A Place to Vent about "Awareness"

Mtngrl · 10-25-2014, 05:38 AM

Several of us have strong opinions about "breast cancer awareness month." If you want, you can talk about them here.

Here's a blog post I wrote about it. http://www.durfeewest.com/pinktober-again/

And here's an Onion sendup of Komen (one of its favorite targets. A few years ago they had a headline that said something like "6,000 people race for the cure; fail to find it." http://www.theonion.com/articles/sus...e-probe,37202/

Feel free to chime in.

Becky · 10-25-2014, 01:16 PM

This time of year is always bittersweet. I was diagnosed at the end of August and had surgery early September and started chemo in October. I am happy to be 10 years out and still ned. However, I remember taking two of my daughters (15 and 13 at the time) to the mall in October. I had credit cards with no balance and i was just gonna let them go at it. A fun, no rules day as everyone was under so much stress. We could just forget about it all. But we couldn't. Every store where we were checking out, "do you want to buy this scarf or candle for breast cancer", every clerk would ask. Even at the makeup counter (I really remember the makeup counter because she was so pushy but I kept my cool) . Ugh, a fun day was a diaster for me. (Not my girls though cuz I spent almost $500 on them (but that was the point). So October is not my month.

I also think about all the other cancers too. What about them? I do understand it does help us somewhat. And Komen. I could write a book about how dis appointing they are to me personally but thats another post. I prefer to help the American Cancer Society. They were a real help to me. But most of all was finding this group. You're all the best!

tricia keegan · 10-25-2014, 04:47 PM

I can see both sides to be honest, I wish other cancers would get the highlights that breastcancer does and also the funding, but that's a whole other story.

As the Moderator of the Komen forums I'm used to reading negative comments about the organization, I have no control over that but can only say that I personally was supported and helped through my own treatments by the ladies on Komen at that time and made some life long friends there, for that reason alone I do what I do to pay it forward and ensure every new member gets the help and welcome they deserve whatever the politics!

Saygoon · 10-25-2014, 05:12 PM

Excellent blog - Komen like so many other organizations United Way etc are all about big money. But how much money really goes to the cause they promote? After advertising, admn. cost and usually huge salaries for upper mngmt. staff then what's left? Yes.... it takes money to make money but I agree lets put the money in a cure - in research. I think we are all "aware". Now here's my main complaint so many are out there raising money and really all they are doing is making money off a "popular disease" Lets look at reality pinktober brings in alot of bongo bucks- pink sells and unfortunately there are alot pf people getting rich off it. I too am Stage IV and if the mets don't kill me the side effects of the meds will but I wear my pink ribbons and try to stay in denial as much as I can........

Debbie L. · 10-25-2014, 05:27 PM

It's so refreshing to hear more and more people questioning the industry of breast cancer awareness. When I first began to question it (2001), it was not so well received (smile).

Here's a recent Time magazine article about
"How to Make the Biggest Impact With Your Breast Cancer Donations". I know of, and admire, 4 of the 5 -- "The Pink Fund" is new to me. NBCC is, and always has been, closest to my heart and mind.

Debbie Laxague

Carol Ann · 10-25-2014, 08:19 PM

Great article, Amy!

Here's the one I wrote for METAvivor:

http://www.metavivor.org/blog/ ("No More Illusions")

I have made a point of telling people when they say, "You're a success story, you made it," etc ... that I really don't know that, just have to wait and see. I certainly HOPE I am! It has opened the door to alot of discussion, I'm doing my best to give people the uncheery, real side. It makes some people uncomfortable .... yeah I was pretty uncomfortable too when none of my tests were accurate and then the HER2+++ tumor was found in my "healthy" breast.

