Newly Diagnosed, Looking For Feedback

jimschlemmer · Regular Joined: 28 Apr 2008 Posts: 22 Location: troy, ny

Hi. I was recently diagnosed with prostate cancer. I am hoping I can get some feedback from people who've gone before or are going through this now.

Here's my specifics:

- I'm 45 years old.

- Routine physical in Jan '08 revealed a PSA of 9

- Did a two week routine of antibiotics at which point PSA came down to 6.9

- Free PSA %, however, was a very low 5% so a biopsy was recommended.

- Upon further consultation with urologist (I had only seen the nurse up until this point) it was decided to put me on a month long course of antibiotics together with strict adherence to a diet free of caffeine, alcohol, and spicy food.

- After that my PSA was back up to 8.9 and we did the biopsy.

- Biopsy came back with 2 (adjacent) out of 12 samples positive:
1: Gleason 3+4=7 at 30% volume
2: Gleason 4+3=7 at 10% volume

- My DREs were mixed. In the course of the past few months I've had 4 different DREs done by 4 different people:
1st: GP during physical -- OK
2nd: Urological nurse on initial consult -- OK
3rd: Colon/Rectal physician during exam -- OK
4th: Urologist (at the urging of my wife) -- only noted slight firmness/asymmetry on one side but didn't make much of it at the time and didn't note it in our post-biopsy consultation until my wife asked if the firmness was in the same region as the positive samples (it was).

As a result, I'm not sure exactly what my clinical stage is, thinking it's either a T1c or a T2a. I have a call into the urologist's office to figure out what he put down on my chart.

After hearing about all the options I decided to go with the robotic surgery and we chose the surgeon in the practice who'd done the procedure the most -- about 200 times. I have an appointment with him next week.

Subsequently, I spoke with a friend of a friend who's a radiation oncologist . He urged me to consider "combined radiation" therapy, whereby both seeds and external beam radiation are used. He said that my Gleason 4+3 made him worry that there's a good chance
that the cancer has gotten out into the prostate capsule or may do so during surgery. The risk for me is that if the prostate pathology shows spreading beyond the outside of the prostate, I'd be facing external beam radiation anyway. I really don't want that as, being younger, I've got a lot more time for side effects to kick in. But the radiation oncologist insisted that the chances of incidental cancers is 1:100,000 and that the therapy is very effective. He offered to put a call in to Richard Stock at Mt. Sinai, since I'm relatively close to NYC. Stock is apparently a leading light in seed therapy.

I've poured over Partin tables trying to get a sense of my chances. The only thing I feel good about is the low probability for lymph node spread. Everything else is in the realm of a crap shoot. With the combined therapy, it seems you're taking a short course of external beam radiation to eliminate (hopefully) the possibility of a full course. But now, after talking to several people, I've heard "You're a young man, you should do RP" and "You're a young man so you should do seeds."

Psychologically, speaking, it's better for me to get the thing out. The idea that the prostate and the cancer are in me still would be difficult to bear. Also, having the prostate pathology offers the possibility of closure that you can't get with radiation. Then there's the advantages of having no prostate at all: no prostatitis, no hyperplasia and no more biopsies. I'm not sure if there's any data on men getting prostate cancer again in a different location after seeds.

It's probably true that most guys think that in getting the prostate taken out they're more likely to beat the disease entirely, which I gather isn't borne out in the data. But quick glance at the Han tables shows this is certainly not an iron clad bet.

Speaking of psychology, ever since my biopsy I've had small pains. Sometimes they're right around the prostate. At other times they're more testicular or off to the sides. When I met with my urologist, post-biopsy, and described them as a low-level, migrating pain he dismissed it as having nothing to do with the cancer. I certainly allow for this as being something in my head as I contemplate the potentially awful outcomes, but has anybody else experienced this?

Thanks for reading,

-Jim

Replicant · Moderator Joined: 01 Nov 2006 Posts: 271

It sounds like you're doing a great job of researching and educating yourself!

