New here - considering treatment options

[gamma909]

Hi - I am new to the group and recently diagnosed with Gleason 7 and PSA 4.7. Interested in learning from others so that I can make a treatment decision. Oncology surgeon recommends removal (he was clear that he has a bias) but wants me to also consult with radiologist and offered to connect with me with other second opinions. He was also clear that I could pursue active surveillance but did not recommend it. Like many of you, I am overwhelmed with info so welcome advice, recommendations, etc. I am seriously considering prostatectomy but worried about side effects - I am very active (running, biking, weight lifting, etc.).

[gamma909]

Thanks for the reply and information. I will read the books you suggested. I also got a copy of Harvard Medical School's 2018 Annual Report on Prostate Diseases which I found to be quite helpful along with the numerous other publications I've read.

[AlanMeyer Moderator]

Hello Kurt,

Different institutions have published slightly different criteria that make men good candidates for active surveillance, however I think all of them only recommend it for men with a Gleason score of 6 or less. Your Gleason 7 puts you in a somewhat riskier category. If your Gleason score is 4+3, that is riskier still compared to 3+4.Here is an article that surveys some of the studies of criteria for AS:

ncbi.nlm.nih.gov/pmc/articl...

Age is also a factor. The older you are, the more likely you are to die of something else and therefore less in need of treatment. The younger you are, the more likely you are to die of PCa because, even though it may take 15 or even 20 years to kill you, if you are under 60 now and in good health (which you appear to be), you might be giving up a number of years to the cancer. Early death is not the only consequence either since the later years could be marred by the symptoms of the cancer and the side effects of their treatment.

There is a chance that, by waiting another 5 or 10 years, you'll be able to benefit from some new, as yet undiscovered, therapy that will cure you without the side effects of surgery or radiation. Personally, I think that such treatments will be discovered eventually, but I'm not sanguine about that happening soon enough to help today's patients.

The risk of active surveillance is that, when it is finally determined that treatment is necessary, it will already be too late to effect a cure. The chances of that happening increase a bit for every year that you continue AS. I therefore think that, if a patient and his doctors think that treatment will eventually be necessary, there are benefits to doing it early and increasing the odds of success.

The major downsides of surgery that most men complain of are impotence and incontinence. By impotence I mean the inability to get a usable erection. For most men it is still possible to achieve orgasms, but not in the traditional way. There are treatments ranging from pills (e.g., Viagra) to injections that help many men, but not all and not all like it. Sexual side effects of some kind will be permanent for all men (e.g., no ejaculate because the prostatic fluid is no longer present.) Some men handle all this well and some wives adjust very well and they maintain a good sex life. Some don't. It requires love and adaptation. Incontinence may be permanent or temporary, and may be serious or limited. I've met men who wear diapers and plastic underpants, change them several times a day, and consider it a small price to pay while others, who dribble a few drops when they sneeze, consider it a major cross to bear.

I think that if you get surgery you will have to reduce or stop exercise for a period of months. However once the surgical incisions heal, I think you'll be able to build back to the high level of fitness that you had before. Check with the surgeons about that. I was treated with radiation plus Lupron. The Lupron knocked me out more than the radiation did. But after that wore off I was able to get back to regular exercise.

If you decide on treatment, whatever you do whether it's surgery or radiation, get the best doctor you can. It should be a man or woman who is experienced, capable, and committed to his or her patients. It should be a person who specializes in treating PCa, not a general urologist or rad onc who only treats a half a dozen PCa patients per year. Getting the best doctor minimizes your chances for serious side effects and maximizes your chances for a cure.

And if you decide on AS, be sure to emphasize the ACTIVE part of the strategy. Get regular PSA tests, get occasional MRI's and maybe repeat biopsies once in a while to be sure that everything is still low risk.

Best of luck.

Alan

[gamma909 in reply to AlanMeyer]

Alan-thanks for the informative and thoughtful reply. Giving my grading and Gleason score, I am on the fringe of someone who could consider AS and I have not found research indicating that AS is the way to go. There is also one research paper indicating that about 25% of LvIR's like me subsequently find out that the PCa was more serious once the prostate was examined. I am fortunate that my Urologist is an Oncologist and has performed over 2000 radical PEs - if I decide to go that route.

[dans_journey]

Hi Kurt,

Sorry that you've joined this club. I was diagnosed in November 2010 at the age of 52 (PSA 5.0, Gleason 3+3) and opted for a robotic radical prostatectomy as my primary treatment option.

The pathology after the surgery was pretty good, although my Gleason was upgraded to 3+4. That would be a concern that I would have in your situation starting with a Gleason 7—could the biopsy needles have missed more pattern 4 cancer cells and you're actually a Gleason 8? Sadly, only a post-surgical dissection of the prostate will yield a true Gleason.

