October and MBC

As I sit and watch what is happening in society, I’m torn between wanting to throw all my energy into affecting change and curling up in a ball until tomorrow. Then the reality sets in that I can’t throw all my energy into anything. I have to ration it so that I can maintain my health status as long as possible. Just now I started to type ‘remain healthy’ and then realized that’s not really a statement I can use anymore.

October is 2 days away. I’ve always felt indifferent about October. My sister and my brother-in-law have birthdays and another sister's wedding anniversary are all in October - nice events to celebrate. On the flip side, it is a transition month taking me from my favorite season to my least favorite weather.

When I was first diagnosed with breast cancer in 2009, that October felt different. Lots of pink and “awareness”. I’d kind of ignored it before that - mainly because I was pretty diligent about self-care and I was already fully aware of breast cancer. My aunt passed away from it in the late 70s. I’ve had multiple friends diagnosed with it.

Now I dread October. My kids dread October. Every place you turn is pink and ribbons and companies using breast cancer to sell something. (I remember going to the DMV when we moved to Colorado and inquiring about where the fees for the breast cancer license plates went. The response was to the state, the license plates were designed to raise awareness. I guess simply by existing.) October is filled with clever sayings, sale promotions and celebrations of “cures” for cancer. The reality is far from this. My reality is at least is far from this as is the reality of 150,000 other Americans. We don’t need more awareness of breast cancer. We need a cure.

Do you know anyone that died because of breast cancer? If so, they had Stage 4, or metastatic breast cancer. There is no cure. Once you have a metastatic diagnosis it means the cancer has moved on to other parts of your body and you will need to try to stop progression with medication and treatments. Those treatments will never end, until the medication stops working and cancer takes over your body entirely.

This is so hard to write. It’s probably hard to read this.

It’s so not fair. It’s not right that 30% of women who are diagnosed with early stage breast cancer (stage 0, 1, 2, 3) will have it come back as Stage 4. That means for every 10 people that get breast cancer and are “cured” 3 will eventually get it again and die from it. I am one of those 30%.

A lot of energy and money has gone into breast cancer - research, treatment options, awareness. A lot of companies have jumped on the bandwagon and see it as a great opportunity to make money. Many companies are not clear on what they are doing with the money they raise by promoting breast cancer awareness. Be very wary of purchasing anything pink in October. Of all the money that is raised for breast cancer, less than 2% of it goes toward research for Stage 4. So, 30% of people who get breast cancer will die from it but only 2% of the billions of dollars raised for breast cancer actually goes to finding a cure for metastatic disease.

For all the awareness and focus on early detection and discussion of prevention (BTW, no one knows how to prevent breast cancer), we still cannot prevent it and cannot stop it from returning as stage 4.

Several large organizations claim to be raising money for a cure, but very little of the funds they raise actually goes to research toward a cure for metastatic breast cancer. I’m sharing some of my recommended organizations to support. I’ve borrowed these facts from METAvivor, one of these organizations.

• Women and men die from breast cancer only after it has become metastatic breast cancer.

• Over 230,000 Americans are diagnosed with breast cancer each year

• 5% of those diagnosed with breast cancer are Stage IV at the time of diagnosis

• 30% of all breast cancer patients will metastasize (go from Stage 0, I, II, III to Stage IV)

• Metastatic breast cancer (MBC) patients live, on average, 18–24 months after diagnosis

• Stage 0 patients can and do metastasize (This is me.)

• Patients can and do metastasize 30 years or more after treatment

• In the US, over 40,000 people die from MBC each year, over 100 people die every DAY from MBC

• 100% of the people diagnosed with metastatic breast cancer will die from the disease

• 30% of people diagnosed with breast cancer will end up with Stage IV (terminal diagnosis) however only 2-3% of all cancer funding is put toward research for a cure for Stage IV.

There is hope, researchers believe that metastatic breast cancer can be changed from a terminal illness to a chronic illness. We can’t do that until there is a shift in thinking. While we should celebrate that Stage 0, 1, II, III are treatable, the reality is that there is no cure.