Hi
I was dx in 2007. ILC left breast. Had WLE then mast as did not get clear margins.
In July 2009, after 18 months of counselling, I opted to have prophylactic mastectomy of the left breast.
My reasoning for this was first and foremost my distrust of the screening methods.
I presented in 2005 with a small thickening in the right breast. mammogram negative. Nothing seen on scan apart from a small cyst adjacent to the thickening. They (radiologists) convinced me that there was no thickening and that what I could feel was the cyst. Said cyst aspirated and results negative. Was sent away and told not to worry.
2007 said thickening felt bigger but didnt worry too much as “just a cyst”. Delayed going to the clinic until one morning it seemed to have grown to the size of half a boiled egg. Rushed to the clinic.
Mammogram negative
USS showed thickened area so core biopsy done. Radiologist told me that she was 80 - 90% certain it was normal thickened breast tissue. Imagine my surprise when 2 weeks later they told me it was cancer!!
At the time of dx they (Dr and BC nurse) told me “it’s very small 1.3cm” - “It’s a very good prognosis” - “unlikley to need chemo” blah blah blah.
Had WLE tumour actually 3.5 cm ( 3 times bigger than uss said) close to skin and chest wall - Had mastectomy, chemo, Tamoxifen and now on Arimidex.
Was told that Lobular cancer carriers a higher risk of cancer in the remaining breast but that oestrogen inhibitors (Tam & Arim) would protect the remaining breast.
Was offered follow up (annual mammogram) which I had but was not reassured at all.
Second reason
I was adopted at the age of 6 weeks. I do not know my family history. Was told that this was not really important as only 5 -6% of all breast cancer patients carry the BRCA gene. Was told that it wouldnt be helpful to test me for it.
This said, my friend and colleague was advised to have bilateral mastectomies and surgical removal of ovaries following her diagnosis, as she had two family members on her mothers side who had had BC. This was despite the fact that they did not identify the BRCA gene on genetic screening.
I was at a loss to understand how they did not think it very important to know my family history. I felt at a distinct disadvantage.
Also my mother (not birth mother) died of breast cancer 28 years ago. She was 48 years old and had been neglected by the GP’s who basically labeled her as neurotic and only saw fit to refer her to a specialist when her breast practically turned itself inside out. Within 4 months of diagnosis she had a dreadful fungating breast carcinoma. I miss her terribly every day.
My prophylactic MX showed some benign changes but no malignancy. Still, I do not and will not regret this decision. My surgeon was supportive as he knew that it was not a knee jerk reaction. I could not live with the anxiety associated with that breast and dreaded showering in the morning. I have recently had reconstruction and am delighted with results.
It’s a controversial step and most breast surgeons are advocates of breast conservation. I had 18 months of counselling in order for me to sort my head out and understand that this decision was the right one for me. The clinical psychologist agreed that my fears and anxieties were both valid and rational.
It’s worth asking for a referral to counselling services. It really does help you to sort out and make sense of the thoughts flying through your head. Some women will become less fearful given time and will decide against further surgery. For others that fear does not go away.
Wishing you all good things
Monkey Girlx