Interesting story - 04-11-2012 03:54 PM
I guess in some ways this is like preaching to the choir but I had to share, because not everyone here is an old timer.
I have a friend with peritoneal cancer... it's rare and mimics ovarian cancer... usually they don't find out what it really is until the ovaries and uterus are removed, and usually this is late stage.. Standard treatment is chemo, debulking surgery. There is no CURE... as in - once you have it it's life long - managed with chemo, and remission periods - if you find the right chemo.
Initially she was at Trillium... a local cancer hospital. When I first asked... stage etc... she said they didn't want to know... (it was stage 4 - her husband said the first dr. told them that whereas - the second said ignore the stage this is what we are going to do.) This being a rare cancer I would have sought treatment in Toronto (40 minute drive as opposed to a 25 minute one) I suggested this but they seemed content. Last August she was declared cancer free (in remission) She had finished treatments in April her scan was August. Late Sept. she began having the same symptoms. Went back in. The tumor was back. Her original treatment was a combo of cisplatin, and taxol. This time the put her on cisplatin only (NOT SURE WHY...) after her second treatment she had a bad reaction to it. So they were going to put her on a newer drug... doxil. Well this is one of the ones with a 7 month waiting list... so they put her on a 1970's drug.. this made her super sick, and all of her hair fell out again. by dec she was not looking good. I suggested again she call PMH (the top CCC in Canada - in Toronto) They did a few more treatments. Scanned her and the tumor had not only grown but spread. The dr. sent her home to die. Told her on his way out, use your pain meds they'll help and you'll need them (he's an ass) I finally said get your but to PMH (and educate yourself and ask questions!!!)... They know their stuff, as rare as it is they have seen this before more than anyone I would imagine, and they had a treatment protocol in place. PLUS, they had a clinical trial. She finally headed down there in february. They told her taxol was the next step, and that she could go back to trillium, or have it at PMH... I told her to stay there... and then they signed her up for the clinical trial...
She's been there for 8 weeks... chemo (taxol) and trial drug weekly... results... %27 reduction in the tumor.
My point - Her original dr was willing to let her die so when you get a diagnosis of cancer, don't hum and haw, don't drag your feet and think that the local hospital is good enough. If you want to give yourself the best chance, do what you can the first time out, go to the best hospital, the best dr., and do what they say. I know there are quite a few people here who've not been treated at a CCC and are doing fine, but that is often dependent on the individual Dr. it's hit or miss. It's scary to think that this other dr. she had has likely done this to other patients... how many have taken his advice and not sought out another option?
Another interesting aside. I suggested, circumen, & vitamin d - one is found readily in food, the other in the great outdoors... I told her to ask her dr. they said NO... not because of a drug interaction, or that it might interfere with her treatment... but because it might skew the results on the clinical trial... and they wouldn't know if it was the drug or the other things that had made her better...
bizarre.
hugs all.
I have a friend with peritoneal cancer... it's rare and mimics ovarian cancer... usually they don't find out what it really is until the ovaries and uterus are removed, and usually this is late stage.. Standard treatment is chemo, debulking surgery. There is no CURE... as in - once you have it it's life long - managed with chemo, and remission periods - if you find the right chemo.
Initially she was at Trillium... a local cancer hospital. When I first asked... stage etc... she said they didn't want to know... (it was stage 4 - her husband said the first dr. told them that whereas - the second said ignore the stage this is what we are going to do.) This being a rare cancer I would have sought treatment in Toronto (40 minute drive as opposed to a 25 minute one) I suggested this but they seemed content. Last August she was declared cancer free (in remission) She had finished treatments in April her scan was August. Late Sept. she began having the same symptoms. Went back in. The tumor was back. Her original treatment was a combo of cisplatin, and taxol. This time the put her on cisplatin only (NOT SURE WHY...) after her second treatment she had a bad reaction to it. So they were going to put her on a newer drug... doxil. Well this is one of the ones with a 7 month waiting list... so they put her on a 1970's drug.. this made her super sick, and all of her hair fell out again. by dec she was not looking good. I suggested again she call PMH (the top CCC in Canada - in Toronto) They did a few more treatments. Scanned her and the tumor had not only grown but spread. The dr. sent her home to die. Told her on his way out, use your pain meds they'll help and you'll need them (he's an ass) I finally said get your but to PMH (and educate yourself and ask questions!!!)... They know their stuff, as rare as it is they have seen this before more than anyone I would imagine, and they had a treatment protocol in place. PLUS, they had a clinical trial. She finally headed down there in february. They told her taxol was the next step, and that she could go back to trillium, or have it at PMH... I told her to stay there... and then they signed her up for the clinical trial...
She's been there for 8 weeks... chemo (taxol) and trial drug weekly... results... %27 reduction in the tumor.
My point - Her original dr was willing to let her die so when you get a diagnosis of cancer, don't hum and haw, don't drag your feet and think that the local hospital is good enough. If you want to give yourself the best chance, do what you can the first time out, go to the best hospital, the best dr., and do what they say. I know there are quite a few people here who've not been treated at a CCC and are doing fine, but that is often dependent on the individual Dr. it's hit or miss. It's scary to think that this other dr. she had has likely done this to other patients... how many have taken his advice and not sought out another option?
Another interesting aside. I suggested, circumen, & vitamin d - one is found readily in food, the other in the great outdoors... I told her to ask her dr. they said NO... not because of a drug interaction, or that it might interfere with her treatment... but because it might skew the results on the clinical trial... and they wouldn't know if it was the drug or the other things that had made her better...
bizarre.
hugs all.