Carol Ann

donocco · 10-25-2014, 09:55 PM

I worked as a pharmacist at Sloan Kettering in 1978 and left in 1979. I had one experience Ill never forget. I was the nighttime outpatient pharmacist. One of the main childhood leukemia oncologists came down to the pharmacy with her nephews. It was in October 1978 and I was 30. Her nephews had some kind of infection and I made up Amoxicillin suspensions for them. I tried to make small talk with Dr. T, something Im not good at. My statement " It will be wonderful when they find a preventative for childhood leukemia"
(I was thinking about viruses and prevention) was met with the retort "Then well both be out of a job." I cheerfully retorted only she would be out of a job not me, and listed all the different chemos for all of the different cancers I made up that day. Kind of makes you think a bit. How does Pfizer feel about cancer?How about Genentech? How about Komen? How about the American Cancer Society. How about ASCO?

Paul

BonnieR · 10-25-2014, 10:57 PM

As I said on another post where this subject came up, I am really cynical and skeptical about PinkTober as I see how it's being trivialized and abused. we seem to be a country that wants to DO something So any mindless thing will serve the purpose
Conversely, when I was a newbie, I reslky embraced my pink ribbon, my husbands work permitted the pilots to wear pink ties"United Against Breast Cancer". It all seemed really supportive to me. And we'll meaning. But it gets out of hand with bars throwing "save the ta tas" parties and "go bra less". How does that help anyone? It depresses me. I'm without breasts
I have learned to donate very locally to a group which helps individual patients with their specific needs Rent, medication, mammograms
Keep the faith

BonnieR · 10-25-2014, 10:59 PM

How do I post a photo here? I have a perfect example of things gone amoc

Mtngrl · 10-25-2014, 11:14 PM

Bonnie--I think you get an option for posting photos if you click "go advanced."

Carol Ann--great post. Thanks for sharing it. And I'm also a former lawyer. I shut down my law practice in 2008 to go off ot seminary in Philadelphia. After two years I transferred to Boston University School of Theology. I was diagnosed in my first school year at BU.

I don't think most people in health care would mind being out of a job if there were a preventative or cure for their specialty disease. But financial interest is an issue. It always is.

BonnieR · 10-26-2014, 08:51 AM

Where is "go advanced" prompt?

Mtngrl · 10-26-2014, 09:44 AM

Bonnie,

At the bottom of your draft post. You can either click "Post Quick Reply" or "Go Advanced." If you click the latter, you can then scroll down to "manage attachments" and upload images or files.

Hope that helps. But it didn't work for me. I attached a photo from last year of some members of my in-person stage iv cancer support group, but it didn't show up. I tried pasting the photo directly. That seemed to have worked, but it wouldn't let me save it.

Sorry.

BonnieR · 10-26-2014, 10:18 AM

I did see the prompt finally. But don't know how to get the photo to the site. I am not good at technology at this level. Too bad because I have a killer photo I want to post here
But thank u for replying

PinkGirl · 10-26-2014, 06:30 PM

To post a picture, look above the message you are typing, you will see fonts, sizes, A, and then a paperclip. Click on the paperclip to add an attachment.

BonnieR · 10-26-2014, 08:02 PM

I see that. It asks for a URL of the image. That is beyond my skill level!

sarah · 10-26-2014, 10:43 PM

Debbi L. great info, I think you should start a new post withthat link saying for those who want to donate to BC.

I'm a little skeptical about Komen myself. I don't understand where all the money they raise goes and how much goes to administration. Maybe that's something they need to explain clearly.
Let's not forget this site as a good place to donate to, it has proven its usefulness to all of us. We need it. And let's not forget Dr. Slamon!!! We don't need more awareness for bc, (maybe for the rare cancers), what we need is a cure for all cancers and to help those who can't afford the medicine they need.
Health and happiness
sarah

Mtngrl · 10-27-2014, 01:05 PM

A brilliant breast cancer blogger who had an accounting background combed through the Komen financials (from its tax returns) and analyzed all the data. She is no longer living (and sorely missed--she was funny and brave and smart) but here's a link to her blog post about what she found: http://cancerculturenow.blogspot.com...y-numbers.html

'lizbeth · 10-27-2014, 02:21 PM

Amy, thanks for addressing this important issue. I feel the greed in fundraising, cancer research, and oncology holds back progress on finding cures for those who desperately are in need of one.

Some of us had a similar conversation each October. Last year I was venting about the stink of pink. I clearly remember NEDenise participating.

