Finding Camaraderie Online
Updated: Sep 17, 2019
Irina is the founder of Mutant Strong, a Facebook community for people who have genetic mutations. She discusses the power of online groups as a place for communicating, commiserating, and caring—without censoring anything.
Brilliantly: As a latecomer to Instagram, I didn’t realize how it could foster such a significant sense of community for women like us. You were one of the first people that I found who was being public about their experience with breast cancer.
Irina: A few years ago, I saw that people were shifting from Facebook, where I have a group called Mutant Strong, onto Instagram. I really wanted to get the word out about BRCA, HBOC, and the importance of genetic testing. I saw Instagram as a platform that gave me a chance to do that. mastectomy
On Facebook, the group is private, so people can discuss personal things about their health and it stays in the group. Whereas on Instagram, everybody can see it. So, I don’t ask intimate questions there, but I share information. kristen carbone brilliantly
Brilliantly: It makes sense to have both a private and more public-facing space to discuss things and pose questions.
Irina: Yes, I post more pictures on Instagram. Facebook has too many regulations. To be honest, they both do. It’s frustrating because the images of breasts are not meant to be sexual. We post pictures so we can see what different reconstruction options look like.
Women who are new to this process—previvors who are looking to have prophylactic surgery or women just diagnosed with breast cancer—want to see what mastectomy and reconstruction look like. And if you only Google it, the pictures are awful and scary. It’s important for women to know that with a good plastic surgeon, you're going to have really good results.
Brilliantly: I agree. I did the same thing. I looked on Google and thought, "Uh-oh."
Irina: It's awful. That's why we have the groups. That's why we post pictures. I'll post pictures in my bra or bikini just so people can see that I look normal.
Brilliantly: Is the mission of Mutant Strong specifically for people who have genetic mutations?
Irina: Yes. In the group, I let people be themselves, be angry, curse. It’s important to get things out, and say how you feel. Some groups have really rigid rules about language. That's one of the reasons I opened up my own group. I don't want anybody to feel censored.
The whole process is frustrating, and how you communicate your feelings shouldn’t be censored. We're frustrated. We're already going through a lot of stuff, and then to be censored is really tough, for me at least.
Brilliantly: Yes, it’s important to say how you feel and get support. Does your group have both previvors and survivors? Or is it meant for women having a specific experience?
Irina: Both. I'm a breast cancer survivor and I'm an ovarian cancer previvor. I relate to both communities. I have the utmost respect for previvors. Honestly, those ladies are my heroes. It's amazing that somebody would go and have prophylactic surgery on a healthy body before they get cancer. Just because you didn't have cancer doesn't mean that you don't go through a life-changing experience.
Brilliantly: What do you think about women who have previvor guilt or feel that they're not part of the community because their cancer treatment didn’t require chemo? Is there something that you would like to say to the women feeling that way?
Irina: Yes, don’t feel guilty! There's nothing to feel guilty about. I think what they’re doing is brave and amazing. Electing to have all these surgeries and changing your body changes your psyche. I have nothing but the utmost respect for women making that choice. Don't feel guilty. Be proud of yourselves.
Brilliantly: It's critical for women to have advocates who understand both sides of it. I think you’re playing a really important role.
Irina: That's specifically why I started Mutant Strong. It's to support other women. And in my group, if someone isn’t supportive of another person’s experience or says something unkind,
I remove their comment and them from the group. I also try to talk to them about why.
Brilliantly: And do you think having the discussion helps change their mind, or do you just agreed to disagree?
Irina: People are allowed to feel what they feel. I think the point is to teach somebody that even though we're different in some capacities, we're still the same, we're part of the same community. We are all suffering. We still feel depressed, have anxiety, PTSD, body image issues. Whether you are a survivor or previvor, this shit is hard.
I will never know what it's like to have a prophylactic mastectomy. I wish that I would have known that I was BRCA 2 so I could have taken action. So, even though we didn’t have the same experience we can be empathetic and understanding.
Brilliantly: I totally agree. Thank you for being an example of someone who has figured out ways to be inherently supportive of other women and the differences in their stories. You're such a good advocate of inclusiveness.
