Eileen - DCIS ductal carcinoma in situ

Age at interview: 62

Age at diagnosis: 60

Brief Outline:

Eileen was diagnosed with DCIS in 2002 and had a mastectomy. Afterwards, she questioned the value of breast screening and chooses not to have routine mammograms.

Background:

Eileen is a retired writer and single. Ethnic background / nationality: White British.

For more clips from this interview click here.

Eileen was extremely worried about having lymph nodes removed and wondered why it was necessary...

 At some point, I can't recall exactly when, in this frantic time, it may have been after I had the second opinion, I then wrote to my surgeon and faxed him the letter with some more questions that I had. By then it was why he was proposing to take lymph nodes away when DCIS was all about non-invasive cancer. There might be invasive cancer but they would find that out after I'd had the surgery and wouldn't it be better to just remove the tissue and only attack my lymph nodes if they discovered there was invasive cancer after I'd had my mastectomy. And so these were the kind of questions I had. So I faxed him this letter and I put on the top my email address. I didn't actually say I'd like to do this by email, but I thought at least I'll show I've got an email address, and he faxed me back the same day a reply, a good reply to my letter and actually said, "If you would like to communicate with me by email I'm very happy to do so", which was a thrill, an absolute thrill.

 

And from then on my relationship with my surgeon and all these problems about information went into a different gear. We weren't over all the problems, but I had numerous exchanges with the surgeon, and he was so quick at responding. He would look at his emails between surgery operations as far as I could see. And he was extremely good, and bit by bit I got through some of my questions. But it was not without its trauma, because a week before the surgery I still had some important questions, which I never got to the bottom of, about the lymph nodes, and that was what - I was far more terrified about the surgery on my lymph nodes than I was about losing my breast. And that was because, although I didn't want to lose my breast, it wasn't going to interfere with the rest of my body. Taking away lymph nodes was actually going to interfere significantly with my immune system, and I'd read all these dreadful things about the possibility of lymphoedema, and what's the point of doing this if it's not actually essential?