Home
Articles
Awaiting Surgery
Chat
Crafts
Current Events
Fashion
Friends and Family
Fun Stuff
Mailing List
Polls
Profiles
Prostheses
Search
http://flattops.webs.com/Prophylactic Surgery--What is She Thinking?NoteA friend sent me a link to an article about a woman who had had prophylactic mastectomies. It was a shock to scroll down to the comments section and begin to read all of the guests lambasting this woman for her "foolish" decision. People seemed to think she woke up one morning and decided to have the surgery for no good reason.Prophylactic surgery is so much different than many people think. Families and friends may have a difficult time understanding a loved one's "choice." That is why this article is here. It is intended for the friends and family of a woman who has chosen prophylactic surgery. However, women who are undergoing the procedure may find hope and empathy here.
Abnormalities Already PresentMany ladies who have prophylactic surgery have already had biopsies and other tests. Sheri "had so many existing suspicious lumps and proliferating abnormalities, and my breasts were forming new suspicious lumps so fast, that my doctors told me that my breasts' problem areas couldn't all be biopsied. Consequently, they couldn't tell whether I already had breast cancer or not. In addition, because there were too many problem areas to biopsy, I might already have (or would soon develop) one or more breast cancers that were growing and would not be detected until they were large and perhaps even spread to other sites in my body. I had so many different types of proliferating abnormalities throughout my breasts that, given my family history of breast cancer, the chances were high that I would develop breast cancer."Melissa had at least two doctors tell her the "lumps and bumps" were due to her young age, and she needn't have an MRI or mammogram. "After surgery, the pathology came back that I had abnormal cells and was probably in the very early stages of developing breast cancer. The pathology report was two pages long!" While some women have prophylactic surgery based on family history alone, now women have been empowered by testing for BRCA gene mutations. Women who are BRCA1+ or BRCA2+ have an increased risk of cancers, especially including breast and ovarian cancer. Margaret "chose to have prophylactic mastectomy in order to avoid getting breast cancer. As a BRCA1 mutation carrier, I understood that I had an 85% chance of getting breast cancer, unless I took action."
Better Sooner than LaterBecause so many advances have occured in cancer care, people don't realize what cancer involves. Cancer does involve usually cutting out/removing tissue. In other words, some women may think, "why wait for the cancer to come?" For those in a high risk category, the surgery may have to happen, anyway. "It seemed like getting over this hurdle at this time in my life would be a wise decision . . . if not an easy one," Melissa says. "Based on my genetic risk and what doctors were telling me, the mastectomies sounded inevitable."Cancer SpreadsSadly, cancer is not something that sits still and waits to be found and removed. When cancer spreads, the prognosis is not good. The media often portrays cancer as a highly cureable disease, often focusing only on stories with fairytale endings. Companies offer breast cancer themed housewares, jewelry, makeup, and stuffed animals. Some people think this leads to education. However, one member who has had breast cancers cannot bear to look at breast cancer awareness items. Indeed, the merchandising seems to turn breast cancer into a "brand" and trivialize what is a serious condition.While advances are being made all of the time, cancer is still a serious condition and the number two killer of women, second only to heart disease. In the US, breast cancer is the second most deadly cancer in women, second to lung cancer. Survival rates go down the more advanced cancer becomes. Says Margaret, " I was not willing to take the chance. I was not willing to risk getting a more aggressive cancer, or missing the diagnosis until the cancer had advanced or metastasized."
ComplicationsWaiting to have a mastectomy can cause complications. If cancer spreads to the lymph nodes or a person has radiation, a condition called lymphatic edema (lymphedema) can occur. One of Melissa's reasons for having surgery so early was that she was told no lymph nodes would need to be removed. "My mom had cancer and developed severe lymphatic edema in her left arm as a result of treatments. She has problems with finding clothing that fits and works for her, and regular serious cellulitis infections, once leading to a hospital stay. My mom feels lymphedema has been her most difficult struggle resulting from cancer treatments, and advised me to have surgery before lymph nodes would need to be removed (which would have been more likely the older I became)."Sheri "wanted to avoid radiation, chemotherapy and the spread of cancer to other parts of my body."
Doctor RecommendationIt seems a lot of people outside of the issue believe that nervous, over-reactive women go into a doctor's office and say of their own accord: "Okay, I want bilateral mastectomies!" This is very far from the truth. Women with BRCA mutations are actually informed about the option of prophylactic surgeries by their doctors, and most insurance companies readily cover it. It has been deemed "medically necessary" by the medical field.It is hard to believe any woman would come up with such a radical decision without the advice of a medical professional. Just as with any operation, a woman can decline, but this does not mean that it has not been recommended to her. Sheri says that "My doctor, who is very intelligent and caring and for whom I have the utmost respect, told me that if he were me, he would have the surgery." Margaret adds, " I felt like my doctors and genetic counselor seemed relieved that I opted for surgery rather than surveillance."
