This week

crossposted from http:/lynkelley.wordpress.com

3rd Taxol/doc appt.

Today was my 3rd Taxol treatment and doc appt.  We spent alot of time talking about the paperwork given to me during the BRCA2 test, including my official pathology and history report typed up by the doctors.  Interesting stuff.  I have a story to tell you about something I learned, but tired right now will get to it tomorrow.  I don’t really know if it’s good news, but Dr. Webster said it is possible to have both the mastectomies and the hysterectomy at the same time.  With 2 different doctors of course, but she didn’t see a problem with it.  I told her what the nurse said about the risk of infection, and she said they have done it and the risk is only minimally higher, that she would rather I get my ovaries out asap.  So it’s good it’s not 2 surgeries.  I will meet with the breast surgeon soon, and I suppose the hysterectomy doctor too.  My counts were a little bit low again, and I have to do 2 Neupogen shots.  I really dislike them but at least it’s not 4 like last time.  Dr. Webster and I talked briefly about the IBC Vaccine, that she is in contact with Dr. Salazar in Seattle- who referred me to Dr. Webster- and is communicating about the vaccine to see if I am a candidate.  She said she will definitely send me up there if I am, but it won’t be until after my treatments are done.  In a previous email from Dr. Salazar to me, she said that because I’m Her2 positive, I am a candidate.

Chemo was fine, nothing eventful except hubby and I got to visit for an hour with Sharon from www.breastfriends.com .  It’s always lovely chatting with her, but it was extra fun because dh hadn’t met her before and it turns out they have alot in common.  I also got to briefly meet Becky, Sharon’s partner and bfriends co-founder.

My Gene Test results

I was tested for the BRCA1 &2 several weeks ago via my oncologist who ordered the test .  IBC is not really known to being linked to either of them, but I have a strong family history of cancer and female cancer especially.  The doctor who oversaw the test was surprised herself, because I tested positive for the BRCA2 gene mutation.  This means that my chances- besides the IBC now- of getting ovarian/uteran/regular breast cancer in the future are higher than normal.  The bilateral on my right is no longer my choice, it is recommended- which I guess is good because insurance will pay for it.  Also recommended is a full hysterectomy.  I was really really surprised by this last part, and have not adjusted to what it means.  I guess they normally recommend just ovaries removed, but with my family history, the gene mutation, and the fact that I have IBC plus have had some suspicious paps in the past she wrote down hysterectomy and my oncologist agrees with the recommendation.  I said to someone else that with my thyroid surgery last year due to a cancer scare, both of my breasts about to be removed, and now my reproductive parts -that I’m starting to feel like the guy in the Operation game. 

I will do it all, especially since IBC has such a high recurrance rate, but at this moment I’m not feeling very great about it. 

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2 Responses to This week

  1. imstell says:

    Lyn,
    I, too, am BRCA 2 positive, as is my mother. She did not have IBC, just the “garden variety” BC, diagnosed about 6 months after I was. My torso looks like a patchwork quilt these days from all my surgeries. But I’m still around 3 years later to look at those scars so I’ll consider that a fair trade off.

    I wish you as well. 😉

  2. Glad to hear that your insurance is willing to cover it!!

    My private insurance would not cover a prophylactic mastectomy/reconstruction, even though it was recommended to me as well (also for genetic reasons).

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