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Should I be concerned?

Hi, I'm GARY S

I had a radical prostatectomy a little over a year ago at 60. My PAS went from 1.4 to 8.6 in 4 months. The 4-K test showed an 87% chance of prostate cancer. The biopsy concluded I had cancer in 6 locations. My Gleason score was an 8. At the time of my surgery my PSA was over 15, so it was obviously an aggressive cancer. I went through the nuclear bone scan which initially showed a “hot spot” or a hit on my shoulder. My Urologist told me I hade an 80%+ chance that I had stage 4 bone cancer. I lived with that diagnosis for over 2 weeks and thru the grace of God another scan proved it wasn’t bone cancer… 2 days after Christmas I had robotic surgery to take the prostate out, along with the lymph nodes, partial nerve bundle too. My surgeon told me that I only had a 2% chance of the cancer coming back. At my last urologist visit I was told that due to the aggressiveness of the cancer they have upped the chance of the cancer coming back to 25- 30%! Has anyone else been told this? I’m a nervous wreck every 3 months when I go to get my PSA test, so far I am still under .1

  • Post #1
  • Thu May 2, 2019
I'm WILLIAM P B., and I'm a survivor of Prostate Cancer

I had my prostate out 3 yrs and 3 months ago. Gleason score was 8 with no limp node involvement. PSA at 0.1 for 6 months and started to rise. Now at 4.32. I had negative bone scan at 2.8 PSA , negative MRI of pelvic area, and negative G-68 PSMA test at 3.76 PSA. Very frustrating that they can not find where cancer is. Thus far I have rejected hormone treatments, but at this point it is my only option. I was told reoccurring prostate cancer usually goes to your bones which is the scary part. I’m 72 yrs old.

  • Post #2
  • Thu May 2, 2019
Hi, I'm JohnDavid

I can’t tell on my iPad if the two comments above are one or two people. I’ve commented here before. About 7 months ago I was diagnosed with stage 4 prostate cancer which had metastasized throughout my bones. Very aggressive. Had bone biopsy, and cistoscopy with biopsy of my prostate which had grown into my bladder and biopsy of a carcinoma in my left ureter to confirm all was prostate cancer. I’ve been on Lupron and Zytiga which have stopped testosterone production which feeds prostate cancer. I have a friend who years ago had prostate cancer, had his prostate removed, some couldn’t be removed, no chemo or radiation. 2 1/2 years ago the cancer returned. Had spread to lymph nodes and was now stage 4. He was told he had two years to live. He had chemo which “killed” the cancer, and for the last year has been on Lupron. He’s doing well. His PSA is under 1. He’s applied for clinical trials but not accepted because he is doing well. I’m 65, my friend is 70. I’m just providing for info and comparison.

For #2, why reject “hormone treatments” (what do you mean by that term?)? I’m not criticizing but am interested in your concerns. Without my testosterone being cut off (my oncologist has been very frank that it is chemical castration) I would have died by last January. I fully understand bone metastasis is scary, but treatment can halt prostate cancer growth, at least for awhile. It has for my very extensive bone metastasis. I know the effects of stopping testosterone production (hot flashes, emotional/mood changes, others) aren’t fun, but I’m putting up with them.

For #1, keep getting checked out. PSA under 1 and the bone scan you had are good indicators, but keep up with your doctor. My friend did not, which I believe led to his situation to a great extent. Don’t get complacent. My stuff was incurable at diagnosis. If you can avoid or forestall growth, keep at it.

I can’t emphasize enough trying to stay busy, being with people and getting counseling from someone experienced with cancer patients in dealing with your cancer. I’m just joining support groups for men with cancer and one for those undergoing treatment. I want to hear from others so I can know I’m not alone. That is why I participate on this site.

I really wish you well.

  • Post #3
  • Sat May 4, 2019
Hi, I'm RICHARD C G.

post #3 excellent support response. Overall, stay vigilant. I am suprised that a Dr. would give such a specific % of recurring PC especially one as low as 2%. Most % are within a range of 5-10% within a specific TIME FRAME such as in the next 5 years, 10 years etc. Our reality of cancer returning is very high but once again how quickly the return is diagnosed is of the utmost importance. Stay vigilant, maintain all appointments and try to live as close to a normal life as possible. Regular exercise is an important aspect to overall well being along as diet.
I had a RARP 3/17 and was assured that the return of PC was MINIMAL. Well, within 6 months my PSA started to rise and after 15 months I underwent 39 sessions of salvage External Beam Radiation Therapy. I am now in remission and in 2 months my next PSA will be taken. Hoping I will have a positive result. FYI I am now 69 yr old.
Every person is different but we all are together in dealing with this beast.

  • Post #4
  • Sun May 5, 2019
Hi, I'm Johnny G

I had a radical prostatectomy in April 2016. Post surgical pathology report showed that the cancer had spread outside my prostate. PSA tests showed persistent positives doubling rapidly up to 6.0 in a few months. MRI showed the cancer went to my perirectal lymph nodes so they put me on androgen deprivation and gave me the 39 doses of radiation. I was on ADT for 2 full years and had my last injection one year ago. I hated the well known side effects. It gave me osteoporosis in addition to all the quality of life negatives. Now my PSA has started increasing again and the Doc wants to start ADT again but everything I’ve read says it won’t give me any better chances for an improved clinical outcome. Has anyone been on ADT for longer than 2 years? My Docs have told me that with my aggressive cancer, it’s a sure thing that sooner or later the cancer will become castration resistant meaning it will start growing again in spite of the ADT. So I’m wondering, what’s the point?

  • Post #5
  • Sun May 12, 2019
Hi, I'm JohnDavid

Post #4, thanks for the nice comment on my support response, and hoping your cancer stays in remission and your PSA result is what you hope for.

Post #5, I’ve posted a link below to a comment/opinion about ADT (written by a woman, so maybe more objective, maybe, than a man who has undergone ADT). Your comment makes me think, again, about my treatments. I wrote comment #3 and have laid out my situation in other posts. Like the guy in comment #4 said, we are all different, including the circumstances of our prostate cancer. From the start, my oncologist told me that Lupron would work maybe 2 years before the cancer cells began producing their own testosterone, that is, as you say, the cancer becomes castration resistant. He also immediately put me on Zytiga which in 2014 was shown to extend the effectiveness of Lupron if given concurrently with Lupron. I certainly hope so. I’ve felt a little better since January, and am getting counseling, taking exercise classes for people with cancer, going to support groups and trying to get active and fight the impulse to just sit around or take naps. After reading your comment today I did some searches about ADT and found the article I linked which hit home about fighting the weight and muscle impact of ADT. I hope it is of interest and help to you in deciding if you want to do ADT again. If here is a point to resuming ADT, that’s for you to determine. I hope you can find your answer. After my diagnosis I was introduced by a friend to a man who also had stage 4 prostate cancer which had metastasized like mine. We lived in different states and only spoke on the phone and emailed each other. When we started communicating he had been diagnosed and on ADT for 2 years. Things were not going well, but he continued to seek solutions including trying Keytruda which did not work. We were going to meet in June when I will be in his state but he died 3 weeks ago shortly after his doctors said his treatments would no longer work. He was 69. I’m 65 and right now doing well enough and my ADT seems to be effective. Hopefully someone on this site can give you some other insight. I know for me, at this point, I plan to try anything once the ADT fails, but that’s me, and my attitude might change if my circumstances and quality of life change. I’m hoping for you, though. Good luck.

https://www.pcf.org/c/adt-what-you-really-need-to-know/

  • Post #6
  • Sun May 12, 2019

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