Enough with CancerFamilies who have genetic mutations usually have faced a lot of cancer in their lives. They may have lost a mother, father, sibling, aunt, or other relative to cancer . . . most have probably lost multiple family members, and at a younger age than others who have lost loved ones to cancer. For many women, enough is enough. Tackling the problem head-on greatly reduces the chance of developing cancer. Women may be motivated, for example, by having younger children and not wanting them to grow up without a mom. Melissa comes from a small family. "My mom had cancer four times during my growing up years. This is so difficult not only on the person with cancer, but on the whole family. The only two other known females with the mutation passed away prematurely from cancer. I found out that my grandfather was haunted by his mother's and sister's painful deaths for his entire life. His mother died from cancer when he was only in his teens. If I have children, I don't want them to have to go through what my grandfather experienced."Sheri says that "many of my family members had cancer, including both my parents. My father died of cancer. Many of my female relatives had breast cancer." Family history can also, however, lead to empowerment. Margaret "discovered that I had a breast cancer gene mutation because my aunt tested. She had breast cancer in her 40s and then had a local recurrence after a breast sparing treatment. My mother had LCIS (lobular carcinoma in situ ) at around the same time. My mom opted for bilateral mastectomies. She was back to her usual lifestyle quite quickly, and did not seem to worry much about recurrrent cancer. Certainly her example made it easier for me to choose bilateral mastectomy as a preventative treatment." Melissa agrees. "I grew up with a mom who had her first of two mastectomies when I was young, leads a normal life, and is treated like any other person. Growing up, I very rarely thought about the fact that she was wearing prosthetics--and even when I did, it didn't matter one bit." Fits in with LifePerhaps for some ladies, surgery fits in with their lives right now. Some people like to tackle a problem head-on and solve it, and move on. Says Melissa, "The surgeries (for many of us, hysterectomy and oophorectomy are also recommended) fit in with my life right now. I was able to take time off from responsibilities and had someone willing to care for me during recovery. For one of my surgeries, the oncologist told me that there was no reason to wait--if I was ready, then now was the right time, but that, either way, he would not recommend not having surgery. So it was a matter of, do I have these surgeries when they're convenient, or do I let cancer show up on its own terms at an unknown date and time?"
Increased MonitoringWomen who are at high-risk will have to undergo increased monitoring if they choose not to have mastectomies. Unlike other women, the visits involve MRI monitoring and possibly mammograms. These can be quite expensive for those who have poor or no insurance. Multiple doctor visits can be stressful for anyone, especially if such visits require waiting for results or follow-up visits. Of even greater concern, the close surveillance required for women who have so-called "breast cancer genes" presents its own risks. In fact, it may increase the risk of cancer. (See: http://uk.news.yahoo.com/5/20090128/twl-tests-pose-extra-cancer-risk-3fd0ae9.html).Sheri had a lot of testing. "Based on my doctors' recommendations, I needed so many mammograms, followup tests, and then breasts biopsies, that by the time I received the results of the breasts biopsies, it was time to start the next round of mammograms and followup biopsies. It was unending, time consuming, quite expensive, worrisome, and my breasts were super sore from all the continual biopsies." Margaret found "it very stressful to go through testing wondering whether the tests would show that I already had breast cancer. At one point, after my first mammogram call back, I felt like it was inevitable that I would end up with breast cancer. Once I had my positive BRCA1 test result, I felt that my intuition had been correct. In many ways, it was a relief to be able to act pro-actively and have bilateral prophylactic mastectomies rather than waiting to get breast cancer." Melissa says that she would have needed to go to have cancer testing and visits at least six times a year. "With all of those tests, and waiting for the results, it would be never-ending trauma. I got tired of it in only a few months of living it, especially since I have other serious health problems--just this year I had three blood tests in less than three months, and have to go an hour away for blood draws. These tests had nothing to do with cancer! I don't even want to think about how many times I would have visited a doctor's office per year. During the monitoring stage, I was averaging about once per week, with two doctor appointments on the same day more than once." By having surgery, women with genetic predispositions for cancer may only need to visit oncologists as little as once per year, or visit their family physicians for their yearly check-up. Quality of LifeWhile every woman is different, some find that their quality of life goes down. Having to visit the doctor frequently and wait for test results is not easy. There is a lot of worry and waiting involved. For some women, there is a peace of mind that comes from having prophylactic surgery. Sheri states that, prior to her mastectomies, "Life had become a long series of breasts tests and waiting for results, with no break, which was hard on me and my family."
Written November 2007. This website is for personal support information only. Nothing should be construed as medical advice. Please note that Melissa has written this article as a subjective article, not as a medical article. If you have any questions or concerns, ask your doctor. |