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Trying to decide treatment options and quality of life after
Prostate Cancer | Last Active: Aug 13 8:44am | Replies (42)Comment receiving replies
Brian, are you still on hormone treatments? We have communicated before. My husband will be completing his 5 weeks of radiation this Friday. He had his hormone injection May 15 and is scheduled for the next in late October. He has been on abiratarone since the first week in June. He has diarhea a few days per week , his libido seems to be negligible. He does his own weight workout every other day, in the hope of retaining muscle mass and bone density. I asked the radiation oncologist if they would be doing a PSMA after the radiation is completed but he said probably not until he has had two hears of the hormone therapy. I can see his lack of energy, and I am hoping that he will be able to get his testosterone back ...I fear that he will atrophy and not be able to be who he was. I can't explain it but I see a resolve that this is just the way things are going to be for the rest of his life... I am wondering why the doctors feel that he will be on hormone therapy for the rest of his life. I believe he has 5 lesions in lymph nodes. Quality of life is so important but I would never sacrifice how long he lives for that. He has always been so healthy. Is it normal to be on ADT and hormone therapy for the rest of your life? I saw Dr. Geo interviewing a doctor on youtube yesterday and he and the doctor seemed to be questioning the need for ADT if radiation has done its job.
Replies to "Brian, are you still on hormone treatments? We have communicated before. My husband will be completing..."
I am at 10 months from the start of abiratarone, Lupon injection and about the same time with 26 treatment of radiation. It is going to be really tough for Brian for the next few weeks. Uncontrollable toilet functions, sometimes both at the same time. Really REALLY sick and hurting. Hope I never have to go back to that machine, ever.
Sex, well not so good. I am on the needle and I have to force sex since I have no desire. Try to have sex, without penetration once a month, laborious at best. Using penile injections is devastatingly painful and no feeling. Really wish I could give you better news. Suggest getting an appointment with the Urologist for penile injection the sooner the better. 6 to 8 week for "Yep you have a limp one. Then 8 weeks for a second visit to find the correct dose. All the time Penile Atrophy sets in. Use Vacuum device from Menshealth, a medical grade. Try very had to use it in a rehabilitation manor. That should prevent Penile atrophy. Just my opinion, the urologists are looking to cash in on a implanted erection device surgery.
Boy, I really wish you folks the best. Oh, Yes Radiation for Lymph node involvement is the best route. I know two other people that the Urologist surgeon spread cancer all through their body . It is noted, if they do not get it the first time, there is a second chance, and a third. Try to see the light at the end of the tunnel.
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(For my localized 4+3, I only had Eligard for 6 months (two 3-month injections). The Eligard continued to suppress my testosterone (T) levels for an additional 4 months before T levels began returning to normal.)
Yes, libido takes a hit due to low T; that’s expected. My medical oncologist advised me that though the libido will be gone and the “want to” won’t be there, to “do it” anyway. I was told that it’s a “use it or lose it” scenario, and it’s best to keep the blood flowing down there.
> what is his T down to now? (I’ll bet it’s lower than yours!)
> regarding his bone density - what were his DEXA scan results before starting treatment?
While he’s on hormone therapy and his PSA is being suppressed, having a PSMA PET scan won’t be of much value. At very low PSAs, PSMA will miss most everything.
> what were his PSMA PET scan results pre-treatment?
Regarding his lack of energy, what was his T level before starting hormone therapy?
> as for his T returning, how old is he and how many years is the ADT planned for? (And he’s on Zytiga as well?) The older he is affects T returning to pre-ADT levels, and the longer he’s on ADT affects T returning to pre-ADT levels.
> for as long as he’s on ADT and his T levels are being suppressed, he will feel this way. (I often jokingly refer to ADT as Kryptonite!) If that very vigorous resistance-training regimen wasn’t in full swing pre-ADT, I’ve read that it’s very difficult to start exercise later, trying to overcome the fatigue and lack of energy.
The number of years he’ll be on hormone therapy depends on his diagnosis (PSA, Gleason, PSMA PET results, other risk factors, etc.) Depending on the outcome of his treatments, there sometimes can be “ADT vacations.” You’ll have to ask his oncologist.
> can your husband be on Orgovyx rather than the ADT injections?
Yes, ADT is usually used for Gleason 7(4+3) and above; it improves outcomes. ADT + ARPI (like Zytiga) often improves outcomes even more.
For now, he’ll have to keep pressing forward, making incremental changes to improve his quality of life. In time he’ll get there.