Living with Prostate Cancer: Meet others & introduce yourself

I may have posted some of this several months ago. Well, they say there is nothing like a clean start... (Who said it? Damned if I know!)

OK, about 10 years ago I was a patient of a medical doctor at a community clinic. We were on good terms, so when I saw a full page ad for Androgel I brought it in to him and got a prescription. Within 2 weeks my libido came roaring back. After a year or two I lost access to Medicaid and now was on Medicare. I could not get a prescription. So I shrugged and lived with it.
Two years ago I mentioned to my new primary care doctor that I couldn't lose weight, didn't feel like exercising, and basically felt like staying in bed all day. She sent me for a blood test and one of the results was that my testosterone reading was very low. She directed me to a Urologist. He sent me for a blood test and my "low T" was indeed.

So I began getting male hormone replacement shots (in my butt, if you need to know). But after a few months it was evident that nothing much was happening. So off to another blood test. When the results came back he said that my PSA levels, which had been close to "1" were now 11.
So he stopped the HRT shots and gave me another appointment for a month later. He also wanted me to have another blood test a few days before the new appointment.

So I had the test and kept the appointment. That's when I was told that I probably had prostate cancer but he needed to do a biopsy to be sure. A week later the biopsy confirmed that I had prostate cancer. - Somewhere along this journey I underwent ultrasound tests and finally an MRI. When the MRI results were in he started talking about advanced robotic prostate cancer surgery.

Well, I'm not a doctor but I'm not a complete idiot either. I usually listen to WCBS (out of Manhattan) for an hour or two in the morning. I have heard endless ads for robotic assisted prostate surgery as well as ads for radio-active seeds. I don't like the sound of radiation, and it seemed that if I opted for the radioactive seeds I'd be making many return trips to the hospital.

Well, I hate hospitals, and I am not keen on any medical staff in general. I thought that I could have the surgery and that would be the end of it. Wrong! The surgery was done in the morning of June 16th, and I woke up the next day. I'm not sure if they gave me fentanyl prior to the operation but it had to be close to that. I remember none of it. I was given a song and dance about not being afraid of seeing blood in my urine, that I would probably be incontinent for a few weeks, and call us if there were any problems.

So I am pretty much alienated and isolated (by choice) from other people. Both of my knees are shot. No cartilage at all in either one. I was told 5 years ago to lose 50 pounds and then schedule knee replacement therapy for both knees. I lost the weight but I never went back to the osteoarthritis office. I decided that I would rather live with the chronic pain than have the surgery.

I think it was in July that I first came across this forum. Naturally I gravitated towards the posts regarding my male biology and whether or not I would ever be able to have sex again.

So, post operation, I had a catheter in my penis. I really can't recall whether it was a week or two. I went back to the hospital, had the catheter removed, and went back home to my 5 cats and my bi-polar girlfriend. Then I noticed something unexpected. I'd be sitting at my desk, in front of my PC, and feel a warm liquid on my feet. In the beginning it was very much blood, but after 3 or 4 weeks I regained some control over my bladder. I was also happy to see that the yellow urine was greater than the blood. There wasn't any pain throughout this process.

So its been about 6 months. I have some questions but I don't believe that I would get honest answers. I have to wonder if the supplemental hormone therapy prompted the cancer. I wonder why the Urologist was so gung-ho about surgery and downplayed the few questions I had about the radiation process.

And if you're a guy reading this, let me assure you that your penis WILL shrink in size by a half inch to an inch. They removed my entire prostate, and apparently there are 2 steps to being able to get an erection and reach an orgasm. The prostate gland is 50% of the sexual process. Lately I've been feeling a "tingle" down there, but nothing else.

I also don't know how I will ever find out if a few cancer cells escaped and I will eventually have cancer in another part of my body. But just in case, I have been looking for "no kill" animal shelters. I'll be 70 in a couple of months and I think I've had a good ride on this roller-coaster they call life. My girlfriend only tolerates the cats because I have told her many times that I am more concerned for their wellbeing than I am of hers. All 5 cats are "rescue cats", abandoned by their owners when their owners moved out of the condo complex and left their pets behind. I'm all they have.

