Hi everyone. Spring is trying to push through here in Colorado and in many places where you live as well, and it hasn’t quite happened. We keep bouncing between sunny and 60 and 35 and snow.
Spring is also the time when the Federal government sets spending priorities for the fiscal year.
I’m asking you to please fill out this simple online form to ask your elected representatives to support increased research funding for metastatic research. (Any metastatic disease is not curable and needs more research!)
Enter your name, address and email and you will be taken to a template for each of your representatives. You will be asked for a “letter topic”. I selected “health care” from the drop down menu.
There is a message already written. You can use the template as is, or personalize it. Go ahead and tell them you know someone with metastatic breast cancer and that there needs to be more funding for research to find a cure! Make it as personal as you can.
Thank you in advance. Requests sent before April 30 will be most impactful.
October is coming to a close and so is Breast Cancer Action Month.
If the month slipped away from you, do not fret! There is one very simple thing you can do.
Please go to this link and click Take Action. The form will send a message to your elected federal officials (Senators and your Representative) asking them to support two bills I hope Congress will pass. You will need to enter your street address so they can find your elected Representative.
Right now those of us diagnosed with MBC (a terminal illness) have to wait a minimum of 5 months to receive disability assistance through Social Security, and, you have to wait 2 years to qualify for Medicare.
The Metastatic Breast Cancer Access to Care Act (House bill 3183 and Senate bill 1312) would eliminate the 5-month Social Security Disability Waiting Period and the subsequent 24-month Medicare waiting period for individuals with metastatic breast cancer.
The second bill is the Cancer Drug Parity Act (House bill 4385 and Senate bill 3080). In a nutshell, this bill requires insurance plans to cover cancer medications taken at home instead of at a cancer center/hospital. For example, I’m on an oral medication that I take at home – Ibrance. Right now, insurance companies are not required to approve – or pay for – cancer medications that are taken at home.
I know this might seem overwhelming if you are not used to looking at bills and legislation. Please know that many individuals are dedicated to making it easy for us all to participate in our democracy and let our elected officials know what is important.
On a personal note, I see the oncologist later this week. I had scans last week and will learn at my next appointment if the medications are keeping the cancer quiet. More soon.
October is Breast Cancer Awareness (Action) Month.
October 13 is Metastatic Breast Cancer Awareness Day. We get one day.
Metastatic Breast Cancer has it’s own ribbon: green, teal and pink. The green represents renewal, hope and immortality, teal symbolizes healing and spirituality, and pink signifies the metastatic cancer originated in the breast.
Tonight, landmarks across the U.S. will light up in the green, teal, and pink. The #LightUpMBC campaign, by Metavivor, is raising both awareness of and money for research of MBC. You can learn more about the #LightUpMBC campaign here. Find a landmark near you!
MBC does not discriminate. Anyone can get it.
Approximately 30% of early stage breast cancer survivors will have a recurrence as metastatic disease, even after completing successful treatment. I was “successfully” treated for Stage 0 breast cancer in 2009, only to have it return as stage 4 in 2019.
685,000 people a year die from metastatic breast cancer globally. In the U.S. ~42,000 people die annually, that is 115 people every day.
Right now it is estimated that only 22% of U.S. MBC patients live longer than 5 years, and only 11% of live longer than 10 years. (I’m confident this number is now higher and more and more people are living longer due to advances in research and treatment and how the survival number is calculated.)
However, there is NO CURE for MBC.
I will be taking medication for the rest of my life. Eventually the cancer figures out how to outsmart the medication so you have to move to another option. We need more research for both treatment options and something to get us to a cure.
In the late 1970s my dear aunt, Jeanne, died from Metastatic Breast Cancer. She was treated in the 60s, “cured,” with a recurrence that was terminal. Fast forward 40+ years. Still no cure. More people (mostly women, but men also) dying annually from MBC.
On a personal note: yesterday I went back to the cancer center to have bloodwork checked. My immune system has recovered enough to start taking Ibrance again. I’ll have another check in 3 weeks where they will determine if I can stay on the same dose, or need to reduce.
I’ll have scans before that appointment to see if all the medications are working to keep the cancer quiet.
I had an MRI of my back last week to try to figure out why I have intermittent, debilitating pain. No new information. Very frustrating. Fortunately for the moment, my back is feeling better.
Summer has always been my favorite season – it’s warm, sunny, and my birthday is in the first part of it.
Growing up in Wisconsin, fall meant cold and snow. Now fall means spending 31 days with everything awash in pink for breast cancer awareness month. …I’m not liking fall even more now.
Don’t get me wrong, awareness of breast cancer is important – critical. Even more important is that we find a cure. The only way to find a cure is to fund research. “Awareness” ≠ “ending breast cancer”.
