Finding support in online groups: JoAnna Carrillo

Soon after JoAnna Carrillo, of Long Beach, California, was diagnosed at 33 with stage II breast cancer, she was matched with a peer mentor through a program at her cancer center. JoAnna’s mentor was also 33 and had experienced breast cancer treatment 5 years before. Her mentor encouraged JoAnna to find support by joining online groups of young women affected by the disease.

JoAnna talked with LBBC contributing writer Robin Warshaw about her experience finding, and giving, support online.

Robin: You had just started your first treatment, chemotherapy, when you went online for support. How did those early visits go for you?

JoAnna: At the beginning of my chemotherapy, everything was just overwhelming. There were so many emotions going on. Online, I was reading other people’s stories. And I was feeling, “I don’t want to read anything about cancer. I don’t want to hear anything about cancer.”

Robin: Before chemotherapy ended, you decided to go back online. Why?

JoAnna: I had a lot of questions. So I joined back [online] and it really helped me tremendously.

I asked about feeling nauseated and throwing up – if that was normal. The clinic had talked to me about it but I was really sick, throwing up for 3 weeks straight. They admitted me and I was in the hospital for 2 days … There [were] a couple people [online who] had the same thing and they had to be hospitalized, too.

The chemo was the worst for me, not being able to eat, and water tasted disgusting. I asked [the online groups] about those things — when did they get their taste back after treatment, what can I use to make water taste better.

After surgery [a bilateral mastectomy], I would go on there and ask about how many weeks they had their drains in. I asked about when can you lift your arm and utilize your arm more.

Robin: What kinds of responses did you get?

JoAnna: People giving me advice, showing support for me. Everyone’s so kind online, it’s amazing.

After surgery, I asked about what do they use to help carry their drains. Somebody said, “Oh, I have these bags. I can send them to you.” …  After I was done and my drains came out, I sent the bags to another young lady.

I had a lady send me a nice card and all these girls signed it. Everybody’s really nice and supportive.

Whenever I have a question about something, or I’m curious about what an outcome is, I ask. It’s so useful, because there’s so many [women affected by breast cancer]. We all know what we’re going through. I don’t want to ever feel alone.

Robin: Although you still have radiation and reconstruction completion ahead, do you find you’re now giving information to others as much as asking for help?

JoAnna: Yeah. There’s a lot of [women] that are having their surgery coming up pretty soon. Or they’re starting chemo or getting a port put in. They ask for advice and I like to give them my input on what they can expect.

Robin: Which online groups do you visit?

JoAnna: I joined Facebook groups: LBBC’s Breast Cancer Support for Young Women, After Breast Cancer – Support the Girls! and a group my mentor runs, YSC – Long Beach.

Robin: Have you gone to an in-person support group?

JoAnna: Yeah, it’s run by the social worker at the cancer center. I was in treatment, so not feeling that great. When I started hearing everyone else, it gave me an overwhelming feeling, like, “I can’t believe this is happening. I can’t believe I’m here, listening to these stories.”

I would go home and say, “I’m not going to those meetings anymore. It’s too much.” But the last one wasn’t so bad. I go every couple of months. I usually just stay quiet and listen to everyone else. It’s totally different online.

Robin: For you, what have been the benefits of taking part in online groups?

JoAnna: Online, there’s a lot of ladies giving positive suggestions, a lot of positive energy, which I love.

I heard about the Look Good Feel Better class there and about different organizations that can help you financially. I’m praying that I can go back to work [in a busy supermarket] in a couple months. I just can’t wait to go back to that, back to a normal life.

The online groups have helped me because I feel like I’m not alone in this situation. There’s [women] my age and older, people who actually care about other women, not just putting them down. I feel so at ease. It’s an ugly battle to be fighting, but you’re not alone.

Join LBBC on our two closed Facebook groups for women with breast cancer: Breast Cancer Support for Young Women and Breast Cancer Support: All Ages, All Stages.

This article was supported by the Grant or Cooperative Agreement Number 1 U58 DP005403, funded by the Centers for Disease Control and Prevention. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the Centers for Disease Control and Prevention or the Department of Health and Human Services.