Treating the Treatment with My TEAM

Armed with an expanded list of prescriptions, I find relief and the answer to the question: Who should be the primary care coordinator for cancer patients?

 

I abide by the adage that it takes a village to raise children. I now fully appreciate that it takes a team to care for cancer patients. My epiphany came during the same week that some cancer advocates in my network were debating whether a patient’s oncologist, urologist or internist should be the primary treatment navigator. Just two days ago, I added my two cents to the debate saying via an email that I wouldn’t give up my oncologist as my treatment point guard for anything. I still wouldn’t. But, as owner of my cancer franchise, I  know first-hand how crucial it is to have a well practiced team that knows how to win a passing game.

Using my past few weeks as example and a few more basketball analogies…

1. Experiencing severe and highly unsettling palpitations, I emailed my oncologist (my point guard) for guidance. He passes the ball immediately to my internist for an EKG and preliminary assessment. In basketball, the point guard is also known as the team’s floor general and the best ball handler on the team. In football terminology, the point guard is a basketball team’s quarterback. The point guard is essentially the team’s captain, and his/her job is to make his/her teammates better and to hand out assists. At this point in my journey, I see my oncologist as the one who is going to make the fantastic scores against cancer and play a pivotal role in directing the team to victory.

2. Upon reading my EKG and spotting an aberration, my internist (my shooting guard) passes the ball to a cardiologist. Shooting guards can also be the team captain as well. A quality shooting guard should be able to consistently hit 20-foot jump shots. Besides being able to shoot the ball, shooting guards must also have good ball-handling skills because they have to be able to create their own shots off the dribble. They should also be able to make good passes.

3. After ordering a complete set of cardiac tests, my cardiologist (my power forward) quickly assess that, with no underlying cardiac disease, there is no point to be made from his vantage spot on the court and passes the ball back to my internist for the next play. A power forward plays a role similar to that of the center, down in the “post” or “low blocks”. On offense, he can “post up”, playing with his back to the basket, or set up for mid-range jump shots. On defense, he plays under the basket in a zone defense or against the opposing power forward in man-to-man defense.

4. In a scramble of appointment schedules (my quarterly oncology appointment happened to come first), the ball gets relayed to my point guard (oncologist). He is able to make an advance by writing a prescription to calm the increasing severity of my hot flashes. Then, to best score against the palpitations, he hands the ball off to the shooting guard (my internist) who is able to make a wide assessment the my current field of play and prescribes a mild medication that will hopefully score a winning point against my racing heart. In this process I had been working with a new internist. He was called off the bench and into the game because of the new schedule and sporadic availability my internist of three years. Impressed by the new player’s skills, I (as owner of the team) made the decision yesterday to move him into the first string.

Now, I admit my basketball knowledge is shaky a best. But I use the analogy to make a point. Assign what ever positions you like to your cancer team. Just remember that every cancer patient is different and every game is different, requiring a complex set of moves, expert decisions and passing. As owners of our individual cancer franchises, we need to build and manage a team that we trust. It must have an uncompromising commitment to teamwork–constantly communicating and passing for the best advantage. Only then can it ultimately claim a win for us.

 

Laying Off the Lupron

There’s new hope for us side-effect-crazed patients.

 

During the discussion with my cardiologist this month he said: “You have to admit, there are a whole bunch of negatives with Lupron and androgen deprivation side effects… but then again, you have to love the upside.”

Love it? I might not be able to live without it! I thought to myself. It’s the obvious upside that keeps me and thousands of other men trudging through the Lupron gauntlet everyday. I also love that he gave my heart a clean bill of health despite my heart-choking side effects of ADT.

Now, there is promising news that may help many men like me better manage their treatment and possibly their side effects. In my mind, it’s nothing short of a game changer for clinical practice.

At the American Society of Clinical Oncology meeting last month in Chicago, a presentation on Intermittent Androgen Deprivation (IAD) was selected for a Best of ASCO merit. The big news for us patients? Data from a study out of Canada showed that shorter, intermittent eight month cycles of IAD can deliver clinical outcomes that are comparable to continuous androgen deprivation (CAD) for patients whose PSA levels rise to 3 ng/ml or more but whose scans show no metastatic disease (detectable lesions in bone or soft tissue). You can read more about this development in my piece: IAD: Changing the Standard of Care for Men with Recurrent Prostate Cancer.

Needless to say, I find this development VERY encouraging. During my last visit to my oncologist, he spoke of pulling back on my ADT from three years to two years. While my emotions jumped at the idea, I have to admit I was wondered just a little if I would be giving anything up… taking any unnecessary chances. This latest development gives me a heightened sense of confidence with the revised thinking. And, truth be  told, one more year of this most unusual existence is much more palatable than two.

