HIPAA Laws Not Applicable to the TSA

Dr. Shambaugh, Me, & Paula :)

I have to start by saying that someone I know, a co-worker...(ok, it was Rick), told me a while back that he wasn't reading my blog because there weren't enough pictures and it was too long!  So that's why you have been seeing a lot of photos in my entries.   As for the length of my posts....I'm wordy- what can I say.

Most of you probably saw my Facebook post that my Oncotype DX testing came back. This test was launched in the United States in 2004.  It is a diagnostic test that helps breast and colon cancer patients and their doctors determine whether chemotherapy should be included in their treatment plan and also indicates how likely the cancer is to return in the future.  The criteria for breast cancer patients to use this test is that the cancer is early-stage and estrogen receptor positive, both of which applied to me.  A sample of the tumor is sent to the company that developed this test, Genomic Health. It looks at a group of 21 genes within a woman’s tumor sample—16 cancer genes and 5 control genes—to see how they are expressed, or how active they are. The results of the test are reported as a quantitative Recurrence Score^® result, which is a score between 0 and 100 that correlates with the likelihood of having the cancer return, and the likelihood that the patient will benefit from adding chemotherapy to hormonal therapy. 

Dr. Agerwaal (my second-opinion Oncologist) explained to me that in the clinical trials that have been done, it was determined that the women who score in the low range typically derive no benefit to chemotherapy.  On the other hand, women in the high end of the scale received great benefit from chemo.  However, Dr. Agerwaal cautioned me that the clinical trials are only now wrapping up on the women who score in the middle, and that there isn't sufficient data to see where these women fit in the picture.  SHE recommended that if I were to score in the middle range that chemo would be my best option.

A week later, my first Oncologist called me to tell me that I scored a 5!  She said that they hardly ever see a score that low.  I'm thinking I scored a zero and they are just covering their asses!  This piece of great news was such a relief.  Having been told early on by my surgeon that I would most likely need chemo, I had prepared myself for a long summer and fall.  What a blessing that this technology and testing is around for women like me who even 10 years ago would have been automatically given chemo unnecessarily.

My friend, Lori & I at Oak Mountain Winery in Temecula, CA

Kourtney update:  I saw Dr. S (pictured above!) and told him that I wouldn't be in the following week for my fill-in because I would be in Los Angeles.  And he was going to be out the following week, so I convinced him to add 100cc's to my expander instead of the usual 50!!  For those of you who regularly read my blog, you know this is a huge deal....that I could talk Dr. S in to deviating from HIS timeline. I'm so proud of my persuasive ways.  I will say...adding 100 cc's was painful but there was no way I was going to show any discomfort or he would have stopped.  My appointment was two weeks ago and it is still painful.  I should only need 50cc's more added and I'll be at my desired size. I'm dreading the 4th surgery in a year's time, but there will be follow-up procedures (fat-grafting, nipples) that need to be performed yet, and I really need all of this done by year's end for insurance purposes. 

Speaking of my expander....on my way back from LA, the TSA stopped me after I went through the machine at security at LAX.  The TSA agent asked (very loudly), "what is in your bra?"  Now, I'm not shy and I'm obviously open about my breast cancer, but did the whole line of travellers grabbing their belongings out of their containers really need to hear my business??  I told her that it was a surgically-placed tissue expander and that it is used for reconstruction after a mastectomy.  She then told me that she needed to inspect me and without offering me a "privacy area" quickly "felt me up" on my right side and also checked my hands for residue! Nice!  I've flown about 4 or 5 times with an expander and never had an issue.  I can't wait to tell Dr. S, because early-on I had asked him about this, and he said he had never heard of anyone having an issue.  Leave it to me to be the first!!

To leave me feedback, comments, opinions, or love, email me at amymariesmith93@gmail.com .  You can try the comment box but it is still a little quirky.