TNBC Aware: Education and Support Through Virtual Community
Today, March 3, marks Triple-Negative Breast Awareness Day. LBBC is marking the day with a Twitter Chat and an . Jennifer Stringer Staggs kicks of our series with a post about being newly diagnosed with triple-negative breast cancer, worrying about her daughter and sister, and finding support and community online.
When my provider told me that I had triple-negative breast cancer, I was overwhelmed. Before learning my diagnosis, I Googled the different kinds and triple negative scared me the most. I read a lot about this type of breast cancer, and was told a lot of things that scared me. For example, I heard that if I had triple-negative that my chances of survival would be less than if it was hormone-sensitive, and that there was more of a chance it was genetic and could be passed on to my children.
My provider gave me a lot of information, but I found the best information going on Facebook and finding breast cancer forums. Diagnosed at age 29, I did not want to go to a local support group that had a huge age gap. It was a lot easier for me to get information and support online because everyone there either wanted the same information or already went through it. It felt more like a sisterhood in the forums. Nobody judged the questions I had and they were able to tell me what to expect from the treatments I was about to receive.
I got some of the best information going to Living Beyond Breast Cancer’s Fall Conference. I listened to professionals explain what triple-negative meant and what kind of treatments and side effects to expect. They also had an expert speaking about young women going through all of this and what to expect from “chemopause” and changes in your sex drive. I learned so much information there that none of my doctors covered.
Having triple-negative breast cancer made me very concerned for my daughter and my sisters and their kids. I worry they could still get cancer, even though I tested negative for the BRCA gene. I don’t want any of them to have to go through what I have had to endure.
The fear for recurrence is another thing that has affected me a lot since I was diagnosed and now finished with treatment. I hate that there is no maintenance appointments, that we’re just “done.” When I was done with chemo I felt like I was written off. Basically you’re done and they check up on you every few months. The lack of control you have after treatment just leaves you feeling like you’re in limbo. I wish that there was a better way for people diagnosed with triple-negative breast cancer to stay on top of it and be proactive. I’m scared that one day it will reappear without any notice and spread. Hopefully soon the doctors will come up with a targeted treatment for triple negative and find out what it is causing it.
Those worries aside, I have dealt with it all through the support of my family and friends. I will keep pushing and living my best and try to push the fear to the back because I cannot stop living my life in anticipation of what may or may not happen. If it was not for my family and friends support, I would not have been able to cope with all of this. They always remind me just how strong I am.
The fact that I can use my knowledge to help other people and doctors has pushed me to keep on living and never give up. I have spoken at my local Relay for Life event, helped with the breast cancer event at my college, and am about to start a breast cancer support group for other young women. I’m doing my best to educate everyone on different types of breast cancer and share some very valuable information that I have learned.
Like I said earlier, the best way I was able to get my questions answered and feel at home was in breast cancer support groups on Facebook. A few of the groups I visit are “Breast Cancer Support Group”, “My Breast Cancer Sisters”, “Young Woman With Breast Cancer”, and a new group through Living Beyond Cancer called, “LBBC Young Women’s Initiative”. I never felt judged on any of those groups or felt that my questions were not valid. It was so nice to compare notes with other triple-negative survivors and see how well they’re doing. It gives me hope to see a survivor 20 years in and still doing great. I never felt alone when all of my questions or rants could be answered one click away.
Throughout my entire treatment and surgeries, I remained a fulltime student at my local college and took care of my seven-year-old daughter. I did not let cancer get the best of me. I decided I was not going to sit around and feel bad for myself. I went to class every day and passed all my classes. Being that I’m younger than the typical person who gets cancer, a lot of people thought that I was just fine. I did struggle, but I did not want to let it win I didn’t have any extra resources beyond online support – I felt like I was expected to use Google if I had any questions. And I did: I looked up every single thing possible to find out as much information I could about triple-negative breast cancer. I’m pretty sure at the end of my sixteen rounds of chemo I knew more than my doctor did about my type of cancer. LBBC actually gave me the most information about having triple-negative disease and being young with cancer. They gave me a packet with so much information in it that I handed out the information to my local doctors so they could learn more, too.
I hope every day that I’ll see a cure for cancer in my lifetime. As for me, I finished my chemo in November of 2014, and in March I will have my breast reconstruction and then be all done.
Jennifer Stringer Staggs is 30 years old and lives in Grants Pass, Oregon. She’s a full-time college student and will be graduating later this year for juvenile corrections. Jennifer was also trained through LBBC’s Young Advocate program at the 2014 Fall Conference.