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New here! 4 months into my cancer journey.....
I have a Gleason score of 8(4+4). My PSA was 4-5 for several years then took off earlier this past spring to 16. PET scan showed no spread to the lymph nodes. My urologist ordered both of these and he is a certified "cancer urologist"(not sure about the terminology here!).
Started radiation 2 weeks ago and Orgovyx therapies about 2 months ago. I was told that hormone therapy could be 6 months to 2 years for my (aggressive) cancer type. Scheduled for 28 radiation treatments (5 per week) ending in mid November.
As I understand it, the radiation therapy destroys cancer DNA ) and other DNA in other body cells, too), but your body can fix its DNA, cancer cells cannot.
Have had some small issues with hot flashes, but nothing intolerable. Basically, at this stage trying to understand what is ahead. My radiation oncologist said PSA count will determine when I can get off the Orgovyx.
Any input is greatly appreciated. And, please, correct any misunderstandings I may have!
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Yes a Gleason 8 is quite aggressive, and tends to come back if not treated appropriately. The NCCN, which set guidelines for prostate cancer treatment, say that you should be on ADT for 18 months. You don’t get off early because your PSA goes down, if you do that, it may come back sooner. There is a possibility that 18 months will get you to remission, results vary considerably.
Have you gotten a decipher test? That also tells how aggressive your cancer is and is really important to be done, especially with a Gleason 8. Tell your urologist you need that done.
Never heard of a urologist that is a “ certified cancer urologist”. The people that specialize in cancer are oncologist not urologist. Urologists have to keep up with many issues related to urology and can’t specialize in prostate cancer like a GU oncologist. Urologists do work on cancer, they do the prostatectomies. Sure they want to work with you after you’ve had it done, because they make money doing it, but the expertise is with the oncologist.
Side effects of ADT (Orgovyx) include hot flashes, memory fog, muscle deterioration, fatigue, a beer belly (weakening of stomach muscles) and other issues. You want to keep active (walking/running) in order to limit the fatigue and do weight training to offset the muscle deterioration that is going to happen.
There are a few solutions to the hot flashes, I had terrible hot flashes constantly, if you become uncomfortable come back and ask for help.
While the radiation can be a solution, it doesn’t always get rid of all the cancer cells You have to realize the cancer is in your bloodstream, in fact you can get a somatic blood test to see if there’s a genetic change in your blood. That could also affect how you are treated. Ask your doctor about getting that done with the tissue that was taken out in your biopsy, if that’s not possible blood can be used.
You need to get a genetic test. That affects how you will be treated. If you went to an oncologist, they almost definitely would’ve had you get one before doing radiation. You can get one free here, results come back in about three weeks and a geneticist will talk to you about the results.
Prostatecancerpromise.org
Make sure you do not select the option to have your doctor involved. Otherwise they will not send you the spit tube until your doctor has been contacted.
Wish you the best.
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3 ReactionsThanks so much for the input! I am soooo new to this and it's my first time dealing with a serious health issue. My mother died at 95, but my Dad died at 55 from heart disease in 1963. 3 packs of cigarettes/day and more fried food than can be imagined, a heritage from his roots in Texas! No cancer in my family and I quit smoking over 40 years ago. Exercise daily, too.
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1 ReactionListen to Jeff Marc- he s the expert on this chat forum . He’s has PCa longer than anyone on this chat line set up. Just my opinion of course. Ecurb
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3 ReactionsYes, Jeff is THE MAN!
I had similar Gleason and PSA values. Had 45 days of radiation and 2 plus years of Lupron injections. Lupron makes you feel wierd and tired plus hot flashes. Once you get used to the changes and realize they are not permanent but part of the healing process. My cAncer was diagnosed 15 years ago and now my PSA has stabilized around 10. Doctor said you wont die from this and treatments will probably not be too beneficial. So I am not too worried abouit living with prostate cancer as my PSA doubling times are high and PET scans show that there is no indication of spreading. This may not be for everyone but I find it to be less worrisome than constantly being too concerned about a cure. Hope this helps a bit. Hope the road to healing finds you on its path.
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4 ReactionsThank you so much for your response! I am interested in anyone’s historical perspective on prostate cancer. Just knowing others have gone through what I’m going through, or will go through, is somewhat comforting.
PSA stabilizing around 10- makes no medical sense . That’s scary.
I'm 83 and probably will not last a decade .
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1 ReactionYeah you will. 🙂
I was Gleason 4+4 as well but with a PSA of only 6.3. I opted for RALP and ended up with clear margins and lymph nodes. Not further treatment was recommended but I have PSA checked every 6 months. Next month is my 4th check and I'm coming up on 2 years since the deed was done
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