Prostate Cancer Support Group Meeting

My husband was diagnosed with Prostate cancer! They say its aggressive with a gleason of 9 (4/5) His treatment plan has just been discussed with his oncologist and it will be Brachy therapy and 4 1/2 weeks of radiation! He also wants him to do Hormone therapy which he is having a hard time with it! Has anyone done the therapies without doing the hormone therapy!

I too was diagnosed with aggressive prostate cancer six months ago with the same Gleason score as your husbands. My recommended treatment included 45 Intensity-modulated radiation therapy (IMRT) radiation treatments (every weekday for 9 weeks). Before the radiation treatment began the urologist inserted three gold Fiducial markers on the prostate so that the radiation treatment could be precise regarding its target. In addition to the radiation treatment my doctor prescribed two years of hormone treatment (in Europe they recommend 3 years). The doctors did not recommend Brachy therapy. I was told that this was not as effective as IMRT because the radiation seeds can "float" whereby good tissue as well as the cancer cells can be exposed to the radiation. I too did not want to do the hormone therapy and I got several second opinions hoping to find a doctor that would say "hormone therapy was not required". As of this December 24th, I have 9 radiation treatments left and I have completed two months of the hormone therapy. The treatment has some side effects: hot flashes, nausea, diarrhea, loose stool, fatigue, and (the one side effect that no one wants to discuss) the loss of sex drive. The good news - I plan on living more years and to do my best to limit the cancer spreading to other parts of my body. As part of my treatment: I see a clinical therapist once a week that specializes in grief counseling, I joined a prostate cancer men's support group, I see my oncologist once a week, I see a personal trainer at the YMCA twice a week, and I have a very supportive wife; in fact, my wife and I are closer now than ever before. Of all the treatment plans that I have heard of, they MAY include proton therapy, IMRT, Brachy seeds yet hormone therapy has been included in all of them. On my first urology appointment my doctor told me that prostate cancer will not kill you. What he did not tell me was our lives will change. My prayers are with you and your husband.

I too was diagnosed with a Gleason 4+5=9 localized prostate tumor. Like most people the thought of hormone therapy is daunting and everything in me wants to find another option. But, I’ve gotten many opinions and I was able to get the daily pill Orgovyx rather than the shots. The advantage of the pill is that as soon as you stop your body begins producing testosterone again. With the shots it can take up to a year. Also, if you can’t tolerate it you can stop right away. I’m waiting for approval for proton beam radiation. Otherwise, I’ll be doing 5 1/2 weeks of low dose external beam with 1 course of low dose brachytherapy. Recommendation for hormone therapy is 2 years. I’m committing to 6 months post radiation and then a discussion about going longer.

I had one year of hormone therapy. Six months before and during proton therapy and six months after. They wanted me to do 2 years but I talked them down to one. You are right it took 6 months for it wear off. Now, two years after the proton therapy my PSA has risen from 0 to 0.40 at a slow steady rate. The doctors think it might level off soon, but maybe I should have taken the whole two years instead one.

Regarding a comment by bsel1946: “ The doctors did not recommend Brachy therapy. I was told that this was not as effective as IMRT because the radiation seeds can "float" whereby good tissue as well as the cancer cells can be exposed to the radiation.”

Actually, from my understanding, high-dose-rate (HDR) brachytherapy spares much of the surrounding healthy tissue, whereas IMRT photon therapy is basically x-rays that travel through healthy tissue to get to the target, then through healthy tissue again to exit the body.

Remember that there are two types of brachytherapy: HDR (2 procedures in 2 weeks and you’re done) and no radioactivity is left inside your prostate. This is the type of treatment that I have chosen.

With low-dose rate (LDR), seeds are implanted and stay in your prostate forever.

As the names imply, HDR involves very highly radioactive isotopes (seeds), and they are placed in the prostate exactly where they are needed and are withdrawn within a few seconds. Whereas LDR is low radioactivity, and the seeds stay in your prostate, emitting a low dose of radiation over several months.

Thanks for all the great comments. I love Mayo Connect!

Jim

The 2023 version of NCCN Evidence Blocks, which is what oncologists go by, recommends for primary radiation treatment of high risk and very high risk (your husband) prostate cancer:

EBRT + ADT (1.5 - 3 yrs); OR
EBRT + Brachytherapy + ADT (1 - 3 yrs); OR
EBRT + ADT (2 yrs) + Abiraterone (Very High Risk Only)

This is based on a life expectancy of 5+ years irrespective of PCa.

Also, this presentation, though a bit dated, provides an excellent overview of what duration of ADT is best for different risk scenarios.

Welp, the site won't let me post a link due to just having joined. You could search youtube for a presentation titled: Duration of Androgen Deprivation Therapy in Prostate Cancer #ADT #ProstateCancer #Urology by Anthony V D'Amico, MD, Harvard Medical School

My husband had. Prostatectomy 30 years ago and he is still here with me at age 86! It has been a very long battle but worth every day. He is still receiving shots every three months, has had radiation treatments in the past three separate times and now I think he is finally coming to the end of a very long battle. After three years on a chemo drug called enzalutimab, the cancer has returned again. Don’t give up people! The battle is worth it.

Jim - thank you for your comments on HDR; I had only heard of the LDR treatment. It sounds like LDR is an excellent option. We live in Asheville where the newer treatments for PCa are slow to make it to the mountains. We had a very advanced hospital, our only hospital, in our small town that was up for sale and I believe Mayo was being considered; however HCA purchased it so that they could have a healthcare monopoly in WNC. Now, Mission Hospital has zero Cancer Doctors.

I understand and live in Waynesville, and have been a patient at Mayo JaX for several years. I have to begin treatment either Radiation or Surgery very soon and finding it difficult to make the decision. Technology is not the same here, nor medical staff availability. However spending weeks in FL for treatment, then aftercare etc with a home, pets etc??

Hello from Cape Cod. Wishing you the best. I started visiting with Docs here. BUT moved on to Mass General Hosp Cancer in Boston - 70 miles away. I'm 77 with intermediate 3+4 . Just finished SBRT - 5 seasons, each a day apart.
Highly recommend you consult at a major cancer center. My treatment was with very latest modern equipment. Not available everywhere . Don't know if it applies to your 4+5. I had one hormone shot, good for 3 months. Will get one more for a total of 6 months. Not feeling bad from shot. Don't know if I am just lucky. I am active - walk 4 miles or so, several times a week. Believe that helps. Recommend you look at pcri.org