Because my tumor was so close to the edge, my surgeon couldn't spare one of the two sets of nerve bundles needed for sexual function. It took the better part of 2+ years for me to get to 70%-90% erections on my own. (Cialis seemed to screw with my vision, so we stopped it.)

I had negative surgical margins, no extra-capsular extension, no lymph node or seminal vesicle involvement, and my post-surgery PSA remained undetectable for 54 months.

Then it came back.

In September 2015, my PSA became detectable at 0.05 ng/ml, and it's been slowly climbing ever since to 0.11 ng/ml in April 2018 (I go for my next PSA test on 1 August).

In April, my urologist referred me to a radiation oncologist in May. He wanted to start salvage radiation therapy right away, but he was okay with waiting for a little while longer given my slow PSA doubling time. The August PSA will like show yet another increase, and I'll be one step closer to having to make a decision.

My surgeon was up-front with me before the surgery, telling me that there was a 20% chance of recurrence even if everything goes well. It went as well as it could have gone, and my cancer is back.

I know that it's an unnerving time for you right now, and you're on the right path by doing your research. There are risks and rewards to all treatment options, and you'll have to weigh those for your own personal situation and make the decision with the information that you have at hand.

I wish you all the best.

—Dan

P.S. I've been sharing my story since Day 1, so this may or may not be of interest or value to you: dansjourney.com/

[gamma909 in reply to dans_journey]

Dan - thank for sharing your experience and words of encouragement. I am working through your blog - what a fantastic thing for you to do. I have been researching almost non-stop (hard not to obsess) and continue to come back to radical prostatectomy as the likely choice. Cancer runs on both sides of the family and I have had colon polyps removed so I am probably most comfortable with removal. I still plan to meet with a radiologist to get their opinion. At some point, gathering more information makes things a bit cloudier rather than clearer. My surgeon is very experienced which provides me with some confidence. If you have a minute - are there any particular questions that you found to be insightful and perhaps I might overlook?

I wish you the best with your upcoming PSA test and it sounds as though no matter what the result, your positive, can-do attitude will pull you though.

Kurt

[dans_journey]

Hi Kurt,

I was pretty fortunate in the surgeon that I selected. You could tell that he was used to getting asked the same questions over and over again, and he beat me to the punch by answering many of them before I could even ask them. Pretty much the same thing happened when I saw the radiation oncologist back in May.

By doing your research as you are, you'll have a list of written down questions to bring with you, and I would really recommend having a supportive pair of ears in the room with you, listening and writing the answers down if at all possible. Don't be afraid to ask *any* question. I was a bit hesitant to ask about the sexual function side of things but, again, my surgeon broached the topic for me making it easier to talk about once we got going.

For me, it was important to understand the surgeon's *personal* complication rate. Our research told us what statistically might happen, but I wanted to know how the surgeons I was evaluating stacked up against the statistics. If they don't know or share the answer, that would have raised an eyebrow with me.

The other thing I would make sure of is that the doctor is accessible to answer the questions that you think of on the drive home, in the middle of the night, the next day, or the next week, because that *will* happen.

I'm not sure if that helps or not. Thanks, too, for your kind comments about my blog. Happy to keep it going because having those first-hand experiences shared with me was really valuable to me.

Wishing you all the best with your research and decision.

Dan

[NolHaltom]

Kurt, I was 71 when diagnosed with Gleason 6...opted for a wait and watch monitoring. My oncologist agreed with Urologist. I also chose to get second opinion at UCLA. That Dr. concurs but moved the second MRI ( which was a more advanced 3D scan) and Biopsy from one year to 6 months. Biopsy Aug 2nd. I'm good with that.

[gamma909 in reply to NolHaltom]

Thanks and I wish you good luck and good health. I guess we all learn that every single situation is unique and we each do our best to have confidence in whatever decision we make given that there in no certainty. The best we can do is to listen to everyone else's story, support each other, and pick up a few nuggets of wisdom along the way.

[blindsquirrel]

Kurt, I was 66 when diagnosed a year ago with Gleason 6 and a PSA of 6.4. Have been on Active Surveillance since then. Going back for my first annual follow-up biopsy next week (fingers crossed). Have learned a lot from this site -- many awesome members who have excellent posts. Haven't had to choose a therapy yet, but between RP, radiation, and HIFU, I'm leaning toward HIFU if choose I must. Best of luck to you.

[gamma909]

Thanks for the reply - I wish you the best of luck on next week's biopsy and continued good health. Was there anything in particular that has you leaning toward or away from RP, radiation?

[LVRob129]

Plenty of options and new ones coming forward. HIFU, Proton Beam are two options. Reoccurance rates are similar with all treatment options that I have seen, thus I found quality of life options more important. I did Proton Beam back in 2011 and had a reoccurance, and went with HIFU. None of the options are good. Immunotherapy shows good promise. Take your time and do your research so you are comfortable with your decision.