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Follow up note

PCa_at_42
Posts: 5
Joined: Mar 2012

I originally posted a few days after my initial diagnosis with prostate cancer and you all provided extremely helpful advice. Thank you very much for that. I hope I can pay it back/forward in the future. Since that posting, I have had a second opinion with a very well respected surgeon and radiologist at BIDMC in Boston. They noted that I was a good candidate for active surveillance and would lean that way. The surgeon said he would do the surgery if I thought that was the better course (but did recommend active surveillance), the radiologist strongly advised against any type of a radiology treatment. My research on BIDMC shows that they have participated in several research studies related to active surveillance and have a one ongoing now -- the reality is that I am a very good candidate for that program. So I should not have been surprised by the surgeon's recommendation. This contrasts with my first surgeon's advice that he would strongly recommend surgery. Ultimately, I am electing to have surgery. This was not an easy decision and was the result of many hours of discussions with my wife and others. Below are some of the more important reasons:

Although I'm only 42, I have three children, the youngest of which is 10. If I did not have children or very young children, there is a strong likelihood that I'd consider AS for 3-4 years to round our my family. The reality is that there is a 99% chance I'm done having children (and can always bank sperm or remove with a needle in the future if necessary).

I know there is about a 70% chance (% various based on the study) that I'm removing a tumor that would never kill me. Could grow slowly or not at all, and if it did start to grow, there is a very high likelihood we would catch it before it spread. No one can put a % on "very high likelihood."

One main reason for choosing AS over surgery/radiation is to maintain my quality of life for a few (or many) more years. For me, I'm not sure there is that much improvement, it is really just moving things into different columns on all of the lists I made. AS has the following downsides: There is a 30% chance the tumor will grow and we will need to treat it in the future when I'm older and in worse health (I'm certainly not going to get in better health as I age). Also, I have a family history of PCa--which increases my anxiety. The anxiety of the 30% chance will really weigh on me emotionally (I know that will fade a little over time). The quarterly PSA tests will be a constant reminder that there is a cancer inside me waiting for the right time to start growing. I don't really care about the DREs anymore--they are no fun, but I've had so many they are routine. Annual biopsies and MRIs are not going to be fun and, again, will be constant reminders of what is inside waiting for the right moment to grow. I would be taking this on to avoid the side effects of ED and incontinence. I know enough not to believe the published percentages, but almost everyone (PC survivors) tell me that incontinence isn't really a problem (some pads maybe). I can live with that. As for ED, I'm putting the chances of an active sex life (with cialis/viagra) two years post surgery at about 70%. If I'm in the 30% that will not have an active sex life, I can live with that. I won't be happy about it, but I can accept that as the consequences as the price I had to pay to, hopefully, know with reasonable certainty that the cancer has been removed from my body.

I didn't really address the radiation/surgery decision, but there really isn't much there. I have studied both and came to the conclusion that surgery is the better choice. Part of that may be knowing that the prostate has been cut out, along with lymph nodes and a bunch of other stuff; rather than relying on scans and PSA tests to know that the prostate and cancer have been killed. The radiologist at BIDMC came as close as possible to saying that he would not perform radiation therapy on me.

I will keep you all updated on my progress. I have found that the stories and personal histories that people have posted here have been some of the most helpful information I have read.

- GRS

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

I wish you much success on your journey. Each person needs to decide for themselves the tools to fight this with and we all have various opinions.

I had robotic surgery in Aug 2009 and have been 100% pleased with my journey so far.

Do keep us posted.

lewvino age 57

Swingshiftworker
Posts: 658
Joined: Mar 2010

I'm sorry but it's unclear to me whether you've chosen to go w/AS or surgery -- which did you choose?

If you chose surgery, there are LOTS of reason NOT to do so and, FWIW, I think you should take time to reconsider.

Here's a link to a March 7th video by a Dr. Myers who says that there's no clear advantage of surgery over AS or radiation for men w/early stage PCa:

http://askdrmyers.wordpress.com/?mkt_tok=3RkMMJWWfF9wsRonuKzIZKXonjHpfsX67eQpWLHr08Yy0EZ5VunJEUWy2YIATdQhcO

Just scroll down to find the proper video.

Here'a a link to a statement posted by a doctor, who underwent surgery for his PCa, who said that, if he had it to do over again, he would have gone w/AS instead:

http://archinte.ama-assn.org/cgi/content/full/172/4/311?etoc

Here's a link to a paper by another physician which clearly details all of the major risks and dangers of surgery (including why surgeons are predisposed to recommend it even though they know its dangers) and another paper which reports the results of the Pivot Study which found no clear benefit of surgery over AS for men w/early stage PCa.

http://www.hifurx.com/prostate-cancer/prostate-cancer-after-effects/

http://biotechstrategyblog.com/2011/05/aua-2011-results-from-pivot-study-show-no-benefit-from-radical-prostatectomy-in-low-risk-early-stage-prostate-patients.html/

Fact is, subjecting yourself to the risks of surgery is simply unnecessary. All of the currently available radiation treatments offer the same probability of success without the same degree of risk as surgery. In fact, CyberKnife (CK) whas "almost" entirely eliminated the risk ED and incontinence from the treatment of PCa.

I had CK and had no side effects whatsoever and most of the other men on this forum who have been treated it report the same.

Here's a link to a video by a Dr. Fuller, who administers CK in San Diego, regarding the treatment method and its reported effectiveness as of a couple of years ago:

http://link.brightcove.com/services/player/bcpid1311218266001?bckey=AQ~~,AAABMTO41yk~,0BDF4jnPRYk18rLHqrcfnGVhJxC-Y8Rm&bctid=1349680876001

What ever you choose (or have already chosen), I wish you the best.

Ciao!

VascodaGama's picture
VascodaGama
Posts: 1599
Joined: Nov 2010

At 42

I am glad to read of your researches and opinions from doctors. You are becoming an informed patient and will decide on the best treatment. I like to see your confidence and the positive look of your future.
I hope you include in your treatment a series of tests that will serve you as bases in future diagnosis. Those image studies included.
Remember that outcomes are somehow related to the experience of physicians, the team caring your case before, during and after, and the facilities.

“I wish you the best of luck on this unwanted journey. It is not fun, it is not easy, but, it can be done. You just have to decide the way that is right for you.” …………..Susiebelle (Sep 2010)

For those wishing to read your story; http://csn.cancer.org/node/236958

Best
VGama

hopeful and opt...
Posts: 1364
Joined: Apr 2009

I wish you the best ..

I hope that you followed up, and underwent the additional diagnostic tests that we recommended to you. Having the most information before undergoing treatment can make a difference between success and failure., having a procedure with the least side effects with no cancer recurrance, the first time. Since your numbers are low, you have time to follow up on these tests, if you have not done so already.

For the treatment choice that you pick that is custom for you, you want the best medical team, one of excellence, cost or geographic location should not limit your choice at your early age since you will hopefully have many , many years of life ahead of you, and you want them to be the best.

For robotic surgery there is a very steep learning curve, and a surgeon having less than 250 or 300 is still learning; a surgeon having at least a 1000 or more robotic surgeries with documentation of excellent results is a minimum of experience to be allowed on your team . Others may recommend an even more experienced surgeon. If you know anything about baseball, you really want a .400 hitter, not a 200 or 250 hitter. I'm kinda old so you want a babe ruth, a ted williams, a joe dimaggio, you want an all time super all star...the very,very best.

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