It has been 3 years since my dear wife found out she had breast cancer. I still remember her crying hysterically, and the shock and sadness that comes to the family with such a diagnosis. I will admit - it was hard! My wife’s entire family on her Father’s side has had cancer, all except Dad. That’s 4 out of 5. Mom’s side is also pretty full of cancer diagnosis. So you could say the odds were high that one day she might face this disease. So when we got the bad news, I am sure the reaction everyone has is the same - now what? I poured myself into lots of reading. I appreciated most the book written by Dr. Elisa Port. It was fair, honest, and reliable. I believe it was “New Generation Breast Cancer Book: How to Navigate Your Diagnosis and Treatment Options-and Remain Optimistic-in an Age of Information Overload.” After reading several books, and carefully considering the options, I don’t think anyone but YOU should decide your treatment course. BUT (AND THIS IS A BIG BUT) You deserve to know the WHOLE TRUTH about what you are going to experience.
I am going to say something that may upset some people. I don’t care. Having lived through this experience, I honestly believe it is a lie to say that “lumpectomy/radiation” and “mastectomy” have the same outcomes. That is as close to a lie as I have ever heard. That’s like saying “if you take the path to the left, you will go directly to your home, or if you take the path to the right, it will take you twice as long, through poison ivy, and there might be is vicious dog to watch out for, but after all of that, you get to your house.” While it is true that they both result in you getting home, are they really both the same?
I am incredibly upset that the full treatment path of lumpectomy (and more importantly radiation) are not not always clearly explained before people take that course. I am upset that the surgeon or oncologists are not more upfront about the fact that radiation can destroy surrounding tissue; that the radiation can cause cancer. I am upset that the surgeons or oncologists don’t explain how painful the radiation treatment is. I am upset that they don’t always clearly explain how tamoxifen can affect you, your body, your life. I think it is insane to say “mastectomy and lumpectomy” have the same outcomes.
I heard a report on a popular TV program that sited there was an “alarming increase in the number of mastectomy surgeries being performed.” The article sited in increase of 70% in mastectomies. I think that shows that more and more people are getting the time to choose the best treatment course for them. BRAVO!
I hope I am not giving the impression that lumpectomy/radiation is the wrong path, but it is for some patients.
Then you have the family history to consider. Everyone on both sides of my wife’s family had cancer. When we discussed and considered everything, it would have been incredibly foolish not to aggressively attack this disease. Double mastectomy was the right path. If you get cancer in one breast, isn't it possible to get it in the other?
The part that is sometimes less vocalized is that once you treat with lumpectomy/mastectomy, you have to continue to monitor both breasts closely. Every 3-6 months, the worry starts welling up. You start to wonder - “will the cancer come back?” Anxiety attacks are common. You see, we had many friends who have lived through this experience. They were honest with us. They told us the good and the bad of lumpectomy/radiation. I am so glad that we took a moment to research the treatment, and carefully considered all treatment options.
Now let's consider the mastectomy route. Yes - you are going in for a surgery that will change your life. If being “busty” is a part of your identity, I can see how this would be a huge change, and could be very emotionally difficult. However, as a husband, my wife’s life and wellbeing are infinitely more important than breasts. I want her to be happy and healthy! I would be a bad husband if I told her “just treat the one side, and hope that cancer doesn’t come on the other side.” That’s unreasonable to me. My wife saw family members treat a single side, only to have cancer come back with a vengeance in the other breast. Also, with mastectomy, though perhaps traumatic at first, once the surgery was done, her cancer story was over. No need to come back every 6 months to retest. Removing all the tissue that could be affected is a more aggressive and final choice. It cuts out a lot of options. However, after mastectomy, my wife is not as scared of the cancer coming back. We realize, of course, that this is still a possibility, but the possibility is very low.
I have heard it said that a barber will always tell you that you need a haircut. I suggest that an Oncologist will most often tell you that radiation treatment is the best option. Really discussing this with multiple experienced people is important. And I suggest discussing it not just the Dr.s involved, but the amazingly generous women on Facebook in the breast cancer groups. Talk to women who have been through the entire process. They tell it like it is, and really want to help. We only discovered this amazing resource after my wife had her surgery. (Email Us to get the current list of my wife's favorite breast cancer facebook groups)
Today, because of being unable to do reconstruction, my wife does have to wear prosthetics when going out in public. The attention of not wearing these is something she doesn’t want to have. So that is definitely a small but real disadvantage of mastectomy without reconstruction. Finding clothing is also a little harder today.