Of course, when I see Dr. Lowe for my quarterly exam next week, I will also be discussing this study to see if, in his opinion, we need to make any further revisions to our plan. My guess is, as this is my first run with ADT, that sticking with two years might be best and that we can assess if IAD is the way to go should my PSA levels start to rise in the future. I need to leave that with my oncologist to consider, but it’s definitely worth asking the question.

Finally, I see some light at the light at the end of the Lupron tunnel.

As I push the “Publish” button on this entry, I am wondering how many other men reading this will be encouraged to consult with their doctors about IAD? I am interested in hearing your thoughts.

Lupron Patients report side effect

By luck of the draw, I’m one of them.

 

Most who have been inducted into the Lupron League know that life without testosterone is a crazy and trying proposition. While not at all pleasant (except for the laughing fits…), I thought I had started to make peace with this drug and its hold on my day to day life. But, just as I was counting down the days to the one year down, two to go mark, I started to feel them. Palpitations.

After the first few occurrences, I thought perhaps they were simply an aberration–something that would go away as simply and quietly as they had arrived. But they didn’t. Their frequency and severity increased over a two week period. Soon they began to feel as if someone was grabbing my heart and trying to choke the miracle muscle mass. These sessions came more frequently in the afternoons and evenings. If they came at bedtime, it was difficult to fall asleep. They grew more distressing in a sleep position. There were no other indications to make me think that a more serious condition was looming. But, considering one percent of patients do experience cardiac arrest, I did monitor these episodes very closely.

Two weeks of increasing discomfort convinced me that these wild palpitations were not going away anytime soon. My wife didn’t even need to nudge me. I called and saw my internist last Friday, just before the start of the July 4th holiday weekend.

An EKG revealed that there is an abberation that wasn’t there in November when I was just three months into treatment. My internist described it as a dip in my lower left section. Um…dipping when it should be lifting, I suppose my heart is no candidate for Beating with the Stars at this point. I left the doctor’s office with a referral to a cardiologist for this coming Friday, a prescription for nitroglycerin tablets (they do help reduce the pain of these episodes) and a reminder to go immediately to the emergency room should I experience any new symptoms that give me cause for concern. I was also given a prescription for a more effective statin because, despite my much improved diet, Lupron has also driven my cholesterol back into the area of concern.

I left the doctor’s office and had a sizable come apart sitting in my car in the parking lot. While it’s nice to have identified a possible suspect in this case, it is still disconcerting and unsettling. One close friend responded by saying how awful it is to have to deal with this new dimension of treatment. I for one, couldn’t disagree. But when I thought about it futher, I realized that I can take awful. It’s the slow water drip of bad news that is wearing on me. More blood draws, more specialists, more tests and, most likely, new treatments to counteract the effects of my treatment!

Once again, I find myself making mental justifications for the sake of my outlook… most likely, it’s only an arrhythmia and just a few missed heart beats, right? Gee…, I’m lucky to be in the five percent and not the one percent… I am looking forward to my appointment with the cardiologist on Friday and hope we can take care of this issue with speed and ease. I also hope that I am right and he doesn’t find anything else. My need to tackle this and push it into a manageable box is running high.

Just two weeks ago, I met Rick, for the first time. He is a fellow Lupron patient and advocate. He also runs support groups for patients in Marin County. He adamantly vented that medical teams do not prepare patients adequately for dealing with the down side of Lupron and androgen deprivation therapy (ADT). While I know that some men are fortunate enough to sail through ADT with few side effects, I’m sitting here remembering Rick’s words and thinking, truer words were never spoken.

PSA testing on seniors

We Often Consider at What Age a Man Should Consider PSA Screening, But We Rarely Ask When Do Individuals Stop?

I just had an interesting conversation with an individual who asked me at what age do most men start thinking about NOT having an annual PSA test? To be honest, I didn’t have an immediate answer. It’s a complicated question and I am, to be honest, stumped. Age is certainly a factor as is the reality that there exist 24 types of prostate cancer that range from indolent to very aggressive.

We frequently read about suggested guildelines for PSA screening. I personally like the AUA recommendation that suggests a man should talk to to his doctor about a first screening to establish a baseline when he enters his 40s. From there, based on a man’s general state of health and family history, he can decide on a screening approach that is right for him.  But in the almost twelve months that I have been writing this blog and the years that I have been meeting fellow patients, I can’t remember a discussion that addresses the other end of the spectrum. I would think that a vibrant, active 78-year-old man with a form that appears to be aggressive would be grateful to have the data and take some sort of action. Of course, a man of the same age could be pleased to live out his life with little or no intervention if his numbers indicated a slower growing form of cancer that he could quite possibly live with.  But, how many give up, for whatever reason, wanting to know at all?

So, I have to ask four questions:

1.) Are there men out there in their 70s and 80s who choose to no longer have annual PSA screenings and why?

