With today's post I wanted to do a follow up and answer some questions that many have asked since my big announcement last week. I will provide more details about my surgeries and the BRCA2 mutation.
Surgery Dates
My mastectomy is scheduled for July 10th of this year. Originally we were thinking of doing it sooner, but because our insurance year begins in July it makes much more financial sense to wait and do all the procedures within the same insurance year. I also feel comfortable waiting on the procedure, as I just recently had a breast MRI and mammogram that both came back normal. If things go as planned, without complications, I will be having 3 different surgeries over a 5-6 month time period. One for the mastectomy and first part of breast reconstruction, one for the salpino-oopherectomy, and one for the final reconstruction. With breast reconstruction after a mastectomy, there can be any number of complications in which the process could take longer than anticipated, or additional surgery may be required. I am grateful that I have some time to prepare for my surgeries. My focus right now is to take very good care of myself, so that I can reduce my risk of complications as much as possible. One more added bonus of waiting until July is that I will still be able to run the Spartan Beast race in June (I have been looking forward to it ever since I ran it last year). I think it will be a great way to 'go out with a bang' before starting my surgical journey. My salpino-oopherectomy has not been scheduled as of yet. I am waiting on some additional tests that my doctor recommended. I will then be referred to a gynecological oncologist to discuss surgery time frames. It will most likely be somewhere in-between my mastectomy and final breast reconstruction. I am tentatively planning it for some time in September. The final reconstruction surgery should fall somewhere around November or December, depending on how long the expansion process takes.
The Mastectomy
I don't know about most people, but before I started researching the BRCA2 mutation, I actually knew very little about mastectomies. Did you know there are different types? The different types of mastectomies include: radical mastectomy, modified radical mastectomy, simple mastectomy, skin-sparing mastectomy, and subcutaneous(aka nipple-sparing) mastectomy. These different types refer to how much of the breast and surrounding tissue is removed. When a woman has breast cancer, the type of mastectomy performed usually depends on how far the cancer has spread. When a woman has a preventative mastectomy, like I am, she gets to decide how much tissue remains. After much research and meeting with my general surgeon and plastic surgeon, I have decided upon the subcutaneous mastectomy. I am grateful to have this option, as most women with cancer don't have the opportunity to choose this type of mastectomy. In a subcutaneous mastectomy, all of the breast tissue is removed, but the nipple and outer skin of the breast remain. With leaving the nipple (which is completely made up of breast tissue) there is still risk of developing breast cancer, but the risk is minimal. My general surgeon said it would only increase my risk by about 1% to keep the nipple and she feels completely comfortable with this choice. After the procedure, my risk of breast cancer will go from an almost 90% risk to around a 5% risk. I can live with that. I believe being able to keep the outer part of my breast, will help lessen the feelings of loss after the surgery. I have also tried to prepare myself for the possible complication of necrosis (tissue death). This some times happens with a subcutaneous mastectomy, and if it does, more tissue will have to be removed. I have made peace with the prospect that I may lose more tissue than I want to.
During any type of mastectomy, the nerves in the breast are cut, leaving the woman numb along her chest and sometimes under her arms. Some women regain some feeling, but most do not. It is also possible to have phantom pains or itches, much like those experienced when a limb is amputated. The numbness and phantom pains can be some of the most difficult aspects of adjusting to life after a mastectomy. I am so grateful that I have been able to connect with other women online who have been through it, and who have helped me get an idea of what it will be like. Not only have these women openly shared their stories with me, but many have posted photos of their entire journey to help me know what to expect. I am beyond grateful to all the courageous women freely sharing themselves in an effort to help other women on the journey. They have brought me so much comfort and hope in my moments of despair.
