why do I know more than my doctors about AI side effects

ohilly
ohilly Member Posts: 441
edited March 2014 in Breast Cancer #1
I find it disturbing that I seem to know more than my doctors about the side effects of aromatase inhibitors. Most of you know my story: that my hair was growing back thin for months and months after chemo. Finally I went to a dermatologist who told me I had underlying female pattern baldness that was 'unmasked' or 'accelerated' by the chemo. Well, funny how no one in my family has baldness and I never had a problem with my hair in my life prior to chemo. Thinning hair is listed under 'rare' side effects on the Femara site, but after doing extensive research on my own (hundreds of reports of hair thinning online by other survivors and a report saying the same done by Breast Cancer Action)I am convinced that the Femara is responsible for the hair thinning and also my severe insomnia. I discussed all this with my oncologist (a doctor with a national reputation at the University of Chicago) and all he could say is that he has never seen hair thinning with Femara in his patients, that he didn't know about this subject, and he referred me to a dermatologist specializing in hair loss.

I am moving on from the hair thing, but my point is: why do I know more than my doctors about this side effect? All my research lead me to ask more questions: what do we really know about the long-term side effects of these drugs, and what happens after we stop taking them (some members of this board answered the latter question and also answered it more completely than any of my doctors!). I don't want to sound like I'm complaining, but I guess I am. Why don't the doctors tell you this stuff? Has anyone else had a similar lack of information from their doctors?

Don't get me wrong: I am glad Femara exists and realize hair thinning is a small price to pay for a drug that will combat recurrence and hopefully extend my life. But it would have helped me adjust if I had only had this information before from my doctors and not had to find it on my own. I still would be taking Femara no matter what, but at least I would have known what to expect.

Hugs,

Ohilly

Comments

  • Eil4186
    Eil4186 Member Posts: 949
    #2
    Hi Ohilly, you raise a good
    Hi Ohilly, you raise a good point. Doctors just don't seem to really spend much time talking about side effects. My onc. gave me a sheet with possible side effects for each chemo, the tamoxifen and when we thought I was menopausal(found out I'm not) he did so for an A.I. not sure but it might have been femara. I think they consider the side effects to be pretty mild and rare so they probably have the view that the good way outweighs the bad.

    I can totally understand your feeling about the benefit of being prepared ahead of time so that when the side effects do come you are not worried or anxious. I do know though as I'm sure you do as well, femara is just one of a few A.I.s that you could try. Perhaps your doc could switch you to one of the others and see if the thinning and insomnia lessons or goes away.

    I haven't slept well since around when my chemo was done so I know how that can negatively impact your daily quality of life.
  • ohilly
    ohilly Member Posts: 441
    #3
    other AIs
    thanks for replying, eileen. I did my own research (again, my onc didn't have much to say about this) about the side effect of hair thinning with other AIs, and it seems that the others cause this, too. I decided what is the point of switching if there is no evidence that one AI is better about this particular side effect than others, and could even make it worse! I also realized I should not be basing my treatment decisions on my hair. So for now I am stuck with the thin hair, but at least am more at peace knowing what causes it.

    As I said in my previous post, the one thing that makes me mad is that no doctor told me about this.

    Ohilly

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