Irina: Well, genetic mutations and cancer are not going away. We should be here for each other to share our experiences, feelings, and ideas.
Brilliantly: Of course. We’re observing these conversations happening within our community. From what I’ve seen, it feels like women are trying to find a way to feel less out of control. Many of the passionate discussions focus on things that feel like some part of this experience they can control, like food, or skincare, or working out, or picking the right care team. Many of us pick a thing to hold on to so we have some power over what’s happening.
Irina: Exactly. For me it was picking my doctors. I went to three doctors before confirming my plan. I needed chemo, and I needed a mastectomy.
Brilliantly: So you were eventually able to find a team that you like and trust?
Irina: Yes. It took a while, but I found a doctor who understood how to assess my risk with the proper testing. Because remember, if you're BRCA, you have a high risk of contralateral breast cancer, too—up to 64% chance of contralateral breast cancer.
Brilliantly: What are your thoughts on the pancreatic risks? Is that something you worry about being BRCA positive? Are there other things, now that you've taken care of your breasts and your ovaries that still worry you?
Irina: I'm never gonna stop worrying. Once you're diagnosed with cancer, that worry never leaves your mind. If I have a little twitch or a minor illness, I worry it’s metastatic cancer. I was having pain in my jaw. I was so worried that my cancer came back. Thank God I have TMJ. I went to an EMT, and found out it’s TMJ from stress.
Brilliantly: What do they do for pancreatic screening?
Irina: I don't get pancreatic screening, but if you have a family history and if you're a certain age, there are programs, like at Sloan Kettering, for pancreatic cancer screening.
Brilliantly: I believe you have to be over 40.
Irina: I'm 47. I do qualify, but I don't think I can handle any more testing right now. I worry about melanoma, ocular melanoma, and colon cancer. It’s so much. It's a never-ending battle.
Brilliantly: Yes, Were you part of any online communities when you first got diagnosed or found out you had BRCA? Or did your platform start after your treatment?
Irina: In the midst of chemo, I joined some groups, and quickly realized that I was going to start my own group. I want to be able to express myself and swear! I want to be able to complain in the way I want when I feel like complaining.
Brilliantly: And how does running Mutant Strong serve you?
Irina: I like educating other people, making women feel less alone, and giving them a community.
There's nothing that makes me happier than educating people on BRCA and risks that indicate they should have genetic testing. I tell people all the time that BRCA does not always present itself in breast or ovarian cancers. And only 50% of people who are BRCA carriers will develop cancer. Many times I talk to women about the men in their family who’ve had cancer and how that can increase your risk. It’s frustrating because not all doctors know all the risks and family history that is linked to hereditary cancers.
Brilliantly: Right, it’s so important to know your family history and when to talk to a genetic counselor.
Irina: I believe if you have any family history, the first thing to do is see a genetic counselor.
They are trained to assess risk. A doctor doesn't have the time or the capacity to sit with you for an hour and a half. That's how long my genetic counselor sat with me. Twice. I'm Ashkenazi Jewish, 1 out of 40 Ashkenazi Jews carry BRCA mutation. We're the smallest population with the highest risk. But, not all people with BRCA are Ashkenazi. That is a huge misconception that I'd like to clear up. Anyone, people of all races and religions, can have a genetic mutation.
Brilliantly: Right, mutations and cancer are color blind. And many people are un- or misinformed.
I love seeing online how you’re constantly educating people and showcasing yourself. Are there people who you've met and taken under your wing or become friends with?
Irina: Absolutely. I have made friends with women who I’ve become very close with. Now I talk to their daughters who are BRCA positive, too.
Brilliantly: Do you have a piece of advice for women who are just finding out, who are just beginning the process?
Irina: Absolutely. If you don't like your doctor, go find another doctor. Go get a second opinion, go get a third opinion. If you don't like what they're telling you, the reconstructive surgeon, go find yourself somebody else. Don't settle. Educate yourself. Join groups, whether it's Facebook, Instagram. Talk to people. Also, very importantly, you're still beautiful.
You're still a woman whether you have breasts or you don't. It’s your choice to have reconstruction or not. Surround yourself with people who are supportive. You will be okay, and you are not alone.