After reading FSMbeerMan's post, and the replies, I want to go a step further.
When I was dx in 1/10, I was told I had lymph node involvement, so surgery was out of the question. Fast forward to today, and it turns out that no lymph nodes were involved, but one biopsy core did show "possible" Perineural Invasion. I've been on Lupron the whole time, Zytiga added last year after a spike in PSA, and Xgeva started 7 months ago. Last year I had three mets, today I have none.
My question: Is it too late for surgery? Can it even be an option? Would it improve my Quality of Life? I'd like to hear from whomever has some input before I bring it up with my Uro.
While my situation was/is different, I remember when I was diagnosed with PC, doctors here in Boise didn't wish to do the surgery. They said I should "just have some radiation." Huh? But, one of my former students - who was finishing his internship at Loma Linds -told me without the "tumor load," I'd survive longer. So, my wife found a doctor at Mayo (Dr. Robert Myers, since retired, I believe, though I keep in touch) who would do it. I'm glad she did, and he agreed. My result was no lymph node involvement; no seminal vesicle involvement; negative margins; extracapsular penetration, so I was T3b, I think. Still, my PSA remained "undetectable" until almost 3 years ago, and it continues to fluctuate between .12 and .18, usually at .15. Everyone here tells me I will relapse soon... but, I am convinced the surgery helped me/gave me these many years, and is perhaps why my PSA is in an "indolent" stage at this time.
Only doctors can tell you for certain... and, many factors are in play (age; health, etc.) but, it doesn't hurt to ask...
I came to know about Dr. Myers just a bit too late. I was, and still am graded at T2b N0 M0, now that the mets are gone. So, I will consider your post a positive on my scale of...whatever the hell I think. lol I thank you for the reply, and wish you well.
I don't know the answer to your question and I don't even know how to evaluate a statement like "Last year I had three mets, today I have none." I assume that means that whatever test showed your mets last year was repeated this year and no mets appeared. That could mean that the test gave a false positive a year ago, a false negative this year, or a true negative this year. If the test was some sort of scan (x-ray, MRI, something else), the lack of appearance of a metastasis might mean that they are truly gone, or might mean that they have shrunk either in size or in density to the point that they no longer show up on the scan but are still there. If they are still there, that might mean that an RP will be of no help, but it might not mean that at all since some studies are reporting that RP can be very beneficial even if some metastases are present.
I would think that what you need at this point is some really expert advice, i.e., a second opinion or maybe even a third, from the very best expert you can find.
If you are in the U.S., here is the National Cancer Institute's list of "designated cancer centers" that they think do excellent research work:
As usual, you take the responsible approach, which I very much appreciate. It's true that my imaging from last year is very much in question. Actually, there were disagreements among some radiologist whether I had mets or not. You set me on another mission. If this has anything to do with the inability my previous Uro/Onc, I will go right over there and curb his ass.
Especially given the disagreement between radiologists, it could be important to get copies of the actual scan images, not just the radiologists' reports, and bring them with you if you go for a second opinion.
Getting copies used to be a difficult and expensive proposition when they were done on film. But nowadays everything is digital and the hospital or clinic that did the scans should be able to download the images for you to a CD R/W or a thumb drive. I use Kaiser Permanente for health care and when I had an MRI done at one of their facilities they had the results stored on a central server. From any of their offices they could download the data and put it on a CD for me. They even gave me, without my asking for it, a Windows application that went with it that showed the animated images enabling me, or more usefully the doctor I showed them to, to focus back and forth for a three dimensional view.
Don't be too harsh on the guy who wouldn't do your RP. He probably thought he was doing the right thing. I'd be more angry with a guy who does an operation that can't do any good but he does it anyway to get your money.
You know Alan, it wasn't that he wouldn't do the surgery, I wasn't offered the choice. In hindsight, I think he should have removed it, or offered me the choice. I would have gladly given up that nerve to be able to live better today. It's really a moot point, he didn't read my biopsy correctly. And to make matters worse he got the boot from the practice, and can no longer practice here. Ain't that a slam.
As long as you did not have radiation I do not know why surgery would not be an option. However, do not take the word of a chemist, please consult a surgical urologist.
Scans showed that I had at least one suspicious lymph node. Pre-surgery, I discussed my options last year with my urologist. I had to fight with him to agree to continue with the operation if they first found a cancerous lymph node. Of course the cancer did spread to the pelvic lymph nodes but they kept there word and continued with the surgery. It was a good thing for me as I have a rare form that does not respond that well to chemo or radiation. (I still ended up having 38 rounds of radiation along with Lupron and Zytiga.)
Joe, I think you need a forward thinking medical Oncologist instead of a uro. This topic has bothered me for 11 plus years, Horst Zinche from mayo ,Minn. First showed much better survival during rp when cancerous nodes were removed,before that they just closed you up if they found cancerous nodes, I think 25 years ago. I have never been able to find a MO who would advise that. It makes sense killing 10 million cancer cells and likely the most mutated and oldest of your cancer,but must have the most expert surgeon, as side effects of RP can be a real problem .If you have clear scans now, I am not sure why they would not do it, I know in 06 when I went to myers (Snuffy), not the surgeon from mayo) He suggested with clear scans I could get radiation wioth his expert in FLorida
I would consider getting established with a Medical Oncologist, ideally with a specialization in prostate cancer at a Center of Excellence. This person can be your advisor when it comes to further systemic drug/treatment options, and refer you for more second opinions. Meanwhile, you might research "oligometastatic prostate cancer" on a broad level. Names like Dr. Eugene Kwon at Mayo Clinic may pop up. In parallel, you might research types of advanced scans, such as C-11 Choline, PSMA PET, and Axumin PET Scans, and their locations, and the doctors most likely to use them, and take "out of the box" actions with the imaging results. You might also expand your consideration beyond surgery to possibly include targeted Stereotactic Body Radiotherapy (SBRT) or Stereotactic Hypofractionated Radiotherapy (SHRT) for Oligometastatic Prostate Cancer, in which case you may be interested in adding an agreeable Radiation Oncologists to your team, or perhaps looking for the equivalent in a related Clinical Trial.
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A Year of Treatments.
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Proteus clinical trial is a good option
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