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Sep 13, 2016 12:29PM
Sep 13, 2016 12:37PM
Mine is a rather convoluted story, because I didn't do things the way we're 'supposed to'. I had a mammogram back in about 2006 or 07 that when the tech tightened the plates down, it felt like she had me twisted and it hurt. I told her, and she told me to just breathe through it and it wouldn't take long. I had only recently stopped nursing my last child, and ended up with a mastitis in that spot shortly after the mammogram (which was clear), and every 18-20 months after for 3 rounds of mastitis total. About that time I started seeing articles about the overdiagnosis due to mammogram, and what the cumulative effect on the breast might be of the radiation, and just decided I wasn't doing them any more. Thermography was beginning to be talked about, but it wasn't available in my area yet.
In 2009 I was diagnosed with celiac disease. The only change I made to my diet was eliminating gluten, and I lost 30+ pounds in about 5 months. As all that fat and inflammation began to dissipate, I started feeling structures that I hadn't noticed before, like ribs and bones that had been long buried. About that time I noticed a lump in my right breast. Of course I immediately thought about making an appointment with my doctor and with a thermographer, but I still couldn't find a thermographer in my state. My husband was about to have a job change, so I delayed my doctor's appointment until the change was completed to avoid 'preexisting condition' issues. The job change took longer than expected and by the time he was settled I'd realized this lump got irritable and inflamed around the time of my period, then settled back down afterward. My sister has fibroids in her breasts and so I just assumed that's what this was and chose to watch and wait. Nothing much changed after that, and about 2012-13 I finally hit menopause. The lump seemed to settle down and didn't do anything any more, and shortly after that my breast kind of shriveled up and my nipple inverted, and it's been that way ever since.
In June or July of 2015 I noticed what appeared to be a hard lymph node in my left armpit toward the front. I had recently banged that area on the corner of a cabinet twice pretty hard, and although I hadn't seen a bruise it was pretty sore for a while. I thought the lump was just the lymph node dealing with whatever injury the bump had caused and again chose to watch and wait. Over the next year, the lump seemed to inflame and grow a bit whenever I ate something that caused me to be inflamed (accidental gluten cross contamination usually). I tried to keep my diet really safe, but sometimes you have to eat out when you're away from home and it's a crap shoot whenever someone else is cooking for you. About March or April of this year the lump seemed to change. The skin over it turned dark and another area across the top of my breast seemed to be an extension of the lump. I scheduled a thermography (finally there was a choice a couple of hours from home). The thermography showed 'hot spots' on both sides although the one on the right seemed fully encapsulated and inactive. The left side was very ugly, with heat wrapping around my side toward the back and into my neck. She said it looked like it was 'all in the lymph' which seemed to track with what I knew of the way the lump started and felt to me. By that time there was the original lump and a second one that seemed to be attached to it that were in the area of the dark skin, and in the normal skin at the top of my breast/chest area had several soft, squishy lumps. It continued to grow and become more inflamed as I scheduled and waited for doctors' appointments. First with my primary care doc, then a general surgeon he referred me to. Because that surgeon felt that my condition was beyond the scope of his expertise (and he was a jerk to boot), he referred me to a breast surgeon that was out of my network. I went shopping in my insurance company's list of doctors and found one in my network and she was the perfect doctor for me. She did punch biopsies that showed that there was cancer in both breasts, then core biopsies that confirmed that. The pathology after my BMX shows the original lump from 7 years ago was 60mm ILC ER/PR+, the nipple area was 14mm IDC ER/PR+, and 1/27 lymph nodes had a micromet. In my left breast I had IDC 180mm (no, that's not a typo) with a separate small spot 10mm and 15/26 lymph nodes were positive, the largest of which was 30mm with extranodal extension, and that side had TNBC.
My insurance company denied a PET scan, so my doctor ordered a bone scan and CTs of chest, abdomen, and pelvis. The report said all were clear, but when I went for a second opinion about treatment, the radiology oncologist noticed my left hilar lymph node was enlarged. They were able to get the PET scan approved based on the new information and the PET showed inflammation in that node as well as a paratracheal lymph node and another mediastinal lymph node. This was all 6 weeks after BMX, so they did a biopsy to rule out postsurgical inflammation in the hilar node, which was the largest (about 3/4"). That was also positive for cancer cells, so they bumped my stage up to IV (it was IIIC originally), and started me on Xeloda. I've just finished my first week of treatment with minimal side effects, and go back in mid-October for a new set of CTs to see if it's being effective.
I do have a family history of breast cancer, my grandmother and great grandmother on my dad's side both died of breast cancer, but I did genetic testing for 8 different mutations including BRCA1&2 and all were negative, so if there's a genetic link it hasn't been identified yet.
7/11/2016, ILC, Right, 6cm+, Stage IIB, Grade 1, 1/27 nodes, ER+/PR+, HER2-
7/11/2016, IDC, Right, 1cm, Stage IIB, Grade 1, 1/27 nodes, ER+/PR+, HER2-
7/11/2016, IDC, Left, 6cm+, Stage IIIC, Grade 3, 15/32 nodes, ER-/PR-, HER2-
9/16/2016 Xeloda (capecitabine)