Lisa and her daughters
Imagine you find out you have a mutation in something called the BRCA gene that means you face up to an 87% chance of developing breast cancer or ovarian cancer- a greater chance than a woman already diagnosed and treated with breast cancer has of a reoccurrence. What would you do?
Faced with that very decision, Lisa Rezende, considered her options:
1. Increase surveillance of her breast tissue via alternating MRI and mammograms every six months.
2. Have a prophylactic double mastectomy and ovary removal
3. Have prophylactic double mastectomy and reconstruction, and ovary removal.
Lisa, fortunate to have insurance that covered all the current options, was able to make a choice based on what she felt was best for her and her family. The thought that she could dramatically reduce the chance of developing breast cancer from upward to 87% to under 5%, and increase the chances that she could be there for her young daughters as they grew up was a deciding factor. The stress of waiting for results of the genetic test, and a mammogram after discovering that her mother carried the BRCA1 impressed on Lisa that this was not something that she wanted to face every six months.
Lisa is not alone. We talked with local plastic surgeon, Dr. Edward Eades and general surgeon, Dr. Vanessa Roeder, regarding the number of women undergoing this type of surgery here in Tucson. The physicians work together to help women with a breast cancer diagnosis or who have tested positive for a BRCA mutation as they consider mastectomy and reconstruction. Over the past few years they have seen an increase in the number of women who are considering the prophylactic surgery and reconstruction, Dr. Eades explains the upswing in cases,
The rate limiting step has been the willingness of the insurance companies to pay for the BRCA testing…In the beginning, when the test came out, you had to have a really, really, strong family history or compelling reasons and it took forever to get it approved, but now it seems like it’s getting more common and the insurance companies are more willing to approve the testing.
Not a simple decision – Surgery or Surveillance
Dr. Roader and Dr. Eades
Dr. Eades points out that the decision to proceed with surgery following a positive BRCA gene screening isn’t simple. For an individual who carries the BRCA mutation it isn’t just a double mastectomy and reconstruction, but also ovary removal. Dr. Eades emphasizes that there are health consequences,
This is a new cadre of patients that has not been seen in surgical oncology previously – patients coming in and having cancer surgery, who don’t have cancer… And they’re much younger usually too. They have to struggle with when to do the mastectomy and when to have their ovaries taken out. When the ovaries are removed the women will go through menopause. Some of them are young, they may not be married, or have kids and they may want to have children.
The physicians have to understand and explain a myriad of other complicating factors too. Dr. Roeder further explains,
BRCA is an extreme risk, not just a low risk, it’s not just twice as much as a woman sitting next to me that doesn’t have the gene mutation. It can be upwards to 87%, but just because you have the gene mutation does not mean that you’re going to get breast cancer, it just means you have a much higher risk. There are other things to take into account- the age of onset the family members who had the breast or ovarian cancer. Are there other illness that the patient has? You have to think about the risk to the patient. It’s a big surgery. There’s a lot of information that you have to let the patients know so that they can make the decision for themselves.
Double mastectomy doesn’t eliminate all chances of breast cancer
No matter how good we try to be when we’re doing a mastectomy we don’t get a 100% of the breast cells out period. We know that even with the best situations there is a risk of re-occurring or new developing breast cancer of about 4%. It’s important they realize that we’ve decreased their risk immensely, but we can’t make it zero.
– Dr. Roeder.
Dr. Eades shares that, while the risk isn’t eliminated completely, the women who have the double mastectomy state that they “gain tremendous relief and peace of mind. None regret having both sides removed and the reconstruction.”
What should patients consider when deciding whether to have a double mastectomy and possible reconstruction?
Dr. Roeder highlights the importance of being well-informed and it being the individual’s choice:
1. Patients need to decide whether it’s the right surgery for them. They need to be well-informed and make a decision based on that information.
2. The only reason to have reconstruction if they have a mastectomy is only because the patient wants it, not because a family member, not her husband, but because SHE wants it. Reconstruction is never just one surgery and it’s done. There is always more than one surgery, and there is increasing discomfort associated whether it is implants or if reconstructing with the patient’s own tissue. Any time you do implants you’re lifting up the pectorals muscle and when you do muscle work it hurts more. It’s worthwhile if YOU want it; it’s not worthwhile if you don’t.
