I went to get my testosterone checked and it was slightly low but the doctor said before he prescribed T he wanted to do a PSA test. My PSA was 8, so he told me no sex or biking for 10 days and we retested and it was down to 5 which he said was still high. I'm 64. An MRI revealed PIRADS lesions and a TRUS ultrasound biopsy of 15 cores revealed 10 with cancer, 3 of them Gleason 4+3.
I went to a major cancer center to be treated. They started me on Casodex and Lupron and I have 26 planned radiation treatments next month.
Lupron has been a nightmare. After about three weeks, I started getting heart problems where my resting heart rate, normally 60-65, goes to 150-180. This happens about twice a day. It stops if I jump into an ice cold shower. I made an appointment with a cardiologist but they can't see me until July.
I can't sleep more than 2 hours a night. I wake up and am unable to get back to sleep. Sex with my husband is nonexistent when, prior to this, we were at twice a week at least.
For the first time ever in my life, I think about suicide at least 3-4 times a day and have even begun formulating plans. The only reason I don't do it is that it would devastate my husband and brother.
I'm thinking of just stopping all treatment. I live in a Medical Assistance in Dying state so if the cancer did progress I wouldn't have to suffer. However, my doctor said that, while the treatment is going to be rough, there's a 90% chance I can be fully cured and that the side effects of Lupron are temporary (this isn't what people online say, though!). But isn't the doctor's job to give people false hope?
The ONE thing that was helping me--50 mile bike rides--I've been told to stop doing until after radiation therapy so I stand outside on a beautiful spring day and cry. I still go to the gym, do yoga, hike and walk my dog but even walking is starting to feel like I'm walking in sand and every step is hard to take.
So, I'm asking, is it actually worth it?
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IsItWorthIt
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"(this isn't what people online say, though!). But isn't the doctor's job to give people false hope?"
Idiots online don't know that it is just one shot of Lupron. When it wears off, your T level should return to normal. You really have no choice but to wait for it to wear off.
Your mood swings are probably from the Lupron too.
No, it is not the doctor's job to give you false hope - his job is to tell you the truth as far as he knows it.
I hear you. World turned upside down. Much of it unexpected and unpleasant as hell. I don't have a MD but from my experience the thoughts and feelings that you're having are not unusual. I, too, had a very bad reaction to Lupron (actually, to the low T that it caused...to be more precise). Many, many side effects including wt gain, joint pain, depression/despair, man boobs, fatigue, and so on. And, yes, thoughts of suicide, unexpected crying spells, and extreme mood swings. Unfortunately, Lupron side effects lasted far longer than I was told they would last. But, as Tall_Allen said, your T will return and you will likely feel much better.
For whatever it's worth: exercise was the only thing that seemed to help. I hired a trainer and went to the gym every day (even on my darkest days) and walked a lot. As an aside, I never lost the man boobs and the wt gain continues. However, on the plus side, my sex drive returned. Oh, btw, make sure you "exercise" your penis as well. Get a pump, masturbate, keep the blood flowing..even when you have zero interest.
Consider a support group or individual counseling.
Suggest: "Androgen Deprivation Therapy: An Essential Guide for Prostate Cancer Patients and their Loved Ones." It's written in plain, simple English and offers strategies for coping with PCa. You're not alone.
Thank you. This is encouraging to read. I'm going to talk to a therapist today and will look into a trainer after my radiation therapy is complete. Fortunately, having a high-energy large dog, I'm forced to walk 3-5 miles every day even when I don't feel like it and seeing how happy she is does make me feel a bit better.
Fortunately, my care team found me a cardiologist on their team who I am seeing next week instead of waiting two more months. They'll help determine whether my tachycardia is medication related or just anxiety-related.
I did try your advice last night and put on some p**n (my husband was sound asleep--he can sleep in five minutes which I've always been jealous of). It did nothing but I did manage to rub one out which surprised the hell out of me so will do it again, hopefully with him this time.
I’m a 54 year old gay man and just went through radiation as well. I didn’t have to do ADT because my stage was 3+4. However, I had been on TRT and just stopping that caused my testosterone to drop. My libido has not come back six months later and have much more trouble with ED. I’m still having some bowel issues and can’t enjoy sex like I used to. Hoping these things get better with time! I have a wonderfully supportive husband as well but want his needs to be met as much as mine.
Reading your post, it definitely sounds like there’s a lot of depression. I’m glad you’re seeing a therapist but consider a psychiatrist or mental health nurse practitioner for medication as well. Of course it’s likely biochemical changes from the Lupron causing the depression but it could make a huge difference in your mental state to get that treated as well. IMO, a therapist can’t hurt but medication may be even better suited to what’s likely transient changes from the treatment. If you’ve tried one med and it doesn’t help, try something else.
Everyone always thinks first about physical health but mental health needs to be a priority as well.
Thanks. I was recommended Effexor or Trintellix but am worried that the sexual side effects of those may make any possible sexual recovery more difficult. That said, I will ask my doctor about whether a six month course might be work. I think you're right about depression--I've been sad before but it's never been like this and feeling I'm stuck in a deep well.
Good luck-I bet you'll feel better with treatment for depression. Going through prostate cancer treatment is bad enough without feeling down and hopeless on top of it. Personally, I wouldn't worry about sexual side effects of antidepressants. Worst case probably is the they affect your libido but can't imagine it would be as bad or compare to ADT. And of course everyone's difference, but I'd rather not have a great libido than be depressed.
It is worth it. Gleason 7 is not a death sentence. You chances are good. I just finished a very interesting book called "The Cancer Code" A little dated (just a few years old) but it brings up some interesting points I had not heard of elsewhere regarding metastasis. I am going to cover this in another post.
Bottom line for you is that you have a very good chance of a pretty normal life after treatment. The Lupron is short term and as bad as it is, it certainly beats a slow painful death. I am much farther along and often have thoughts of suicide but I would probably never do it until in severe pain with no quality of life. My husband would be even more of a mess without me and the dogs would get little exercise and become fat and lazy. My dogs need me and I plan to be around for them as long as possible.
I do not understand the prohibition of biking. I had brachytherapy and IMRT concurrent with Lupron and no one told me not to bike and if they had I would have said something nasty. Exercise is essential when you are on ADT. If you are like most people you will have few side effects of radiation. I had absolutely none and I biked the whole time and still do but pause for just a few days before getting a PSA test. Some people say more days but I think three is enough. Biking with my dogs is what keeps me sane and my spine functioning. I have "graduated" to an e-assist bike because I live in the mountains and just getting up the 1.5 mile driveway is impossible for me anymore on a regular bike. If I lose stability or if fractures are likely due to bone loss I will get an e-trike or something similar. Nothing is going to stop me from biking other than death. I believe there are others on this list who feel the same.
I had SpaceOAR gel implanted and was told biking could cause it to move before treatment and make it less effective protecting my rectum. The "no biking" restriction is for three months, but I live in the northeast and we're in the best biking weather right now.
I will ask my oncologist, though, if there's any reason biking can't resume after radiation treatment is done. It seems like, at that point, it won't matter whether the gel moves or not.
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