There is something that concerns me a bit. I'm becoming more understanding of men who kill their families and then themselves. I don't plan on saying "Sayonara" anytime soon, but I can't rule it out either. If my knees continue with the joint pain, and the cancer comes back in some form... Speculation is pretty useless at this point. I guess I'll do the best I can over the next few years and come to a decision then.

Besides, it'll sound kind of weirdly satisfying to say that I am 3/4 of a century old.

Pray and ask for intercession
More remedies if needed PL 177
https://health.ucsd.edu/news/releases/Pages/2022-10-05-patient-first-in-region-to-receive-new-treatment-for-advanced-prostate-cancer.aspx

With metastasis to my spine I had my L2 lumbar intensely radiated 2 x 5 minutes to take out 1 x 1 inch cancer then back on Zolodex
Psa was 1.2 now 4 then 6 so looking at Enzulitimide 4 pills a day chemo

Feel great Pray and ask for intercession
More remedies if needed PL 177
https://health.ucsd.edu/news/releases/Pages/2022-10-05-patient-first-in-region-to-receive-new-treatment-for-advanced-prostate-cancer.aspx

@norske46, thank you for this message, I’d like to in turn thank you. Not only have your received support and information from Connect, you’ve given it in equal measures. Whenever I tagged you on a discussion where your experience was relevant for another member, you were there in a virtual flash.

Norske, when you say, “approaching the end of my journey, perhaps two or three months” may I be bold to ask for more information. I know you are living with stage 4 prostate cancer. Does this mean that you have entered hospice?

Thanks so much for your comments and recommendations. Your courage and positive attitude give me hope going forward.

Take care and God bless,

Jim

God Bless You, Thanks for your courage. Inspiring

Good mornning all. I have been following and using Mayo Connect for the past four years or so since I was originally diagnosed. I have found it to be a valuable tool for my cancer journey. The help I have received from you members and the moderators, especially Colleen,is beyond measure. I am now approaching the end of my journey, perhaps two or three months, and I wanted simply to say thank you for your support and assistance. Good luck with you continuing journey. Hlthe best of everything as you may love forward. Norske46

Thank you for your reply. I am afraid I am unable to do much in life now. I was flying paragliders 5 years ago and have always been active, doing a daily walk of at least 40 minutes. I also have type ii diabetes and am getting severe pain at night. Yes I do research my meds and suffer many of the symptoms applicable. I go to gym 2x weekly and enjoy driving and socialising with my friend. I have become bored with TV, and reading, was an avid reader. I still get pleasure from using my PC but cannot do the things I would like due to loss of motivation and muscle strength e.g. I cannot work at a work bench or get up from the ground easily. I don't talk on the phone for more than about 20 minutes.
Much of my problems can be attributed to age, but the idea of impending death does not do great things for morale. Used to inhabit Veterans website, but their problems, mainly being much more than mine just left me down so I opted out. I am very close to my 2 septaguinarian brothers an have an attentive wife, who does not like discussing my condition. I guess that's why I am here. To see how others are going.

@hobok55, welcome. Not everyone does surgery. Many members here have chosen radiation and hormone treatment as their primary treatment.

You many also be interested in these related discussions:
- Effects of Zoladex https://connect.mayoclinic.org/discussion/effects-of-zoladex/
- Zytiga for Prostate Cancer https://connect.mayoclinic.org/discussion/zytiga/
- Metastatic Prostate Cancer: Where do I go from here? https://connect.mayoclinic.org/discussion/metastatic-prostate-cancer/

How is your quality of life? Are you still able to do the things you love?

I was diagnosed 3 years ago with advanced metastic prostate cancer. My PSA level had risen from 4.5 to 9 in a 12 month period. After 6 months I finally was referred to a radiation oncologist. After hormone treatment and radiation for 1 year my specialist referred me to a medical oncologist who put me on Zytiga, my PSA levels have risen over the last 3 years from 2.5 to 4 and she now says I should have been receiving Zelodex injections 3 monthly during the last months. I am now 85 so surgery was not possible. Scans indicate tumours in my spine and possibly lymphatic system and 1 lung. I have made all logical life preparations, but wish I had been treated and advised better from day 1, 3 years ago, but hey I am still here. From Brisbane, Australia.