Living with Prostate Cancer: Meet others & introduce yourself

Based on what you’ve told me, I think you’re going to handle ADT well. I’m taking Orgovyx instead of Lupron depot shots and have done better with less side effects than my friends who took Lupron. Because you’re so active you may want to consider that and ask your doctor about Orgovyx.

Wishing you the best for your journey.

I can attest to what Robert said. I started with Lupron and it sent me into the most soul crushing depression I've ever experienced. Fortunately, I insisted on one month shots instead of six month. I switched to Orgovyx and just over two months later am doing MUCH better. Plus, I no longer have to deal with the monthly sciatica I'd get for a week after each Lupron shot.

Gleason 4+3 and they did not want to discuss the TULSA Pro but wanted to start immediately with prostatectomy. Medicare and a great supplemental insurance. Doctor that wanted to do surgery we now understand is gone from UC Health.

For the record, I’m a fellow prostate cancer patient and not a doctor so I’m not giving medical advice; just sharing information.

I looked into Tulsa Pro as well when I was seeking treatment, and I was not a candidate, probably for the same reasons that you might not be a candidate.

The following is an excerpt from the Tulsa pro website:

“Who qualifies for TULSA-PRO?
Whether a patient qualifies for the TULSA procedure will be determined by the treating physician on a case by case basis. In general, patients should have low to intermediate risk disease which is confined to the prostate. Generally, the patient should have a PSA of less than 20. If a patient has significant calcifications within the prostate (as determined by a CT scan), then they are not a candidate for TULSA, because the calcifications will block sound waves…”

If you look up Gleason scores for prostate cancer, Gleason seven,p (4+3 specifically) is considered unfavorable intermediate risk and with your PSA being 22 it sounds like Tulsa Pro would not be a preferred treatment to elicit a cure and stop the cancer from recurring.

I’m no medical expert on cancer, but I was a regular attendee at a local prostate cancer men’s support group in Chicago. What I learned there just a couple years ago was that some doctors might consider 3+4 Gleason seven patients for active surveillance, none would consider 4+3 Gleason seven prostate cancer patients for active surveillance and I doubt anyone would consider you for focal therapy. As I understand it, 4+3 left alone can become 4 +4 and spread beyond the prostate and then you could be in the fight of your life. Take it from someone who knows. I had what should’ve been considered low risk Gleason 6 3+3 cancer. I received focal therapy which failed and now the cancer has spread beyond the prostate, and life is a lot more challenging.

I understand that you don’t want surgery or radiation. I get that. I didn’t want that either. Unfortunately I’ve had to have both plus hormone therapy which has affected my quality of life; all because my cancer spread beyond the prostate. Prostatectomy or radiation therapies practiced by highly skilled physicians and centers of excellence are likely your best choices for eliciting a permanent cure.

There is an excellent book called “surviving prostate cancer” by Dr. Patrick Walsh. I suggest you consider buying a copy. Do not buy the fourth edition though; purchase the current fifth edition. You’ll get far better up-to-date information regarding your options in by reading that book written by some of the best practitioners in the field then you will on this forum.

Good luck on your journey. Let us know if we can answer anything else for you.

I had a radical prostatectomy two years ago, and my PSA has been rising over the past six months. My urologist recommended ADT and radiation. I started Orgovyx two weeks ago and will start radiation on Monday. Hoping that the fatigue won't be too bad, but I am trying to be flexible with my work activities over the next few months and get plenty of exercise. (I'm 65 and a semi-retired tech worker. I now direct two choirs and sing in a third.) Getting lots of support from family and friends. Getting back into meditation.

The thing that really spurred the new treatment is that my tissue was tested using a Decipher test, and the result was very high--0.93.

I’ve been on Orgovyx for 4 months and doing well enough. I bought a bowflex and hand weights and do resistance training every other day. I also watch my calorie intake to avoid gaining weight. Lastly I take a calcium supplement to avoid bone density loss.

Good luck and don’t hesitate to ask any questions.

I was diagnosed with prostate cancer in 2010. Gleason 4+3. I had a prostatectomy and my PSA stayed undetectable for 3 1/2 years, but then came back. I had radiation to the prostate bed and for 2 1/2 years my PSA stayed undetectable, but then it came back I started Lupron in 2017 and my PSA stayed undetectable for two years, but then it came back. My oncologist added Casodex, but 14 months later, my PSA started rising too much. I then started Zytiga and took it for 2 1/2 years. It worked pretty well but then I had a 3rd more serious afib event and my oncologist pulled me off it. I then started Nubeqa and my PSA has now been undetectable for nine months. I found out in 2022 that I have the genetic anomaly BRCA2, which explains why my cancer keeps coming back.

If you were seeing a urologist, they are surgeons so they want to do surgery. My brother was in the same situation you are right now and he had five sessions of SBRT radiation (cyberknife) at UCSF and it worked great.

If you have had a PSMA pet scan and the cancer has not spread past the prostate then that is a really good option for you, get an appointment with a radiation oncologist to see what they think. If you have surgery, you probably will not be able to get an erection unless you have nerve sparing, and it is successful, but if you have radiation, you usually will still be able to get an erection.

Even after surgery if you get Trimix injections within a few months of surgery, you probably can get an erection again. If you wait too long, it may not work.

You should get genetic testing to see if you have a genetic anomaly.

Watchful waiting with a 4+3 makes no sense. The reason they want to do another biopsy is because your Gleason score has probably increased, more cores probably have cancer, and they want to see what’s going on. Watchful waiting with a 4+3 is just asking for a short life. Dying of prostate cancer is extremely painful you don’t wanna go there, that would be harder on your wife than treatment,. You need to get treatment and SBRT radiation is the least invasive procedure with the shortest time of treatment.

You should also have a recent PSMA pet scan done to make sure that it has not spread out of the prostate now. With a PSA of 22 it may have spread.