Elizabeth: I was asked about family history- A straightforward question but one that I couldn't answer as I was adopted as a baby.
Elizabeth (not her real name) found out about her faulty BRCA gene after she was diagnosed with breast cancer. As she was adopted, she had little information about her family history. She tells us her story below:
Image is stock photography to anonymise storyteller.
My name is Elizabeth and I am in my 50s. I am using a pseudonym to protect the identity of family members.
A couple of years ago a routine mammogram led to further tests. This led to a diagnosis of DCIS (Ductal carcinoma in situ, a non-invasive, early form of breast cancer that affects the milk ducts) which I was told may or may not develop into invasive cancer. When faced with the option of monitoring or lumpectomy, I opted for a lumpectomy. No further treatment was required but I was told I would be offered yearly mammograms to keep an eye on things.
A year later my mammogram showed all was well with the breast that had been operated on, but an “area of concern” on my other breast. This led to further investigations and a diagnosis of invasive breast cancer. The cancer was a very small stage 1 triple negative cancer, so the plan was for lumpectomy, followed by chemotherapy. However, it was explained to me that it is unusual to have both breasts affected.
I was asked about family history- A straightforward question but one that I couldn't answer as I was adopted as a baby.
It was agreed that I should undergo genetic testing and, 3 days before my lumpectomy was scheduled, I received the results which showed I have a BRCA 2 mutation. The original treatment plan went ahead to remove the existing cancer and minimise the chance of it coming back, while in parallel I started the process of deciding what to do about my risk of further primary cancers.
I decided upon a risk reducing mastectomy with immediate DIEP reconstruction, a type of reconstruction where skin and tissue from your tummy is used to build your new breasts. This took place six months after I completed chemotherapy and it went well.
I will soon be having my ovaries and fallopian tubes removed to reduce my risk of ovarian cancer, which is also raised with the BRCA2 mutation. This surgery is called a bilateral salpingo-oophorectomy (BSO) and will reduce my risk of ovarian cancer by 95%.
My grown-up children are awaiting testing to see if they have inherited the BRCA2 mutation. It is hard to think they may be at risk but it is a relief to know they can be tested now and take action to reduce their risk if they do test positive.
Meanwhile, I have done a DNA test and am trying to track down biological relatives who may unknowingly be at risk. I do feel a sense of responsibility to try to find them to alert them to possible risk and provide them with my medical information to allow them to get tested and to take risk-reducing action if required. The genetics department did say they have a team who can assist in tracing relatives, however they do need certain information, such as a relative’s name, to start that process.
I am aware that prior knowledge of family history may have led to me being tested sooner, before I ever developed breast cancer. However, many adoptees have little or no medical history to go on. This undoubtedly means that it is far harder to evaluate our risk unless we become eligible for genetic testing, for example, by developing breast cancer in both breasts or developing breast/ovarian cancer at a young age. I would hope that in the future testing would routinely be offered to adoptees in order that cancer can be prevented.
