Trying to decide treatment options and quality of life after

(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.

😆

My radiation tech told me that the cone beam Xray they took every time before my treatment did produce radiation; and it was calculated into the total amount you were prescribed.
So theoretically there shouldn’t be any ‘extra’ overall.
Phil

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.

My husband's Testosterone was less than .2 on June 23 (the last blood test).
His Gleason score last fall was 4 +3 7/10
Unfortunately, we don't know what his testosterone level was prior to the hormone therapy. He just turned 70 a week or so ago. He was always in great health, and interest in sex was always high.
His PSMA score prior to treatment was 2 to 3, according to the results I just looked at. I don't know what that means. There were also SUV scores, varying from location. The highest was about 39, and lowest was about 6. Again, I don't know what that means.
I don't know what a DEXA scan is and I can't see anything about that in the test results I have looked at.
Yes, he is on Zytiga (abiraterone). They have said he will, most likely, be on hormone therapy for life.
I will ask about Orgovyx. Were you or are you on Orgovyx. I think I have read that testosterone levels may return more quickly after Orgovyx?

My husband just turned 70 last week, His Gleason score was 4 + 3. His PSA at diagnosis was 8. PSMA 3 showed direct extracapsular extension. Linear extension into anterior aspect of left seminal vesicle compatible with seminal vesical invasion. No definite extension int rectum or urinary bladder. Lymph node metastases: left internal iliac/perirectal lymph node just posterior to bulky left seminal vesicle. There are other descriptions, I am just not sure if I should list them.

Your story gives me hope for my husband. Unfortunately, he did not have SBRT. (which I believe is 5 powerful treatments, instead of 25 lesser strength treatments). He has had 2 months of ADT and 2.5 months since the hormone therapy injection. His testosterone is less than .2. No libido. PSA as of June 26 1.9. We have been hoping to get in to see a sexual health doctor. We were referred a couple of weeks ago but have not heard from him. He started on Cialis a week or two ago, in the hope that that would help to avoid atrophy. He hasn't said it out loud but I really feel that he has given up on the chance of getting his testosterone back or having any sexual responses.

For most all the numbers related to prostate cancer, it’s important to have baseline numbers - PSA, testosterone, DEXA, etc. - in order to know whether treatments are working (or not).
> for instance, if his testosterone level was going down (due to the hormone therapy), but his PSA was not dropping, they would know that was a problem. On the other hand, if his testosterone was not going down at all (when on hormone therapy), they would see that problem as well. In any situation, having baseline numbers helps with diagnosis and treatments.

> PSMA PET scan scores - called SUVmax (maximum standardized uptake value) - are used to tell how aggressive the cancer is. Those numbers are compared to other SUVmax scores of other tissues, organs, and fluids that naturally produce PSMA without being cancerous (blood, liver, and parotid glands). What were the PSMA PET scores they assigned to his blood, liver, and parotid glands?

> since hormone therapy can seriously affect bone density - especially in older patients - getting a baseline bone density reading with a DEXA (Dual-Energy X-ray Absorptiometry) scan is critical. (It’s the same test many women get when going through menopause.) It tests for osteoporosis and osteopenia. But, he needed a baseline test first to know what his “normal” bone density is; then every two years or so they re-test to ensure there is no serious loss of bone density.

> I was never on Orgovyx. However, Orgovyx leaves the system much quicker than the hormone therapy injections do. So, if he ever does have the chance to go off of hormone therapy, it’s better to go off of Orgovyx (which only takes a few weeks to leave the body) rather than to go off of hormone injections (which can take many months to leave the system).

Lots of questions to ask his doctors so that your husband can have both the best outcome and the best quality of life.

25 sessions of radiation is no less effective than 5 ‘powerful’ doses of SBRT. In fact, in your husband’s case with demonstrable EPE and seminal vesicle invasion, it is the preferred treatment.
IMRT can radiate a much larger marginal area without causing acute toxicities, and thereby hit more rogue cells which may have already escaped the prostate. If you tried this with SBRT, the results could be very severe indeed. Best,
Phil

Thank you for that. I spoke with the radiation technologist yesterday, while waiting for my husband's radiation treatment. I asked him if they do SBRT and he said yes they do but the doctor decides which way to go. Apparently, the radiation my husband is receiving is photons. He only has two treatments. I had been reading, yesterday , that there are photons and protons. It seemed that proton was preferable but photons are what my husband has received. I just want tomorrow to come and for it to be over for my husband. I pray that it has been beneficial. I just don't know how or when they determine if it, indeed, has destroyed cancer cells. The oncologist said that there will be no PSMA probably until my husband has been on hormone therapy for two years. I find that that hormone therapy is difficult for him, as well. Some days, I just feel so lost.