Just Diagnosed

I was just diagnosed with PC, PSA of 11.3, Gleason score of 9 (4+5).

Urologist stated that 75% of men with this Gleason have the cancer elsewhere even though it did not show up in either the Bone Scan or the CT Scan (micro-metasteses).

He recommended against surgery since he would have to be as agressive as the cancer and would almost guarantee incontinence and impotence.

Instead, he recommended HDR brachytherapy, external radiation and hormone therapy.

My question:  Knowing that there are no absolutes, is this a reasonable recommendation?

Thank you

Gray Panther,

Well I certainly wish you didn't have to join this "club" but I'm really happy that you found us. You will soon see that there are many people who will be joining this conversation with support, advice and encouragement. Your diagnosis sounds very similar to mine. I also had a very similar PSA and a gleason of 4+5. My surgeon told me that the biopsy convinced him that there was some cancer already outside the prostate so it would not do any good to have the surgery. Instead they put me on a course of hormone treatment as well as radiation. Thinking back, I am very happy that I just happened to be in a small town that actually had two hospitals with very well respected oncology departments (medical and radiation). But even though I was fortunate to be near good facilities, I wish that I had taken time to consider other options such as Loma Linda's treatment facility (even with a Gleason 9 you have SOME time to consider options). I don't begrudge my decision but I would like to just encourage you to educate yourself as much as you can. You have seen others in this forum who talk about "Dr PatricK Walsh's guide to Surviving Prostate Cancer." I would highly recommend that you check that book out. We all wish you luck with your treatment and we will all support the decisions you make.

Good luck

Jim

Hello Gray Panther,

Welcome to the site. Sorry about the crummy news you have received. The advice you have been given is very similar to what I was told by the urologist who made my diagnosis. I did a good deal of research on the subject and treatments. I also got a second opinion from Mayo in Rochester. I would recommend that you also do the research and seek a second opinion from the facility of your choice.

At Mayo they believe that even in the advanced cases that surgery gives better results in the long term. But only if it is followed by radiation and possibly HT. There are a number of medical papers by Mayo doctors that propose this course of treatment.  In my own research I found that the odds for cure were about the same for radiation of surgery in the case of localized disease. Key here is localized. Even so the data I found on advanced cases seemed to give a slight edge to surgery, radiation and HT vs just radiation and HT. In the end I went with IMRT and HT. Google Bola study for a good dissertation on radiation with adjuvant HT.

I also looked at proton beam at LL, Schands in Jacksonville, FL, and Anderson in Texas. It was (is) very expensive and a long ways from my home as well. I am uninsured so the cost was a major consideration. From what I could discern from my research the results were about the same as IMRT but the side effects were not as severe in most cases. My own side effects from IMRT have been very little. (thankfully) Proton can be given along with IMRT for an advanced case. The IMRT is used to radiate the pelvic region to try and get the lymph nodes.

There is a facility in Georgia (RCOG) that provides the brachy and IMRT combo and they claim very good results. Another that does this is Dattoli in Florida. Tampa I think. You can google both and read up on thier opinions and options. I spoke to both facilities and they took a lot of time to tell me about their treatments and results.

I also consider adjuvant chemotherapy with the IMRT and HT. This was a trial and my oncologist could have gotten me in but at the end of the day I decided not to pursue this track.

Best thing you can do is get educated on this disease, ask all the questions you and anyone you know can think of, and then make the decision and don't look back.

I wish you the best of luck with your treatment. It is a most perplexing disease with few clear cut choices for treatment particularly for the advanced cases.

Best regards,

Don

Whatever the treatment chosen, I'd want mine to be "agressive" - and I wouldn't be put-off by the phrase.  I chose my treatment because I wanted the cancer out of my body.  about incontence and ED issues:  I relegated them to secondary concerns . . . because treatment of and the removal of the cancer in my body way my primary concern.  I think the most important thing for you to do at this stage is to find a team of medical advisory in whom you have complete confidence, and then select the treatment choice.  Best wishes for a successful outcome.

GRAY PANTHER, welcome to the forum
It is always a wise move to get other professional opinions.....one doctor's opinion is just that, one doc's opinion. He may very well be right but it is reassuring to get back up advice. A good oncologist would be a good person to consult. Radiation can often kill cancer cells at a wider margin than surgery could remove so it may well be the best line of attack. The problem with the higher grades of cells (4s or 5s) is that in general they put out less PSA per cc. of tumour (grade 5 puts out 1/2 of grade 4 which in turn puts out 1/2 of grade 3) so sometimes the actual PSA level can be misleading as to the extent of the tumour. John T's suggestions are very sound. If you want to read the stories and treatments of quite a few Gleason 8, 9 and 10 fellas......there are quite a few here.

www.yananow.net/Chart-Gleasonu6.htm#8

Stay with us and best wishes for whatever treatment you choose,
Bill

Welcome to the club Panther. As others have said I wish you were not here but since you are lets make the best of it.
I am a gleason 9 and I opted for surgery. Once the surgeon found my cancer in 3 lymph nodes it was aborted and I still have a prostate. I then started 44 rounds of IMRT and ADT3. It seems to have worked so I am not complaining. I to agree that you should educate yourself however this is aggressive and I think it needs immediate attention.

peace to you
dale

Hey guys, I recently received my copy of 'snuffy''s book, and found it interesting that he seems to advocate removal of the prostate, even if the cancer has spread outside (I -believe- I interpreted that correctly). His reasoning being that when the prostate cells eventually become resistant to the hormone therapy, one of the first places it starts from again is.....the prostate, so may as well remove it to begin with.

What do you guys think of that?? I know that as mentioned here and in general, the prostate is usually not removed if the cancer has spread. Yet many folks recommend this doctors book as required reading...

Gray Panther - not trying to hijack your thread, my father too has PCa with gleason 9 & 10 biopsies, and was recommended the same sort of treatment you were told. His scans were also clear other than the known seminal vesicle involvement in his case.

Hi Gray Panther,
Sorry to hear of your diagnosis. I just wanted to tell you that my father's stats are very similar to yours. He also had gleason 9, 12/12 biopsies all positive. My father is a physician and of course he started to hit the internet and books. He spoke with many reputable physicians in the area and a handful of them recommended surgery. At Sloan, they believe in "debulking." The idea that removing the tumor in and of itself regardless of whether the cancer is encapsulated or not has beneficial effects on life expectancy.

Of course I am not a doctor, but I just wanted to share with you what my father has been told. Of course there is also the other argument that the cat is out of the bag and that surgery will be a failure. But knowing myself, if there is a 25% chance that the cancer can still be encapsulated and I can potentially have a cure, I would take it.
Good luck.

Lynne
LuvMyDAD

Hi Gray Panther

My first urologist told me with a Gleason 7 the cancer had escaped the prostate and told me surgery would do no good and my best course would be to have braky and radiation. I wanted the cancer out so I had regular surgery and have had had zero's for two and a half years. Get a second opinion by a real cancer center, I had my surgery at Duke Medical Center, they have a pretty good basketball team at the University too. Take care care and keep in touch.

Mika

Keep us posted Gray Panther and we wish the best for you and your family. Glad you are getting another opinion or two.
Michael