Just diagnosed-confused

Was diagnosed with prostate cancer on December 22, 2016. Had a CT scan on December 30, 2016. Meeting with my urologist January 5, 2017. Two of twelve biopsy samples had Gleeson score is 6.

Ive been reading a lot on the internet (hey, I found this message board) so am sorting a lot of information in my mind. I guess I'm leaning toward surgery, and am looking for recommendations.

13 Replies

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  • I'm sorry you've joined out club, but I'm glad you found us. What's your age? Do you know your PSA score or the rate of rise?

    I was diagnosed at age 43 with some pretty serious numbers. I'm 53 now. I've had surgery, radiation, hormone therapy, Provenge (blood cell manipulation), and now much more powerful hormone therapy.

    Your Gleason score and relative few number of affected cores suggests radiation (internal seeds or external beam) could be a good option for you. I'm not recommending that--just suggesting you give it serious consideration.

    Best wishes to you. Keep in touch!

  • Thanks for the quick reply. I'm 57 years old and my PSA was 4.6 in early December, 3.9 in early September and 2.6 in September of 2015. My free PSA was at 9%

  • I think the first thing you should do is to decide not to decide. It takes a while, a few months probably, for the initial shock to wear off to the point where anyone can make a really rational decision. Especially with your diagnosis, you have plenty of time - years probably - before your cancer is likely to progress.

    The next thing you should do is have your biopsy samples sent to Dr. Epstein's lab at Johns Hopkins for a second opinion. This is the most important aspect of your diagnosis, and it's critical that you get it right. He is the gold standard.

    Assuming it's correct, the first thing you ought to consider doing is called active surveillance. In the longest running study of it, about half of the men who choose it are able to stay on it without any treatment for 20 years so far. PC is a weird kind of cancer - in many men it never progresses. You seem to have the characteristics of the kind that never progresses.

    No patient can make a reasonable decision by talking to just one doctor. I talked to 6 different specialists before I decided. Surgeons don't know squat about brachytherapy, brachytherapists don't know squat about surgery (although they all have opinions about all the other treatments, and they all advocate for their own specialty). It falls to the patient to meet with them, get the info that they do know about, and discard the rest. It's a difficult process to take on, and many patients are not up to the task. But if you are, I can guarantee that you will feel better about the choice you eventually make when it is time to decide.

    There are several therapies that will cure you equally well, so your decision will not be made on that basis. It will be made on the basis of other considerations, like side effects, expected quality of life, and your own feelings.

    This reply is getting long, so I won't go into a discussion of all your choices right now, other than to give you a list of what they are: active surveillance, surgery, SBRT, low dose rate brachytherapy, high dose rate brachytherapy. Focal ablation is something I'd consider cautiously. IMRT is inferior to SBRT (takes longer, costs more), and protons is about equal to IMRT, so I would rule them out - but you may certainly want to gather info on them anyway to assure yourself you've covered all your bases.

    Please ask questions.

  • Wow! Great reply. Thanks for taking the time to help!

  • NEPA, Tall_Allen's response is right on the money. I wish I had known of this website when I was diagnosed. You definitely do not have to make an immediate choices. Copy Tall-Allen's post and put it on your refrigerator. Read it. Think. And wait to act. I wish you the very best. Keep us posted. By the way, my PSA was 4.5 and I had radiation treatments.

  • Thanks for your information.

    I was just diagnosed 3 weeks ago. Abdominal Scan with PI:RAD 5 and Gleason 6. Biopsy was done at Mayo Clinic in Rochester. Lot's of information and many questions.

    My local doc's are concerned about the size, location and shape of lesion. Five of 6 core samples were 3+3. I am 66 years old.

    Local docs are questioning the Gleason 6 ... as it might it be 7 or more because of shape/location/size. Doc's at Mayo not really concerned about it and give no advice.

    I was considering the Brachytherapy seeds, but my local docs are recommending surgical removal.

    Any thoughts?

  • As I wrote above, get a second opinion from Epstein on the biopsy slides. You only had 6 cores taken? Uros always recommend surgery. It's what they do. Read my response above to NEPA - it applies to you too. As long as all your cores were GS6, you don't have to rule out AS.

  • Hello NEPA, just saw your post and wanted to say hello. A diagnosis no one wants to get however sounds like it was discovered early. Good luck on what ever decision you make. For me it was very clear, it was discovered early and I'm a healthy man so my decision was get the damn thing out of me so I could get on with my life . I looked at all my options and decided on RP. Good luck on your decision and like it was said earlier you have time to decide what's best for you.

  • Thanks to everyone that left a reply. They are all quite helpful.

    My follow-up with the Dr was earlier today. My CT scan was clear! So he sat with me for an hour and a half reviewing my choices. While I didn't make any choice... I'm leaning toward surgery.

    I'm going to get a second opinion and talk to some physicians about non-surgical alternatives. In the meantime if anyone has suggestions regarding good surgeons or a treatment they believe I should check out, please let me know.

    Thanks again for your support!

  • What part of the country do you live in?

  • I live in Northeastern Pennsylvania. About 2 hours from New York City and Philadelphia, 4 hours from Boston and Washington.

  • If you're close to NYC, that makes it easy. Memorial Sloan Kettering is as close as they come to one-stop shopping. They have one of the best active surveillance programs around and two of the top surgeons in the world (Scardino and Eastham). Michael Zelefsky has a bias to LDR brachy, but certainly knows more about all forms of radiation than just about anyone. If you want to learn more about focal ablation, Jonathan Coleman is the man to see.

    That said, the only surgeon I would ever have considered is Ash Tewari at Mt Sinai. I also would talk to Alan Katz in Flushing about SBRT/CyberKnife. He's done more than anyone and is publishing his 10-year results this year.

  • Wow! You have done your research! Thanks very much for sharing it with me.

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