My story started the day after my 51st birthday at the end of July 2007, when I had my annual mammogram. Because it showed microcalcifications, I had a magnification mammogram, and, based on that, I had biopsies of both breasts. On August 30, I received the diagnosis of ductal carcinoma in situ (DCIS), with possible microinvasion, in my left breast.
After seeing my breast surgeon and doing a lot of research, I decided to have a bilateral mastectomy. My primary concern was minimizing the risk of recurrence — my husband had died five-and-a-half years earlier, so I was the only parent my two teens had. I opted for a mastectomy over a lumpectomy for several reasons: the risk of recurrence was slightly higher with a lumpectomy; I was so small-breasted (one description would be a concave AA) that a lumpectomy would be highly deforming; and I didn't like the idea of radiation. And even though the DCIS was only in my left breast, I opted for a bilateral mastectomy because it had been suggested that I have more tissue removed around the biopsy site in my right breast, which meant that it might end up not looking so great, and because I was concerned about what might occur in that breast in the future.
The assumption on just about everyone's part seems to be that if you have a mastectomy, you'll have reconstruction. My next step was to read up on reconstruction and see a plastic surgeon. The idea of autologous reconstruction (using your own tissue) sat better with me than the idea of implants, but it turned out that I wasn't a candidate for autologous reconstruction — not enough tissue. I don't know that I would have opted for autologous reconstruction even if it had been available to me, since that would have meant more surgery and a more difficult recovery, but as it was, I had only one option if I wanted reconstruction — implants. I just couldn't get comfortable with the idea of having foreign bodies inserted into my body. Further, I thought the whole procedure sounded awful, and I was concerned about the problems that could arise and the need for future replacements. To top it off, I was told that I would end up looking bigger than I was or wanted to be — a good solid A cup would be great, but I didn't want to look obviously larger.
After a friend and I met with the plastic surgeon, we sat down to talk about all that was involved with getting implants and that's when it hit me — there was another option. I could choose not to have reconstruction at all. The more I thought about it, the more that made sense for me.
I started looking for information about not having reconstruction and about prostheses (breast forms), and found that there's a lot more information about having reconstruction than there is about not having reconstruction. Even once I had decided that I would not have reconstruction, I still wished I could talk to women who had made the same decision. I was grateful when I came across this website — not only did I appreciate the helpful information and practical advice, but it was reaffirming to find others who shared my perspective. Eventually, friends were able to put me in touch with a couple of women who had not had reconstruction. They shared their experiences with me and were also able to give me some good suggestions.
Since being widowed, I have found the prospect of dating and intimacy rather daunting, and it did occur to me that having a mastectomy without reconstruction would make it even more daunting. But I made my decision based on what is right for me. Any man I may become involved with will have to accept me just as I am. The scars on my heart and the scars on my chest won't define me, but they will be part of me.
I had my bilateral mastectomy, with a sentinel lymph node biopsy (SLNB) on the left side, on October 23, 2007. I looked at my chest the very next day. I'd seen post-op photos ahead of time, so I wasn't shocked by the incisions (though those photos must have been taken at least a couple months post-op because none of them showed the glorious bruising that I had). One of the women I'd talked to had made a point of encouraging me not to be afraid to look. Besides, since I was going to be the one dealing with my drains, there was no putting it off. I figured that I might as well look at and care for my chest from the beginning. The cancer was gone, and that was what mattered.
I'm fortunate that my pathology report showed no lymph node involvement or invasion, so I didn't need chemo. And even though I was ER and PR positive, because I had both breasts removed, I don't have to take Tamoxifen.
My recovery went well. I'm convinced that it was faster, easier, and less painful than it would have been if I'd had reconstruction. I did have to deal with axillary web syndrome (also called cording), which appeared on my SLNB side about three weeks after my surgery. Between my surgeon's working on the cords and the exercises I've been doing, it's almost gone ten weeks post-op and I've regained my full range of motion.
I was able to get my breast forms four weeks to the day after my surgery, and, silly as it may seem, I was delighted to have them. I felt more confident with them than I had been with the temporary "fluffies" that I'd been wearing since my surgery (those tended to flatten and shift and I was never certain that I had them the same size and shape). This is definitely a learn-as-you-go process. While I liked my first set of breast forms, I've already bought a second set that is better for me. Likewise, I'm learning more about mastectomy bras (and about having regular bras altered to add pockets for the forms) with each visit to a different store. I find that the forms look natural when I'm wearing clothes and that they're comfortable — I'm really not aware of them while I'm wearing them. When I'm exercising, I go without the forms.
I am very comfortable with my decision to have a bilateral mastectomy and with my decision not to have reconstruction. I think it's important that women facing a mastectomy know that reconstruction is not the only option, and I hope to find ways to reach out to other women who are trying to decide what to do. Telling my story here is a first step in that direction.