Okay I’m going to say something here which will undoubtedly ruffle feathers. It has to do with tamoxifen and other breast cancer drugs, oncotype scores, and taking yourself off your meds….without discussing it with your care team.
Do I like what tamoxifen has done to my body? Hell no. But I don’t want to die from a breast cancer recurrence either. So I will stay on this as long as my doctors say.
Radiation gave me osteopenia, so after a couple years on tamoxifen and a full hysterectomy I was not a candidate for aromatase inhibitors….because they contribute to bone density loss among other things.
One of my friend’s mothers was a test patient for tamoxifen when it was first being introduced over 30 years ago. She is living proof that the drug works. I don’t believe I’m part of some pharmaceutical conspiracy other then I think the cost of drugs a ridiculous even when you have health insurance that supposed to be good.
I am sure about one thing: there are no easy answers when it comes to breast cancer. But I would rather be alive. So when I see threads of conversation in breast cancer support groups where women essentially musing to take themselves off of their meds, it upsets me greatly. I also have to bite my tongue and resist the urge to say anything most of the time.
Adverse reactions breast cancer meds like tamoxifen, even those ones our friends and family can’t see are very real. Which is why I also get upset when you have ignorant people who have not been through breast cancer, let alone ever taken a breast cancer drug like tamoxifen and they say things like the side effects are psychosomatic, or in layman’s terms made up in our heads. Anyone who says that to you is a truly ignorant person and you should feel free and no uncertain terms to tell them that.
They are as bad as the ones who come to you with the names of several plastic surgeons when you’re barely out of surgery. I had that happen to me and it was very upsetting. I didn’t even know at that point if they had gotten all the cancer out and if I was going to be having radiation treatment or radiation and chemotherapy. I felt crappy and I know these people were trying to help but all they did was make me cry when no one was around.
Trust me, I suffer with the whole self body image worse after breast cancer. I look in the mirror and I have breasts going into different directions because one is only part of a breast at this point. But , I still think I made the right decision when I decided to not have breast reconstruction. I know in my heart of hearts that I am just not a woman destined to have reimagined boobs.
I also wish to remind those who talk about their oncotype scores, especially when they are low. Mine is low – it’s a 10 – but my score and everyone else’s is predicated on the presumption that I am going to have treatment and take breast cancer meds as a preventative.
I know taking these drugs is hard – I’m doing it and I am looking at a potential of 10 years – they will reevaluate me at 5 years which is in a year. But we shouldn’t be playing doctors on ourselves.
So if you need a change of meds or you really can’t tolerate the meds you are on, for the love of God don’t just take yourself off something. Go to your doctor. For example, the different generics of the breast cancer meds affect women differently and it’s not necessarily because of the actual drug it’s things like the binders and inert additives that cause the reactions. I discovered that the when I went from having annoying side effects of tamoxifen to I really felt sick – they had changed my generic, and the formulation is not 100% the same from generic to generic. So needless to say at my local pharmacy there is now a note from my oncologist and my hospital system that I only be given specific generics. I actually wrote about this when it happened someplace on this blog.
My final comment, is that we all have to remember that each cancer is different in each person. Sometimes we see people talking about their reactions to meds, and there is a very good chance it won’t necessarily affect you or affect you in the same way.
I discovered my inner courage fighting this disease, and I urge all of you to remember that you have that steely core within you. Breast-cancer hits the core of our very femininity, no doubt about it. Not trying to downplay it. I just believe that every woman needs to make smart decisions, not necessarily ones based on vanity.