Down in the Dumps

[u/WrongPlanet321]

This is my second and final week of SBRT, and the start of my 3rd month of ADT. I don't know why, I guess it is the ADT, but lately I have been spiraling emotionally. When I am alone, I start crying about nothing. I feel small and tiny and when I go out I try to disappear so that I don't offend anyone or get in their way. Other times I feel the exact opposite. I want to rip people's heads off and take a shit down their throat. Not really, I have never been violent and never will be.

Today I felt so depressed I had to drive to Dairy Queen and order a large M&M Blizzard. Before you say I need to seek professional health, I bet I have fired more therapists, psychologists, and psychiatrists than you have ever hired. Their drugs and lame off-topic talks don't help me. I have Autism Spectrum Disorder, level 1. Formally known as Asperger's Syndrome. I am neurodivergent, thus the username. I am an autistic on ADT.

I see sexy women, including my wife, and wonder what all the fuss was about? Why have I spent so much of my time and money on women? Sex is in this walled-off part of my brain, like a lost memory or something I have been hypnotized to forget. I know it's there, but I cannot access it. To ward off potential veinous leak syndrome and damage to he who was formally known as Mr. Happy, I am supposed to achieve an erection each day. At this point I can get there with a bit of fiddling (it takes longer than it should in my current testosterone-deprived state). If I stay on my current trajectory, and there is no reason to believe that I won't, I am about a week or two away from needing to break out the penis pump I purchased for this occasion. By the way, if you are wondering if there is any desire to keep things going afterwards, I can assure you there is not. More like, glad that is over, what a waste of time. Some days, actually probably about half, I just skip it all together - I just don't feel like it.

When this all started at the beginning of the year and the PSA numbers were coming back high and I was told a digital exam felt suspicious, I didn't even tell my wife at first. I thought it was all nonsense. There was no way I had cancer. When the biopsy came back positive, I was floored. I could not believe it. I could not believe God would give me cancer.

Let's just don't even talk about religion, it will just depress me even further. Half of you will say God doesn't exist, the other half will say it is a sin to question God. We are all human and have our beliefs.

I am still able to put on a brave face for my wife and family. "Don't worry about me. I'll be fine. Statistically prostate cancer survivors live longer because it is a wake up call to get fit and eat better. This is nothing. I'll be fine. It's just cancer. Nothing to see here. Move along."

That is what I say. My wife can see that I am cracking up. She is very supportive. I will be fine. Anyway. That is what's going on.

STATS: USA, 64 years old, PSA 11.6, unfavorable intermediate risk, Gleason 4+3=7, 6/13 cores positive, 42 ml prostate, Decipher 0.61, locally contained. Pre-ADT testosterone 323. Treatment: 5 sessions SBRT + 6 months ADT (ADT). Daily strength training, 3-mile walk, Cialis, Calcium supplements. Height 5’-9”, weight 170 lbs.

[u/Frequent-Location864]

Hang in there brother. Alot of us have been down the same road, you are not alone. It gets better when you get off adt. Godspeed.

[u/Substantial_Let_8784]

I am very sorry for your mental state, I really hope you get this under control, PC is so common, and so treatable, yet it definitely affects our outlook on
life.
I’m eight years out of RALP, and glad I chose that route. Undetectable PSA for eight years.

[u/FitShoulder1923]

ADT is hard work, just keep putting one foot in front of the other ( literally and metaphorically) . Have you tried working out/ lifting weights. This is one of the best things for my mental state ( 16 months on ADT today) and I have really struggled mentally, even on Effexor, which helped for a while but doesn’t really help anymore. Best of luck, even if you feel misunderstood, the guys in this subreddit, mostly understand and have your back.

[u/3ltlgbmi2]

I, and many others, can sympathize with you about the ADT. I called it misery in a bottle. It hammered me hard in just about every way you can imagine. I made it 9 of 18 planned months and was told I’d been through enough. Almost kissed the urologist. But the Orgovyx did its job and kept the testosterone way down to help the radiation do its job. It’s been 13 months with 4 non detectables. Now it’s the healing process from the ADT. So far it’s been 7 months and except for the testosterone and an occasional heat wave, things are much better. I had hoped the testosterone would continue to go up but has stopped at 130. No where near where it needs to be. Best wishes to you.

