Dear Sister,

I made the choice for prophylactic bilateral mastectomy not long ago. While I was going through that decision process, I had trouble finding resources to help me, both online and in my community. I want to share with you what my process was, in the hopes that it might help you in your time of decision.

Getting the Test

I was being treated for ovarian cancer, and because it has strong links to breast cancer, my doctor recommended that I take the test for the BRCA gene. I was given genetic counseling and told what it would mean if the test should come back positive. Essentially, I would have three choices: mastectomy, continued chemotherapy, or do nothing. Also, I was advised that my daughters and niece should all be tested, as well as my mother. The test took a long time to come back—2 months rather than the 2 weeks I had been told. It was a long wait.

The Test Results

Finally, at a follow up visit with my oncologic surgeon, she hesitantly gave me the test results. It showed that I was positive for the BRCA 1 gene. I was devastated; all I could think about was facing another surgery and more scars. I left the office by a back door, since I couldn’t get a hold on my emotions.

Telling my family was hard. My adult daughter took it well, and scheduled her test immediately. My little daughter doesn’t really understand, and so we will approach the subject again when she is 18. My niece hasn’t done anything with the information. My mother elected not to get tested. She is close to 80 and simply doesn’t want the information. I respect her decision, although it would have been helpful to trace which line the gene follows in our family.

The genetic counselor told me not to feel guilty but instead to feel like a lighthouse to all the other women in my family. Even so, I felt like a polluted river. My adult daughter’s genetic test also came back positive. She has decided that when she has had all her children, she will have an elective ovariectomy and wait to see what can be offered against breast cancer at that time. I hate it that she has to think about these things, but she is calm and organized about it. I was angry that after all I had been through, I was being asked to make a Draconian decision about cutting off my own breasts.

Making the Decision

At this point I had to decide what to do next. While I was deciding, I was put on Tamoxifen, which had some obnoxious side effects. I interviewed 7 doctors about my case. Five were in my town, one was in a neighboring city, and one was by phone upstate. They each had something useful for me to consider.

The doctor from the neighboring city was the most helpful. She is a breast cancer specialist for a cancer hospital, and very familiar with mastectomy. She sat down with me, and taking a fresh piece of paper, drew a line down the center. On the left side she wrote “Pro” and at the right, “Con.” We filled the sides out simultaneously as we talked, but it will be easier here to take it a column at a time.

On the “Con” side were the following considerations:

1) Another surgery, another scar. My body image will change and possibly not for the better.

2) Reconstructed breasts are largely without feeling. In some cases the numbness goes away, but not all. It will change my sexual responsiveness to my husband. The numbness may make me reluctant to hug others.

3) This type of surgery is invasive: all of the breast tissue is removed, from the clavicle to the sternum to the lower edge of the rib cage to the very side of the torso, and up into the armpit. Most mastectomies with reconstruction involve a tissue expander which is left in place for 2 weeks to 2 months, with a follow up surgery to place the implant. This type of surgery also has a fairly high “revision” rate, which are follow up surgeries to make the breasts look right.

4) Recovery time from surgery may be long. I had just finished chemotherapy, with attendant surgeries, and my body was tired. My healing abilities may be slow now.

5) My risk of recurrence of ovarian cancer is low, but if it should come back, it won’t matter what I decide about my breasts. (This bit of news was very hard to face.)

6) It may be that I won’t get breast cancer. The factors that reduce my chances of getting breast cancer are: I am almost 50, so the high risk years are largely past for me; historically, the women in my family reach old age without breast cancer at a rate of 2 out of 3; I had my ovaries out pre-menopausally, which may lower my risk; I took Tamoxifen for 8 months; I breastfed each of my 5 children for approximately a year apiece; and finally, my breasts are no longer dense, so I have an increased ease of detection of any tumors.

7) This is the removal of healthy tissue from my body. Can I really do that to myself?

On the “Pro” side were these considerations:

1) I still have little children at home, one of whom is special needs. I want to do everything I can to be with them.

2) The risk of breast cancer would be decreased by as much as 90%

3) I would never need a mammogram again. The follow up from mastectomy patients is MRI every few years, as advised by the plastic surgeon that does the surgery for me.

4) How upsetting would it be to get breast cancer, having been through ovarian cancer, as opposed to having the prophylactic mastectomy? Could I go through the pain, hair loss and anxiety of chemotherapy again, if I could avoid it?

The columns are uneven, but some of the factors in the “Pro” side are heavily weighted for me.

