After being diagnosed with DCIS I went on to have the area removed and the biopsy results revealed I had some invasive cancer too. I have been told that the DCIS is to extensive and the best course of action is a mastectomy. I was in total shock as thought at most I would maybe need more surgery to get better margins. Within an hour of hearing this news, I made the decision to have a bilateral mastectomy. I went to speak to the surgeon about the reconstruction and told him that I had decided I wanted that, and thought I would have a battle on my hands, but he agreed to do this but not at the same time, but a few months later.
Has anyone else come to this decision due to the fear of years of uncertainty, I know I have made the right decision for me.
Hi
I’m the opposite, I was recommended a bilateral mastectomy cos I’ve got invasive bilateral lobular, but as my nodes are clear and I got clear margins after lumpectomies, I’m sticking with the conservative option. I thought I had read enough, but then today had an absolute wobbly thinking have I made the right decision. God only knows. But just wanted to say good luck with your decision, its a hard one.
S
Hi Stargazerlily,
I made a slightly different decision, bilateral mx op was on 8 march.
I had DCIS which was thought to be small, but after the WLE I was told it was extensive high-grade and advised to have mx. I was completely unprepared, although I decided at once to have the op. As they thought they had clear margins and my surgeon was going away for 3 weeks, I knew I had to wait or ask for a different surgeon. I decided to wait, think about it, and do a load of research now I knew what I was dealing with. My mother had bc 19 years earlier (which followed the same path as mine) which had just recurred in the other breast as an aggressive G3, and I had a lot of family history though at over age 45 (I’m 49). I also felt I’d be less worried about going breast free if I wasn’t lop-sided (I was 38C). I do a lot of outdoor stuff and carry big rucksacks etc, and often didn’t wear a bra. The thought of trying to keep a breast form in place wasn’t nice. I’d also read that they can be hot and sweaty. All of the recon options sounded too risky for me in terms of compromise to movement and strength.
I began to think about bilateral, and discussed it with my bcn who said that my consultant is really against it, but to put my argument to him when he returned. I did this, we had a long and interesting conversation and to my surprise he agreed, provided I had at least a couple more days to reconsider.
He didn’t agree that it was justified in terms of risk, but I was also concerned about the largely invisible DCIS I had, and the hospital won’t fund MRI scans for DCIS - that was the only way I would have felt safe with no bilateral mx. He also pointed out that MRI throws up a lot of false +ves, and thus biopsies. I also asked for my scars to be as flat as possible as I was 99% sure I wouldn’t want a recon. He also agreed to this, though he left the fascia and a small amount of skin so that recon would be possible if I changed my mind.
I know other people who’ve been refused, and one who was told to wait a year. My surgeon said he’d agreed to mine because we had a grown up conversation, and because I’d thought it through and researched it. I think having the extra time helped - it enabled me to be sure and calm and well-informed. Also, my surgeon is a very nice man, and listens to his patients so I was lucky in that way.
I feel happy now, and I decided that whatever the results from histology I wouldn’t regret it. It turned out that I had lobular hyperplasia in the healthy breast (not cancer, but a definite risk factor, especially with my hx) so I was doubly happy.
I wish you all the best with it, let us know how you get on.
Hugs, Lynne xx