“Dead to Me” and that gene

I get a lot of  TV show recommendations from my patients these days. In order to keep up with conversations, I try to watch as many recommended shows that have some reference to genetics* as I can. This month will focus on the BRCA1 and BRCA2 genes, or more colloquially, ‘that gene’. This is part one of a multipart series and will contain spoilers.

One show piqued my interest recently: “Dead to Me” starring Christina Applegate as a recently widowed woman who is out to find her husband’s murderer. Sounded like a simple, straightforward, black comedy, which is right up my alley. In the midst of this traumedy, they so casually drop that the lead character Jen, played by Christina Applegate, carries a BRCA gene mutation. At dinner, she reveals, “I have the gene.I didn’t want my kids to lose their mum like I did mine.” 

Later in the show, she reveals that her anger and her resentment that have been building during the season stem partly from her decision to undergo a preventative double mastectomy and her husband’s “disgust” at the aftermath of her choice.

As a genetic counselor, this hit hard and this hit close to home. There are many days where I have this conversation with women about the decision to undergo surgery: before, during, or after their genetic testing to see if they also carry “that gene”; for women who have unexplained early-onset breast cancers in their families; or for women who have already been diagnosed with cancer themselves. It is a difficult conversation, but it is a much more difficult decision to make. I really appreciated the complexity and layers it added to the character in what I initially assessed as a fun and messed up, but not too deep, show. I was wrong there.

I also appreciated Christina Applegate’s comments after the Netflix show was released that this is a very personal decision she made for herself in real life as well as for her character in this show. Ultimately, she hopes that women watching “Dead to Me” who are breast cancer survivors or considering preventive mastectomies will feel less alone. 

When going through the decision about this type of surgery, it is first and foremost a very personal decision. This will affect the shape of a person’s body, their self image, their confidence, and their future health management. But they are not alone in this decision. Current or future partners may have very strong and sometimes contradictory feelings. One of the more extreme versions of this was presented in the show with Jen sharing that she needed her husband, but he was unable to move past her decision to proceed with the surgery and he made her feel disgusting. Sometimes it is the opposite roles, where the person with the cancer or organ to be removed is not keen on the surgery and their partner is encouraging them strongly to reconsider.

Let’s put this into context with common concerns and misconceptions I often hear at work. Any identifying information has been changed or removed.

“If I have the gene or get the genetic testing, that means I also have to have THE surgery (double mastectomy).”

I get asked this question a lot, and some people assume that if you have the gene you automatically will get the surgery. It is an option. Most people react quite strongly the first time that the option of surgery is brought up to them. Some people are completely in favor and cannot imagine any other course of action. For other people, they believe this is drastic and going too far for a possibility that may never come true.

There are many nuances in this decision. Some people really like their natural breasts and are understandably attached to them. Some people are still planning on having children and would like the option to breastfeed. Some people are already considering reconstruction or breast augmentation surgery and now face a decision about a similar surgery where aesthetics are not the priority. Some people have already been through reconstruction surgery and know what they’re in for if they have to do it again. Some people have had a poor experience with surgery. Some people are worried about what their partners, parents, or other important people in their life may think about this decision. The point is that we all have different opinions about the surgery and should not presume to put forth our opinions as the only truth.

“The gene only runs through women in the family or it skips a generation”

The gene can be inherited from either parent, and does not skip a generation. Not everyone who carries the gene will develop cancer, so sometimes the people who are affected by cancer are in every other generation by chance.

“People only get the surgery once they’ve had a cancer”

The surgery can be done before a cancer is diagnosed, in the hope of preventing a cancer. The surgery is one of the few options to significantly lower a person’s chance of getting breast cancer. Similarly, not all people who have been diagnosed with breast cancer and have the gene change opt to go through with the surgery.

“There are no other options other than surgery”

There may or may not be any other recommendations that are actually feasible given someone’s current place in life or in treatment. There are often at least a few options, but may not be great choices, or even good ones. Medical professionals can help someone assess all of the options, such as what is feasible now, what are the pros and cons of this decision, and how do these decisions today change future options?

“The decision to get surgery is made alone”

It is important to be as patient as you can with each other and yourself as you’re making these decisions. What someone feels initially may change with time, with more discussion, or with more information. These feelings often are strong and come from a place of caring: concern for themselves or their partner, worry about the future cancer or cancer recurrence, love for the person as they are and not how they look, how they will be able to cope with the process and recovery- there could be as many reasons as there are people trying to make these important decisions. We come from different backgrounds and upbringings, so of course you’re not going to feel exactly the same way as someone else about decisions like this. It’s important to practice empathy and listening skills to appreciate where the other person may be coming from. If it’s not your decision to make, give that person their space to make the decision. Not everyone wants people weighing in on this. Not everyone benefits from a discussion. Like any big decision, there is no obvious outside signal that the person is making or has already made their decision. These can be silent concerns. It took four episodes for us to learn that Jen had been through anything similar. There are also outside resources, such as a mental health counselor, who can help.

I look forward to seeing where this show goes. Spoilers- it has already been picked up for a second season! 

Questions about that BRCA gene and whether you should have a test for it? Schedule with one of our certified genetic counselors here https://geneticsupportfoundation.org/appointments

*The exception is “Grey’s Anatomy”; I watched enough of that show to know the references are wrong (in sometimes major ways) and I just can’t handle that level of drama. 

Read more from Christina Applegate herself http://www.cnn.com/2008/LIVING/10/14/o.christina.applegate.double.mastectomy/