I'd say you're correct on your staging, but it sounds more like T1c--the cancer was NOT discovered by DRE, only by biopsy after an elevated PSA.
Of course, a benefit of surgery, should you choose that route, is a nice workup by a pathologist and you'll know the clinical stage at that point.

I would caution you that the combined brachytherapy/external beam therapy that has been suggested is something you should focus your research upon carefully. Look up the rates of morbidity (side effects). They are higher with combined therapy than with either procedure by itself. If you go that route, it is absolutely critical that you have one of the top guys in the field--not just for cancer control, but to minimize side effects. You want an absolute wizard.

You're right--a lot of guys think they're cured by their primary treatment, whatever they have done. In the case of surgery, most of them are. Around a third will see their PSAs rise later. Mine did--and since I had surgery as a primary treatment, salvage therapy wasn't that big of a deal. If you have radiation as a primary treatment, having a salvage prostatectomy is a HUGE deal. That's a benefit of surgery.

The benefit of radiation, as I see it? It ain't surgery. It's much easier on patients over 70, or those with underlying physical problems that make surgery riskier. If you have IMRT, IGRT, or protons, the treatments themselves are completely comfortable, except for lying on a hard table a few minutes a day.

So--finish up your homework, make your decision, and go for it. You might consider posting a note on the WebMD Prostate Cancer Support forum for John (aka az4peaks). He's a very knowledgeable layperson who has helped many men.
_________________
Replicant

Dx Feb 2006, PSA 9 @age 43
RRP Apr 2006 - Gleason 3+4, T3a, N0M0, 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 <0.1, 12/07 <0.1, 4/08 <0.1, 11/08 <0.1
http://pcabefore50.blogspot.com

BR Lav · New User Joined: 05 Apr 2008 Posts: 3

59 years old
PSA 4.0 jumped to 5.4 in 12 months
12 point biopsy showed 2 of 12 (left & right sextant) with a Gleason 6 (3+3) 5% both samples

My doctor briefed me on all my treatment options and off I went to make my decision. I went back and forth between Radical Prostatectomy and Radiation for several days. The more I read the more I would change my mind! Then one morning I decided on Radical Prostatectomy, and I called my doctor to schedule it. Since that day I told myself that is the only procedure for me and forgot about the others. This has helped me during the past 3 weeks get ready for 1 May. Did I do adequate research, ask the right questions, consult others-YES.

When you finally make your decision do not look back - look forward with your final decision in mind.

Good Luck

Otago · Regular Joined: 20 Jan 2008 Posts: 28

[quote="Replicant"]
You might consider posting a note on the WebMD Prostate Cancer Support forum for John (aka az4peaks). He's a very knowledgeable layperson who has helped many men.[/quote]

I've tried finding that support forum, but can't despite searching WebMD.

Any ideas on finding it?

Otago

Replicant · Moderator Joined: 01 Nov 2006 Posts: 271

The prostate cancer discussion board on WebMD is here:
http://boards.webmd.com/webx/topics/hd/Cancer/Prostate-Cancer-Support-Group/
_________________
Replicant

Dx Feb 2006, PSA 9 @age 43
RRP Apr 2006 - Gleason 3+4, T3a, N0M0, 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 <0.1, 12/07 <0.1, 4/08 <0.1, 11/08 <0.1
http://pcabefore50.blogspot.com

Otago · Regular Joined: 20 Jan 2008 Posts: 28

Replicant, Thanks for the link.......

jimschlemmer · Regular Joined: 28 Apr 2008 Posts: 22 Location: troy, ny

Thanks, everyone.

I still have to talk to a couple of oncologists but am pretty fixed on the surgery.

One of my primary areas of focus is the long term effects of EBRT, given the significant likelihood that I'll have non-organ confined PCa. The American Cancer Society book doesn't seem to talk about them. Yet at 45 I'm concerned about the longer run problems, out beyond 10 years.

-Jim

kappersack · Regular Joined: 11 Jan 2008 Posts: 14

I am sorry to hear about your recent diagnosis. I want to tell you that my father survivved over 16 years after a radcial prostactomy when diagnosed with this decease. He lived a wonderful normal life until last year when the cancer moved to his liver. I wish you good luck.

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