New to thread PC diagnosed Sept.

I am the youngest of 5 brothers. The first brother(49 when diagnosed) was diagnosed 10 years ago and had RPS and he is doing great. 4 years ago another brother (58) was diagnosed (PSA <6 GL7, Stg3) and he had robotic surgery and is doing well. Last year another brother was diagnosed with PC at the age of 61, GL6 he chose Brachytherapy HDR and he just had his last of 2 treatments last week. In Sept of this year I was the 4th of 5 brothers to be diagnosed with PC (54 yr old PSA 4.98 GL7 2out of 12 bip.) Now its my turn to make the decision on which way to go. I have had a second opinion at the Cancer Treatment Center of America in Newnan GA. As most of you have already guessed the surgeon said at my age that surgery was the best and the Oncologist said I was a perfect candidate for the Brachy HDA. I know its my decision but i guess I just need some other inputs on this. I have read most every post on this site and still am undecided. I was told I did not have to rush in my decision but I am ready to move on this quickly. Any comments or advice will be read and thank you for what I have already read.

If you are looking for the full spectrum of treatment options, then maybe you should research SBRT, Proton Beam, FLA, HIFU, as well as the Prostvac clinical trials.

The goal is to neutralize the cancer while having the least side effects. The side effects of surgery, and often of certain forms of radiation, can greatly impact your future quality of life.

Sometimes, its easier to get truthful discussions of side effects at a local prostate cancer support group than it is from relatives or acquaintances. They are monthly group meetings in most cities.

Alabama blue cross dose not pay for the Proton Beam and its very expensive, if I was in FL their Blue Cross does. Go figure, yes I do have my siblings to give me their suggestions or how it is going for them. We are a close family so we talk quite a bit. The CTCA was my second opinion and they had the slides sent to them. Thanks for the well wishes and suggestions.

Thanks Paxton, I have been given some knee time and pray for the right choice as I learn more about this disease. My oncologist did make a valid point," If any doctor tells you that your cancer is 100% gone he is lying. Then he used the story of we think the DoDo bird is extinct but what proof do we have? Just because we have not seen one does not mean there is still one or some out there. This really hit home, we don't know where the cells have traveled to. I really think this board is the best thing I have found for being real life stories from real people that understand each others mind set as we go through this journey. My GS was a 3+4 also with 2 samples positive one 20% and 1 5%. After my second brother was diagnosed I started getting my PSA checked twice a year and I pray by doing that we caught it early in the stage. It was a steady climb, no real spike. It went from a 3.0 to a 4.2 in 2 years. At 4.2 I saw a urologist and decided on Biopsy. Thanks for the kind words of confidence. Prayers to all

All4coop: Where are you located in Alabama?

John_TX said...

Roger on the cancer not being 100% gone, I consider myself cancer-free at this moment in time and hope I can keep the beast at bay for years to come. Keep the knees down and keep praying.

John, that's one thing I've already learned. From the point of diagnosis onward, there are no guarantees. We will know what we know, but we will not know what we don't know.

I've had doctors tell me that they can "cure" my cancer. My mind doesn't register "cure" but I do hope for durable and complete remission.

I just wanted to add another voice recommending you slow it down and take your time. It's an important decision, and with your diagnosis, there is little risk in taking your time.

They have a new category for your kind of PC (which may be entirely different from the kinds your brothers had). They call it "favorable intermediate risk." It describes a particularly non-aggressive kind of prostate cancer that is characterized by GS3+4, less than half the cores positive for cancer, and otherwise low risk characteristics. It has almost the same prognosis as low risk prostate cancer, and all the same treatment options - including active surveillance! - are open to you.

Just because a urologist said "surgery or HDR brachy" doesn't mean those are your only good options. But it is up to you to go out and get opinions from specialists in all of your options, with whatever constraints your insurance puts on you (this is open enrollment time if you want to switch insurance). I think it is a good idea to decide not to decide until you have gathered all your information.

I know that UAB offers SBRT. It sounds like you have a place that offers HDR brachy monotherapy. The closest experts that I can recommend for LDR brachy or focal ablation would be in Florida, but I don't know if that would be out of network for your insurance.

Fiducial implants are done through the perineum or through the rectum (like in a biopsy). If your brother had it placed through his penis, his doctor was a sadist.

There are salvage options for any kind of therapy. Salvage after surgery is always radiation. Salvage after radiation is either more brachytherapy, focal ablation, or even whole gland SBRT. With your diagnosis, salvage therapies should be the least of your concerns because the expected outcomes are so good. Not 100%, but close to. In a recent study of SBRT, for example, 97% of intermediate risk men had no evidence of disease after 5 years;and 95% for HDR-BT with 10 years of follow up. In those few cases where the cancer was not controlled, it was due to it already being metastatic, so salvage therapy would be useless anyway.
/pcnrv.blogspot.com/2016/09/5-year-sbrt-trial-high-cancer-control.html
/pcnrv.blogspot.com/2016/08/high-dose-rate-brachytherapy-hdrbt.html

Younger men recover better from every therapy, so I don't see how that makes a difference in your decision. Here are some questions you may want to ask yourself:

• Do I need to see a pathology report to tell me how contained it was?
• If I choose radiation, can I live with the fact that PSA goes down over a number of years, with bounces along the way, and never becomes undetectable?
• If the pathology is adverse and PSA does not become undetectable, am I prepared to undergo adjuvant radiation with all the potential side effects that entails? (Your doctor has hopefully run a nomogram showing the probability of this happening)
• If the radiation doesn't work, am I prepared to have a biopsy and possible focal brachy re-treatment?
• Which bothers me more - the potential for incontinence and ED after surgery or the potential for retention and irritative effects after radiation? (given the probabilities of those side effects)
• Do I understand the other possible side effects of surgery? (e.g., infection, hernia, climacturia, penile shrinkage, stress incontinence, etc.) Am I prepared to take on penile rehab?
• Do I understand the other possible side effects of radiation? (e.g., fatigue, proctitis, hemorrhoids, frequency, urgency, burning while peeing, ED).
• Am I mentally prepared to undergo radiation?
• Am I mentally prepared to undergo surgery and its recovery?

trailguy said...
...I went into surgery with a G7(3+4) and came out with a G7(4+3). They started out telling me that I was "moderate risk". That is not how they refer to it now, however. ..

Same situation with me.

In my own experience, I only had a clear answer after I realized that I had the God-given ability to go out and seek the answers for myself. It required a lot of work on my part, but I believe it paid off. I hope that after some soul-searching, you will find that you have been blessed with that ability as well.

all4coop, I missed your earlier posts, I would like to add my welcome. You've got time to make a thoughtful study of the alternatives, and you owe it to yourself to do the legwork. It's especially important to remember that each specialist knows "his or hers" thing, and is less informed about what the other specialists know and do. Urologists are surgeons, so they know surgery, and so on.

I'll repeat what I say often to new guys: "Go big or go home!" PC is a tricky beast, and you need the best experts you can get to. I know it's a ways away, but you might also consider a consult at Emory in Atlanta. If you're thinking about surgery, one of the best RALP surgeons in the country is Dr. Smith at Vanderbilt in Nashville. (I need to look at the map to see where Andalusia is).

Keep coming around, and keep us posted.