Category: Advocacy

The Case for a “Disability Card”

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I recently was granted a permanent handicap pass for my vehicle. I live in a city with limited parking and lots of hills. The pass is nice to have when fatigue hits and having a close parking spot to your destination really helps.

We also have mass transit and on most buses and trains there is a section of seats that are designated for the “elderly and disabled”. Some of the trains and buses frequently get very crowded, forcing people to stand shoulder to shoulder as the bus or train bumps and grinds along. Those designated “special” seats soon have many people jockeying for an opportunity to plop down in them.

Although I have MBC, I don’t look the part of a cancer patient. Most people don’t have any idea that I have this disease. I’m also relatively young so on the outside I can easily pass for being a healthy person.

However, that doesn’t address how I might be feeling on the inside. The drugs that I take to stay alive beat down on my immune system. This produces fatigue and there are times that standing takes all of what little energy might be left. There are also many MBC patients who have debilitating bone pain from having bone metastasis. You don’t see that on the outside.

There have been times on the train and bus where I sat in those special seats and felt judging eyes on me. I wished I had a sign that stated to these people that I was disabled and deserved to sit in those seats.

That made me think that maybe we could use a “disability card” – something that you might wear around your neck. These could be distributed in the same way that handicap passes are handled. It could be simple. Just have your name and photo for identification. They could be used to identify disabled people for seats on public transporation, special seats in theatres and stadiums, and anywhere else with “accessible” seating for disabled patrons.

What do you think?

Bones versus Organs

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In a recent post in one of my metastatic breast cancer Facebook groups, someone stated that those MBC patients whose breast cancer metastasized to their bones lived longer but were in more pain versus those whose breast cancer metastasized to an organ (eg. liver, lungs, brain) would die sooner but have less ongoing pain. My mets are to my liver and currently, I don’t experience pain from them. So, in my sample size of one, one part of this statement holds true. However, it was the life expectancy part that made me think a bit. Was it true? Could I find any data that might shed some light on the claim?

This brings me to a current problem about metastatic breast cancer. Those of us with metastatic breast cancer are not tracked. The NCI/SEER (National Cancer Institute/Surveillance Epidemiology and End Results) databases record when a person is diagnosed with breast cancer and when a person dies. It does not record a metastatic recurrence for someone who had early stage breast cancer. Therefore the SEER databases collect only those with an initial Stage IV (denovo) diagnosis, which represents only a small portion of metastatic breast cancer.

Since I had an earlier breast cancer cancer diagnosis, I was initially counted in breast cancer statistics. But now that I’m metastatic, my new diagnosis is not tracked anywhere until I die.

So since we don’t know how many people are living with metastatic breast cancer, or how many early stage breast cancer patients have recurrences, we also don’t have information about how the incidence and outcome of MBC has changed over time for the common subtypes of breast cancer. This means I have no way of answering my initial bones versus organ question.

There are definitely some logistical challenges of tracking metastatic breast cancer. It can become metastatic months, years, or even decades after the earlier stage diagnosis. With the spottiness of our national health records and healthcare system, one can see how connecting these dots is complex.

However, it’s important. With over 250,000 new breast cancer diagnoses every year, and an estimated 30% of those early stage diagnoses, tracking recurrence, outcomes and quality of life for those who turn metastatic is an urgent need.

Pink-tober – Let’s flip the script!

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The pink wave is almost here. This will only be my second year experiencing “Breast Cancer Awareness” month after receiving my own metastatic breast cancer diagnosis. I’ve certainly learned a lot over the past year and a half. One big thing I’ve learned is how little people understand about metastatic breast cancer.

So, I decided to create some infographics for breast cancer awareness month highlighting some of the major points about metastatic breast cancer. It’s my own spin on “breast cancer awareness”. My plan is to share these out on my own Facebook page throughout the month of October.

Feel free to take any of these and use on your own pages. If you have some you’d like to share here, drop a comment and I’m happy to add them. I’m planning on creating more so check this space for more in the coming week or so.

Free Breast Cancer Awareness Infographics

Download all at once

We need 30 for 30 now

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30% research dollars for 30% metastatic breast cancer patients

When I was diagnosed with metastatic breast cancer last year, I had no idea that it was incurable. I also had no idea how little research is being done to find a cure. Honestly, it didn’t make sense to me. What about all those “Race for the Cure” events for breast cancer that you hear about every year? Where’s all the money go for all of the “pink” marketing?  I was shocked to hear that most of it goes for preventing breast cancer and early detection. The big problem here is that we don’t know how to prevent breast cancer. Mammograms? Yeah, well, none of the mammograms I had during my diagnosis for either of the first or second bout of DCIS showed anything. My breast tissue was too dense. Mammograms were not an effective tool for me. I had blood coming out of my nipples. That was my red flag that something wasn’t right. I was also diagnosed with DCIS, or stage 0 breast cancer.  From a breast cancer diagnosis standpoint, it’s supposedly the most treatable variety. I had DCIS twice in a four year period. I had a lumpectomy, radiation and a bi-lateral mastectomy. I was told by my breast cancer surgeon that “I’d never have breast cancer again.” Yet, two years after she uttered those words, I was diagnosed with metastatic breast cancer. I feel that I’m walking proof that prevention and early detection are not how you keep someone from being diagnosed with this terminal disease.

So, since we don’t know exactly how to prevent it and early detection isn’t a fail safe either, how about spending some money on how to cure it? The tragic truth is that 30% of patients diagnosed with earlier stage breast cancer will eventually develop stage 4 breast cancer and die. I have learned that very few women know this. I didn’t know this until my diagnosis of metastatic breast cancer.

How much of the “pink” money goes towards curing metastatic breast cancer? A measly 2-5%. Even though almost 100% of women who are diagnosed with metastatic breast cancer will die from it,  popular breast cancer fundraising movements only dedicate 2% towards research to cure it. I have found one group that is working to raise awareness about metastatic, Stage IV breast cancer, and to fund research to extend the lives of people living with MBC.

METAvivor has started a nationwide movement dedicated to creating awareness about metastatic breast cancer, with a push to dedicate 30% of all breast cancer research funds toward the metastatic breast cancer that 30% of patients will ultimately face. Put simply, thirty for thirty.

The largest foundation for fighting breast cancer is the Komen Foundation that was created in 1982 with the vision of “a world without breast cancer.” Over two decades and billions of dollars later, breast cancer is still here, still killing people at pretty much the same rate. We need more than a focus on prevention and early detection. Early detection has proven no guarantee against metastasis and death.

We need 30 for 30. We need organizations like the Komen Foundation to keep their mission the same, but put more money where it’s needed. Since 30% of early stage breast cancer diagnoses will re-occur as metastatic, let’s dedicate 30% of research money towards finding a cure or to help find more effective treatments to turn metastatic breast cancer into a treatable, chronic or curable condition.