I’m too positive to be negative

Nothing ever works when your cancer is hormone receptor negative (HR-). At least it seems that way sometimes. For you cancer newbies out there, please don’t take that literally.

I’ve become something of a cancer-research junkie since I’ve stopped treatment. I studiously avoided any research, internet or otherwise, related to my cancer while undergoing treatment. Numbers are not my friends. Well, they are – sort of. I do feel quite comfortable with them in medical settings (which makes my inablility to do algebra all the more puzzling). For instance, my focal point during labor was the contraction monitor. Forget all that intangible, relaxing beach imagery nonsence and give me a cold, hard fact I can sink my teeth into any day of the week. Anyway… somehow I knew just enough about Inflammatory Breast Cancer to realize that I would obsesses and focus on the bigger numbers in the statistics (that of the 90% variety) instead of the smaller, happier ones. So I avoided Dr. Google religiously. Once I was all finished, however, all bets were off.

So now I studiously watch my news ticker for the latest and greatest in breast cancer research and IBC breakthroughs (of which there is precious little). Yet in my internet travels, linkedy link by linkedy link, I have noticed something that may not be as glaringly obvious to other BC patients/survivors as it is to me. All the new breakthroughs in breast cancer research only work on receptor positive cancers.

This makes me angry. I’m not quite sure at whom. I feel like I’m being descriminated against. I joke, but only a little. Tamoxifen doesn’t work on Triple Negative Breast Cancers, neither do any of the other proactive drugs. Why is IBC not only the rarest of breast cancers but also more likely to be triple negative?

Why, oh why, am I so special??? Can’t I ever just do things like everyone else?????

This is crossposted at I Can’t Complain Any More Than Usual

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8 Responses to I’m too positive to be negative

  1. I am also an “interesting” patient.

    I wish I was boring!

    Oh for those days, when the oncologist didn’t really have time for me, because he had serious patients to deal with…

  2. imstell says:

    Rivka – I was just explaining to my son (as we sat in the ER waiting, and waiting and waiting with only a bad case of poison oak all over his boy parts) that it is much better to be the least-sick person and the last one seen in an ER than to be the first one seen and the most-sick.

    Also, while I truly enjoy the perks of being on a doctor’s A-List (calls returned immediately, phoned in Rx instead of dragging my sick butt in to the office, being worked in at a moments notice) what I had to do to get there really bites!

  3. justenjoyhim says:

    Well, that truly sucks, Stella. I’d be angry too if I were you. I mean, I’m annoyed enough that I have IBC, but to have it with those other things involved. Just not fair!

  4. Sarah S. says:

    Stella I am triple negative too. There are not too many of us out there. You are a bit MORE special than me though with IBC. I just have regular ductal breast cancer. It seems like there is not as much out there for us triple negatives. We are only 15% of all breast cancer patients. UG. you are right all the new reasearch out there is for receptor positive cancers.

  5. That really does such Stella, I would feel like you do too, I know I would, it isn’t fair at all. Wish I could say something to cheer you up but there’s nothin’ cheery about these facts is there? All I can say is I wish you all the very best of luck, love and healing, it is definitely interesting post and a fact I wasn’t aware of, perhaps making more people aware could be a start. Do you belong to any forums or support groups on line that you could do a post like this on and start a discussion about. Just an idea. Take care J x

  6. Jenster says:

    Back in the day when all I knew was I had breast cancer and that was it I was shocked when my oncologist told me, “Oh! You’re highly estrogen positive. That’s great!” At the time I thought she was nuts, but eventually learned why she said that. I’m sorry for all you trip. negs.

  7. throwslikeagirl74 says:

    Breast Cancer Sucks. I’m not sure I’ll every be one of those people who talks about all the “gifts” it gave me.

  8. jillaldrich says:

    Like you, I’m a researcher. I read everything I could about my cancer, then I stopped. I read enough to not miss some critical piece that would have dire consequences later down the road if omitted or done “wrong.” Cancer blows, for sure, and you have every right to be pissed off. Makes total sense.

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