Anyone beat Gleason 8 without surgery?

Posted by mistag @mistag, Jun 7, 2023

Biopsy came back with 12 of 12 positive for cancer, eight were Gleason 7 (4+3) and one was Gleason 8 (4+4). Six of the biopsies were 80% or greater. My PSA is 7.4.

I’m 60, I just started Leuprolide (Eligard) shots along with Bicalutamide daily pills. I don’t want surgery and I would prefer proton beam radiation. Anyone taking these same medications and what were the side effects?

Anyone with similar biopsy results and what did you do and how is your quality of life?

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

I agree with the above post as a surgery after radiation is possible and needed and it is certainly done. However, I think that most surgeons will add that such a surgery would probably not be the same quality and as effective as a RP before radiation. Before my RP my surgeon at UCLA wanted me to have 6 months of ADT because that might increase the effectiveness and quality of surgery and that would make the cancer softer and he would have a better chance of getting it all and securing a cure. I followed this advise. I may have gotten a cure as the cancer was confined in the prostrate and one seminal vehicle. I am a year post RP and no issues. I am hoping for a cure and at 76 I may have gotten one, but my Gleason score was 9, so I have reservation on the cure issue. This is a battle that we are all fighting and we are all hoping for effective treatment and a long long journey and a good quality of life. Good luck to all.

REPLY
@remington

I was diagnosed Gleason 8 20 mo ago. PSA was 6.6, cancer was contained. Because of my hypertension I was not a candidate for surgery. I started Lupron in Dec 21, 20 doses of radiation in Feb 22, and will receive my last of four Lupron injections net month. The good news is my PSA is undetectable! I guess for the moment I can say I've beat it. The bad news is for me the side effects of Lupron honestly make me wonder if it's worth it. My quality of life has greatly deteriorated.
Read up on hormone therapy and decide. For me if I could do it over I would have had surgery and taken my chances of dying on the table. Best of luck.

Jump to this post

Good input and hope that you are now in long term durable remission! In context to the ADT treatment and side effects, did you experience what you expected to happen, or did things happen that were not expected? I think ADT does indeed impact QOL but how you set expectations before starting the treatment is of equal importance and inquiry.

REPLY
@edmond1971

Good input and hope that you are now in long term durable remission! In context to the ADT treatment and side effects, did you experience what you expected to happen, or did things happen that were not expected? I think ADT does indeed impact QOL but how you set expectations before starting the treatment is of equal importance and inquiry.

Jump to this post

I didn't do any deep research which was a huge mistake on my part! My urologist simply said surgery will most likely result in urinary incontinence 10 years down the road and hormones/radiation will result in bowel issues about the same time. When I mentioned Dr Peter Welch's book and how he advised against hormone treatment she chuckled and reported he made a vested interest as he invented the robotic procedure.
20 months in I feel she is indifferent to my problems. I can live with ED but I wish I didn't have to drop my pants like a 3yo to pull the little guy out! To my notable cognitive decline she simply tells me I'm getting older. I keep gaining weight but I can't get my new knees until I loose weight. I went sailing last night and I couldn't maneuver around the boat. The "B Cuppers" that have appeared are more of a physiological problem than a physiological issue, although as it seems as I'm transitioning into a woman I wonder if a mammogram is in my future! Living with constant fatigue doesn't help and the body/joint pain really slows you down.
Other than some minor urinary issues I really don't think the radiation was a problem, but hormone therapy is. I was totally unprepared and in my case my doctor doesn't seem to be offering any help.

REPLY
@remington

I didn't do any deep research which was a huge mistake on my part! My urologist simply said surgery will most likely result in urinary incontinence 10 years down the road and hormones/radiation will result in bowel issues about the same time. When I mentioned Dr Peter Welch's book and how he advised against hormone treatment she chuckled and reported he made a vested interest as he invented the robotic procedure.
20 months in I feel she is indifferent to my problems. I can live with ED but I wish I didn't have to drop my pants like a 3yo to pull the little guy out! To my notable cognitive decline she simply tells me I'm getting older. I keep gaining weight but I can't get my new knees until I loose weight. I went sailing last night and I couldn't maneuver around the boat. The "B Cuppers" that have appeared are more of a physiological problem than a physiological issue, although as it seems as I'm transitioning into a woman I wonder if a mammogram is in my future! Living with constant fatigue doesn't help and the body/joint pain really slows you down.
Other than some minor urinary issues I really don't think the radiation was a problem, but hormone therapy is. I was totally unprepared and in my case my doctor doesn't seem to be offering any help.

Jump to this post

I appreciate the response, as I think every story told is something that can have a positive impact for everyone else. We are "taking one for the team" as we play out the current world of treatment methods for PCa. Your situation is not ideal to say the least and hopefully you can get off of ADT and find that the cells remain asleep and don't come back to life and achieve durable remission.

I tend to research my current and next steps and beyond I'm less in the know. However, the plan after I get off of ADT and when/if it comes back is to explore a PARP inhibitor such as Olaparib with an Androgen receptor signaling inhibitor such as Enzalutamide. I wonder if that might be something you can explore when/if the ADT rises again.

You did the right thing by making a choice to address the cancer.

It might be worthwhile to explore other health team members.

Keep The Faith

REPLY

In 2018 I was diagnosed Gleason of 4+4 at 73. I chose 20 sessions of Proton Beam Therapy and 18 months of Lupron. I was told that effects of Lupron take 18 months to go away after we stop the treatment. He was correct and my life is pretty much the same as before, except results of being 5 years older.

REPLY
@waynen

In 2018 I was diagnosed Gleason of 4+4 at 73. I chose 20 sessions of Proton Beam Therapy and 18 months of Lupron. I was told that effects of Lupron take 18 months to go away after we stop the treatment. He was correct and my life is pretty much the same as before, except results of being 5 years older.

Jump to this post

Great news! When you talk with your health team do they use the word "remission" or "durable remission" and how often do you check your PSA? I presume when on Lupron that your Testosterone level was very low, did you test it while on treatment and what is it now? I am very happy to hear that you had good results and welcome your feedback. Thank you!

REPLY

We never talk about remission. We check the PSA every year. At first it was every 6 months and the last 2 years yearly. The PSA was less then .01 or undetected. This April it was .01. We'll continue to check on 6 months. They told me that PSA is produced by 2 reasons, the Prostrate and Prostrate cancer. So, seeing some increase doesn't mean cancer. Regarding the testosterone, they checked it at first but haven't changed it sense. We talk about the return of testosterone effects. So, one is lipido, which has returned, no hot flashes, muscle and bone aches are all gone. The last thing is checking bone density which like most men has bone density loss. My density, when on treatment, they treated for bone loss with Reclass infusion. I just had it tested again and it's better but still want me to use calcium and exercise. They didn't want me to use testosterone supplements and wanted it to come back naturally.

REPLY
Please sign in or register to post a reply.