Monday, April 23, 2012

Surviving Triple-Negative Breast Cancer: Hope, Treatment, and Recovery

The title is a book by Pat Prijatel, a TNBC survivor and journalism professor, that will be out in print this fall. I was honored to review the rough draft and know it is a much needed book, especially for the newly diagnosed. Before it comes out, Pat can be accessed on Facebook, Twitter and on her excellent blog, Positives about Negatives ( Over the past 5 years, she has carefully scanned the literature for any news about this disease. She has made me lazy. Why should I search  when she has done all the work?

Newly diagnosed breast cancer patients are urged to obtain Susan Love's Breast Cancer Book, which I promptly did. But in 2008 when I was diagnosed, there was not one word about TNBC (though the latest edition now discusses it). All sorts of info and epidemiology on estrogen positive BC, which mostly does not pertain to TNBC. There was some mention of the more dire prognosis of estrogen negative BC.

So I scanned the internet for news and research. The popular press had plenty to say: deadly, dismal odds of survival, a new deadly disease (nothing new about it other than the name) but one has to take what they say with a grain of salt. They have to grab your attention with those scary words. On to the more scientific literature which is supposed to be  devoid of emotion. Still saw the same scary words. Bleak, deadly, poor chance of survival, aggressive. What exactly did they mean by these terms? These articles really scared and depressed me. I honestly felt that my remaining time on earth would be short and painful.

Well all is relative. Relative to ER+ cancer, TNBC is more aggressive and deadly. But not by that much. Most people do survive TNBC. And there are some advantages to having it vs the ER+BC (in case you are the position to select it at the cancer store). No taking tamoxifen and those aromatase inhibitors for 5 years (and now they are thinking that perhaps the period should be longer) Not only are they very expensive (and co-pays keep getting larger) but chock full of side effects; painful ones.

It is true that if TNBC comes back, it does sooner than later, but if you can survive 5 years, you are home-free whereas the ER+ folks are still at risk for a recurrence10-15 years after the primary occurrence. At 3.5 years out, I think my chances are about even now with the ER+ ladies and are constantly dropping.

Fortunately it did not take me long to find Pat and discuss via the internet our joint concerns. But I would have very much appreciated this book-to-be way back when. When it comes out, I will urge my treatment center library to have copies along with the various cancer support agencies.

Cancer is becoming an increasing smaller part of my life almost to the point of just an occasional thought. It has been 3 years since my treatment ended. I am now to be checked out twice a year versus every 3 months ( I did skip a lot of those as the visits are not covered by insurance and I learned very little from them). But it does not take much to bring it back front and center. For instance, I have a minor pain in my rib, a common site for bone mets. Pat recently had an online discussion about lingering pain and 4/5 women said they had the exact same symptoms as me.


Holly said...

I like your pretty new look. Have you checked out the new blogspot version that's coming up soon and that we won't have a choice about. I hate it...

Holly said...

with this new format which i can't seem to get rid of...i don't know how to post your comment...frustrating!

Sue in Italia/In the Land Of Cancer said...

Hi Holly
I haven't seen the new format yet. But it looks like you were able to post.


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