We discussed Charity Navigator as a good place to check out before giving. I just visited and found that one needs to register to use it.

The Breast Cancer Research Foundation has 4 stars. Susan G. Komen has 3 stars.

I read the article about Susan G. Komen and I can see many valid points about how little of the donations go to research. I made the point last year that all this money going to awareness skipped me. I procrastinated at the age of 40 thinking that I likely could wait for a mammo. Wrong! Had I gone for mammos at a minimum of every 2 years it would have been found much earlier.

If research is our priority then another charity would be better. Perhaps the Breast Cancer Research Foundation?

From my personal experience the huge amount of funds going to charities for research is just the beginning of the problem. The entire system is broken.

Once a drug makes it into clinical trials the system breaks again. Poor and slow enrollment has been a chronic problem. Phase I and II trials are in limited locations. The trials compete against unaffiliated oncologists for patients who rarely find out they could participate until after receiving standard of care. Newly diagnosed patients are reluctant to participate wanting to go with the 'tried and true" treatments. This extends the time for new treatments for years, even decades.

To speed up cures we also need a campaign about enrolling in clinical trials, not just getting mammograms and breast exams. Patients need support with transportation costs and lodging.

So many opportunities for improvement.

Mtngrl · 10-27-2014, 05:02 PM

As I said in my blog post, cancer is not a "cause" to market. It's a public health issue. Society as a whole should be working on it at a much better-funded level. The budgets for NCI, NIH, and other research look large, but not when divided by 330 million people. And then there are access and quality of care issues.

One of the doctors who spoke at LBBC gave the number of childhood leukemia patients who are enrolled in clinical trials. It was over 90%. The percentage for breast cancer is in the single digits. That is certainly a problem.

Mass screening of asymptomatic, healthy women has not been shown to increase overall survival. In fact, in some fortuitously matched pairs of populations in Europe, where one country began routine screening years earlier than its sister country, it was shown that it does no good at all in terms of overall survival. We're wasting money on screening that could be going into cure and prevention, but a for-profit health care system is skewed towards procedures. If health care were publicly funded, there'd be much more incentive to do evidence-based medicine, not profit-driven.

Overall survival should be the gold standard, and preventing or arresting metastasis should be the goal. One especially irksome thing that Komen does is tout five-year survival rates. Here's one response to that tactic: http://www.breastcancerdeadline2020..../truth-20.html and I read a wonderfully snarky blog post about it recently (Along the lines of "big deal. Estrogen-receptor positive breast cancer often recurs ten, fifteen or more years out. And living five or six years longer when you're 40 is still nothing like a normal lifespan." But I couldn't find it.)

'lizbeth · 10-27-2014, 05:42 PM

I remember when my biggest wish was to live to my 50th birthday.

I did not understand cancer when I was first diagnosed at all. I had no idea that such a large number of breast cancer patients live so long. I lived in terror of a recurrence. Now I am just so grateful to be looking at 7 years since diagnosis, of which 6 1/2 are NED. And to have passed the big 5-0!

I am even more glad that my 2nd oncologist humored me by helping me enroll in the GP2 vaccine trial. I was truly a pain in the posterior. It was a battle on the board in the beginning, a lot of people told me that vaccines don't work, that it would destroy my heart. I am so looking forward to more data from all the vaccine trials that shows this is a way to prevent patients from recurrence.

I too am also happy that Genentech has come up with a Trio of Triumph on Her2 breast cancer, that would be Herceptin, Perjeta & Kadycala. I suspect that it shrinks the ranks of those in the HER2 group that progress to MBC.

I know Dr. Slamon was working on the ER cancers, but have not kept up with his progress lately.

NEDenise was truly special, totally cracked me up, and often.

I am asking customers to round up at J C Penney's for the Breast Cancer Research Foundation. If I must suffer through another Pink-tober at least I can promote a charity that has a greater focus on research.

Enough about my Pink-tober experience. It is a good blog. I'm sure that more and more are hearing your frustrations with the Pink system and you are making a positive difference.