Tag Archives: statistics

Metastatic Breast Cancer Awareness Day

October 13, 2025

Today is Metastatic Breast Cancer Awareness Day. We get this one day in breast cancer awareness month to shine a light on MBC.

1 in 3 of women cured of breast cancer
will be diagnosed as stage IV (MBC), which is terminal.

If we cure Stage IV, we cure all breast cancer.

In support of raising awareness for MBC, I went to Washington D.C. last week and participated in the METAvivor Stage IV Stampede and Summit.

The Summit included a day of education about MBC as well as how to advocate for various bills and funding.

Tuesday we marched (with police escort) from our hotel to the Capitol. We had a remembrance on the grass. I am holding the sign on the end, near the last “R”. We spoke the names of those who have died from MBC (and I included my aunt Jeanne Moretti as well as several other friends who have passed).

Policy advocates preparing to visit with Congressional staffers.

We met with staffers of our elected representatives. Staffers were taking meetings even though the House was not in session and the federal government was/is closed.

Staffer from Rep. Joe Neguse’s office.
Staffer from Senator Bennet’s office.

There were four “asks” that we made. I had fantastic interactions and felt like I was heard. I’ll share here what those asks were – if you feel compelled to share with friends/family or to reach out to your own elected representatives that would mean a lot.

  • Did you know that if you have MBC and need to stop working there is 5-month waiting period for Social Security Disability Insurance (SSDI) benefits to start? In addition, after that there is a 24-month waiting period before you are eligible for Medicare! I am one of the fortunate people who is living longer with my MBC diagnosis and can still work. Women with different subtypes have a prognosis of 2-3 years. During this time they can’t work and can’t get SSDI or Medicare. House bill 2048 “Metastatic Breast Cancer Access to Care Act” would eliminate the waiting period.
  • Did you know that where you live impacts how private insurance pays for MBC drugs? Private insurance treats medication received at a cancer center different from medication taken at home. Recall that I was on a pill (Ibrance) for the first 4 years. I live in a state where private insurance is required to pay for this (chemo) regardless of how it is given: intravenous or a pill. House bill 4101 (Cancer Drug Parity Act) would require private insurance to cover oral cancer drugs the same as IV drugs, regardless of what state you live in.
  • The U.S. is the largest funder in the world of cancer research. The administration’s budget zeroed out some breast cancer research programs and greatly reduced funding for the National Institutes of Health (NIH). Fortunately, Congress likes science – we asked them to provide the NIH with the same funding as last year and restore the breast cancer program in the Dept. of Defense.
  • Did you know there is a national database of incidence of cancer? It was created in the ‘70s during the Nixon administration. Unfortunately, it has not been updated since then. The Surveillance, Epidemiology and End Results (SEER) database provides information on cancer statistics which is used to inform where research dollars should go. It needs to be updated badly and I asked our reps to support funding for it. SEER help us understand where there is a high burden of cancer. It turns out that not every state is contributing to it. In addition, it does not include any recurrence of cancer. When I was first diagnosed, my information was put into SEER (LCIS and stage 0 DCIS breast cancer). However, there is no mechanism to update my information! According to SEER I was treated in 2009 and all is good with me. As you can see, the number of people with MBC or with any recurrent cancer are not counted which means we have no idea who is living with metastatic disease (unless you were diagnosed with MBC right away, which is only 6% of all MBC diagnoses).

That was a lot! If you are still reading, thank you. If you’d like more information about anything including language to send to your elected representatives, shoot me an email (charlevo@gmail.com).

I have one other cancer event this week and then I will take a break from cancer the rest of this month. I hope you are keeping balance in your life as well.

Onward!

1. Donate to research for MBC via METAvivor.

2. Find your Congressional representatives: House & Senate

March 27 – doing life right

March 27, 2022

On March 27, 2009 I was 39 years old.

Our girls were 2 and 5.

We lived in Illinois and had accepted jobs in Colorado.

We were selling our brand new home and house hunting in Colorado while working full time and part-time remotely in our new jobs.

Glen was planning for an 8 week field campaign for late spring.

And I was dealing with breast cancer during all this.

March 27 I had a single mastectomy and we thought we were on the road to putting this all behind it.

This morning I looked at my “Facebook memories” like I do each morning and was sad. And it’s ok to be sad, for a little while.

A post on Facebook back in 2011.
2012 Facebook post. I still think Young Survival Coalition is amazing!

And yet….here we are.

Thinking back to 2009, I did become aware of the statistic that 30% of breast cancer “survivors” who are ‘cured’ have it come back as metastatic, uncurable.

I also firmly believed I was not going to be in that small, elite group.

I have to say, this is the worst club I’ve ever belonged to, and it has the most amazing individuals.

Reflecting on what I would do differently over the past 13 years….not much.

I eat healthy, I could have exercised more (who couldn’t?!) I prioritized sleep around 2015 — so yay me. My focus has been on my family and my career.

I see many people with a cancer diagnosis, including metastatic breast cancer (MBC) comment that their diagnosis “changed their life”. It caused them to reprioritize. It helped them focus.

With all due respect, they were doing life wrong.

A cancer diagnosis shouldn’t make you change your life. You should make those changes now. I didn’t need cancer to ‘show me the light’.

Take care of yourself.

Eat healthy (Eat food. Not too much. Mostly plants. -M. Pollan). Move your body. Spend time with people you care about. Have a hobby and spend time doing things you enjoy (and yes, that can be work, but not all work).

Am I more cognizant of my choices with my MBC diagnosis? Yes, of course.

Is MBC at the center of all decisions I make? No, of course not.

I never, ever thought this would be my life. It changes on a dime as many of us know. I’m not brave or strong (maybe a little). I’m living the life I was dealt.

Make the most of your time on this planet. You don’t get a second chance.