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Apr 27, 2021 04:12PM
This is just my story, I am not telling it to scare anyone. Part of me wants to warn you, and part of me wants to just vent about it :)
I was considered very high risk and only had ultrasounds every 6 months for about 5 years. No one ever talked to me about MRIs, taking preventative Tamoxifen, etc. Then, in 2013 I found a rather large lump that turned out to be benign, but had it removed because it was painful. The doctor that worked in the breast clinic would constantly tell me that I was a "frequent flyer" and one of the youngest patients to come in regularly. He also believed, and shared with me often that he believed there were too many biopsies done because most of them turn out to be nothing. (That is good thought, right?!) Because of his personal beliefs on this he never told me there were any major changes in my breast, even though there were 4 separate lumps he was watching but had labeled "probably benign." He never sent me for genetic testing even though every woman on the maternal side of my family has died of breast or ovarian cancer. He never once talked to me that my breasts were some of the most dense breasts he has encountered. I learned this from requesting my records a while after.
In 2018 I was diagnosed with actual breast cancer, in 4 different areas of the same breast. Those 4 areas had been on his watch list for 3 years. I cannot fully express what I wanted to do about it once I realized that. It was bad enough I had cancer even though every 6 months I had tried to scan for it, so I would be able to detect anything super early, but that it was >2.5cm and there were 4 lumps total!!!
I will have to say, if they had offered me a prophylactic mastectomy I probably would not have had it. I would have taken Tamoxifen had it been offered. And I would have wanted, and even requested an MRI of my breasts but it never happened.
It seems obvious now that I should have had a second opinion. But I have a different chronic illness and between that and trying to work full time as well as adding scans every 6 months that I had to take off work, I was just too stressed to consider that my doctors were not trying their very best. I also tried to sue the physician -- not for money, but for an apology note -- and the judge refused to allow the case.
Saying all of this I will also add, that most people will NOT get cancer. That's the good news!!! And reading all of the posts here it sounds like everyone has a pretty good handle on watching over their situation. My personal motto is to not worry until I have something to worry about, but you all sound like you are being smart and vigilant about your care. It can be stressful always having this "maybe" hanging over your head.
Thanks for reading, I guess I have been holding on to that for a while and needed to say it aloud to people that might understand how frustrating it was.