[69yr. active, PSA 17.47 (tested for Urolift), Biopsy 3/30/20: Gleason 9 (4+5 & 5+4), No spread CT/MRI, possible extension to periphery]
Just now wrapping my head around this. I sure hope that someone can point out something that I am missing! I'm an engineer and I am not ashamed to bring cost effectiveness into any decision. I hope that this does not seem rude.
Surgical castration is a medical service, so one-time cost is limited by an out-of-pocket cap. This cap will already be reached by other prostate therapy. Lutron will cost thousands for years.
I understand that with surgical castration it will not be likely that I will ever return to my DIY lifestyle, laying my own pavers, painting my own house. Maybe I wouldn't be doing those things in my mid-70s anyway. I understand that with chemical castration I have a chance to approach my present subjective health in 4 or 5 years.
Right now my worst fear is spending down our IRA (selling *LOW*) to outlive my term life by a year or two. My wife's family lives to late 90's.
I am totally new to this forum, this type of problem, this type of decision. Thanks in advance for any comments.
Edit and gist of my replies so far below: MANY THANKS TO ALL OF YOU! Your replies have done wonders for my frame of mind. I have much to investigate, but right now, along with aggressive therapy, I am thinking that I will be accepting the Lupron for at least a few months and learning what my life is like without testosterone. As I have mentioned below, it won't really affect my sex life, so that is not a consideration. And I am still trying to learn what the actual financial impact will be. Thanks!
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LuckyInOregon
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Orchiectomy is not for you right now, at least based on the info in your post. I'm sure you already had a bone scan/CT, and since you didn't mention it, I can only assume it was negative. That means that, as far as you know, you do NOT have advanced prostate cancer. It puts you in the risk category "very high risk" localized prostate cancer. If it is indeed localized, it may be curable. That may mean Lupron for a year and a half, but not for a lifetime.
For $2784 you can get one of the best PET scans at UCLA:
If it is also negative, your most economic and oncologically best decision is to pursue curative therapy. The therapy with the best track record at top institutions is called "brachy boost therapy." Recent data prove that 18 months of Lupron should be given with it, perhaps a little longer in your case (discuss with the radiation oncologist):
I recommend that after you get the PET scan, you make a telephone appointment with Mitchell Kamrava at Cedars-Sinai to discuss brachy boost. You can get the high dose rate brachytherapy done in one day at Cedars, and the 25 external beam treatments done locally in Oregon.
Another option, especially during this pandemic, is to get just 5 external beam radiation (SBRT) treatments done at UCLA. Amar Kishan is running a "high risk" SBRT protocol on which they have treated around 400 patients so far with excellent (toxicity and oncological) outcomes. Interestingly, you may not need as much ADT with SBRT monotherapy, but that is a good discussion to have with Dr Kishan.
Brachy boost is the "tried and true" with about 40 years of data. SBRT radiologically emulates brachy boost, but is the new kid on the block. Both are excellent choices, imho.
In either case, it's a good idea to get a 6-month Lupron shot now. That will stop any further progression, and it may be ideal to delay in-hospital treatment during the pandemic. If you decide to get the PET scan, detection rates may increase for 1-2 months, but will then be suppressed, so that is something to decide now (or after talking to Kamrava and Kishan).
Thank you! Yup, CT and MRI showed no spread, but heading that way. And I think you are right. Starting with Lupron would leave options open while I process.
And new data! One of those Lupron shots lasts 6 months? I said, "I sure hope that someone can point out something that I am missing!" You nailed it.
I have had an orchiectomy 27 years ago. It does not impede your lifestyle and can provide years of quality life. If your Pca comes out of remission you can go to radiation which I am assuming would be covered by insurance and cost effective. Radiation could provide still more years of quality life.
Thank you. Your reply and the others have done wonders for my frame of mind. My plans are pretty much in flux, but right now, along with surgery or radiation, I am considering a trial run with Lupron, almost as a rehearsal for castration.
I should mention that it couldn't affect my sex life much. Luckily, my wife and I have shared a diminishing level of libido and functionality over the last decade. It's no longer a part of our lives. I don't know if it's cause, effect or coincidence, but we are closer than ever.
