Search for the Cure May Leave Women with Metastatic Breast Cancer in the Dust
Metastatic breast cancer is the kind of breast cancer that
has spread to the bones or other organs of the body. Women diagnosed with this
type of breast cancer do not survive even though they may live for years after
being diagnosed. Mister Webster will tell you a cure means “the successful
treatment of a disease or wound.” In the technical sense of the word, does the
search for the cure leave metastatic breast cancer patients in the dust?
On Monday night I had the privilege of chatting with other
oncology professionals and some women living with metastatic breast cancer. The
women with MBC are a different shade of pink, perhaps a little bit darker
shade, as they force us to deal with the aspect of dying from breast cancer.
Women living with MBC are part of the collective group of
breast cancer survivors, yet they are so uniquely different as to deserve to be
a group of their own. You will not see many interviews with women living with
metastasis nor will you see them crossing the finish line at a breast cancer
walk. These women still have all the heart and all the courage, but their
voices remain silent. It seems as though looking for a cure would mean ending
the deaths of women from breast cancer yet the women still dying from breast
cancer are those with MBC. On one hand, there have been huge advances in
finding early breast cancer and treating those women so as to “cure” them, but
when it comes to the women who face unsurvivable MBC, the research is lacking.
Go to www.clinicaltrials.gov and you will find there are 1,804 clinical trials for metastatic breast cancer as opposed to 2,588 trials for breast cancer. That’s a difference of about 40%!More importantly, where is the fundraising? It is rare to see a walk or a charity to support research for MBC. Per 2009 tax filing, Susan G. Komen Foundation donated 40% of their $175 million dollars raised to research and “other organizations”, but of that research we do not know how much was spent on MBC. Ironically, Susan G. Komen herself died from MBC and Komen Foundation’s slogan is “Race for the Cure”.
Why are we not taking tissue from any willing woman with MBC
to scrutinize and hopefully develop a successful treatment to prevent
metastasis from being a death sentence? Many other cancers have what is called
a tissue consortium or tissue bank that collects tissue from cancer patients
all over the country with a specific type of cancer. The point of the tissue
bank is to gain an edge in treatment of cancer by having thousands of samples
to study. Even, Myeloma has the Multiple Myeloma Research Foundation and tissue
consortium and this type of cancer causes hundreds of thousands less deaths
than breast cancer. In fact, breast cancer is the second leading cause of death
for women, so where is this tissue bank? Why don’t big name breast cancer
organizations use the money they raise to get one started in their search for
the cure? Bottom line….money makes the world go round and for big pharma this
type of research just doesn’t show the dollar signs.
What could be more horrifying than MBC? How about having a
sleazebag, politician husband whose affair overshadows his wife’s diagnosis?
Elizabeth Edwards was an amazing woman with MBC and she may very well be the
face of this disease as she was one of the first to go public with her
diagnosis. Yet in the end, her hubby’s scandalous affair took center stage and
with that the focus moved away from Elizabeth
and her battle with metastasis. The point of today’s post is to get you to make
some noise to support these women and insist fundraisers directly help by
donating to MBC research and support for women with MBC. We need a tissue bank, at very least, to get the progress rolling.
Make sure you visit my site @ www.mybreastcanceranswers.com for the latest news on breast cancer or even better, join our forum so you can connect with other women (its free).
Your Friend,
Heather
Here are some great resources/blogs for women with breast
cancer metastasis:
http://cancerculturenow.blogspot.com/
Resources:
www.websterdictionary.inbox.com
Joani Gudeman
7:08 pm on Sunday, September 4, 2011
Thank you so much for your thoughtful and extremely accurate, meaningful and powerful article. The month of October is often a difficult tiime for people like myself (living with mets); it is a time when the words cure and survivor appear everywhere. They are words that do not have a home in my vocabulary. It is time for the breast cancer community to focus on those of us who keep dying - there has been no decrease in the numbers of women dying from the disease despite the emphasis on early detection. Metastatic people need more treatments to extend their lives - discovery of treatments is dependent on funding for research. Thank you for mentioning MBCN, we are the proactive voice for the metastatic community focusing on raising awareness of the disease, advocating for more treatments and providing education and support for the metastatic community. Thank you for focusing on us. Best, Joani (Board Memeber, MBCN)
Heather@mybreastcanceranswers.com
10:54 pm on Friday, September 9, 2011
Joani,
Thanks for commenting! I am really trying to make a voice for those with breast cancer via this/my blog and my website. Feel free to contact me if you would like to do a post for my blog as I love hearing from women who are living through this. I hope and pray we make some headway here for all of you women and lets get the word out there!