After a little bit of time, I think we all have adjusted to the mastectomy. My wife now says that she feels “light” and can run upstairs without any pain (something I never would have thought about). If you choose to do lumpectomy/radiation, and do understand everything involved, than I applaud and respect you. But make sure you know as much as possible. Make sure you know the entire path, start to finish, before deciding on your total plan. Good health to you!
PHIL
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Update - 5-21-21 Lumpectomy VS Radiation
Thank you for the responses to this article I wrote a number of years ago. I have to admit that I didn’t upset too many people with what I wrote. That’s Wonderful! In fact, Leslie has told me that several Dr.’s have agreed with the comments presented. I feel like there is one more thing that needs to be said about the Lumpectomy VS. Mastectomy choice, that has been left unsaid…
The more I consider our life (Leslie’s experience, and the thousands of women each year Leslie is able to help with her work at Pink Pepper Co), the more I have been considering the real outcome of both surgical paths. So I asked Leslie to ask her buyers, that indicate they are doing mastectomy, what lead them to their decision. What has become obvious in those answers is that a decent number of women first did lumpectomy/radiation, and now some 5-7-10 years later need to do a mastectomy anyway.
By no means is this a statistical sampling, but I would suggest that of the people Leslie asked, perhaps 1/4 said they treated with lumpectomy first, and now many years later, the cancer reoccured, and now they must do a mastectomy. Many, sadly, are facing a more serious form of cancer this 2nd time. Stage 1 to stage 3, for instance. Leslie is also seeing quite a few of these responses saying that the cancer reoccurred in the same spot as before! That is not something I would have expected. I thought, by definition, radiation treatment prevented that from happening. NOT TRUE! And here is the point I want to state - what is the time frame upon which the medical community determines that lumpectomy/radiation and mastectomy have the same basic outcomes? 5 years? I am going to suggest this is probably the correct number. But what about 10 or 15 years later? Then which choice is best? I have no doubt saying that a double mastectomy is absolutely superior - the gold standard for prevention.
Leslie’s surgeon explained her ADH (Atypical Ductal hyperplasia) was fertile ground for growing cancer cells. That was the original concern found in the needle biopsy. So for me, the surgeon explained it was like Iowa soil. Good to grown things. If a seed falls to the ground in Arizona, it probably isn’t going to sprout into a tree. But in Iowa, it will! I think anyone who would have this “fertile ground” in their breast tissue for cancer would be strongly concerned about treating both breasts, right? That’s at least what I am thinking. A double mastectomy might be the right path to consider.
So as you consider your treatment option, please know that in addition to all the problems with lumpectomy/radiation treatment, you still may be developing problems on the opposite side. Leslie lost both her Aunt and her Grandma for that reason. One buyer said to Leslie, “I should have just done a mastectomy the first time. The dumb radiation treatment cost me $50,000!” Sadly, I think that is the reason many recommend lumpectomy strongly over mastectomy. It is better business for them. Please - do research before deciding if mastectomy or lumpectomy with radiation is the right thing for you to do! If the idea of being checked every 6 months for a reoccurrence scares you as much as it did Leslie, you might want to consider a double mastectomy.
I also would like a list of facebook groups. I have not yet received a date, but plan to fight hard.
Loved the perspective of the husband. I have also been blessed with a husband like yourself.
I WOULD LUV A LIST OF FACEBOOK GROUPS…
MY DOUBLE MASTECTOMY IS DECEMBER 10, 2019…
Thank you for your honesty. I am doing a preventative double mastectomy. I am BRCA2 positive. My sister passed away from breast cancer and also carried the gene mutation. I have been blessed with having people to talk to about their surgery. I, too, am opting to go flat instead of reconstruction. I had a nurse at my gynecological oncologists office that told me her story about reconstruction. It really helped me know that it is not for me. She also mentioned that you have to have the implants switched out from time to time. They are not in their for life. She was the first person to mention that to me!! I have a support group that I follow on FB, but would love more groups.
Jeanette & Lisa I hope you’re both healing & adjusting to your surgery’s. I’m having my surgery on 8/27; bilateral prophylactic mastectomy & bilateral salpingo oophorectomy & total lapeoscopic hysterectomy… if you can think of anything that you wished you knew about recovery or have any advice to share that would be great! I’m also going to search for some facebook groups. I bought a recovery pillow & today I’m taking some time to read the posts on Leslie’s blog …so happy I found this website & your posts! good luck!
I would love a list of Facebook groups please. My double mastectomy is in a couple of weeks and would like to see if there is anything I can do to make it easier on myself and my husband.
Thank you in advance.