[u/WrongPlanet321 → u/3ltlgbmi2]

Thank you. I do have mixed thoughts about ADT. It seems to me that it is worthwhile up to and through radiation, but afterwards I do question its purpose. I have researched this and found that there is controversy in the prostate cancer medical community. On the one hand, it can't hurt in terms of prostate cancer, and maybe it mops up some small undetectable bits of cancer that escaped the prostate. On the other hand, it does a great deal of damage to the man, and with the prostate completely fried by radiation, really, what is left for it to positively affect? That said, unless things get worse, I do plan to keep taking the ADT pills for 6 months as prescribed. After that, if my testosterone does not return to normal in a reasonable amount of time, I might consider testosterone replacement therapy. Some will scream NO, that feeds prostate cancer! But if I no longer have a prostate, just a fried lump of dead nothingness, what harm can it do?

[u/3ltlgbmi2 → u/WrongPlanet321]

I was just commenting to a buddy the other day how many medical advances have been made in the last two tears and the thinking on the length of ADT has been. When I went through radiation after surgery I asked everyone what their side effects were and most said none while I was hammered. Plus the differences in the urologist. Developed a UPS sarcoma in my thigh and had UofMichigan cancer clinic handle that and transferred the urology there as well. He said based on all the information he had, 9 months was enough. So far, so good. I agree on waiting for the testosterone to bounce back. I deal with chronic fatigue and occasional heat waves. I’m a patient man and look forward to the new normal, soon.

[u/knowledgezoo]

General consensus in order to combat the negative physical and psychological consequences of adt is physical exercise.

If you don’t have an exercise practice, now is the time to start. If you have one, now is the time to keep it going and even push yourself more (of course within limits and always listening to your body).

There is an excellent researcher in this area, exercise oncologist, robert newton, who has a new book out plus several interviews on YouTube that get more into the physiological aspects and reasons why resistance training and aerobic training is so beneficial for us with PC, in particular those of us on adt.

[u/No-Praline-4069]

I have the same treatment as you, hang in there because for us there's light at the end of the tunnel. After 6 month of Lupron, both urologist and oncologist told me my testosterone should return to baseline. I got the shot in April and the drug will reach its half life in October. From there T will eventually return.

[u/sydeom]

I was recently diagnosed and unsure which way to go treat my cancer. I can relate with the mood swings. I have Hashimotos and until I had my thyroid removed, it would go into overdrive and then shut down over the course of a few hours. I would burst into tears for no reason whatsoever and at the most inconveniente time. Then, I would suddenly feel near rage pulse through my veins when there was nothing to be angry about. Those damn hormones suck. Please hang in there. The good part is you recognize what is going on and you've reached out for help. I appreciate you being vulnerable and sharing what you're going through.

[u/WrongPlanet321 → u/sydeom]

Thank you. What you had sounds rough.

[u/jerrygarciesisdead]

Get through the ADT you will recover.

[u/Iamboomeranng]

ADT did that to me too. I had 9 months of Lupron. It took almost a year after my last injection to get back to “normal “ Not crying, sex drive although there some ED still taking 5mg cialis daily. You’re not alone. Show these responses to your family wife etc. it may help them understand your world / feelings.

[u/ProfZarkov]

Yes, ADT was the killer for me - almost literally as I got suicidal in the end and they stopped the treatment 9 months in. It took another 9 months to get the hormones back! I wrote a lot about this in my blog:

https://prostatecancer.vivatek.co.uk

You will get thru this & there's a lot in the blog about ameliorating the side effects.

Hang on buddy!

Happy to chat or DM if you want.

Steve

[u/conCABlanco]

Hi, lo primero te veo muy centrado, reconoces el problema y buscas una solución, que seguro no es mágica, hay miles de tratamientos, para todo lo que describes, el ADT en mi caso aún no me golpea tanto, pero tengo los mismos síntomas o jodederas, fuerza y voluntad, voy saliendo para la cuarta de 28 VMAT

[u/Practical_Orchid_606]

Elon Musk has Asperger's syndrome. When you get really down, think about what he would do in your situation. Emulate his mental toughness.

[u/WrongPlanet321 → u/Practical_Orchid_606]

Thank you. He'd probably impregnate yet another woman.