Blog Post
@Temple I wholeheartedly endorse your suggestion. I took part in a webinar on the endocrine therapies. I was asked to supply questions to two eminent doctors. All of them were ignored. My personal experience includes one oncologist laughing about the side effects... While my current oncologist takes my concerns more seriously, no genuine answers are provided. The shrug, literal or metaphoric, is real.
I have not had an easy run with Letrozole side effects, but 16mos in my rage no longer boils (well, occasionally it still does!). Mostly it's burnt itself out and I no longer have the energy to bang my head on the unyielding bluestone wall.
This is where I've landed:
1. The drugs are far from perfect, but at this stage they're the best we've got. I'm gritting my teeth and persisting because I wish to do everything in my power to never have this disease return.
2. I focus my energy on pain management. I've worked through most of the available options, and go with what works for me. This has been trial and error, and the only person who's been remotely interested is my GP. And I'm lucky because she is an excellent one. There needs to be far more support given to women who have trouble with AIs/Tamoxifen. With a drop out rate of 70% at five years, it is utterly mystifying why more isn't done to support women in this phase of treatment.
3. I am taking part in a drug trial for a medication to reduce hot flushes for women who can't take estrogen. I don't care whether I'm on the placebo or the real one. I want to do anything so women don't have to suffer the way I have, and continue to do so.
While I strongly believe that the treatment of women's health has been coralled into a sexist cul de sac, I also believe this is slowly changing. I have met some genuinely committed and caring clinicians and researchers. Our job is to continue to be loudly vocal about the problems with this treatment. The squeaky wheel gets the oil. There's never going to be enough money to fix all the health problems, but as the most commonly diagnosed cancer in Australian women, breast cancer deserves attention by the sheer weight of numbers.
I do understand that the surgeons and oncologists tend to deal mostly with the action of surgeries and active treatments, and to them it must sometimes seem like patients with medication issues are waay down the list of priorities. However I wish the suffering of endocrine therapy patients was taken more seriously. Survivorship is hard enough without the difficult to crippling side effects of an AI/Tamoxifen.
4. You can take two month drug holidays on an AI (do speak to your oncologist first though). I live for those. If I can have a two month break after each 12 months, and my side effects don't get worse (which they currently are, especially in my left arm), I might just make it to the end of the course of treatment.
Hang in there @Temple. A couple of the side effects I had in the first six months did settle down. We're all different. I hope things get easier for you. K xox
I have not had an easy run with Letrozole side effects, but 16mos in my rage no longer boils (well, occasionally it still does!). Mostly it's burnt itself out and I no longer have the energy to bang my head on the unyielding bluestone wall.
This is where I've landed:
1. The drugs are far from perfect, but at this stage they're the best we've got. I'm gritting my teeth and persisting because I wish to do everything in my power to never have this disease return.
2. I focus my energy on pain management. I've worked through most of the available options, and go with what works for me. This has been trial and error, and the only person who's been remotely interested is my GP. And I'm lucky because she is an excellent one. There needs to be far more support given to women who have trouble with AIs/Tamoxifen. With a drop out rate of 70% at five years, it is utterly mystifying why more isn't done to support women in this phase of treatment.
3. I am taking part in a drug trial for a medication to reduce hot flushes for women who can't take estrogen. I don't care whether I'm on the placebo or the real one. I want to do anything so women don't have to suffer the way I have, and continue to do so.
While I strongly believe that the treatment of women's health has been coralled into a sexist cul de sac, I also believe this is slowly changing. I have met some genuinely committed and caring clinicians and researchers. Our job is to continue to be loudly vocal about the problems with this treatment. The squeaky wheel gets the oil. There's never going to be enough money to fix all the health problems, but as the most commonly diagnosed cancer in Australian women, breast cancer deserves attention by the sheer weight of numbers.
I do understand that the surgeons and oncologists tend to deal mostly with the action of surgeries and active treatments, and to them it must sometimes seem like patients with medication issues are waay down the list of priorities. However I wish the suffering of endocrine therapy patients was taken more seriously. Survivorship is hard enough without the difficult to crippling side effects of an AI/Tamoxifen.
4. You can take two month drug holidays on an AI (do speak to your oncologist first though). I live for those. If I can have a two month break after each 12 months, and my side effects don't get worse (which they currently are, especially in my left arm), I might just make it to the end of the course of treatment.
Hang in there @Temple. A couple of the side effects I had in the first six months did settle down. We're all different. I hope things get easier for you. K xox