Living with Prostate Cancer: Meet others & introduce yourself

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

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.

Kharin,

I agree with your comments. I am 83 years old and had a PSA=11.1, Gleason of 3 ea. 3 +4 and 1 ea. 4+4 out of 12 samples. I had great difficulty with 44 radiation treatments (diarrhea & tenesmus) but got better a week after the last treatment. I started Lupron a month before radiation but had to stop after 4 months because of severe 24-hour sweats, headaches, frequent urination, no libido, and brain fog. Still had these side effects for 4 months after stopped Lupron but they started to lessen during the 5th month. Now at 6 months the early side effects have lessened by about 50% but I now have the new side effects of pain in all my muscles and joint plus my private parts have shrunk about 50% and I have no libido at all. I work out at the gym for at least 4 days/week for an hour. My blood tests at 1 month and 4 months after radiation indicate PSA < 0.1 and testosterone at 8.7. Some of my friends have had minor side effects but some are closer to my level. I believe that my age and low pretreatment testosterone levels (low 200's) made my side effects worse than normal. I believe I would have died if I went above 4 months of treatment.

@jeffmarc

I was on prednisone for 3 months before my PSA test showed cancer. I was on prednisolone because of an eye infection but my eye doctor found that I was a prednisolone responder because of high eye pressure which eventually would cause glaucoma. This only occurs in about 5% of patients but it is a good idea to have your eye doctor check to see if you are a prednisolone responder because it can cause glaucoma.

Hi. I’m new to the forum. Just got my biopsy results back. • Very aggressive cancer
(Gleason 10)
• Likely still localized to the prostate, but at high risk of microscopic spread
• Pelvic lymph nodes are suspicious, raising concern for early regional spread
• No evidence yet of distant (bone/organ) metastasis
• PSA is not extremely high, 8.3 which is reassuring — but PSA can underestimate aggressive disease

@toeknee
You can’t get more aggressive than Gleason 10 unless there are other things found in the biopsy.

Were any of these things found in the biopsy intraductal, cribriform, Seminal vesicle invasion, EPE or ECE. (Extraprostatic extensions extra capsular extensions). They can make the cancer more aggressive.

Have you had a PSMA PET scan yet? Your mentioning that pelvic lymph nodes are suspicious may be because they are lit up a little bit in the scan. Did they give you an SUV value for the pelvic lymph nodes?

Have they been talking about doing radiation? You might be a good case where they do multiple sessions of IMRT followed by brachytherapy. That can really knock down the cancer, Even more than surgery. Find a doctor that does brachytherapy So you can get an opinion about it.

@jeffmarc
Thanks for your reply. Yes, cribriform glands were present. No seminal vesicle invasion, EPE or ECE. There was PNI (Perineural invasion) I’m meeting with my doctor on Monday. I presume he will schedule a PSMA/Pet scan and discuss treatment.

@toeknee
You want to find out if it was large cribriform. That is aggressive, Small cribriform is not very aggressive.

Well, they say PNI can be aggressive. I had it. I know so many people that had it. It’s ridiculous.. Doesn’t seem to be very aggressive compared to other issues.

69 years old. After 3 biopsies which included a URONAV 3D, pet scan (waste of money - discovered a small cyst in my liver ), 4+3 gleason, stage 2. After 1/1/2 years of all the testing, blood samples the endgame was RP.
My ONLY gripe at this time (8 months after surgery (04/25) is incontinence but deal with it easily and is getting much better. Sex life not an issue (no libido) - married 45 years and the primary goal - long-term life. Almost went the radiation and drug thing but decided no and stuck to the gold standard and save all radiation and drugs if needed for later. My situation had a tumor next to the colon wall - very dangerous.