YANA - YOU ARE NOT ALONE NOW

PROSTATE CANCER SUPPORT SITE

BRONZE

Harv V lives in North Carolina, USA. He was 52 when he was diagnosed on February 12, 2009. His initial PSA was 3.0 ng/ml, his Gleason Score was 3+3=6 and he was staged T1c. His choice of treatment was Active Surveillance. Here is his story.

Doctor's names are not listed here as my story is one of my experiences in health care consumerism.

After three years of visiting my urologist and hearing "Your PSA of 3 or so is higher than we would expect from a man your age. We should retest in 6 months", I reminded the Urologist that he had said this before. He then poured thru my chart and promptly arranged for a biopsy. Why don't all doctors read the patient's charts before seeing the patient?

My first biopsy, two weeks after my PSA reading of 3.0, came back HGP (High Grade PIN). I opted for a second biopsy soon thereafter. This one came back with one core positive. Immediately, I thought I would go to Duke Medical Center for an RP (Radical Prostatectomy). My local Urologist seemed taken aback that I would not have his small practice do it in the local hospital.

On my first trip to Duke, I spoke with a doctor's assistant and then the Urologist (surgeon) himself. When I asked the surgeon about his success rate in terms of continence/potency, he replied "I don't know" but said he was the best at Duke. As the surgeon had very good technical skill, according to several nurses in the department who did not work under him, and he had impressed me in a pre-diagnosis consultation months earlier, I gave him the benefit of the doubt. But his assistant failed to follow-through on both of my independent requests for additional information. I figured that was a bad omen in case I should have post-op problems, since I'm really selecting a TEAM to entrust my life, not just a surgeon.

I also spoke with a Urological surgeon at UNC Medical Center (Chapel Hill), whom several urologists in the area had suggested I talk to. After a 2-hour wait, I spoke with his resident/fellow and his NP at length before the doctor himself saw me. The doctor himself was very efficient, and explained to me the statistics of my case. He noted that he was salaried and had nothing to gain by advocating any particular treatment option... which makes me wonder, naive as I am, how much that really does happen with non-salaried surgeons. He suggested that I look seriously at the active surveillance option. I was told that they would discuss my case as a team and let me know what they thought. I never heard back from them, though. I later requested my records to find out, and was surprised to read in his physician consultation notes that he informed me of things that, in fact, he had not informed me of. Moreover, my e-mail and voice-mail attempts to follow-up with questions were answered incompletely-at-best by e-mail from his assistant, and when I tried in voice-mail and e-mail to follow-up for clarification and completeness, was e-mailed that I'd have to make another appointment... Again, I concluded that this was not a good sign for high-quality post-op care, and so he is off my list, talented as he may be.

Ten weeks post-biopsy, I had my PSA drawn by my PCP and analyzed by the same lab. It had shot up to 5 from 3 (a 67% increase!) in just 18 weeks and, being aware that PSA velocity was an indicator for action, I panicked. [Whilst Harv's reaction is understandable, PSA can vary signficantly over a short period of time - see this experiment and PSA 101.] I returned to Duke and saw the doctor I had spoken to previously. He assured me that the PSA is NOT a good measure and I shouldn't be looking at it over such a short time-frame, and it could even be high due to irritation from the biopsy 10 weeks before. If PSA is not a good measure, then I figured there's no way I'm going to pursue active surveillance using PSA as my signal to treat the cancer, on such a sparse time frame. He mentioned his work in focal cryotherapy. This is where, for select patients, he thoroughly maps the prostate (think 60-80 cores!!) and freezes the cancerous tissue, leaving most of the prostate functional. [One of the YANA mentors, Steve Z had this kind of biopsy and focal cryotherapy.] But my concern over the risk that biopsies pose for leaking cancer cells or letting them escape into the bloodstream quickly eliminated that possibility. That concern/paranoia is based on the question of--how does prostate cancer persist after a prostatectomy where the margins are all negative? To me, biopsies seem like the most likely avenue for escape, and for my low-volume, low Gleason statistics, I'll try to avoid biopsies.[The question of tumours being spread by biopsy has been discussed many times. There is no clear answer and although there is a good deal of merit in what Harv has to say, logic indicates that with the very high number of biopsy procedures being carried out since the use of PSA for tests, the number of diagnosed prostate cancer cases would have climbed rapidly. It has not.].