3. Know the risks
It takes 2-3 months after the mastectomy for the tissue to become well profused, and healed well, to decrease the risk of the infection. Poor healing and skin loss are added risks.
Dr. Roeder stresses the importance of choosing a plastic surgeon and general surgeon who work as a team from the outset of a case to understand how to produce the best outcomes for their individual patients. The two surgeons have followed a different model than the norm where a general surgeon completes a surgery and then turns the patient over to the plastic surgeon who then inherits whatever choices were made by the previous surgeon – as well as any complications. Dr. Eades consults and meets with Dr. Roeder and the patient before the patient is even put under anesthesia. Dr. Eades then stays with Dr. Roeder as she performs the mastectomy. In turn, Dr. Roeder stays with her colleague as Dr. Eades finishes the reconstruction.
“It’s not done in very many places because it’s not considered a good use of each other’s time,” Dr. Eades explained. “We end up spending a lot more time in surgery than we otherwise would, but it gives superior results. There’s no question it’s better for the patient.” You can read more about this unique collaboration here.
Lisa chose to proceed with the double mastectomy, reconstruction, and ovary removal. She stresses the importance of support from family and friends for women facing this decision whether they chose surgery or surveillance. Having experienced post surgery complications Lisa is particularly aware of the difficulties associated with surgery and emphasizes that this is a personal choice – surgery or surveillance is a valid option, even for women with children.
Why is this important? A Family Discussion
While the media describes this type of breast cancer as rare, Eades disputes that characterization “10% of all women with breast cancer seems like a lot to me…and they’re just the tip of the iceberg – their children are affected too.”
For Lisa being there for her daughters was part of her decision-making process for her own surgery. Women who know that they have one of the BRCA gene mutations, or other genetic predispositions to breast and ovarian cancer, must also consider how they will address it with their children and families.
Lisa is completely open with her 10 and 6-year-old and answers all their questions,
They know that their Nana and their great-grandma both had cancer. They know I took a test that told me I would likely get cancer, but that I could have some operations that would make it much less likely. The oldest child has asked if she could have it and I said she can get the test when she is grown up to find out, but it does not change anything right now. Genetic counseling guidelines strongly discourage testing children for BRCA mutations, as surveillance would not start until 25 (unless there is a family history of breast cancer before that age.) The recommendation is that they decide own their own when they are adults.
While Lisa has daughters, and the BRCA mutation appears to have been passed down the maternal line, it can be passed from father to daughter. Lisa encourages women to know not only the breast cancer history on their maternal side, but also paternal side.
At FORCE (Facing Our Risk of Cancer Empowered) meetings I have met several young women who grew up knowing that there was a BRCA mutation in the family and they say that is their normal. So I guess it is my kids’ normal too. It took awhile for me to wrap my head around the possibility that they have it, but the more years I live with it and the more young women I meet with BRCA mutations, the more I know that they will be fine.
Facing Our Risk of Cancer Empowered (FORCE)
Not only is Lisa sharing her story, but she is also actively involved with FORCE, a non-profit dedicated to supporting those who are affected by hereditary breast and ovarian cancer. Here Lisa volunteers her scientific and education background to translate scientific studies around BRCA mutations and other hereditary cancer conditions for the lay public.
FORCE is not just for families that carry BRCA1 or 2 mutations. There are also members with other hereditary cancer syndromes (such a Lynch syndrome), as well as families with a strong history of breast or ovarian cancer but no known BRCA mutation.
FORCE‘s toll free hotline number 1-866-288-RISK and their web helpline provide help in both English and Spanish.
“Know your genes” site with information on constructing a family tree and warning signs that your family might have an inherited cancer syndrome.
Want to know more?
You can find out more about how Dr. Eades and Dr. Roeder are using best practices and collaborating to achieve the best outcomes for women facing mastectomy whether they be from genetic or non-hereditary breast cancers here.
This is the second of two posts sharing the experience of a local woman with the BRCA1 mutation, the first is here.
You can read more personal stories of women facing breast cancer and the resources that TMC for Women Breast Center offers here.