Living with Prostate Cancer: Meet others & introduce yourself

I’ve been on ADT for eight years. I’m 78 years old and I never had a problem with fatigue. Taking abiraterone & prednisone can really cause fatigue for some people. In some cases, you can increase your prednisone to 10 mg, A standard dose some doctors give, and that can greatly reduce the fatigue.

To get around the muscle issue, I run on the track 1 mile twice a day and go to the gym three days a week for one hour to build up my muscles in my arms and legs. I also am on bone straighteners to prevent the loss of bone.

Yes, there is a loss of libido, But it is not permanent. If you stop ADT, your testosterone will return as well as your libido in almost all cases. Since you are on Orgovyx Your testosterone will return much quicker than with other types of ADT.

I’ve used multiple ways of getting rid of hot flashes. If they are really a major issue Post back and I can give you some pointers as to things you can do to eliminate them or at least greatly reduce them.

@kharlan oh, also by the time I was diagnosed the cancer had metastasized to my lymph nodes.

Diagnosed with prostate cancer, took multiple samples mostly 5-5, risk factor was 100%. They are giving me ADT (Orgovyx, Abiraterone and Prednisone), and after 3 1/2 months of ADT, radiation for 8 weeks. They are talking another year of ADT but I’m not handling ADT well and I only want to agree to 1 year of ADT as most of the info I’ve seen is that they are generally moving away from extreme long term periods of ADT. I think a lot of my problems with ADT is they never gave any counciling on the real side effects and the counciling they gave was deceptive, they talked about hot flashes, weakness, feeling tired, some loss of libido etc (which I got but were at most only annoying) but then I got blind sided by, no you lose all libido most likely forever, your genitals will shrink to a third of their original size and that will be forever too and you will lose muscle mass so quickly that your blood will have so much debris that it may destroy your kidneys trying to filter it out! Not sure if what they are doing is the right path, the only thing I know for sure is I’m to get off ADT as fast as possible!

@ros0142
If you haven’t been on the drugs, and you were undetectable for a year it’s a real good sign.

A percentage of people have some side effects after the prostatectomy and radiation. My main side effect has been incontinence starting about five years after the radiation and it’s gotten worse every year. The fact that you didn’t really have much in the way of side effects at the time is really good. Yes, some things can creep in, but you’re not having an issue so things could continue smoothly, They sure have for me other than that incontinence issue and it’s been 12 years since I had IMRT radiation, like you had.

Wish you the best on your next set of tests in February. Keep the faith.

@jeffmarc
Jeff, no ADTRARPI medicine taken and it was undetectable September 3. Yeah I’ve been part of the group for a while but have not been active. I have not had a decipher test PSA was .01 and CT pet scan did not show anything so I’m feeling good but still apprehensive as I’m sure many do. I’m sure I’m not the only one but I’m just wondering if there are many other people that have that with side effects and if anybody has had reoccurrence, thank you for the info I appreciate it I will be back in February third for next scan so I will be asking questions as to chance of reoccurrence fingers crossed and saying prayers for everyone here thanks, Jon

@ros0142
Your situation is not unusual. You’ve been in this forum for a long time. You should be aware that other people have come up with similar issues to what you are describing.

You don’t mention whether you are on ADT or an ARPI. Those can keep your cancer undetectable for years. They don’t actually kill it. They just suppress it and prevent it from growing..

You had radiation a year ago and you’ve been undetectable since, That usually means it’s a time to try stopping the drugs and see if your PSA rises. Have any of your doctors talked about doing that?

If you’ve managed to stay undetectable without any drugs, then that would be great.

In your case, a decipher test could tell you what your chance of reoccurrence is.

Hello new to posting I am interested to know if anyone else has had this combination of prostate and seminal vessicle cancer as of September this year tests showing no progression or advancement fingers crossed and praying August 2, 2024 radical prostatectomy and pelvic lymphadenectomy, for poorly differentiated carcinoma, predominantly involving the right seminal vesicle and focal infiltration of the prostate. A single right pelvic LN positive for metastasis. All of the 8 left pelvic nodes were negative
. Prostate, radical prostatectomy: PAX8-positive
adenocarcinoma, forming a 5.5 cm mass that predominantly
involves the right seminal vesicle with focal infiltration
into the prostate and left seminal vesicle.

Radiation Therapy Treatment Details (10/21/2024 - 11/22/2024)
Sites: Prostate bed, Pelvic lymph node
Technique: IMRT

Still cancer free.

@tmclain
Hello,

I saw this post from July 2019, how are things going now December 2025 ?
Thanks

What you want to ask is what percentage of the cores with 3+4 had tumors and what percentage were a four. If only five or 10% is a four, then you actually could go on active surveillance. If it’s a high percentage of four, then you probably want to do treatment.

You should ask for a decipher score. That will tell you what the chance of reoccurrence is. If it’s very low, then again, you could consider going on active surveillance.

Your PSA is a little elevated, but it is not huge. Did the MRI show that you had a large prostate? That can affect your PSA And make it higher without their actually being aggressive cancer.