Very young prostate cancer patient has difficult choices

davidcliftonpitts · Regular Joined: 19 Jun 2009 Posts: 11

Hello my name is David
I am 39 years old live in TExas and am facing prostate cancer.
I have no family history of cancer , however i am african american so it my doctor general physician took a PSA , it was elevated at 4.4. I went to my urologist who put me on antibiotics and celebrex for two weeks. I also ate a ridiculous amount of tomatoes. My next reading was a 3.8. I agreed to a biopsy at my doctor's suggestion. The doctor took 12 cores and it was one of the most painful experiences ever. ( I dont respond well to anytime of anesthesia locally , my whole life it never really works on me) .
Also the person doing the ultrasound was just horrible turned out it was someone training ( under supervision of course) but it was pretty bad.
Doctor took 12 cores with 2 out of the 12 cores being positive. We were looking at 3+4 = 7 and 5+3 = 8 according to baylor pathology. With less than 50% the other cores were benign except for 1 that was a PIN. Met with urologist who sat down and told me my choices he immediately ruled out HIFU. Seeds and Cryo saying i was too young and no long term data. He said surgery and suggested that i consult with a radiation oncologist for second opinion. Went to Radiation Oncologist he suggested. Dr. told me with IMRT/IGRT that they can get this cancer he said additional hormone therapy would be a double knockout but the side effects is something i would really have to consider and he said depending on how treatment goes i might not even need additional hormone therapy.
Went over to MD anderson for second slide and second opinion at Proton Therapy clinic. New gleason scores 3+3 =6 AND 5+ 4= 9. mD anderson immediately assigned me surgeon. He was gloomy he said even with surgery expect some additional therapy. Also stated nerve grafting was not effective and he would take one nerve definitely. He said my chance at ED was 50% and said less than 8% for urinary incontinence. I have tried to get what his definition of incontinence was and they quoted something from a textbook LOL. ( his PA responds to the emails). He then booked and MRI Endorectal with no dye. THe procedure was terrible because the nurse and tech kept moving me around trying to get the balloon and probe positioned right it was uncomfortable and really i almost wanted to throw up. I then did the MRI about and hour. I have had BONE SCAN, CT SCAN , MRI and 3 PSA's 4.4. 3.8 and 6.0. It turns out that my PSA reading was too soon from the biopsy as well as MRI so therefore the reason for my elevated PSA. The nurse said i should have been told to wait 6 weeks after BIOPSY for MRI, not 3 .5 weeks. LOL! she got permission from the local urologist on duty and we did it anyway . I talked with RCOG of atlanta and sent them my records. ALso sent my records to Dr. Kent Wallner of Seattle and I have read my records over and over again. I have a meeting with a med oncologist to discuss side effects of hormones. I am completely confused lost and frustrated, but after intense study i think either Radiation + Seeds or Radiation vs Surgery is where i am at. My partin tables dont look good with a high gleason score but everyone is saying the tumor cant be seen . The radiation guy and surgery are both confident. I practice martial arts as a second business and i am thinking all this is gonna be gone with surgery and if rads dont work then i am looking at even a worse condition... I no longer care about ED, i just want to be able to PEE with no problems. Also I have no kids and a young fiancee I am getting my sperm frozen. I would like talk with some other people who have gone thru this.
[LINKS DELETED BY ADMIN PER FORUM POSTING POLICIES: http://cancerforums.net/viewtopic.php?t=12696 AND http://cancerforums.net/viewtopic.php?t=7121. THANK YOU]
THanks..
David.

johnT · Senior User Joined: 27 Apr 2009 Posts: 173

Hi David,
Sorry you have to join us especially at such a young age. A Gleason 9 is pretty serious and undoubtly you will need multiple treatments, eg, surgery and radiation or radiation and HT. PAACT has a lot of information on high risk PC as does the Prostate Cancer Research Institute. There are a lot of patients living today witth your stats so don't be discouraged. A good book to read is "Beating Prostate Cancer through Hormone Therapy and Diet" by Dr Charles Meyers. Good luck.
JohnT
_________________
psa at diagnosis 40 in nov-08
gleason 6 and 7
Treatment choice seeds and IMRT

Replicant · Moderator Joined: 01 Nov 2006 Posts: 741

It sounds like you are on top of things, seeing docs from different specialties, studying, thinking about side effects and prioritizing things. And MD Anderson--not too shabby!

