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hester's blog on stage 4 breast cancer

carkris's picture
carkris
Posts: 4522
Joined: Aug 2009

Too many women are living with advanced/metastatic/Stage IV (all those terms mean the same thing) breast cancer. The good news is that many of these women live pretty normal lives for many years, but the really bad news is that there is not yet a cure. When I first began to do this work, there was exactly one treatment for metastatic breast cancer, adriamycin, and when it stopped working, there was nothing else to offer. Doctors describe advanced breast cancer as treatable, not curable, and often call it a chronic disease.

The situation has improved greatly, but the plan is still serial treatments for the rest of one's life. This means that any one treatment (hormonal therapy or chemotherapy) is given for as long as it works--can be a few months or many years--and then, when it is no longer helpful, a change is made to another treatment. Every treatment sooner or later stops being effective as the cancer cells figure out how to be resistant to it. I know one woman who has been on weekly Taxol for 11 years with absolutely no progression in her metastatic cancer. It is always distressing when a treatment must be changed, and women are always quite sad and scared for a while. Usually, however, a rhythm develops, and life goes on as before. There are big differences in the side effect profiles of different treatments, so it is especially difficult to transition from, say, a hormonal therapy which has only meant taking a daily pill to a chemotherapy agent that requires weekly IV infusions and may cause hair loss.

During the pink wave of October, it is especially difficult for women living with advanced breast cancer. All the attention and hype seems to be focused on early detection and "cures" and little mention that it does not always work out that well. Some women are diagnosed with Stage IV breast cancer at the time of their first diagnosis. More often, a woman is treated for Stage I, II, or III breast cancer and, at some point, the cancer returns elsewhere in her body. The treatment, as described above, is the same in either situation.

This is a wonderful essay from The Huffington Post by Dr. Elaine Schattner. I am giving you a quote and then a link. I encourage you to read the whole thing:

Tired of seeing pink? You're not alone, says Dr. Barron Lerner in a piece on Pink Ribbon Fatigue in the New York Times. While cancer awareness campaigns have heightened awareness about this condition, lessened women's fear of the disease and helped raise needed funds for research and care, some are finding the whole pink thing a bit too much.

But for more than 160,000 women living in the U.S. with advanced, stage IV breast cancer, the situation is not one they can turn off on their TV sets, or avoid by skipping out from pink-decorated malls: they're living and coping with the metastatic form of the disease, active treatments, side effects and, still, no known cure. Their outlook is tempered, maybe best portrayed in a spectrum of gray.

In October, 2009, the U.S. Senate and House voted to support the designation of October 13 as a National Metastatic Breast Cancer Awareness Day. The point of those proclamations was to draw attention to the needs of the metastatic breast cancer community.

"We want people to know we exist, that we're still alive," says Ellen Moskowitz, president of the Metastatic Breast Cancer Network. The day is not about general cancer awareness; it's about acknowledging the distinct needs of people who have the advanced, incurable form of breast cancer. "We've been hidden in closets," she says.

http://tinyurl.com/23rcf3n

Marsha Mulvey
Posts: 597
Joined: May 2010

Thank you for posting this - it somewhat summarizes what those of us with Stage IV are thinking. Personally, I don't mind the PINK MONTH (in fact, I really like it) because I believe it is one way to raise awareness which we all know is needed. It is a push to keep up the research which may never lead to a cure but may succeed in finding new and better treatments. As I wrote in September about the Komen Race, it is such an encouraging event, BUT...there needs to be a forum for the whole story, which is not quite so hopeful. This is what people really need to be made aware of. Thanks for listening.
Marsha

SIROD's picture
SIROD
Posts: 2121
Joined: Jun 2010

I was going to post some of the great essays on advanced breast cancer printed during the month of October. Many of the web sites for stage IV to I read had them. However, so many of the posters already know me as anti pink on this site. Didn't want to antagonize people needlessly.

Here is one from the NY Times, title "Pink Ribbon Fatigue" which also mentions a recent book called "Pink Ribbon Blues", no doubt well worth reading.

http://well.blogs.nytimes.com/2010/10/11/pink-ribbon-fatigue/?src=me&ref=health

I know many women on here are very excited, (even Marsha) on the rah, rah of Pinktober. It has a place. Who isn't aware of Breast Cancer in this day and age? Come on, every where you look it's PINK and PINK does not equate to CURE. More than likely, with all the hoopla, people probably believe there is a cure or it is imminent, which it is not. 40,000 of us die each year, I would like each article printed in Pinktober to state that fact and to spend more than 2% of the funding on metastasis breast cancer.

I'm in my 16th year with, bone, lung and pleura metastasis. I would say, I'm chronic but probably beginning to run down. The one thing I have learned with Breast Cancer, both genders can be diagnose with it, there is no age limit, 10 to 92 years, every stage can develop metastasis. There was a lovely lady from Israel whose blog, Coffeeandchemo, I have been reading for the last year. She died last weekend at age 44, leaving 3 children, husband, family and hundreds of friends. RivkA was diagnose with stage 0 in 2005, 2007 developed liver, lung and bone metastasis, 2009, brain and then 2010 she died. Her story isn't unique if you go to the many websites on the internet. So many women and some men, die and we are no closer to understanding the disease than we were when I was diagnose.

In a perfect world, ACS would give a lap for those living with metastasis, Komen would acknowledge those living with metastasis. That is the progress, some of us live longer. In my aunts time in the 1960's, all died.

Doris

Mama G
Posts: 764
Joined: Nov 2009

Now that I am the dreaded Stage 4 my hope begins to waver, but reading these posts help me so much to not give up.

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