Community Shares: What Was Helpful To You?
We work to empower people living with metastatic breast cancer (MBC) and their caregivers to take control of this disease by providing a platform to learn, educate, and connect with peers and healthcare professionals. To do so, we often highlight people in the MBC community so that they can share their stories with others. In this newest piece, we asked those who visit AdvancedBreastCancer.net, our Facebook page, and Instagram to answer a few questions about their diagnosis, what information was most helpful when they were newly diagnosed, and how online support has helped them. Check out some of their responses below.
Editorial note: Abbreviations used in this post include BI-RADS = Breast Imaging Reporting and Data System, CT = computed tomography, DX = diagnosis, mets = metastasis, MRI = magnetic resonance imaging, and PET = positron emission tomography.
How and when were you diagnosed with advanced or metastatic breast cancer?
"I went for my yearly mammogram and it was found there. I had no knots, no pain. One day I was taking care of my body, and bam! the mammogram showed a BIRADS of 5. I was sent for another mammogram using a sonogram and then sent to have a biopsy on my 68th birthday. Yes, I was told on my birthday I had breast cancer." – AdvancedBreastCancer.net Community Member
- "Through mammogram, CT scan, and bone scan. In May of 2022."
- "DX for MBC in March 2020, right before the Covid-19 shutdown! I'd fought for about a year to have biopsy of my sternum. Yup, Stage IV mets to bones."
- "About 3 hours after having my yearly mammogram, the radiologist saw a mass that needed to be checked out. I knew right away that it was cancer."
- "Eight months after DX of stage 0-1 and seemingly successful treatment of chemo, surgery, and radiation, I had a seizure. MRI showed stage 4 mets to the brain. I'm always embarrassed to think about all the celebration of being 'cured' and too naive in thinking it was truly over...what a nightmare it has been. Cancer is insidious."
- "July 11th, 2012, with stage 4 mets to bone. Through a mammogram, breast MRI, and PET scan. Treatments worked, and I am currently no evidence of disease."
Did you seek out a second (or third) opinion after you were diagnosed?
What different types of information and support were most helpful when you were newly diagnosed?
"When I was newly diagnosed the first time, I immersed myself in the information. I really liked the Young Survival Coalition (YSC) at the time, although I felt like I wasn’t necessarily in that category. The second time, I immersed myself in the MBC community, and it has helped a lot." – AdvancedBreastCancer.net Health Leader
- "Family was my best support."
- "Finding MBC groups on Facebook and meeting fellow MBC sisters in person."
- "The support from the doctors, my family, and my work family has been tremendous."
- "The brilliant oncology social workers at my cancer center."
- "Google and metastatic online groups."
Who do you lean on for support? (select all that apply!)
What are your favorite parts about AdvancedBreastCancer.net?
"After 6 1/2 years of living with stage 4 metastatic breast cancer, I finally feel ready to read other people’s stories and share my story. For 6 years, I suffered terribly with chemo brain. My mind was in a total fog. I could not think, read, carry on a conversation…on and on. I became very quiet and did not talk much. Then one day my mind began to clear some. I will never be 💯 again, but I can think and even carry on a conversation. I had been dizzy and it pretty much left. The exhaustion got better. I began to feel like me a little. I have other side effects, but this was a step forward. It has been good for me to hear that others are experiencing the same side effects as me. I appreciate this site." – Facebook Community Member
- "The stories I read."
- "Other women who understand."
- "The feeling of family where everyone has been there and can relate and give advice."
- "To know that I am not on an island alone. There are plenty of people with the same problems."
- "Help in dealing with chemo and radiation symptoms!"
- "Contact with other women also living with MBC, the Zoom webinars that provide me more information, tips, advice & understanding. I have gotten information I should have gotten from my Dr."
What type of articles would you like to see more of on AdvancedBreastCancer.net (aBC)?
How has online support has helped you?
"It has validated how I feel, that I am not the only one experiencing the things that are happening to me since my diagnosis. It was difficult getting a cancer diagnosis at the beginning of the pandemic. It seemed like the American Cancer Society closed their doors, rolled up the welcome mats, and forced us to fend for ourselves with no support services. It was a blessing to run across this group because some days I just needed validation." -Facebook Community Member
- "Reading stories of other families."
- "Online support is wonderful. I can work and if I have a question or wonder if what I'm going through is normal, I just pull this site up and voila, I find the answer."
- "At times, it can be a source of useful information."
- "Helps me feel informed and connected."
- "I had breast cancer surgery just before the pandemic started 2/2020 and not much medical help available. Took until May to see a doctor so these groups were immensely important."
- "The community 💙"
How many followers do we have on Instagram?
Thank you to all of our community members who take the time to read and respond to the stories, prompts, and articles that you find on our various platforms. Wherever you are plugging in from, we're so glad that we can serve as a resource and support for you.
Do you find it easy to advocate for yourself?