I believe that most of us already knew that as prostate cancer advances the strain caused by the disease progression on both the survivor and his spouse increases. This strain has a direct negative effect on the emotional quality of life experienced by the survivor and their spouse.
Despite this, there are very few support groups or programming designed for men with advanced prostate cancer and even fewer programs for these men and their partners or spouses! When I experienced my recurrence, I unsuccessfully searched New York City and its suburbs for any support program for men in my situation. Because of the unsuccessful search, for the first year after the recurrence of my PC, I often felt that I was the only person under 55 years in the entire city that had advanced prostate cancer! I knew, intellectually, this was not the case, but I could not find anyone else or any support programs for men in my situation.
Men and their spouses (partners) who in fact are most in need have the least available recourses. It is very nice that so many of our prostate cancer nonprofits offer regular support programs for men who are newly diagnosed and who are dealing with the life changes resulting from primary treatment. However, most of these organizations have forgotten those of us who have progressed and developed recurrent and advanced disease. Since 1/3 of men who receive primary treatment will experience a recurrence, we are forgetting too many men, men who are in fact most in need!
Malecare has responded to this need by starting a New York City couples support group for men and their partners. In addition, they have an internet support group for the same population. (for information on these programs go to www.malecare.org
I call upon the other prostate cancer support programs to step up to the plate and recognize this need. It would not require a large contribution of recourses, but would provide great help and comfort to a large, needy, and under served cohort of men.
Joel T Nowak MA, MSW
My husband was diagnosed with PC and had a laproscopic prostatectomy at VanderbiltUMC in August of 2004. The surgeon felt that the surgery was successful and that no further treatment was necessary. At diagnosis, his PSA was about 4 and his Gleason was 6. His PSA was checked every 3 months and was always “negligible” until August of 2007, when it was 123. He went back to the surgeon – after a prostascint and bone scan, both of which showed no signs of cancer at that point. Hormone treatments were mentioned, along with the side effects, but he was not urged to start treatment at that time. Instead he was told to “wait and see” and come back in three months and be retested. By the third month, he was having some aches and pains, which he wanted to attribute to things other than cancer. Our local doctor felt that he should wait for his appointment at Vanderbilt – to talk to the “experts”.
December ’07,after another bone scan and Cat scan and PSA test, the doctor informed us that the PSA was 1422 and the cancer had metastisized to the bone and liver. Bob was given his first Lupron shot and a prescription for Casodex. He was scheduled for another appointment in 3 months. For several weeks, he’s been experiencing generalized pain – he thinks it could be muscle or bone pain, severe enough he can’t sleep at night, and extreme fatigue. I want to believe that something can be done so he’ll feel better and be in remission – at least for awhile. We don’t know if the pain is a side effect of treatment or the cancer, but I suspect it’s the cancer. I’m very angry with his doctor – and have been since August, when I thought they would do something about that PSA of 123.
Shouldn’t he be going to a medical oncologist who would oversee the various treatments he’ll need? I read Dr. Charles “Snuffy” Myers’ book on hormone treatment and PC; I wish that we’d read it several months ago.
Judith Grunert