I agree with Tall_Allen. Wait. I can speak with experience, In biopsy, I had ton of involvement, seminal invasion, G8 clear scans and MRI. had RP (Seminal invasion, clear margin, no lymph node, staged @T3B), 4 wks later had 36 doses radiation and then bio fail 8 wks after that. PSA doubling time in weeks. Went on Lupron for next 8 years. Tried intermediate ADT but PSA would would jump from .1 to 3+ in a 3 month rest. Doc told me was incurable but hopefully controllable for long time before gets into bones.
I had great insurance at work that covered 100% of the $21K for 6 month Lupron shot. I decided to retire early, became extremely afraid of cost as well as I was noticing some issues I credited to Lupron side affects for several years.
I was never going to be able to have a T count again unless some miraculous science happened quickly so I opted for surgical castration while had great insurance coverage. Overall I'm happy with that decision. I to worried about running out of money in retirement, I worried about the horrible brain fog I was experiencing and I wasn't fond of some of the articles of findings of extended use of Lupron.
The surgery was 5 yrs ago. In that time my PSA been steady <.03 and still have yearly scan showing clear of Mets.
I am in late 60s now, live remote in the rural hills of SE Ohio and have lots of projects like putting up firewood, gardening, woodworking, remodeling, landscaping, managing a forest with a fair share of dead ash.
I definitely slowed down some but believe more to do with age and enjoying smelling the roses more than having to do with surgical castration.
Don't give up on doing those projects and keeping stuff in front of you that you enjoy and give meaning to keep kicking.
Hardest thing for me was grasping that wasn't a young stud with 300+ T count and learning to pace myself but still challenge myself physically and being happy with the results...instead of being disappointed and depressed.
My summary opinion, Surgical castration is way to go if you know for certain that you are incurable and can never feed your cancer with a T count.
Surgical castration was primary treatment for advanced PC for decades before expensive chemical ADT. I believe chemical ADT has it's place where a possibility of being curable and to return to having T. Every person with PC dream... having sex and/or T count.
Bothers me something huge that last I checked, could get 6mth Lupron from Canada Pharm for $9K, less than half of here in states.
Please do careful, empirical and objective research before making final decision. This is just my story and my opinion.
Thank you! This is very reassuring. After reading all these comments, I do plan on waiting and going with hormone therapy for a few months, but your story also offers real hope of a great quality of life without testosterone. I think that my urologist tried to explain this, but I was rattled enough to reject any hope.
Thank you. I still have much to learn. I have just scratched the surface but I *may* have learned that Lupron will have a 28% coinsurance and a "catastrophic" copay at $6000 of 5%. Will be pressing for more details in the morning from Urologist, clinic and insurance.
That doesn't sound like very good insurance! You must still be working?, Medicare covers this at 100%. You may be able to get discounts from places like these:
ADT isn't much fun, but it is bearable and it goes by pretty quickly. It's tough, but remember to keep exercising and weight lifting to keep your muscles from going to jelly. When your T comes back you'll feel more energized than ever. Of course it's up to you, but at this stage my recommendation would be to run from any urologist. They do well with other issues but seem to fall apart when it comes to prostate cancer. Did I see in a previous post that you were getting a 2nd opinion at Moffitt? That's where I had my HDR brachy/IMRT and would recommend highly. Best brachy guy in the country
Consider RALP (robot assisted laparoscopic surgery) to remove the prostate. The advantage of surgery is that the surgeon can visualize the area around the prostate microscopically and look for any spread to seminal vesicles, nerves, etc. Get second opinion from a urologic surgeon specializing in and with extensive experience. Maybe prostatectomy would be the best option. Plus, pathologists will dissect it post-op and determine the ACTUAL staging of the cancer. Best wishes!
This was the first suggestion from my urologist. I am going to return to this topic with him. You guys have really helped me regain my balance. Thanks.
The first I would do (and have done) is get all the information I can for a decision. I was on AS for 11 years then recently had surgery. One of the things that helped was a book by Dr. Patrick Walsh, something like Surviving Prostate Cancer (full disclosure I have no interest or connection). Though a few years old it does have good basic advise and information.
If your tumor is localized as indicated, having it taken out may be in your favor. Two options are radiation and surgery to kill/remove the tumor. As noted surgery will remove the tumor as well as allow the inspection of lymph nodes and staging of the tumor. Radiation is a longer process. Both may or may not have similar side effects.
