Being in the majority is cool!

Let me just state that what brought on the topic of this post was my most recent PET Scan.

You spend most of your life thinking you're nestled safely in the majority of all statistics. If I told you that 0.625% of people will spontaneously combust, you're probably not gonna go running for the fire extinguisher. You'd probably wager big that you'd fall into the 99.375% of the people that would be just fine (I'd take those odds!). As a young woman, I had a 0.625% chance of getting breast cancer ("young" is considered to be less than 40). Right before my diagnosis I had been told over and over that it wasn't possibly cancer and that I was too young. The shock of diagnosis hit me, my family, and my friends *that* much harder.

Now I've finished treatment and because of my triple negative breast cancer, there is no further therapy I can do to try to prevent a recurrence. I have had all the odds stacked up against me: my age, the triple negative status, my BRCA gene mutation, and my stage IIIA at diagnosis. So I hit the cancer with everything they've got. The most potent chemo, the most severe surgery, and even a "boost" on top of all the radiation treatments are all that shield me from a recurrence. Now I am pushed into the world of "survivorship" and everywhere I turn I'm faced with frightening statistics. With my super-aggressive type of breast cancer, I'm looking at a 30% chance of developing a recurrence and a 15% chance I won't see my 35th birthday? And these are "good" statistics? Now if I told you that you had a 30% chance of spontaneously combusting, I bet you'd be standing ready with the fire extinguisher, a garden hose, and the fire department's phone number on speed dial.

Now you can start to see some of the anxiety that I, as a survivor, have to live with. Every ache and pain in my body I immediately think is a metastasis (spreading of the breast cancer to other parts of the body). If I have a headache, it's brain mets. If I have a pain in my back, it's bone mets. If I have pain under my expanders (which I should! the tissue has been cut out and fried by radiation) then I think it's a recurrence. So yes, I am very happy to be done with treatment but as long as I'm living under this constant worry then I don't feel "cancer free". (I have been told, however, that with each clean scan the worry lessens.)

Chemo curls

I get a lot of comments as people walk past my desk on my curly hair. Since I can't see the back of my head, I took a picture. I just thought I would share it with you all.



The most frequent question people ask me is "Was your hair this curly before?". First of all, weird that in less than one year's time I have met SO many new people. Secondly, no, my hair was not this curly before. It was somewhere between straight and wavy. If I blow-dried and straightened my hair I could wear it straight (but it was a constant battle against the Florida humidity). If I put product in my hair and used the diffuser, I could wear it wavy-curly.

Would you?

I went to visit my surgeon today, and he mentioned that bi-lateral mastectomies associated with BRCA+ gene mutation was in the news. I didn't know what he meant, so I looked it up and I found this:
http://www.medicalnewstoday.com/articles/200240.php

For women who are BRCA+ (like myself), having a prophylactic, or preventive, mastectomy can reduce their risk for developing breast cancer in the future. For us gene mutants, our risk for developing breast or ovarian cancer is very high compared to the rest of the population. Women with a family history (which I don't have) have begun to be genetically tested for the mutation, but then when they find out their results they're faced with the question of: what do I do now?

In my support group last week we were asked: If you could rewind time and have a prophylactic mastecomy, would you? My answer was a definitive YES! That would have made things extremely easy on me. In one surgery I probably could have had the mastectomy and the reconstruction. I would not have to go through chemo. I would not have to go through radiation. I would not have to deal with the long term side effects of treatment like anxiety, chemo brain, lymphedema, and possible infertility. I would have been done with it and moved on without skipping a beat. Unfortunately, I was never given a warning that this lurked in the future for me. Without a family history, there's not much reason to get BRCA tested. Even if I had the test and came up positive, I'm sure pre-cancer me would never think that something as unimaginable as cancer could possibly happen to me. I would have taken my chances and not elected for the surgery, betting that I'd be just fine.

It's like buying the warranty for your car... you don't need that, what could possibly go wrong?