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Dear Brian: Thank you SO MUCH for your reply to my queries and uncertainty. I really found the youtube video from Stanford University to be insightful. I encouraged my husband to watch it, as well. He had his original biopsy in late SEptember and was rated Gleason 4-3. A urologist, who had been assigned to us, called and said that the cancer had been caught early. This urologist only does surgery so as we discussed the options, and the fact that he didn't seem that concerned of the urgency, my husband thought he would go with the radiation seeds. We go away in the winter for 3.5 months but I made it clear to the doctor that we did not have to go away. My husband's health was our first and only priority. The urologist said he would refer us to a radiation oncologist and said that we would not get in to see him until after that time, anyway. So, we went away. As soon as we returned, my husband had an MRI and it looked a bit concerning. When we left his PSA had been 8 . When he got his blood test mid April, it had gone to about 15 . We paid for a PSMA on April 29 and it showed that the cancer had gone into two lymph nodes above the prostate. So, our options for radiation seeds , or anything else, really, were gone. On May 15 my husband had his hormone therapy shot, two weeks later he started on abiraterone and prednisone and on July 4 he began his 25 days of radiation. He has a medical oncologist and a radiation oncologist. Both have indicted that he will be on the hormone therapy for the rest of his life. I have watched you tube videos from PCRI. org and read some other information and so often they mention, when you discontinue the hormone therapy then your libido will come back and you must maintain your muscle mass, etc. for that event. I am not sure why these doctors feel that my husband will be on the hormone therapy forever. I really appreciate your personal information, saying that you maintained your physical strength training. My husband had always been in favour of that but, for some reason, right now, it is a difficulty for him to feel like doing it. I feel as though the side effects which have been outlined by the doctors have made him feel that it is inevitable and that he can't affect those inevitabilities. Your response gave me hope and I am going to encourage and support him to the best of my ability, so that he can see that he CAN impact these results.

Warm regards,

Glenda

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Replies to "Dear Brian: Thank you SO MUCH for your reply to my queries and uncertainty. I really..."

It’s amazing how much you learn over time. I regularly use the phrase “If I only knew then what I know now!” That phrase certainly applies to prostate cancer diagnosis and treatment decisions.

Even with just PSA there are quite a few numbers to know; and with MRIs there are quite a few numbers to know; and with biopsies (4+3=7) there are quite a few numbers to know; and then with biomarker, genetic, and PSMA PET scans, there are quite a few numbers to know. So much information is needed to know how things really are.

So, a 4+3 (like I had) may or may not have been caught early……it depends on all of those other tests and results. A 4+3 (intermediate unfavorable) is where the concern starts, because that “4” cell structure can be the start of trouble.

PSA going from 8 to 15 in that short of time is unusual. Then again, knowing those other numbers and results from his PSA, MRIs, biopsies, biomarker, genetic, and PSMA PET scans, might have given some insight as to what might be coming. However, It’s easy to second-guess decisions, but that isn’t helpful.

> When you mention that “We paid for a PSMA on April 29….” - was that out-of-pocket or did insurance pay for that?

So, brachytherapy is out of the picture, he’s had a hormone therapy injection (which one?), is on Zytiga, and has started radiation.

> Did he use a rectal spacer (SpaceOAR, Barrigel, or BioProtect) prior to his radiation treatments starting?

> Are they hitting his lymph nodes with radiation?

> Has he had genetic (germline) testing?

> What have they proposed to kill the cancers? Chemotherapy?

As for staying on hormone therapy forever, that’s not a desirable option (for a number of reasons).

Novartis announced the results of a Phase 3 trial, called PSMAddition, that has shown positive results when used in combination with hormone therapy for patients with metastatic hormone-sensitive prostate cancer (mHSPC). You might ask his doctor if that treatment is an option yet.

With so many novel treatments being developed almost yearly, what is said to “be on the hormone therapy forever…..” might be a very, very short time. Just take it a day at a time.

It’ll work out well.