Two weeks after my high PSA test, I took a confirmatory test, which showed my PSA had dropped back by 20% to 3.9. Both tests were analyzed by the same lab, and I had been celibate for at least 48 hours before each test. I know enough about variation where I can now see that FREQUENT PSA readings could be helpful--within a year I would have 12 data points, one per month, where I could see the normal variability of PSA, and presumably at some point, I would be able to see an abnormal rise and be able to take action sooner than I would be able to by monitoring semi-annual or annual PSA measures.

I next went to see a surgeon at Johns Hopkins. JHU's Urology clinic is ranked #1 by US News & World report, and seems to be efficient. I was surprised that when called from the waiting room for my appointment, I was taken directly to the doctor's office to speak to him, without having to see a nurse and resident/fellow first. He asked me in depth about a previous surgery unrelated to urology, and my satisfaction with its outcome. I can only guess that he was predicting my satisfaction with the outcome of his surgery on me. He quoted me a 75-80% potency rate w/o meds at 24 months and >95% continence rate, and noted that the various surgeons there have the same success rates.[It is important when discuss rates of potency and continence to establish just how these are measured and how they can be demonstrated. Many studies use definitions that would not be accepted by most men as adequate.] I asked him about focal procedures that treat only the cancerous portion of the prostate, and he replied that prostate cancer tends to be multi-focal, so he did not favor focal procedures. I asked him about my highly variable PSA levels and he agreed with others that I shouldn't focus on any one PSA reading, yet he wrote down my last PSA reading from the records I carried to his office. I asked about biopsies leaking cancer outside the prostate and he replied that this has been looked into but there's no evidence of it; however, biopsies leave scar tissue that can make prostatectomies more challenging. So my concern about biopsies is heightened. His demonstration of no interest in doing surgery on me left me puzzled as to whether this was extraordinary professional impartiality, or perhaps he really didn't want me as his patient! :(

I returned to Duke where I met with a team comprised of a medical oncologist, urological surgeon, and radiologist. Perhaps this is where I should have started. All were down-to-earth, straightforward, and open to my ideas about treatment. The surgeon was amenable to my monthly PSA active surveillance. The oncologist confirmed the non-existence of evidence that biopsies leak cancer. He noted that a classic Swedish study found that the death rate for men my age who were on active surveillance protocols was twice as high as those who had chosen surgery, 20 years down the road.[It is not clear as to which study is being referred to here. The Swedish Holmberg study titled A RANDOMIZED TRIAL COMPARING RADICAL PROSTATECTOMY WITH WATCHFUL WAITING IN EARLY PROSTATE CANCER showed that while radical prostatectomy significantly reduced disease-specific mortality, but there was no significant difference between surgery and watchful waiting in terms of overall survival. (N Engl J Med 2002;347:781-9.)] So, he believes I should be treated soon.

Finally, I met with the Radiologist, who informed me about IGRT (Image Guided Radiation Therapy) and IMRT (Intensity Modulated Radiation Therapy). My concept of radiotherapy was outdated and I hadn't realized that radiation could now be focused in a fixed three-dimensional area the size of the prostate. I asked about proton beam therapy, as a "Brotherhood of the Balloon" uncle has been touting this approach and he was pleased with it, having had the treatment years ago. The Radiologist's reply was that proton beam was attractive at one time, but since the advent of IGRT/IMRT that can confine the radiation to a small mass, the proton beam therapy no longer has that advantage. I have read the BOB advocate book "You Can Beat Prostate Cancer" and it does seem quite biased (as expected) and outdated, especially in its depiction of RP surgery (blood transfusions and all). Furthermore, I understand there is still no evidence that PBT produces superior outcomes (except, perhaps, in profit!). Still, I was unhappy about the prospects for retaining continence and potency from IGRT/IMRT since the goal is to eradicate the cancer and in so doing, tends to cook the margins that hold the nerves that drive potency and continence.