We need to make October Breast Cancer Action Month. But be cautious in how you act and what you support.
Pink and the ribbon are great ways for companies to make money – often without doing anything to actually help support breast cancer research or those dealing with it.
When I first moved to Colorado I saw there was an option for a breast cancer license plate. I asked where the additional $50/year for that plate went. They responded that by having it on cars they were raising awareness. Nice idea, but not really helpful. $0 toward breast cancer and $50 to the DMV.
If you are looking to support the cause this October, ask questions about where your hard earned dollars are going. Please consider supporting organizations that focus on research and in particular research for metastatic (stage 4) breast cancer. Metastatic breast cancer is the only one that kills. If you cure stage 4 breast cancer, you cure all breast cancer.
My current top 5 organizations — with a focus on Metastatic Breast Cancer (MBC). Reach out if you want more info. I could talk all day long about this!
Breast Cancer Research Fund: Dedicated to ending breast cancer through support of research; 40% of their research dollars go toward MBC (close to $20 million annually). Every dollar donated this month will be matched – you can have twice the impact!
Metavivor: The only organization dedicated to MBC research and support. In particular check out the #LightUpMBC campaign where landmarks across the country will be lit up in the colors of MBC (teal, green and pink).
Lobular Breast Cancer Alliance: Alliance of organizations, doctors, patients, and allies dedicated to learning more about lobular breast cancer. Invasive lobular breast cancer typically does not form a lump and is difficult to detect on imaging, so difficult to diagnose.
Living Beyond Breast Cancer: Resources to help people impacted by breast cancer, especially those living with MBC and those diagnosed under 40.
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.
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.
Where to start – I had scans on Monday, March 7. The fantastic news is that both my bone scan and CT scan were stable! What does that mean? Based on the imaging it looks like the cancer is quiet in my skeleton and it does not appear to have spread elsewhere. Yay! The oncologist uses the scans as the measure of how well the medication is working so – we stay the course. Same medication, go back monthly for checks. Scans again in 3 months.
Every month I also get blood drawn for a tumor marker test (CA 27-29). The blood tests may or may not be reliable as an indicator of cancer activity. My oncologist orders this test but doesn’t make treatment decisions based on it alone.
A CA 27-29 value of under 38 means no active cancer. At diagnosis I was 122. As I’ve mentioned previously, my numbers dropped to a low of 42 in February of 2020 and have been rising steadily since then. This past month it jumped a lot. The most it ever had. I’m not going to lie, it freaked me out. That number is now at 185. (Note, numbers can vary wildly, I know some MBC patients with values around 3,000.)
Why worry about this if the data might not be reliable?
Well, I have invasive lobular breast cancer. The cancer is missing an enzyme and so instead of forming in a mass, it forms in a string. This means that lobular breast cancer doesn’t generally show up on scans.
So, is the tumor marker rising because it’s just not reliable for me? Or is it rising because the lobular cancer is active but just not visible on scans?
We just simply don’t know. Lobular breast cancer is a very distinct subtype and also very understudied. As a result, it is treated just like the more common ductal cancer.
In the meantime, I continue to work, walk and spend a lot of time with the family. We took a few days to go up to the mountains to ski with family and it was fantastic to be able to go do that.
Take care of yourselves. Get vaccinated and boosted and really live today!
Living with cancer shines a light on many things that the average person is not aware of.
In America, our health insurance is largely tied to our jobs. If you get a cancer diagnosis you may not be able to work and therefore lose your insurance. The irony is that when you need insurance most, it’s hardest to get.
Did you know that If you have stage 4 breast cancer and need Medicare there is a 24-month waiting period? There is also a 5-month waiting period for Social Security Disability Insurance benefits.
Statistics on how long people survive with stage 4 breast cancer is unclear*. Previous statistics showed the average survival rate was 2-3 years. Yet there is a 24 month waiting period to get Medicare coverage. See the math problem here?
You can help me get the attention of lawmakers. It doesn’t even require a phone call.
The Metastatic Breast Cancer Access to Care Act (S. 1312/H.R. 3183) would amend the Social Security Act to eliminate waiting periods for social security disability insurance benefits (SSDI) and Medicare coverage for eligible individuals with metastatic breast cancer.
You can support this act by filling out this online form. It will generate a letter to your elected representatives. I just did this and it took all of 5 minutes. Click on the text below.
*Survival rates for stage 4 breast cancer is messy. The introduction of CDK 4/6 inhibitors in 2015 was a game changer. It increased life expectancy significantly. In addition, people diagnosed with stage 4 breast cancer are not counted in national statistics until they succumb to the disease. That is another post by itself.