Who to Talk To

Three of the doctors I consulted were breast surgeons. They all had photo albums which patients can look at to get an idea of how they will look after the surgery. They also talked to me at length about the options within the mastectomy choice. A total or simple mastectomy would remove all of the breast tissue, the nipple, and much of the skin of the breast. A skin-sparing or nipple-sparing procedure would remove all the breast tissue, but leave the nipple intact. The reduction in risk of cancer from the second type of procedure is reduced, but only by a few percentage points. In my case, my breasts were noticeably sagging (from breastfeeding and age), so I was offered a total mastectomy with a nipple transplant up higher than originally on the breast skin.

A woman at the cancer support group which I attend very generously showed me her reconstructed breasts. It surprised me how life-like they appeared and behaved. I had somehow forgotten that it would still be my skin covering the implants, no matter how numb they might feel to me. This was a very significant part of my decision making, and I vowed to be that same person for some other woman who is going through this process.

I tried talking to my women friends about mastectomy, but they were simply not prepared for it, and the conversations always ended up with them crossing their arms over their breasts and wishing me luck. My men friends were more amenable to talking about it, especially the ones who had been through cancer themselves. Their perspective was a practical, ‘you’ve got to do what you’ve got to do’ approach which I appreciated. My husband was reluctant to talk to me about it but would, whenever I brought it up. “I just want you to live,” he’d say. “Live and be with me and the children.” My family was as supportive as their own fears would allow. My mother and adult daughter were particularly helpful. Mom would tell me about elderly breast cancer survivors who wished they had done things differently or sent me their prayers. My daughter said to me once, “Mom, I think you can do anything you set your mind to,” in response to the question of mastectomy.

I am a spiritual person, and so I made the decision a matter of much prayer. I spoke with my religious leader, a cancer survivor himself, on several occasions. He counseled me that I had all the information I needed already, and that peace would come as I trusted my own ability to make major decisions. I also meditated frequently during this time, and consulted my “inner healer” on what to do. I struggled with the question for almost 10 months. The most important moment in the process, though, came unexpectedly. I was sitting by my little daughter’s bed, reading her a bedtime story. She had fallen asleep and looked so peaceful and sweet. I looked at her and said out loud, “Oh, what I wouldn’t do to stay with you—to watch you grow up and have a family of your own! What I wouldn’t do to even have a chance at that!” And suddenly I knew what I had to do.

The Surgery

I went back to one of the surgeons I had interviewed. He went over the information about the surgery again and we agreed on a surgery date. I chose him because he did not tell me what I wanted, but rather listened to what I wanted. Also, he was a plastic as well as general surgeon, his ‘after’ pictures were good, and his bedside manner was superior.

The day of the surgery my operation was actually moved up by 2 hours. I checked in and was prepared. My surgeon came in and had me sit at the edge of the bed. He pulled out a Sharpie marker and drew directly on my skin. I was alarmed when I saw just how much skin was going to go, but he was reassuring. Several hours later I awoke in my own room—although I was told that I was awake in post-op, and again on the way to my room. I was surprised that there was not much pain. I was also pleased that the surgeon had done the mastectomy and reconstruction all in one operation. Because I had asked for a small implant size (a size B) and the tissue was healthy to begin with, there was no need for the expanders. No muscle had been removed. Also, he had checked all of my lymph nodes and removed one for dissection—it was normal. I was delighted.

I left the hospital with two drains, one from each breast. For the next five days my mother patiently drained and measured the product from my breasts. The stitches were self-dissolving, so they took care of themselves over time. On a revisit to my surgeon it was found that one breast was not healing as quickly as the other. The doctor elected to leave the wound open to drain over the next month. After that time, during another unrelated surgery, he reclosed the wound in several layers.

The Result

I am happy with the results from the mastectomy. My scars are already minimal. On each breast they look like an upside down T, extending straight down from the transplanted nipple. It was odd at first to have my body landmarks in different places—freckles many inches away from their original location—but this becomes normal in time. My breasts are largely numb, but I have a streak of sensation down each side and in the center. Hugging people is still pleasurable, especially my grandchildren, although every now and then I run into a ‘crusher’ and I have to beg off the hug. The implants look good under clothing, and I love the fact that I no longer need to wear a bra. Because the implants are held in place by muscle and a cadaver tissue sling, gravity has no say in my bustline. When friends and acquaintances ask about the surgery, I respond by cupping my hands under my breasts and saying, “Here are the new girls—aren’t they dandy?” To which, people have to laugh and agree.

I can’t tell you what to do. This is a hugely personal decision. No one, not even your doctors, should tell you what to do. I am sorry you have to make the decision, but I want you to know that it is possible to make it and to even have peace about it, whatever you decide. If you do choose mastectomy, it is possible to come out of it with a good body image and ‘dandy’ breasts. I recently showed my new breasts to another BRCA 1 positive woman, and it gave her some peace. I wish you luck in your decision process.