Now what?!?

reluctant_member

I had radiation for G7. Doctor wanted six months of ADT. He told me it would wear off.

It's now six months past the last time I took Orgovyx and my T only went from 7 to 26. My doctor said I'm the first patient under 60 he had on Orgovyx who did not get their T back. I don't trust him.

Now he wants to do a cardiac workup, bloodwork and bone scan. I refused. My joints hurt all the time, I cry and sometimes feel suicidal, I have a giant belly even though only drink 2 protein shakes a day and eat nothing else, my heart skips lots of beats and my body hair and muscles are gone.

A friend told me to go online and that there are doctors who prescribe T without ever meeting you in person and that all I have to do is lie and say I never had prostate cancer. Has anyone done this? What are the risks. I don't care if I die at this point I just want to feel like a human again.

Oldernow

Hi reluctant_member - you didn't mention your PSA. Can we assume it is undetectable and staying there?

I am now 78

I had two (6 month) Lupron shots along with 28 radiation sessions back in 2023. My PSA dropped from a high of (20 ng/mL) to (<.03 ng/mL) and, thankfully has stayed there. My testosterone dropped to (<12 ng/dL) from my normal (521 ng/dL).

My last Lupron shot was in Oct of 2023. My testosterone stayed at (<12 ng/dL) for a year. It finally started creeping back up last fall. It was (97 ng/dL) in Oct of 2024. My next bloodwork for both PSA and Testosterone will be next month - April, 2025. I'm hoping the Testosterone is still recovering while the PSA stays low.

I wasn't offered Orgoyvx but I was told (after the fact) that Testosterone recovery after Orgovyx is expected to be quicker than with the Lupron I took. My urologist and radiation oncologist both said it is not unusual for a slow testosterone recovery at my age. They even suggested testosterone replacement therapy as long as my PSA stayed undetectable.

I have also had extreme deterioration of my muscles and joints. After two rounds of therapy sessions for weak knees I am scheduled to see an orthopedic surgeon next week to determine how much damage has been done to my knees by lack of Testosterone.

I have the excess belly fat, hot flashes and emotional issues. I find myself second guessing my decision to have the radiation and Lupron treatment for my 3+4 Gleason cancer that was still contained. I had absolutely NO issues with my joints etc. before these treatments. I may have defeated the cancer but my quality of life sucks!

You may want to follow through with your doc on the tests he has suggested. We all react differently to the cancer treatments and your heart and bones can be adversely affected. It is difficult to deal with but we have to move forward with what we have left to try to get some normalcy back. Talk to your doc about your emotional issues or get a referral to someone else.

Good luck on your journey -

Oldernow

Old Salt

Recovery from Orgovyx is quite variable; 3-6 month is common but it may take longer. Among others, age plays a factor as well. I sympathize with your feelings, but do give your recovery some more time (another six months).

I don't see a reason from your write-up do do a cardiac work-up or a bone scan. There must be more to this than you have disclosed in your post.

I agree with the post above and recommend that you see a specialist dealing with emotional issues.

reluctant_member

https://csn.cancer.org/discussion/comment/1721431#Comment_1721431

I thin the cardiac workup is because I had a lot of really fast heartbeats while on ADT just randomly and still have it sometimes but it only lasts 10-15 seconds. Not sure why he wants a bone scan but I know people on long term ADT do get these scans

Clevelandguy

Hi,

From what I know about ADT drugs your symptoms are fairly typical. Not everyone recovers from ADT, some have very mild side effects, some have severe. If it was me I would get another set of doctors/hospital network for a second opinion. As you probably know supplements to raise T can awaken your Prostate cancer if not used wisely. I would stay away from the mail order stuff and go see some real doctors that can help with your low T and investigate your ADT issues. Good luck…

Dave 3+4

reluctant_member

https://csn.cancer.org/discussion/comment/1721429#Comment_1721429

I appreciate what you except for the "we have to move forward with what we have left to try to get some normalcy back" part. I don't want to live this way. I'm giving my recovery a year which will be at the of May so it's a fair shot. If I don't better by then I'm going to Spain where I have dual citizenship because they allow euthanasia for a chronic condition like cancer

Oldernow

https://csn.cancer.org/discussion/comment/1721487#Comment_1721487

Realistically, giving yourself only a year is too short a time to expect "recovery." Hopefully you have family and/or a support group with whom you can share your plans and concerns. I can't imagine what my wife, kids, grandkids and great-grandkids would feel if I left them in such a manner.

Try not to let your depression due to health issues influence your decisions. Even though my cancer journey has changed my body and caused discomfort, I am still a person with responsibilities to my self, friends and family.

I truly hope you will follow up with your doctor(s) to get a clear path forward.

Josephg

https://csn.cancer.org/discussion/comment/1721487#Comment_1721487

I respect your opinion and your right to it, but as @Oldernow stated, this appears to be a self-indulging point of view, and I wonder if you have fully taken into account the feelings, thoughts, and wishes of those around you. Family, friends, etc. If they are aligned with your thoughts and contemplated action, then so be it.

centralPA

If you don't care if you die at this point and just want to live again, then go figure out a way to get some testosterone. Whatever it takes. At least do that before you book that one way trip to Spain.

It would break my heart to see prostate cancer win in the end with you after the fight you've fought, due to depression.

reluctant_member

https://csn.cancer.org/discussion/comment/1721524#Comment_1721524

How do I tell if my feelings are real or just a result of depression? How do you even tell if you HAVE depression in the first place?

Buff1977

https://csn.cancer.org/discussion/329063/now-what

reluctant_member

I went three years on ADT. You had six months…..I started to walk to lose that fat belly and I did ! I am one month away from being 66 yrs old. My testosterone is 265 after 1 1/2 yrs since my last shot. That is still low but I have my sex drive back and I still am in great shape. Its going to take some time….my advice is get started on an exercise program and maybe see a therapist. Like I said…even walking will help…. I ended up losing 60 lbs while I was taking ADT. All you have is time so start using it ! Take a negative and make it positive !

Buff

centralPA

https://csn.cancer.org/discussion/comment/1721526#Comment_1721526

Maybe just say "f*** these f***ing feelings" in the first place, and go about living?

I'm being a flip, but not 100% flip. These folks take a very direct, pragmatic (and profane) approach. Actually an Eastern philosophic approach. With profanity!

https://fxckfeelings.com/wp/manifesto/