My prostate cancer

Hello, I am a new member, I just joined a minute ago. My story is a little convoluted and I apologize in advance for the length but I'll attempt to be as clear and concise as possible. I was diagnosed with malt lymphoma 13 years ago, I was 49. It was a terrifying experience. I had chemotherapy for nine months. I felt really bad during chemo but I was hopeful for a recovery and indeed, I did recover, that cancer is gone. I was 51 by then and at that point it was the worst thing, medically, that had ever happened to me. Once it went into remission, I started trying to restart my life put the cancer behind me. Unfortunately, I lost my business during this period and wound up with out insurance. We were struggling financially for a few years, and I noticed changes in my urinary habits, having to go more frequently, getting up at night several times a night. My wife kept after me to go to the doctor but without insurance I couldn't afford it and I was afraid to, that was the real reason. My father had prostate cancer and I had begun to realize that I might have it as well. I didn't think I could go through cancer treatment again so I attempted to ignore it. Finally, four years ago I got really sick, I thought it was food poisoning at first, but after a week of it, my family took me to the emergency room. They did a CT scan and found a large mass in my abdomen. The doctors didn't know what it was but they suspected prostate cancer. I went to a urologist a few days later and he was very concerned, he thought it might be bladder cancer. After checking my bladder and not finding a tumor, he started concentrating on my prostate. I was scheduled for an exploratory procedure the following week. The doctor at that procedure would not allow it to continue because they found problems with my heart. I had a heart cath and was told I had blockage in two arteries and I had one or two heart attacks. The food poisoning was actually a heart attack. They believe that my heart was weakened because of the chemo I took. So, after a couple of weeks, my prostate exam finally happened. I had a PSA of 155 and a Gleason score of 8. The strange thing was that there was a tumor filled with fluid attached to my prostate. The doctors had never seen this before. That was the mass found in the earlier CT. It was decided that the prostate should be removed. I had surgery but they had a very difficult time because of the tumor, at one point, they were going to close me up and not remove the prostate at all, they were afraid they might damage the wall to the rectum. Anyway, they were able to remove the prostate and the tumor. After a few weeks, I had a PSA test and it was 35, lower but not good. The cancer had spread from my prostate. I had a bone scan and it was clear. I then started a course of radiation treatments, 37 in all and two rounds of hormone therapy My first PSA test after that was 0. I can't tell you how good that felt. I started having PSA tests every three months and it was fine for over a year. In October of last year my PSA was .002, it has risen steadily and is now 4.5. I have an appointment with the doctor in Nov. They will most likely start hormone therapy at that time. It has been a roller coaster ride this past year and I'm depressed, having a difficult time with this. One doctor told me that this cancer would kill me, a couple of others said, that with my age, I would die of something else. The messages I'm getting is that they expect the hormone therapy to work for ten years or so. Which would be great but I keep getting pulled back into depression. I'm terrified, scared to death, but I rarely show it, my family has been wonderful throughout this and I know they are worried as well. That's my story, it feels good to write it and see it on the computer screen. Thanks!

DS,

Thanks for sharing your story, and welcome here to HW PC. Yours is one of the more horrific medical stories I have read in a long time.

You have dealt with so many terrible things. And your prostate cancer story, even by itself, is very severe, since you have failed surgery, and radiation.

Guess it's time that you consider (if you haven't already) some of the more advanced treatments that are out there for men in your situation.

Are you seeing a really good oncologist specializing in prostate cancer at this point? If not, that should be high on your list, considering your treatment failures thus far. You past medical history may complicate matters at this juncture as well, so all these things will have to be compensated for.

I wish you the best, appreciate you joining us. Please, despite what has happened to you, never ever give up hope.

We are here for you.

David in SC

Welcome Driving Sideways, sorry you need to be here, but glad you found HW.

You presented a real clear picture of the medical challenges that you've faced and have bravely fought. You have another challenge ahead of you, but there are a growing number of treatments available today, even beyond hormone therapy, that you'll be learning of over time.

As important that it may be to treat the PC, your emotional state and depression is just as important to get under control. Don't keep your feeling bottles up inside, let your loved ones or medical professional know how your feeling, they can help you with this as well.

We're here to listen and help however we can.
Looking forward to your updates, best wishes to you!

Can't stop fighting now, you likely have a number of good years ahead of you. I wish you all the best, and please keep us posted along the way.

Hello Driving Sideways,

It sounds like you are going to be dealing with this stuff for a long time. These days being diagnosed with advanced prostate cancer -- which was once a death sentence -- is more and more like being sentenced to a new and unwelcome all-consuming new hobby by a demented judge. There are so many different treatment options to try. Different things work for different men and one can spend decades trying different things as new and better treatments go on trial or become generally available.

This forum can be a help in that regard. We always have a few threads running where men, their partners and caregives are swapping their experiences with new and emerging treatments. It is a good source of information you can use to keep your doctors on toes. There's no medical advice here but this forum is an endless source of topics to talk to your doctors about.

One other thing you might consider is attending one of our GFMPH gatherings when you get a chance. Prostate cancer is a very isolating disease. You mentioned how good it felt to find a forum where you could just write your story down. It is amazingly therapeutic to spend some time having fun with guys who know where you are at. We have a Carribean cruise coming up in December, a gathering in Florida coming up in March and an Alaska cruise in June. You just missed a gathering in Rochster, NY last week, but the wonderful madman who hosts the event has been holding it every year for quite a while and he doesn't seem to want to stop, so there's next year... We always have a good time.