. If I had it to do over again I would have had the surgery in ’09 just to get it over with at that time. Wishing you well no matter what your discision is at this time.

  15. Dan,

    I just finished reading your blog, beginning at day one. Thanks for sharing your story and I wish you the best with your treatment.

    I was diagnosed in January of this year. PSA only 3.8, but rising a little too rapidly. And, my urologist kept feeling something on the right side. He advised a biopsy. Thanks to his abundance of caution, my cancer was caught very early. Stage T2a, Gleason of 6 (3+3) with nothing on the right side, all on the left. While a diagnosis of cancer is never what you want to hear, I am so, so thankful mine was caught early.

    Because my prostate was the size of a VW beetle, I was put on Lupron to shrink it and slow down the cancer growth until my radioactive seed implants on 7/20.

    I had a horrible and very unusual urinary reaction to the surgery. In 2 1/2 weeks I was catheterized and un-catheterized 5 times. That is now behind me and I am dealing with more common urinary complications and waiting for the seeds to do their job (they decay completely over 20 months.)

    You mentioned in one of your blogs the importance of having a goal. At age 64, I completed my first Ironman Triathlon only a month before my diagnosis. Now, nine months later, I have resumed training and will do my second Ironman in May, 2012. I am determined to, again, be an Ironman, this time one who happens to have cancer.

    One last comment: I have made a point, when they are interested in hearing, of sharing the most intimate details of my last 9 months. Cancer is a disease. It is not something about which to be embarrassed and it is important that men and women, alike, feel free to speak about it openly. Doing so could save a life.

    Thanks, again, for providing this forum.

  16. Hello All,
    I appreciate all the support. The first fews days after my diagnosis were a bit unnerving. I had a second consult last week, along with my wife, with my urologist.I am doing better mentally and emotionally. Having a PSA3 test tmorrow. My urologist told me to seek a second opinion and he is setting that up with the regional medical center.Last Saturday I ran a 6K obstacle course. It was great! Attended my first support group meeting. All members of my immediate family know of my diagnosis. I feel like a weight has been lifted of my shoulders. I have a PMA, working out, eating healthy and loving life. I know I am not over this but I do know that there are so many people a whole lot worse off than I am. Whether they have cancer or other medical issues.

    Everyone Stay Strong!

    • Jay, glad to hear that your are feeling better. Keep in mind there may still be many high and lows (I had a pocket full of them this past week), but you have opened yourself to your reality and others. That is so liberating!

      Stay in touch.

  17. Just had Davinci Prostectomey on October 18th. Catheter to come out October 26th.PSA 2.70 before surgery. Gleason (3+3)6. Thanks for sharing. This is a fraternity I never expected to be a part of. Thankfully blogs like yours help understand and hope.

    • Ricky,

      There is nothing like getting the catheter out. You are In good company and my prayers are with you. Keep us posted on your progress. –Dan

  18. Brothers, robotic surgery after being diagnosed stage 2 prostate cancer, this coming at the same time I was diagnosed with Hodgkins Lymphoma. 2 cancers, 1 choice survive. Lymphoma in remission, prostate removed, I live on to see another day. It is a time out of your life well spent to be alive and helping others through their difficult times. Never give up, you will beat the demon Cancer

  19. Dan,

    Thank you for providing this forum for men to read. I am 47 years young, 15 weeks post-op and like many, have great days and some – well, you know the rest of the story….My experience other than my own personal journey and some new friends from the brotherhood has been one of limited discussion and non-recognition of having the disease. This will never change unless we get men to think differently about their health and this specific cancer. I hope to do my small part in the future, but this is a high mountain we must all climb together. I suppose there is no application fee for entry into the Order, but as a new member, I hope our paths cross in the future.

    Pete C.
    Prostate Cancer Survivor & Advocate

    Completed the Malibu Half Marathon yesterday morning: 2:05:04 with a smile on my face:)

  20. Hi Dan im glad that i came acrose your website.i’m a stage3 prostate cancer surviver.my psa was 43,byopsy was a gleasen was 7.after the surgary my gleasen was hight 9. My prostate was 80% gone. My uroligist told me that he got it all. one month later i got a pas done two week later i got a call from my uroligist he told me that the cancer spead.he told me that he made a app.with a oncolgest to get radeation. the ongolgest toll me that he said that i hade 2 or 3% chance that the radiation would work did not think the radiation would work.he was right. im on my secound round of hormon injection. iwas also dinost with thyroid cancer.got the surgary and im on mid for it. it good to find a plce were a person can go and tell what on there mind that you for your time.roy

  21. God Bless all my Prostate Cancer brothers! I chose the 44 treatments of radiation and my PSA has dropped to .07. I’m elated. However, I have cancer. I’ve won a round.
    Thanks for all your testimonials and heart felt comments. It makes me stronger.
    God is good, all the time; all the time God is good.

    God Bless and Merry Christmas!

  22. Hey Guys – Have now joined this very august group. Recently diagnosed but yet to talk to surgeon re: treatment. Have talked to several men who have gone through several different procedures, recently and a long time back. Researched on line and read books and articles. PSA 18, Gleeson 8. Mentaly have been up and down lately. I receive strength from reading all of your posts. I think I’m just begining to suck it up, man up, and get on with it. My heartfelt thanks to all of you and wish for success in your treatments. Happy Holidays.

    • Don,

      Sorry you had to join the brotherhood, but rely on us whenever you need to.

      Keep me posted on your progress.

      You and your family are in my prayers.

      Dan

  23. Guy’s – It’s now almost four months post surgery. PSA after surgery 4. Not a pleasant situation and now working with Doc to determine what treatment would be appropiate.There is also a clincal trial nearby looking for candidates which fit my description, using Sumarium 153 and various radiation techniques. Not sure I can get in as I have no insurance other than VA. Anyone have information about this drug or other clincal trials they have attended? Also, researching diets low in fat and high in Soy, ie; Asian diet. Any experience with this type of diet and success or not? Looking for an advantage as am opposed to hormone therapy. Wish you all the best, and ask that we expose this site to many more brothers so that information can be explored. Don

  24. whoah this blog is fantastic i like reading your posts. Stay up the good work!
    You realize, many individuals are looking around for this info,
    you could help them greatly.

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