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Sep 25, 2019 10:15AM
I have had mammograms and US scans since I turned 40. I was told I had dense breasts and had to do them yearly. In 2013 I felt a small lump. I went straight to my doctor who said it was moveable and probably not BC but sent me for mammogram and ultra sound scan. The technician who scanned me 'scared' me by saying it didn't look like BC but you only ever know with a biopsy. I dismissed her as 'scaremongering' especially when my Dr said I was fine.
In June 2014, I decided I wanted to try HRT because I had no energy and sex was becoming painful. My gynaecologist did breast exam but then sent me to breast specialist for an all clear before she would prescribe. Breast specialist did another mammo and US, said he saw something that looked like a fibroid (in keeping with all my previous scans - I had 3 small 'fibroids'), but I could take the HRT and we would do a biopsy in 3 months just in case. I came back for the biopsy September 2014 but was scanned and mammo'd again instead. Dr said nothing had changed since last scan so no need to biopsy. This was despite the fact that my breasts had gone up by 2 sizes. The change in breast size did not concern me, as my breasts always went up a size when I took the pill (birth control pill).
Roll on to end of December 2014, I notice my left breast is really bigger than my right (it was always slightly bigger). I also notice my nipple has flattened. I went straight to gynaecologist in Jan 2015, as I was most comfortable with that Dr. I nearly walked out of the appointment because I waited over an hour to see her and my sister was waiting for me in the car. Luckily my sister said that she had already been there for ages, so I might as well stay. My gynaecologist didn't even bother to do my usual exam. She phoned the breast specialist and made an appointment for me the next day. She told me to stop the HRT pill immediately.
Breast specialist was ill, so I saw his assistant (also a Dr). She did scan, but said she couldn't see anything. I asked her if she couldn't see anything, then what was causing my left breast to be so huge and hard and the nipple to be flat. No answer. Did another mammogram and US, negative for anything.
February 2014 the breast specialist calls me in, he is recovered from illness and wants to see me. (I think my gynaecologist called him). I go in and he admits the breast looks odd although he doesn't see anything on the US. He suggests I come back and biopsy. I ask if I can do it right then. He agrees and after a short time, I get a biopsy done. Two days later he calls me in with results. BC. Four days later (due to my demands) I have a double mastectomy. Three weeks later I get the pathology back and its ILC (hence no one seeing a large mass) and it's in 20 nodes.
I am pretty sure I had LCIS (because I could never get milk out of my left breast properly when I was breastfeeding), and it developed into ILC in 2013 (when I felt the lump). I literally fed the tumour with the HRT. I am typical of HRT caused breast cancer: ILC pr-.
I can't say that the Drs did not do all the 'right things', they certainly did. But I am outraged that a breast cancer specialist wouldn't know that ILC doesn't show up as a hard lump and should have biopsied me the first time. I would still have had BC but maybe not 20 positive nodes. And if someone ANYONE (all that literature about getting a mammogram) had ever told me that mammograms are not infallible (I thought there were 100%), I would not have dismissed the Ultrasound technician and I would have had a biopsy in 2013.
3/7/2015, ILC, Left, 6cm+, Stage IIIC, Grade 2, 20/24 nodes, ER+/PR-, HER2-
3/7/2015 Lymph node removal: Underarm/Axillary; Mastectomy: Left; Prophylactic mastectomy: Right
4/13/2015 AC + T (Taxotere)
9/14/2015 Arimidex (anastrozole), Femara (letrozole)
10/1/2015 Whole-breast: Breast, Lymph nodes