Community Member Spotlight: Lisa H.

Lisa shares with our team her denovo metastatic breast cancer diagnosis experience.

MBC statistics

How & when were you diagnosed with metastatic breast cancer?

In the summer of 2019, my purse strap kept bothering me. It felt like the buckle on the strap was digging into me, but there was no buckle. When I investigated further and felt around, I discovered a very obvious lump. My last mammogram had been in November so I figured whatever it was, it would be caught early. The first tests showed the cancer was only in my breast and hadn’t spread to my lymph nodes. Being a numbers person, I comforted myself with stats and data -- I had regular mammograms, most early breast cancers were treatable with a high survival rate, only 20% of breast biopsies are cancer. As I continued with more appointments and tests I kept hoping for a stage 1 or 2 diagnosis. When my oncologist recommended a CT scan and a bone scan. I figured this was typical to make sure the cancer hadn’t spread, but what I didn’t realize was that she suspected my cancer was stage 4. After the scans, we found out the cancer had skipped my lymph nodes altogether and went to my bones and we finally had my diagnosis - stage 4 de novo. I had now joined the ranks of the only 6% of women who are diagnosed de novo. I somehow ended up on the wrong end of the stats.

Coping with a stage 4 diagnosis

What information/support was most helpful for you when you were newly diagnosed?

When I was first diagnosed the most helpful information and support were the online groups where I could go back and forth between information on the different stages of breast cancer. I tried to get into some of the Facebook groups, but because I didn’t know what stage my cancer was and my diagnosis was changing, I couldn’t even answer the questions correctly to get into the groups. The more open forums allowed me to jump back and forth as we figured out more about my cancer along the way and I was able to find the information I needed.

Online metastatic breast cancer support

What's your favorite part about AdvancedBreastCancer.net? How has online support helped you?

Online support is so helpful because you can not only find the answers to questions you have, but you can find the answers to questions you didn’t know you should have! Since I was diagnosed de novo, I didn’t have any experience with breast cancer and I had to do a lot of catching up on all the lingo, medicines, terms -- you name it! As I tried to wrap my head around it all, I tried to ask questions, but I often didn’t even know what to ask. The community and information on AdvancedBreastCancer helped me along the way providing info I was and wasn’t searching for!

Sharing advice with the newly diagnosed

What 3 pieces of advice would you give to someone who is newly diagnosed with metastatic breast cancer?

You don’t have to make every decision right now. Give yourself time to adjust and see how things are going to go. This is especially important when deciding things such as whether you should tell more than a small group of family and friends or if you should quit your job. Give yourself time to process things, to get your treatment under control, and then make some of those decisions. If you are unsure of things that can wait, then wait.

Find a local cancer support center (or find one online) and find what will give you the support you need. The centers not only offer support groups but lots of classes and other forms of support that you may find even more helpful. There are classes for writing and journaling, exercising, yoga, art therapy, and even music therapy. Online or in-person support groups may not be for you, but there are alternatives you may find helpful and supportive.

Find reliable sources for information on treatments, side effects, and medicines. One of the first websites my oncologist recommended to me was cancer.net. From there I found other resources like Advanced Breast Cancer to help with my research. Friends and family may send you all kinds of information and links they have found while randomly surfing the web, but be sure the information is from a reliable source!