2.) Are there men out there in their 70s and 80s who insist on annual PSA screenings?

3.) Are there men in this age group who have been screened and diagnosed with cancer?

4.) If you were given a diagnosis of cancer in your 70s or 80s, what course of treatment did you decide upon?

Thank you to anyone and everyone who can provide some insight.

Treatment is a Complex Issue

The following is a a guest entry I wrote for KevinMD, one of America’s top ten leading medical blogs. It ran this morning.

 

As a patient, I feel for anyone who is given a diagnosis of prostate cancer.  Hearing the “Big-C” word can be upsetting enough. But the complexity of the disease—diagnosing it, trying to characterize it and selecting the appropriate treatment—can feel like insult upon injury.  We need to talk about prostate cancers. With 24 known sub-types of this cancer—from non-life-threatening to very aggressive—it’s no wonder so much time is expended on debating PSA screening and the potential for overtreatment.

While debates continue, more than 32,000 American men die from this disease each year, placing it on par with breast cancer in incidence and mortality.

Oddly, I still contend that when I was diagnosed last year, I was “lucky” enough to have clear diagnostic and prognostic data to inform my decision to have a radical prostatectomy, despite potential side effects .  My PSA had nearly doubled in a year’s time. As my urologist reviewed my biopsy results, the extent of the cancer’s involvement in my walnut-sized gland and my Gleason scores, I knew where I was headed. He dutifully began sketching out all treatment options currently available to patients when I told him to stop and move to the top two options. He gave me a dubious look before I shared with him that I had learned much about the disease in two years of working at the Prostate Cancer Foundation.

I was lucky once again when my surgeon’s professional instincts prompted him to remove some of my lower lymph nodes during my robotic procedure, something that’s not always done.  The post-surgical pathology report upgraded my diagnosis to Stage 4 metastatic disease with single Gleason 5 cells discovered in the nodes. (Not exactly the kind of upgrades I am accustomed to in my life…) As a result, I headed into seven weeks of radiation therapy and three years of androgen deprivation therapy—a palliative treatment that drastically cuts my production of testosterone, a fuel for prostate cancer growth and proliferation.  Today, I have a 60 percent chance that I will have to live with recurrent disease. I look forward without second guessing.

Not all patients have such clarity. Through My New York Minute, I meet many readers who are confused by the complexity of this disease. As a fellow patient who also works for world’s leading private accelerator of prostate cancer research, I remind them:

  1. The PSA test is not a cancer test—it’s a diagnostic tool for identifying potential problems, including cancer, in the prostate
  2. With 24 sub-types of this cancer, one size does not fit all for treatment
  3. Sometimes, the best treatment is no treatment and proactive surveillance
  4. Age and personal preference are important factors in treatment selection
  5. Once committed to a treatment plan, avoid the pitfall of second guessing

Science will someday, sooner than later, enable us to identify which prostate cancer a patient has and prescribe highly personalized treatments that will work best for their case. Until then, an in-depth understanding of the disease and the advice of a trusted healthcare professional remain the best tools for making treatment decisions with confidence.

The Power of a Moustache

It’s surprising how landmark deep science can be supported by deeply rooted fun like Movember.

Researchers have sequenced the genomes of prostate tumors from seven men–a landmark event that promises to one day help clinicians learn how to differentiate between those tumors that will be highly aggressive and require immediate treatment and those that are essentially benign and that can be simply observed through proactive surveillance. This project represents a transforming moment in understanding the underlying biology of prostate cancer.

Geneticists have been sequencing a variety of tumors of different types, but the effort on prostate tumors introduces a new level of complexity.  If the data for each genome were presented in the form of a printed telephone book, it would form a book 35 feet high.

All of this is deeply complicated science, indeed. And it’s promising news for millions of prostate cancer patients. But it is important to note that is was made possible by an entirely fun–even frivolous–annual campaign known as Movember. Each year, thousands of men around the world grow moustaches to raise funds that support crucial research that can ”change the face of men’s health.” In the case, whole genome sequencing of prostate cancer was made possible by unrestricted funds raised by Movember in the U.S. and donated to PCF.

What really surprised the researchers, said geneticist Levi Garraway from the Dana-Farber Cancer Institute, was the wholesale shuffling of large segments of the genomes, with relatively big chunks of DNA broken out from one site and reinserted elsewhere. The team found more than 100 such rearrangements, far more than had been observed in any other form of cancer studied so far. “Not only were they much more common than one might have imagined, but there were certain patterns,” Garraway said. “It’s important for prostate cancer, but it might be telling us something fundamental about how cancer genomes become messed up in the first place.”

Complete information on this historic sequencing of whole prostate cancer genomes can be found at PCF’s website.

Men of America: Grow on!