My clothes still fit the same way as before surgery, but maybe my abdomen was already roomy enough for them as it was 
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My husband gained inches around waist and went from 30 (which he’s been for about 40 years) to 32 waist! He’s not thrilled but not doing the exercises recommended by the pelvic floor PT, so obviously not THAT concerned about these extra inches around his middle.
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Going through cancer can feel sometimes like a very lonely process. If your H has access to a local support group, I highly recommend considering that. I went to a breast cancer support group for awhile when I was diagnosed almost 7 yr ago and it was incredibly helpful to compare notes with other people going through the exact same thing I was.
Some people I knew didn’t now what to say and others totally stepped up in ways I never would have imagined.
Hang in there.
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Caveat, some support groups can be a bit overwhelming — test the waters carefully. we tried one online local support group and both H and I decided it was more anxiety provoking than comforting so we stopped going. My relative (retired urologist) said he helped start that support group but feels they’ve gotten too intense and caused a lot of anxiety in his patients. He no longer recommends it.
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Maybe you can figure out what your husband wants at this time, before knowing the treatment plan, and let his/your family know what that is. Phone calls just to talk? Going out to lunch? Continuing on as if nothing is different?
My mother loved the extra cards and phone calls she got during her cancer treatments. She didn’t want to talk to the grandkids about how she was feeling or the treatments, just wanted to hear from them about THEIR lives. And they pulled through for her. A local grandson made her soup, those farther away called more often. She didn’t want anyone with her at treatments (and it was during covid, so not really an option), but did like the little 5 minute contacts.
My BIL had radiation treatments and I thought he didn’t get enough support from his wife (my sister) as she was just trying to brush it off. Then he had a major heart surgery and we also thought they weren’t giving him enough TLC, but he was out shoveling snow a week later! I guess they know him and when to push and when to pamper.
I enjoyed my friends taking me to lunch and listening to me when I was in cancer treatment. I didn’t need much medical help (although a few rides did help) but like the lunches.
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My father (now age 98) was diagnosed with prostate cancer at age 84. He was in excellent health and opted to do radiation treatments. The men’s support group in his area was very helpful and supportive - he really got a lot out of it.
I can see though how support groups might get overwhelming.
DH Is quite an introvert, so I have done the work of telling people who need to know. HIs parents have checked in at last, and I think that’s going okay. (I spoke to them the day before, to give them a brief recap bc I suspected his dad would be upset and would need some time)
A few of his colleagues know, and they’ve been nothing but supportive so I think that maxes out his social battery, at least until we have some sort of treatment scheduled.
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Ugh! H is so stressed trying to make a decision. I know this isn’t the worst diagnosis in the world, but I’m not sure how many make you choose between two wildly different treatment plans with different but potentially dire side effects, but similar outcome profiles, so that you have to pick your poison and role the dice. Was talking with a BC survivor friend who was saying that she was glad she just had to do the next thing one after another, never a fifty fifty decision. I really feel for him and wish I could help more. I’m in no way , I hope it’s clear, meaning to denigrate anyone else’s trials of course.
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Well, H was too old, so not as many options available to him. It was pretty clear which decision was best for him and so far he’s been pretty satisfied with his choice. His tests have been good as well. I hope your H can figure it out in the near future and just not look back!
The important thing is that both will get him healthy, with a similar outcome.
And yes, for him, it is the worst diagnosis - but it’s early enough hopefully, to resolve it.
There are no bad choices though, if there are two, with similar life expectancies.
in my case, I chose radiation - because I’m a medical wimp. 27 sessions at 2 minutes vs. something being cut out of me…..yeah, weekends were sleepy, tough - but I’m so glad I did.
So do consults, make a decision, and go with it - whatever it is - so he can get better.
That’s all that matters.
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To add complexity, some folks do the surgery AND also beam radiation and/or brachytherapy, just in case there are some stubborn cells hanging around that were missed.
DH’s doctor told us that you can have surgery, then radiation, but not the other way around with good results. The radiation complicates the surgery, so they prefer to only go that route in the most aggressive cases of cancer treatment, which we are not currently facing.
DH’s father and uncle both had prostate cancer; my FIL has also had a tumor in his shoulder removed and now has bladder cancer. The uncle has had recurrent prostate cancer and now has some sort of profound androgen malfunction as well. They are both in their 80’s, original treatment was in their late 60’s. These are the sorts of side effects that worry DH. FiL had radiation and then surgery, not sure what the uncle (who is himself a doctor married to an ER nurse) chose.
Anyway, we have almost 2 weeks before the radiation consult and then 2 more weeks until we go back to the urologist for next steps and treatment decision. We only got the end of March appointment because after waiting for the offices to do that, DH called with no results, so I called and admitted I was just going to nag the living daylights out of them until we had a date to plan around. I understand they don’t feel any particular urgency about this, but gosh darnit we are frozen in place, waiting.
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Thank you for sharing your experience. H had been leaning toward radiation, but he’s been more and more leery of the hormone therapy which would go along with it. Also scheduling all those appointments while trying to work. Still have to meet with surgeon, and then Hopefully his decision will clarify.
Being a former doc, he’s doing a deep dive into all the stats and outcomes now. I’m realizing that 10 year survival of 97% either way is great, but not the same thing as a cure which somehow my head had turned it into. But no sense getting ahead of ourselves.