If considering surgery, I would not focus on robot assisted. Studies have shown the the best outcomes are based on the surgeons experience and similar for RALP and LP. The book mentioned has a section on choosing a surgeon and questions to ask.
My surgery was LP by a surgeon at a specialty center. I was in the hospital one night and released the next day. So far (2 months) things have gone as predicted.
My best advice would be to study every thing you can. Get as much information as you can. Then make a decision.
Thank you for taking the time to reply. The robot assist was the first suggestion by my urologist, with an emphasis on the hundreds of surgeries that his guy had under his belt. (Under his belt! For better or worse, my sense of humor is returning.) Robotics or not, it would be beautiful to know where I stood with this thing after the therapy is done. One thing that robotics has going for it is how much that would have pleased the Issac Asimov fan that I was as a teenager. "I never made it into space, kid, but I did get robotic surgery!"
Once 'they' are removed, there's no going back versus the possible side effect of ADT.
I was G9 at Dx in 2017. Surgery was not an option for me because I was node positive.
Assuming that ADT is beneficial for you, the time in treatment AND the recovery /withdrawal time is factored in, you could return to your former self in about 2 1/2 -3 years.
ADT could be a factor in curing your condition. I would strongly recommend that you keep 'them' - that would be the best situation IMO. I also agree with T_A in terms of your treatment options.
Thank you, and I recognize that you are correct. I am thinking that I will be accepting the Lupron for at least a few months and learning what my life is like without testosterone. And learning for sure what the actual financial impact will be.
. . . Given your numbers, it is unlikely to be "curative" --
that is, you are likely to have a biochemical recurrence, and require further hormone and/or radiation treatment. (I'm guessing -- I haven't run your data through the nomograms referenced below.)
There's a set of nomograms that will give you the stats, given what you know now:
With Gleason 9 tumors, there's a pretty good chance that the tumor -- or very small bits of it -- are already outside the prostate. "Small bits" won't show up on standard scans. But by the nature of exponential growth, even a tiny Gleason 9 clump of cells is likely to grow into a large clump of cells.
Thanks, Charles! The silver lining there would be that I could beat the deadline presented by my term life insurance!
My urologist fed my info into this type of calculator and told me that, with aggressive therapy and hormone therapy, I had, near as I can recall, an 80- or 90 something chance of survival after 10 years. As I understand it, though my cancer is extremely aggressive, we have discovered it extremely early.
I got a Urolift for an urgency/frequency problem that had been evident for a decade and getting worse. Nothing was seen on routine ultrasound scans before and after the procedure. But the PSA test that was a part of this procedure raised the flags that resulted in the biopsy and diagnosis. Subjectively, I have no symptoms and the Urolift was a success.
I will probably begin Lupron immediately following my video visit this coming Friday.
I appreciate your frankness and the time you took to reply!
You might want to research HIFU. I had that surgery at age 66 for Gleason 8 in 2016. I've been off ADT after the 1st 6 month shot. It wouldn't hurt to talk to a HIFU practitioner. I'm an engineer too.
3 1/2 years post HIFU surgery and my PSA has stabilized at 0.5 after hitting a high of 0.6 six months ago. My HIFU surgeon was based in Santa Rosa, CA and his operating facility was in San Fran. Dr Lazar. Your mileage may vary but I'm very happy with the results I got.
It sounds like you've made a rational decision, but based on my experience, I would give ADT more than six months to experience what it's like to have low T. For me, the full effects of low testosterone didn't really settle in until I reached the one-year mark. I've been able to tolerate the side effects with exercise, a good diet, the love of family, and, well, just keeping busy. But I believe six months is too soon to know what'd be like to have permanent low-T. On another note, my father had an orchietomy when he was diagnosed in the 1970s. He had metastatic disease (which I don't have at this point), and low and behold, he lived another 30 years until he developed pancreatic cancer at age 90. We've regarded his very longterm survival as a fluke, which it probably was, but my real point is that he lived a very full and active life after the surgery. He worked, traveled, enjoyed gardening, and walked a lot. And he and my mom were a close, loving couple until the end.
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