I haven't posted my prostate cancer bio here yet but I intend to in the future. I had a prostatectomy along with my seminal vesicles and the left side lymph nodes proximal to the prostate. Gleason 4+3 N0. The cancer had escaped the prostate which could only partial be removed since it was microscopic and only confirmed by a pathologist who reviewed sample slices of my prostate after surgery.
My PSA was about 7 when I went in. My prostate was swollen and every biopsy sample was very positive, in every quadrant which 3 samples from each.
My post is to tell about my history of depression and bipolarII since childhood. It has been a huge QOL issue for me and has always been on a 4-5 week cycle. Major depression for 3-4 weeks followed by a week (or so) of mania which provided some relieve from the overwhelming depression. I still was able to function and got a BS in Chem and an MBA and many job offers and rose to higher management and Fortune 100 consulting on systems and work procedures. I never thought I could do that and considered suicide throughout my life.
I don't think any of this was related to my prostate cancer which was found in 2019 and I was asymptomatic except for the common urination issues which I attributed to my age (69 at the time). I am now 71. I have been on a huge variety of meds since my depression either didn't respond to them or only a small bit. I am now on two that gave me the best relief.
I refused radiation and ADT after surgery because I was very concerned that my depression was caused for the most part in monthly fluctuations in my hormones, as women go through with monthly estrogen changes and mood changes. Since my depression was already at the max that I could tolerate I was worried at what reducing my testosterone would do to me and my depression.
I told my oncologist at every visit about it and how I felt about it. I have a strong interest and background in physiology, biochemistry, and mental health issues. I had a strong basis on which I based my concern. So I was on wait and see basis until my PSA finally rose to over 9. My oncologist, and my wife, finally got me to go for the Lupron.
I had the 3-month Lupron then and my PSA came down in the 0.1-0.3 range within the next 4 weeks. My depression went from manageable with difficulty to completely unmanageable and what I would call catastrophic. I could not get out of bed for 11 months with zero motivation and energy. My suicidal ideation went from often to constant, every day. My mania disappeared so I had no monthly relief from the depression. I went from constantly doing projects, like building a tiny house/shed from scratch with major aesthetic details. From my long history of this condition I know as much about depression as some of you know about prostate cancer details. Projects were my "relief" from the depression. As they were through out my life.
My concerns about the ADT proved to be totally correct. I was a waste of a human being with almost complete loss of QOL. I lost my physical strength and balance as well. I had to have 3 months of PT to regain my ability to walk very far. I have since found out that muscular/skeletal issues have also been seen in those with ADT. I am sure the low testosterone also contributed to that in addition to no exercise other than going to meals and the bathroom. It was during Covid for the most part so that could have contributed by losing outside human interactions as well. But it was the ADT that was the major cause of my major depression.
Two months after my shot and as the depression got worse and worse I kept my oncologist informed about my condition. He never really ever understood or felt worried about it. So I decided to stop the Lupron after the 3 month period and watched my PSA go back up to the 9 range, at which time he pressured me to restart it, along with my wife who was very concerned.
When I went in to (finally) get the next 3 month shot, the RN who was there at my shot appointment asked me how I had done with it. So I told her about it and she told the nurse aide to put the loaded syringe away. She said she would not administer the Lupron until she had informed my oncologist and have him approve the injection despite my complaint. They made me wait a couple of hours and then the urology cancer PA, and the NP, and finally my MD talked to me. The clinic (Seattle Cancer Care Alliance) have a psychiatric department since many cancer patients, obviously, have emotional issues with all the different types and stages of cancer there.
I met with one of the staff sociologists for an hour long interview. And then a half hour with the MD psychiatrist. They recommended that I get professional mental health treatment (which I already had ongoing before and during). They normally would have prescribed the standard meds and counseling. I have seen this is the "normal" response for prostate (and other) cancer patients who develop emotional issues. They told my oncologists that he should not give me another Luron injections for the time being.
My depression did not get better somewhat until 11 months later despite my slowIy increase in testosterone which is now in the "normal" range. I tracked everything in a personal "diary" so I can give the dates pretty accurately. My mania has never come back so I am no longer clinically Bipolar. And when I say my depression got better it still did not get as manageable as before. I still have little to no motivation any more. And very little interest in doing things.
Then my PSA started getting higher and higher and my doc pressured me to continue the ADT. I told him then and have continued to tell him I would rather die the very next day than go back to the depression I had. I didn't think I would survive it the next time. So back to wait and see. My PSA actually leveled out for 6 months which was not expected and then I got an acute, sharp pain in the top of my hip bone. He referred me for a bone scan and a CT with non-PSMA contrast. Nothing found in either.
Then he ordered a PSMA-PET/CT scan (18F contrast). It showed nine positive lymph nodes from moderate to mild, with three in my ilia area, three in my periaortic area, and the rest in the supraclavicular area. So I am now metastatic. And I can't tolerate any ADT meds, either Lupron or any of the newer hormone drugs. He said he didn't think any of the other treatments, such as PSMA radiation or immune approaches. He says they have basically shown to be not very effective. (I am sure there will be numerous comments from you all who believe that is not true.).
The mortality tables from research are most all done for patients who are on long term ADT or had long term prior. Since I won't be I suspect that my odds are less than the ranges given in these tables. My PC has not gone to my bones or other organs but it would be a miracle if that is not the next step. Then it would be palliative radiation and perhaps chemo.
I am not a basket case emotionally. I am at peace with this. I've lived an interesting and long life and am not going to travel the world looking for a therapy that might prolong my life an extra four months. Especially if it worsens my QOL.
My apologies for this huge post. My objective is to tell you all that, for some people, their mental health is directly associated with testosterone. I forcefully told my doc that any ADT prospects be screened for depression, and, if possible, given a short acting ADT before going for the longer shots. And, you should all know that the effects of the ADT may go over the given time range, e.g. 3 months. I.e. the half-life of the side effects can be very long indeed.
I do hope some other non-hormone successful therapies are developed. Ones that can actually extend lives with good QOL, and for more than a small handful of months.
I reserve the right to be wrong about specific dates and blood levels. It is all substantially correct but I don't have my detailed, more accurate, notes with me. I can give those should anyone insist.