At this point, I am pursuing my monthly PSA monitoring active surveillance while I look at advances in RP that suggest superior margin, continence and potency rates and try to separate the truth from hype.

 

UPDATED

August 2009

 

 

Update Aug '09: After my last contribution, I consulted with Dr. Fagin (Austin, TX), and Dr. Vip Patel's office (Celebration, FL). Both claim very high 1-year post-surgery continence and non-medication potency rates due to athermal and other newer techniques. However, other surgeons do not know how these high rates can be achieved, even with the newer techniques. I read one account of a patient who was never surveyed by Dr. Patel post-surgery, so it raises a little bit of wonder if patients are surveyed selectively.

My PSA has gradually dropped from a high of 5 in April and I attribute this largely to

1) sex within 48 hours prior to the April reading that disturbed the prostate and drove the reading higher, and

2) Vitamin D supplements that I began in April.

In June, when my PSA was 4, I asked my primary care physician to do a complete blood profile. Thru this, Doc found that I was severely deficient in ferritin and, despite the 400 IU daily D supplements that I was taking, I was also very deficient in Vitamin D, a characteristic of the Geek age, I guess. [I don't know if there's any link between ferritin and PCa or Vit D.] Doc prescribed 50K IU of Vit D per week. My July reading before 50K supplement was 3.7 and August's reading after 50K supplement is 3.2, a substantial drop!

I am curious whether this downward trend will continue, but my PSA now is about where it was a year ago. At this level, my Duke oncologist and surgeons feel there is no need for me to rush into surgery. I will continue to closely monitor my levels and update YANA on my progress.

In reviewing my Prostate Cancer e-mail, I found a message from Johns Hopkins Health Alerts that refers to the article here. It is worth a read and suggests that "vitamin D is a most promising area for prostate cancer research.".

 

UPDATED

July 2010

 

 

I continue to closely monitor my PSA and Vitamin D3. My PSA stayed low at 3.2 until I stopped taking 50K IU of Vitamin D3 per week (instead, I was taking 1K/day per my primary care physician). My PSA then shot up to 4 the next month. I resumed taking 5K IU/day and after another month my PSA settled down to 3.2-3.4. It has stayed there since, and I am now getting both PSA and Vit D3 checked every other month. I've just noticed this pattern between D3 and my PSA levels with me, real or coincidental. Certainly, the studies e.g. Johns Hopkins (previous update) support the possibility of the link being real.

For me, Vit D3 supplements pose problems in that some metabolite of the D3 or the increased calcium uptake from the D3 causes unquenchable thirst at night. For this reason, I try to expose my skin more (easy in the spring & summer), which is worse for my skin but I think better for my health.

As I've said before, I am careful to have my PSA drawn under similar circumstances. No exercise that puts pressure on my prostate (e.g., cycling) or sex within 48 hours of the test; both of these can cause an increase in PSA in the blood. Also, if I have a bowel movement, I will wait for another day as I believe this, too, puts pressure on the prostate.

I read the book "Anticancer: A New Way of Life" by David Servan-Schreiber and have tried to adopt its diet and exercise regimen to the extent feasible. I recommend it.

As my oncologist recently pointed out, when I started this adventure with early PCa, the rule was to get rid of the cancer and the exception was active surveillance. Now, he says, it's exactly the opposite--a surgeon has to have a much better reason for a prostatectomy than simply the presence of early PCa. A lot changes in a year....

Harv's e-mail address is: yellowwoodroad at (substitute @ for 'at') yahoo.com