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Request for your input and wisdom

Beachbabe
4 Recommendations

Hello My Fellow Hot Cancer Babes~
I've been asked to write an article for a magazine for the infamous and ever-pink month of October. As a Hot Cancer Babe, what is the one message you would want to get across to the world about living with metastatic breast cancer? I figured I'd throw out my fishing line to see if we all collectively could focus on the best way to describe ourselves.

For me, I still want the world to realize (as in Dr. Seuss' Horton Hears a Who), "We're here, we're here, we're here!" We are young, vital women who have been struck with the unlucky late stage cancer stick...and we need treatment options that aren't debilitating, funding for things devoted to assist late stagers, and a CURE!

Thanks, my loves!
Colleen

Explore topics in this discussion:

Exercise Cancer Leukemia Edema Diabetes Breast cancer

37 replies

Shes-So-Weird

We are not giving up until you cure us.

Groovygirlcool

Hey HCB-
I like 'them' to know:

The whole 'early detection' as prevention, is a pile of phooey. I think we are generally lead to believe if we all checked our breasts and got regular mammograms - any lump would be whisked out and off we'd go into the pink t-shirted sunset to live til we're all 85.

Mammography is oversold, inefficient, bypassed technology - superior technology is out there, but it all comes down to dollars does it not?

We need funding for research into 'smart' drugs&delivery technology-
KEEP US "CHRONIC" p-l-e-a-s-e!!

I don't believe a 'cure' is out 'there'. But I do believe a way to contain and control is.

That's what we need money devoted to, so that's what I like the non MBC public to know.

Cheers, xxxGGC

ReneP

30 percent of early stagers will become metastatic
we are alive and living fully

darn

Hi Beachbabe,

They picked the perfect person to write this article.
As you know, I just love to read your writings. You have a gift to be able to get a point across using analogies we can all relate to.
I would want included in the article, just how strong our group is. I have gained such inspiration and hope from reading our writings on this board.
We are not to be pushed aside and forgotten. We DESERVE to have research done specifically geared to Stage 4 breast cancer.
I look forward to reading the article.
I will say a Prayer for you that you are given the words to write and represent all of us fighting this "alligator"

Peace,

Diane

jaf

Beachbabe, you are the perfect person to write for us and about us. You have such a way with words. I concur with Groovygirlcool. I know mammograms detect the majority of tumors BUT not all. That is pretty evident by the people on this site. I think we kind of get swept under the table by the other org. such as Susan G. Koman (don't get me wrong they do great things) but we are the forgotten women. Women that nobody wants to become. They are scared to be us and we are just as scared to be us too. But we go on and have to live with these feelings that know one understands. I too believe there will never be a cure BUT we can control and maintain just like diabetes. I know you will find the words and speak for all of us.

Congratulations on being chosen to write this article and God Bless.

ihopeyousing

Dear BB,
I am also glad that you are writing. I agree with ReneP that the 30% number is key to the general public's understanding that we are not surivors but people living with the disease.
Thanks for writing.

Deanie

Colleen, like others, I am delighted that you will speak for this overlooked crowd. You write lyrically yet with clarity. I could not limit my message to one item. The major issues I would want conveyed are:

1) We really are metavivors - in that limbo state of living with the complications of facing death by breast cancer everyday...with the operative word being LIVING.

2) While we are metavivors, we are so much more and need to be seen as more than pathetic victims but one's friends, mothers, sisters, grandmothers, aunts, etc. who are strong and focused on being productive and thriving.

3) We need more attention/money for proactive solutions for advanced breast cancer cure and treatment. There is not enough concerted research that listens to actual ABC patients. Examples:
a. denial that certain Rx increases weight and advances other health issues
b. denial of the prevalence of lymph edema and how many things impact it
c. more consideration, study and knowledge of complementary medicines/procedures by traditional practitioners or in partnership with wholistic practitioners using low tech solutions to improve the quality of our lives while wrestling alligators

Really looking forward to reading your finished article and I will pray for your wit and wisdom.

GirliebikerTPBC

You are the perfect person to write such a magazine article. In addition to all the other thoughts before - I would like people to know that we, as Stage IV, will be in treatment the rest of our lives (unless a cure is found!!) and that we can't go backwards to Stage I or II. I had a friend tell me recently that she hoped I would get back to Stage I. I had to tell her that I was never Stage I, that I started out as Stage IV (so much for early detection), and would never go backwards. She was stunned! It is absolutely amazing how many people do not know even a little bit about Stage IV.

chainsawz

I agree with everyone - you are the perfect person to convey our story! For me, the one thing I always have to explain for people over and over is the fact that there is NO CURE FOR CANCER!

