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I'm in exactly the same boat and I worry about it a lot. I keep thinking back to the period after the surgery but before I found out I still needed radiation. I felt so good thinking I was done with it and I could get on with my life. Then I went into the toilet when I learned that I'd have to have ADT and radiation anyway. I'm afraid of rejoicing too much right now thinking that I may have to face treatment again. I would not accept another series of ADT shots without a fight.
Keep a good thought; spring on the Cape is just around the corner.
My side effects were so intense that my oncologist has said he will not ask me to go back on Lupron. He will send be back to Dana-Farber in Boston for something new.
Hard as it might be to believe, I had a hot flash followed by chills every 10 minutes round the clock on Lupron. I am still meeting with the maker Eli Lily about it. After 6 weeks of that routine my oncologist finally put me on Mergace [Megestral Acetate] within 8 days my hot flashes stopped but you really need to get off Mergace for it is a testosterone inhibiber. If you don't get your testosterone back you will never get your sex life back.
I can't answer your question, Patrick, but I do appreciate Paul A and Joe's answers as they also apply to all of us. Keep a good thought as Paul says, and take Joe's advice and take someone out to dinner and enjoy what you have! (Crab and sea food where you live, right? And what about oysters on the half-shell - do you have those in Cape Cod? With champagne?)
Thank you for your thoughts Ted. It helps a-lot!
It feels a lot better to be happy than sad. You can practice being happy or you can just be sad. My problems are always in my face, I do not like it, but trying to live in the moment, now, not in the past or in the future does have its rewards. Around Sandy, we joke, have fun with our mistakes & problems about growing old. I feel that the meditation I have been practicing since October 08 has helped a lot. I am a Christian. But Buddha Says: you will grow old, you will suffer illness, you will die, your friends & family will leave you, and the decisions you made, are making now, and will make in the future are the ground that you stand on. Thinking about these realities binds you to the real world, acceptance in my heart allows me to fully enjoy being with Sandy, and I think that she likes it too.
Latest book read: "The Healing Power of Meditation" by Gabriel Weiss, MD.
Faith, Hope, & Love,
Joe
Let's use my scenario as a possible inspiration for you, of course every patients journey and biological make up...yada..yada..yada, make it so totally comparable maybe not. I am 7-yr. survivor whom had awful stats and diagnosed with total urinary blockage, stand by for the rest of the story....
Dx- 2002 age 51 (very good shape) but had total urinary blockage with lead me to walk=in emergency asap, pain was unbearable. Lead to first psa test and then biopsies (knowledge then-nil). Bpsa= 46.6 12/12 biopsies-all 80-95% cancerous (probably a clue the gland is presumably loaded based upon such, gleason grades found 7,8,9's in two sets all parameters about equal too. ct and bone scans looked normal/clear (no guarantee of course). Did ADT3 for 5-6 months, then radiations of neutron & photon rays-2 machines used, cont'd ADT1-3 total of 2 yrs., (hated the side effects of course)-quit and started DES 1-mg, this stopped slight psa increases and lowered them and stabilized so well after 1.5 yrs., that I quit that too (no drugs)..did well for almost 2 yrs., then by Nov. '08 psa went up to 1.48, so resumed DES and psa back to .36 currently.
Good part: feel very normalish, less muscle mass than 6-7 yrs. ago but could be alot of factors, have really no big side effects with DES (unlike the Lupron and LHRH drugs etc.) My onco-doc is even surprized and all my onco-doc testings blood work, t-levels, pyrilinks etc., all have been in the normal ranges for years and years even with PCa.
I know it can change at the drop of hat with PCa, right now I have to pleased. I have no urinary issues or bowel problems or lasting effects from my 'heavy duty' radiations, I got the max.exposure level supposedly.
So, even though I did hormone therapy up front, which you saw my stats, I had to go heavy hitting asap, glad I did the ADT3 and specialized radiations (Bolla study shows better survival with ADT & radiations). Have no regrets, ADT3 maybe a good program therapy, long term their is controversy now on that, so glad I switched, could still do: keto, nizoral or after that numerous other lesser known drugs or chemo+ treatments. Who knows I may do well for years, hopefully. Being proactive and getting psa tests etc., is wise, I get walkin psa testing for $15 so I get one once a month or so, that is how I monitored this well and tracked my numbers, that is another story.
Hope this gives some of you out there some relief that you don't have to panic within a few years after surgery or radiations, you have options and life ahead.
AGE 73 PSA at start 20.2, Gleason 8 Did IMRT +ADT [Lupron, horrid side effects] before, during and after radiation, 78 grays over 41 days. I am fine, no side effects. All the horror stories I have heard come from surgery patients/victims of your friendly neighborhood urologist...a surgeon
Patrick: With PCa things don't go south that quickly and has a tendency to zig-zag around to what you might expect next. I had surgery in '05 and in '08 completed radiation therapy and was told by the radiation oncologist the therapy was successful with a .05 reading. I decided to have another PSA done 3 months later and it went back up. Talked to the doctors again and they have no answers other than lets wait another 3 months. My story here is soon you will level out and accept things as they slowly come and not think negatively as you have much time and every day as we sit here and worry, thousands in the medical research profession are working on new medical products to help manage and cure this disease.