Thanks again and best wishes to you!
I know your H was a doc, but just wanted to say…not all those treated with radiation need hormone therapy. Fair to get a second opinion about that too, if and when the time comes. Make sure your H sees the results of the Protect trial because those are the best data we have on outcomes and side effect tradeoffs between surgery and radiation. These results will be incorporated into the NCCN guidelines next time they are updated. The downside is that the Protect trial used an older radiation protocol (IMRT), so the outcomes/side effects might not be an exact match to today’s shortest radiation protocol (SBRT) of 5 sessions every other day for 10 days. Here’s the Protect trial pub: https://www.nejm.org/doi/full/10.1056/NEJMoa2214122
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Thank you! I’ll pass this on. He was told because of the amount of load (10 out of 15 3+4) that he should have the ADT as well, but worth looking into. He was also told that he’s not a candidate for Cyberknife (5 sessions) for the same reason. But again, we’ll look into that trial. He may have read it already, but I’ll check.
Edit: Yes, he did know the Protect trial. He was referring to it to me yesterday–didn’t realize it was that study.
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Hospitals also have what’s called a Medical Oncologist. This is a person who can sit down with you and talk about surgery, radiation and other options. I had to meet with one because of the phase 3 drug trial. I had already made my decision. But perhaps that could be a person who can help your husband. Their role is literally to help you understand and decide - an impartial person.
I’ll PM you more - private thought process I had but I think either choice is the right one. He is right - radiation has side effects. Surgery does too - but not feeling crap ones.
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Thank you for your time and support!
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Exactly. For the patients who have a choice between the radiation and surgery, many patients choose based on the side effect profile they feel they are most able to accept because the long term outcomes in terms of recurrence are so similar. That’s where the data of the Protect trial is so great…large sample size, patients monitored for many years, with patient reported side effects over the years (and how said side effects change over the years.)
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I have been told the same thing, and actually did it this way around (surgery first, two rounds of radiation multiple years later for two recurrences).
I by the way had robot-assisted surgery. I would describe it as the doctor is on one side of the room with some device that looks like a very high end video gaming system, and you are on the other side of the room with robotic arms doing the actual surgery. This implies several very small cuts rather than one big cut, which appears to speed up recovery. I was walking around a farmer’s market just buying normal fruit and vegetables less than a week after my surgery (I think that it was 4 or 5 days). I do not recall much if any pain, and was able to get off opioids quickly and easily (I stopped taking opioids with no problems the day that I was allowed to start taking ibuprofen).
Temporary hormone therapy (say, 6 months) does not seem to be all that bad. Long term hormone therapy (like for years and years) is something that I would probably only do if it was necessary with no acceptable alternative.
The combination of radiation therapy plus hormone therapy will make a person significantly less energetic. This might be one small thing to think about.
I am personally contributing to that 97% 
Prostate cancer is usually slow. A patient can go for years and years without knowing whether or not the cancer has been cured. Whether “not enough to find it” or “cured” can be hard to determine. Meanwhile we live our lives.
In contrast I have a friend who one year after his treatment knew his cancer (different type) was cured because it was so aggressive that if it hadn’t been cured it would have returned already. I am just as glad not to have his type of cancer, although he is fine and now it is probably at least 20 years after his treatment.
Best wishes. Hopefully 10 years from now your husband will be contributing to the 10 year survival statistics, and I will be contributing to the 20 year survival statistics.
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We had the radiation oncology appointment today. I am profoundly bummed that we are still waiting on enough information to make a decision but trying to get over that. The Decipher test, done from biopsy, gets sent TODAY, so we wait two weeks for that result, which impacts the duration and type of radiation he might be looking at. So, nothing to be decided but lots of new general information. I don’t understand why the Decipher slides aren’t sent once the biopsy came back! Such a wasted month!
Our oncology practice is part of a dedicated cancer facility where we live. Radiation would be 5x and done, or if the Decipher shows a more aggressive type, hormone therapy followed by 28x and done with hormone follow up. As described by the oncologist, few side effects of the 5x other than , in 10-15 yrs you might have a different kind of cancer caused by the radiation itself. Ditto 28x. Dr. says this like it is no big deal in the decision process, oy.
So DH has ruled out radiation if they suggest the 28x as most appropriate. We at least know that. He is very unsettled by the notion of cancer later on (which is what happened to his dad and uncle) but then again, surgery has the potential for longterm incontinence and a longer recovery time. The 5x therapy involves targeted proton beam something something (my notes are elsewhere) guided by his MRI and daily CAT scans. 20 minutes. The 28x therapy is 12 minutes. Hormone therapy is not used in all cases, depending on the Gleason/Decipher scores, and it seems unlikely he would be a candidate although he has very mixed results so far. (Some biopsy sites were 80% cancer, some were 5%, etc..)
Survival rates are roughly the same but again, without the Decipher results, nobody is promising. Generally even aggressive cases have a survival rate of over 80%. He also told us that the surgery vs radiation comparison includes “surgery but then needed radiation” as a surgical victory, which DH raised his eyebrows over.
Anyway. Between this and my mom’s worsening demention, I may have eaten some Easter candy that wasn’t mine today. Gonna go for a walk and try to put thinking on hold until the end of the month.
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