The Breast Reconstruction
Can I just tell you that I was completely overwhelmed, yet fascinated, when I started researching breast reconstruction? I could not believe how many different options there were. I am so impressed with the medical advances that have taken place, in order to help women feel more whole after going through a mastectomy. Here is a list of some of the procedures I researched:
- Tissue Expander to Saline/Silicone-Filled Implant
- Tempory Saline-Filled Spacer to Permanent Saline/Silicone-Filled Breast Implant
- Latissimus Dorsi Myocutaneous Flap +/- Saline/ Silicone-Filled Breast Implant
- TRAM Flap
- Free-TRAM Flap
- DIEP Flap
- SIEA Flap
- Bi-Pedicle or "Stacked" SIEA Flap
- SGAP Flap
- IGAP Flap
- TUG Myocutaneous Flap
- Perforator Flap
- TDAP Flap
- ICP Flap
- Brava Fat grafting
In the weeks following my mastectomy, I will go back into the plastic surgeon's office several times to have the expanders gradually filled with a needle and syringe. Each time the expanders are filled, I will most likely be in pain and uncomfortable in the following days. Most women tell me they HATED their expanders, so I am assuming that I will probably hate them as well. Once the expanders are filled to the right size, they are left in place for at least another 3 months to form a 'pocket' for the implant. After that 3 months, I will go in for what they call an exchange surgery. The plastic surgeon will replace the expanders with silicone implants. The pocket created by the expanders is very important, since I won't have any tissue to hold the implant in place. The doctor will also use Alloderm to create a sling for the implant. Alloderm is a tissue matrix created from donated human tissue. Not only will it aid in holding the implant in place, it will soften the appearance of the implant. I am hoping that the exchange surgery will be my final surgery, but there is a possibility that I will need revision surgeries. Breast reconstruction is a long, complicated, and scary process. I will be very grateful when it is all over with.
More About BRCA2
Many people have asked about my mom since I announced my mutation. I was careful not to talk about her in my blog post, because she is a private person and I did not feel like it was my right to share her story. For anyone that understands the mutation, it is a given that if I carry it, my mom also carries it. This mutation cannot skip generations. So, yes, my mom carries the mutation as well. I have received her permission to share that fact on my blog. She got tested shortly after I had received strong promptings to be tested. I waited for her results before I submitted my test. My mom went in for a salpino-oopherectomy and hysterectomy just over a month ago. She has recovered and is doing very well. She will also be going forward with a mastectomy in April, so please include her in your thoughts & prayers. I am so grateful that she hasn't developed cancer up to this point and that she is willing to have the surgeries, so that I will not have to fear losing her to cancer in the future.
Just as my mom passed the mutation on to me, each of my children have a 50/50 chance of carrying the mutation as well. This was probably the hardest part of learning that I carried the mutation, knowing that I may have passed it on to my children. For men, the BRCA mutation is not that detrimental. It does put them at a slightly higher risk for certain cancers, even male breast cancer, but the risk is very small compared to the risk women face. The bigger concern for men carrying the mutation is the possibility of passing it on to their daughters. I do not know what the future will hold for my kids, and it will be their choice when they are adults whether to get tested or not, but I do know that I want to be an example of being proactive in the face of this mutation.
There are actually two different types of BRCA mutations (BRCA1 & BRCA2). I hope that writing about my BRCA2 gene mutation brings more awareness to the risks of hereditary cancer, but at the same time I want to stress that these mutations are not common. A very small part of the population carry the BRCA1 or BRCA2 mutations. My mutation is often referred to as BRCA2/Early Onset. This is because one of the hallmarks of this mutation is the development of breast or ovarian cancers at younger ages than what is normally seen. It is also strongly suspected in families that have many cases of breast or ovarian cancer, or have women who have had breast cancer in both breasts, or women who have had both breast cancer & ovarian cancer, or in families in which men have developed breast cancer. It is when people present with these type of family histories, that a doctor will recommend genetic testing for the BRCA1 and BRCA2.
Thanks again for all of your love and support. I hope that this post has answered some of the questions that you had after reading my first post. I plan to keep you updated on my surgeries, but I also hope to get back to writing about other topics on my blog. Please feel free to send me any other questions you might have.
