Triple-Negative Breast Cancer Series - Things to Know If You Are Newly Diagnosed
Here is the newest article in our “Ask-the-Advocate” series talking about triple-negative breast cancer with Sarah Kelly and Melissa Berry. Check out the other two articles in these series on other important topics like diagnosis and advocacy.
What are three things that you guys would say to somebody who is newly diagnosed with triple-negative breast cancer?
Make sure you get a second opinion
I feel it is super important that for any kind of cancer diagnosis that you are able to hear opinions from several different sources to determine the most appropriate options for you. It is also another way to confirm your current treatment plan and make sure both doctors are on the same page. If there are different recommendations it is important to understand why. I wish I had done that sooner.
Ask as many questions as you can
Keep a notebook whenever you go to any of your doctor's appointments. Take notes, keep a journal, and bring somebody with you as well for your doctor's appointments because you're going to be going through a complete fog in the beginning, and you're not going to actually hear what the doctors are telling you. It's really important to bring somebody with you to do this as well as to ask questions.
Make sure that you're able to lean on family and friends because it's an emotional journey as well. I don't think anybody tells you that. Triple-negative breast cancer doesn't have treatment options so if your body doesn't respond to initial treatment, or there is fear of recurrence, this can be really difficult. It is important to make sure that you're taking care of yourself at the end of the day. Thankfully there are amazing treatments in the pipeline right now. I always thank God that I was diagnosed at this time in history with breast cancer because there are so many amazing things being done to help us. I found some of the best support in connection through support groups.
Getting started with a support group
In terms of a support group, I didn't go at first. I remember my sister, Leah, telling me I should go to a support group. Going to a support group and listening to other people talk about their diagnosis, was a really scary thought for me. Focusing on myself, my new baby, and my 14-month-old was enough, and the idea of joining a support group was not something that I could wrap my head around being part of initially. Once I completed my treatment, about a year after I was diagnosed, I was ready to start talking.
I moved up to Maine after I finished the chemo right before radiation. I think we were crazy at that time. We moved from Boston up to Maine. I went to this dinner, which was with my sister, and there were a bunch of nurses there. One of the nurses ran the support group and she was like, "You should come." I did, and it was the best thing I'd ever done. I was listening to women that were going through exactly what I had gone through, and no one else really understood what I had gone through before that. I think you have to do it on your own time when you're ready to accept what you're hearing, and when it's not as scary for you. I think a group or whatever kind of therapy or support you find where you can open your heart is something you should consider being a part of.
My three pieces of advice for someone who is newly diagnosed with triple-negative breast cancer is below:
Don't use "Dr. Google"
I think it's so tempting and I did it myself. I read everything about triple-negative breast cancer, and I scared myself because every case is different. Every diagnosis is different. Your doctor is your best resource. I don't advise searching the internet to figure out what your prognosis is. I think the Internet is great for other things, but not for that.
Take care of you
Self-care, patience, and flexibility from your family, from your boss, and from your coworkers is critical. Ensure you are communicating what you need to take care of yourself. Self-care is really important.
The other piece of advice I have is to connect to a community. I was never a convention goer before I had breast cancer, and now I really enjoy going to conventions and connecting with other survivors and breast cancer patients. I think that it's a good way to make friends, and, also connect with others who are going through something similar. Triple-negative breast cancer can be lonely. It's a really good idea to get yourself to connect with the community whether it's online, at a convention, or going to a local group in-person group.
Caregivers: Do you practice self-care?