Cancer Battle Far from Over

Done with wearing pink, advocates push for research on metastatic disease

It has been a week of rest. Mandi Hudson of Salt Lake City, Utah, knows that is perhaps the most important thing she can do right now.

The 35-year-old driven young spitfire has taken a rather big blowto her heart, mind and body. Doctors have confirmed that the cancer she has been fighting for nearly five years has not only metastasized from her breasts to her spine, lymph nodes and lungs, but now also to her brain. 

Hudson was diagnosed with stage IIB breast cancer on Dec, 30, 2010, the day before her 31st birthday. The news was devastating, but she and her husband, Mike, were hopeful it had been caught early enough that they could get the treatment she needed and put the cancer, at some point, behind them.

Related: Conquering Cancer

Mike Hudson is an information technology manager with a Salt Lake area services company. The couple right now has two small dogs they consider their children. Mandi Hudson is not sure what she would do without the three of them.

She started blogging about her experience that day, mainly to keep family and friends informed of her health and her course of treatment. She has since received accolades for her work.

In 2014 and 2015, she was named a Top Breast Cancer Blogger from Healthline, a website dedicated to providing reliable medical information and trusted health advice. She has also grown her blog to include followers and supporters from around the globe.

Hudsons message has grown, too, from a purely informative series of notes about what was happening to her to advocacy for so many others facing the same daunting diagnosis she has — almost certain death from her cancer, not if, but when. The breast cancer she has is rarely cured.

Too many people, she said, believe all breast cancers can be cured.

Related: Stop Maligning Mammograms

Dont get her wrong: Hudson is grateful for the lives saved through advocacy and fundraising. The pink ribbon campaigns have worked. But wearing pink, buying pink and advocacy for early detection only go so far.

I am stage IV. I will always be in treatment. When one stops working, I will move to the next treatment. I am having scans this week to determine whether the targeted therapy is being effective and whether or not we have to change treatment. Some of us call it cancer whack-a-mole, and it is also called scan-treat-repeat,Hudson said.

Her goal is to be here for that night and a long time to come. She knows its possible, and shes finding strength in others also sharing their stories online.

Its not a story we hear often, that women and men, are still dying of breast cancer. The Metastatic Breast Cancer Network reports more than 40,000 lives are still lost each year to metastatic breast cancer in the U.S. alone. Treatment currently focuses on controlling the disease and quality of life, as there is no cure.

Organizations like Komen and the Avon Foundation are starting to increase investments in stage 4 research, and individual cancer centers are doing the same. METAvivor, the first nonprofit dedicated solely to raising awareness about stage 4 disease and funding research in the area, just announced new grants in the sum of $1 million.

Are promising treatments on the horizon? Hudson prays they are, but they cant come fast enough.

My life is moments of normal and moments of cancer creeping into my brain. I am going to die of this disease. I dont know when. It is a ticking time bomb inside of my body,she said. I try to live the best that I can, do the things I enjoy doing, rest when my body tells me I need rest.

Hudson will be 36 on Dec. 31, New Years Eve. Her goal is to be here for that night and for a long time to come. She knows its possible, and shes finding strength in others also sharing their stories online.

Related: Skip the Chemo

Jill Cohen from Jills Cancer Journey has been an inspiration, bucking the odds and living with metastatic cancer for 13 years. Cohen, who was diagnosed in 1999 at the age of 39, writes about her ongoing battle with metastatic breast cancer from her Seattle-area home. Hers is another Top Blog for 2015, and her story is one Pfizer is featuring in a new campaign called the Story Half Told, to raise awareness of metastatic breast cancer.

Another inspiration is Beth Caldwell from The Cult of Perfect Motherhood. Caldwell is a mother of two, also from the Seattle area and battling stage 4 disease. Earlier this year, she helped found MET UP, an activist group committed to “direct action for a viable cure for breast cancer.”

This group is done playing nice and wearing pink.

The group is done playing nice and wearing pink, and plans instead to use protests and demonstrations to garner support and attention. Caldwell recently spent three days on Capitol Hill with MET UP talking with lawmakers about the need for more research funding for metastatic disease. There is now an all-out sprint to try to get funding into legislation. 

To have that kind of realization, that youre dyingits definitely a different way to live. Im not angry or frustrated. I get scared,Caldwell said. At the same time, I try and focus on making a difference and that people understand what metastatic breast cancer is. There is confusion out there that breast cancer has a cure. I dont know how or why that has gotten drilled into peoples brains. Until we have a cure for metastatic breast cancer, we dont have a cure.

When so many women with even stage 0 are rediagnosed 5, 10, 15 years later, and there is no cure at that point,she added, we dont have a cure. The battle isnt over until we have the research that fixes that.