Your Friend,
Heather
CJ (Dian) Corneliussen-James
9:14 am on Monday, September 5, 2011
Thank you for writing this. Research is indeed lagging far behind ... but it is not only for MBC ... it is for stage IV cancers across the board. It is critical that this be changed. Stage IV research for any cancer yields valuable information for other stage IV cancers, yet across the Board, stage IV cancer is funded at only about 2% in the USA (some countries are doing better). You are absolutely correct that more organizations need to fund MBC research. Unfortunately, much of what organizations fund in the name of MBC research is actually research to "prevent" MBC. This is not the type of research that will find solutions for those of us with MBC. METAvivor is doing what it can to change the tide; it's 2011 Research Grant Award Ceremony will be Oct 10, 2011, but far more funds are needed and far more people and organizations need to be pushing loudly for vastly increased stage IV cancer research across the board. In the field of breast cancer, METAvivor advocates 30% for 30% ... we want 30% all breast cancer research funds going toward MBC research because 30% of all breast cancer patients metastasize. 30% for 30% .... let's make it happen. CJ (President, METAvivor Research and Support)
Heather@mybreastcanceranswers.com
10:58 pm on Friday, September 9, 2011
CJ,
Thanks for commenting also. I think 30% for 30% is amazing! I think just making folks aware is what we need to do as people do not realize how many women metastasize and that any women with any stage of breast ca can be affected by this. I saw your post about Komen. I wrote an article about Komen Backlash, it seems only $72 million of $175 million (2009 tax filing) went to research and "other organizations". This means less than 40% went to actual research and we don't know how much went to MBC research which is oddly enough, "The Cure". I hope I don't get sued for using that in this post :0
CJ I would also love to hear from you and if you are interested in posting for my blog would love to raise MBC awareness.
Heather
CJ (Dian) Corneliussen-James
9:15 am on Monday, September 5, 2011
I would like to add that according to Komen's website, they put 24% of their financial portfolio into research of which 7% goes into a category that presumably includes, amongst other things, MBC. CJ
Rosie Wales
2:33 am on Friday, September 16, 2011
Hi Heather - I am writing this from Scotland, having been given a link from a website in the UK for women with Secondary Breast Cancer (as we seem to call it!). I don't have any statistics for research here, but I do know that those of use with SBC have been trying so hard to get our voices heard. I am pretty sure there aren't even any statistics on how many woman are actually living with this. There is a great charity in the UK called breastcancercare.org.uk and they have been campaigning for major changes in the whole healthcare approach to SBC. You might like to see what they have on the site. As October is Breast Cancer awareness month here too, Breast Cancer Care have dedicated 13th October as Secondary Awareness Day and at least in some small way it gets us some much-needed publicity etc. However, whether it makes any difference to research is another matter! I know our countries have completely different health care systems - and I feel so lucky I get amazing treatment, totally free of charge (well, not exactly free as have paid taxes for decades) - but it is good to know what is happening elsewhere in the world. Let's hope some medical researchers out there are listening too and though improved treatments may not come about in my time, but for the next generation of woman who undoubtedly are coming along behind. Kind thoughts from Scotland
Heather@mybreastcanceranswers.com
11:11 am on Monday, September 19, 2011
Rosie,
Thanks for your insight into breast ca in the UK. I believe Oct 13th is MBC day here as well. I am glad you liked this post. Hopefully research will continue to grow in this much needed area.
Heather
Mike Jaster
1:33 am on Thursday, October 6, 2011
My WIfe went to go be with the Good Lord Sept. 15th. This has and will be very difficult and something I will never get over. After her initial Stage IIB Breast cancer diagnosis later it reoccured to Stage IV. After so many medicines, radiation, and chemo I am still wishful there was a CURE for Met. Stage IV breast cancer. I wonder if there is really a desire to get the cure since so much money is being made on this terrible disease. She had the best Dr.'s in the world and now is with God with no more pain/suffering although I wish it would have been me and not her with this. As a man and woman are one you might as well say I had it too. My Dad died of Stage IV lung Sept. 10th, 2004. Me and wife Adriana's anniversary was Sept. 18th. I would like to do fund raisers to help with efforts for Met. Stage IV cancer as I just do not see enough being done and this affects so many people. Michael