It's my general impression as a layperson that Gleason 9 is tough but not impossible to beat, and that usually it involves a combination of treatments. (I had to have both surgery and radiation to beat back my Gleason 7).

Youth is both a curse and a blessing when it comes to prostate cancer. It will be an ally to you in terms of incontinence. Younger men generally do better and recover continence quicker. No guarantees, of course. And if you have surgery and the surgeon can spare a nerve bundle, your youth should help in terms of ED. Those are the good parts about youth and prostate cancer.

The downside of youth is that you (and I) REALLY need to knock one out of the ball park. (Or in martial arts, achieve a knockout, I suppose), because we have decades ahead of us. And as you have noted, there are issues of sex and procreation that are more acute when you're 39 than when you're 80ish. I know I'm generalizing, but there aren't many guys in their 80's who bank their sperm before surgery.

You might want to join the social network part of Prostate Cancer Infolink ( http://prostatecancerinfolink.net ) There's a forum for younger men.

Welcome to the discussion. I hope you stick around and let us know how it goes.
_________________
Replicant

Dx Feb 2006, PSA 9 @age 43
RRP Apr 2006 - Gleason 3+4, T2c, NXMX, pos margins
PSA 5/06 <0.1, 8/06 0.2, 12/06 0.6, 1/07 0.7.
Salvage radiation (IMRT) total dose 70.2 Gy, Jan-Mar 2007@ age 44
PSA 6/07 0.1, 9/07 (and thereafter) <0.1
http://pcabefore50.blogspot.com

Hawk · Senior User Joined: 22 Nov 2006 Posts: 406

David, I just add that I do not see you having problems with incontinence. In fact I would say the risk is near zero with external beam radiation. Martial arts should be no problem either. Your variety of moves may require a pad to absorb a drop or two for a short time after surgery but by the time you are ready to risk a kick I think your control will be fine.

As stated by others, I think your real concern is getting the knock out combination on this cancer. By the way, you can thank your doctor for being proactive and giving you a good fighting chance with this.

The last thing is that you might consider a second look at the biopsy by a highly skilled pathologist. The process is fairly simple and relatively inexpensive. I guess the number one guy is at Johns Hopkins.
_________________
History: PSA's 6.7 neg. biopsy - PSA 16.6 neg. biopsy - PSA's 8.2, 8.1, 8.7 - Biopsy. 4+4 Gleason 8. Lap RP Apr 2004, age 52 All neg margins, nodes, and structures. (T2a). Post RP PSA: every 6 mo. <.1 until Feb, 08 (46 mos) PSA .1 - I then got sensitive tests (all in 2008) showing:
Feb .06, May .09, Jun .10, Aug .10, Nov .15 -SRT

davidcliftonpitts · Regular Joined: 19 Jun 2009 Posts: 11

THanks yes i was shocked that baylor and MD anderson did not agree on the pathology of the biopsies . I am gonna send this off for a third opinion.
I am really looking at IMRT/IGRT and visiting different radiation onc's because they can get up to 81 gray fairly safely according to all the literature and a personal conversation with one radiation onc's . I am meeting with a oncologist to study the hormone plus IMRT/IGRT option to way my side affects option. But what encourages me is that in the next 2 years I believe they will be very close to some type of immunotherapy treatment in addition to conventional treatment. This forum is wonderful. Prostate cancer has changed my life, i am now a fanatic about studying about cancer. Thank God I have a new mission in life..

notme · Guest

David said, "urologist who sat down and told me my choices, he immediately ruled out HIFU"

WHY??? Because he wouldn't be able to make any money???

YOU need to look into HIFU. Call the HIFU doctors and ask them if you are a candidate or not. they will NOT treat you if they think you will fail, they are looking for good statistics only. 888-874-4384

I had HIFU with internationalHIFU, I had no side effects what so ever, cancer one day, gone the next. No hormone drugs, no discomfort.

I've found lots of guys who have had HIFU, and 8 who are 5-8 years out with no recurrance.

take charge.

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