Thursday, October 10, 2013

The elephant in the month of pink: Metastatic Breast Cancer

There is one, big elephant sitting in the middle of October, and it definitely is not pink. Metastatic Breast Cancer (MBC) is when the cancer metastasizes and spreads to other organs and parts of the body.   For those that get breast cancer, 30% will become metastatic regardless of initial stage.  6-10% of all patients are stage IV or metastatic from the beginning.  I fell into that category, though we didn't know it at the start.  Though, patients who have early stage cancers are often told that they are "cured" at the 5 year mark, breast cancer can return/ become metastatic anytime after an initial diagnosis, and I have met women that had it return 10, 15, or even 20 years later.   This can be the case regardless of how early the cancer was found and the treatments or follow-up that result.  Early detection is not a cure! But early detection can be helpful in trying to stop the cancer from spreading.  Still, there are many people who did "everything right", and their cancer metastasized.

Breast cancer only becomes terminal or fatal when it metastasizes and spreads to other parts of the body. Only 2- 5% of all breast cancer research money is spent on researching metastatic breast cancer; yet, it is the only kind that is fatal.  A metastatic breast cancer patient will be in treatment for the rest of her, or his,  life.  Of course, all research benefits the MBC patient in ways by providing more types of drugs to prolong life, but shouldn't we be looking for ways to stop the metastasis and it's continued growth in at least equal numbers to the percentage of patients who will have the disease?  In the US, there are 40,000 deaths per year from metastatic breast cancer.    Unfortunately, these numbers have not changed in the past few decades though awareness of the disease has definitely increased.  This is very sad to me, and I am thankful that there are organizations like who are striving for equality with campaigns such as 30% for the 30%.

 Oftentimes, patients with MBC feel secluded even in breast cancer support groups and/or organizations because they are "what everyone is afraid of becoming." (I have been very lucky to connect with women who weren't scared off by my stage 4ness, but I have still faced this as well in some situations.)  We are rarely featured on any of the "pink" ads, most likely for the same reason.   Being a survivor takes on a different meaning for me as MBC patient, and this video is a good example of the many ways that people feel about it:   What does the word survivor really mean for the metastatic breast cancer patient?  Of course, as all of my trips have shown, I much prefer "living" with my diagnosis, but there are a lot of different components that go into that as well as shown in this video: How do you live with metastatic breast cancer?

I have very mixed feelings about all of the October pink.  Every time I see something pink, it reminds me of what I am dealing with, and sometimes I just want to forget it.   There are great organizations  that do wonderful things to help people in their communities, provide services for people who can't afford it, and research.  I am so thankful for those organizations and businesses that do those things and that show exactly who and/ or what the money is going for if you buy their product or service; I'm also very thankful that there are organizations that help individuals in their community because cancer brings stresses in so many ways.   I'm just not so fond of the many groups that seem to be capitalizing on a good, pull at the heartstrings marketing campaign, but you can't find where the money goes, etc.

 I know there are people out there who are battling, or have family battling other diseases, who would say "be thankful, at least people are attempting to raise money, our disease doesn't get funds like breast cancer".  I understand that, and I wish that every disease would get the funding that it needs. I just also wish that  my disease, Metastatic Breast Cancer, would get the funds that people seem to think it does or actually be curable, as people seem to think it is.  You wouldn't believe the number of well-meaning people that say "well, you have a good cancer b/c it is curable now" or "well, but you just had breast cancer compared to.....", in part b/c that is what is often put out there through many of the marketing campaigns. I've even had those things said to me by nurses and doctors, though not my cancer ones.   I can guarantee you that when you are getting the news, going through treatments and scans regularly, and planning your life in only 3-6 month chunks from dr appointment to dr appointment because you've been told that you are at best "treatable not curable" that there is no good cancer.

 I also wish that people would  realize that campaigns such as No Bra Day, while possibly well-meaning,  can do a disservice and belittle what people battling the disease are actually going through, especially when "scheduled" on national metastatic breast cancer awareness day. If you've been diagnosed with MBC, you most likely don't care about "setting the tatas free" in support of breast cancer,  and care much more about hoping the cancer leaves your liver, lungs, bones, and/or brain (the 4 most common areas for breast cancer metastasis).   In 2009, the Senate and Congress made resolutions that October 13th of each year would be National Metastatic Breast Cancer Awareness Day:  I hope that you will take a moment to think about me and the many other  faces of metastatic breast cancer on October 13th rather than the latest facebook or internet fad related to breast cancer.

If you actually made it through all of that, thank you for reading my rant. I just needed to get that off my chest, both literally and figuratively, lol!  I am very thankful for the treatment I've received, and the fact that I am currently enjoying being NED.  What I wrote above is still the reality that I live, though,  and some of the many thoughts that go through my head.  I try to generally be upbeat and positive on here, as that is the focus that I try to have in all things in my life now, but every once in a while I just need to be a little more real.


  1. Thanks for keeping it real :) you will continue in my prayers.

  2. Thank you for the reminder of life of one with MBC with the struggle and all that entrails. What a lack of research is done for this unique set of patients!