This is a very difficult concept for people to understand and accept. They believe that even at stage 4 we will have some chemo and be cured. I even struggle with this concept when talking with people in my life who had early cancer. They view themselves as being cured, and I am having trouble because I am just not cured yet. No one seems to understand that NO one is cured. Many of those early stagers will wind up in our boat and it is a fight for life.

People need to know they have done tons of amazing work for cancer research and our treatments, but there is still no cure. I plan on getting a t-shirt made for my Susan G. walk that says the same thing THERE IS NO CURE FOR CANCER!!!

lynnwv

Dear Beachbabe,

How wonderful that you are doing this!! I, too, can't think of a better spokesman for we met ladies!!

I'm with Rene, that women need to understand that just because they are told they are "cured" of early stage BC, doesn't mean it won't come back with a vengence. My other passion is the misconception that if you don't have a family history you are safer. 80% of women who get BC have no family history at all. After that all bets are off and you are in the 30% who go to advanced BC.

The other thing that drives me crazy is the members of the medical community that have given up on you just because you have mets. We are ALIVE and fighting and we deserve your attention!!

Let us know where the article is when it comes out!!

Blessings,
Lynn

Dolphinlady

Colleen,

I agree that you are the perfect person to write this as you have such an eloquent yet commanding way with words and you are so spirited and captivating.

I concur on all the things everyone mentioned above. I would add that people need to realize that breast cancer is not just one type of disease, but many; especially for myself and several other ladies on here of the triple negative variety with no targeted treatment and there's the other type, the most deadly, inflammatory breast cancer.

In all honesty, I feel the attention wanes when it comes to metastatic disease because it is ugly and crawling throughout the body. I think everyone is more interested in saving the pretty boobies and if they can't do that than it's just a foregone conclusion for them. Sorry if that's too blunt, but, it's what I've come to notice in all the dealings I've had with people outside of here since I've been diagnosed with Stage IV.

That's what immediately comes to mind. If I think of anything else I will be sure to throw it at you later. Otherwise, I thoroughly look forward to seeing what you come up with! Thank you for doing this!!!

Love and hugs,
Bev~

essenia

Chainsawz says it for me. Emphasize that there is no cure so we need collaboration, focused funding for a cure. A cure will lead the way to prevention!
You go girl,

Essene

margery

Dear Beachbabe, Tell it like it is. Never ever believe the radiologist who reads the mammograms. Insist on a consultation and view the mammos yourself. My mammos were read by every radiologist in our local so called first class women's health center for over 25 years. Unbeknown to me, there was a big spot on the mammograms for years that I could see with my own eyes (after the stage IV diagnosis when I decided to check things out in person with the radiologist.) She admitted the cancer was there in left breast since at least 2002 and right breast since 2005. Her party line answer to my direct question as to why I was not told to have it biopsied is that it did not change over the years and standard practice is not to biopsy if it does not change because "it would lead to too many unnecesary biopsies". Well, unnecessary to who???? Now I am stuck with stage IV bilateral breast cancer for the rest of my very compromised life. I bet if the mammos showed similar spots on the female radiologists' mammograms, there would be a biopsy pronto.

I am bitter, disappointed, disgusted with both the mammogram radiologists and my internist who consistently missed it in his yearly clinical exams of breasts. But I am still alive. Hopefully I will outlive all the incompetent doctors out there. Margery

Angelvoice

Dear Beachbabe,
I agree with everyone that you are indeed the right one to write this article.
I would like people to know that anyone who ever had cancer can enter the stage 4 category over night! Look at me i jumped from stage 1 to 4 and I had no warning! My doctor did not even see it coming.
People seem to see you as "almost dead"...you feel like they are planning your funeral already. Even the doctors sometimes offer little hope or encouragement.The reality is that there are many people like us who are forced to live with stage 4 cancer.It is a chronic illness and we deserve to be treated with the best treatments. There must be more research and investment done for stage4.We are still alive. We are young, we are strong,we are intelligent and we deserve to live!
Let the world know that we have a voice. We demand better treatments that do not compromise our quality of life.If we must live...then the living must be worthwile!
We are here! We are alive!Give us what we need!
We deserve to live!
Love,
Angelvoice

ReneP

oh, and mention women are dying far too young and far too frequently from this disease. (4 women die every hour from MBC)

a dear friend of mine died yesterday at 42
She left behind a loving husband and young children 8 & 4

May you rest in peace, Kristine.
may God spread her love around your family
we hold you up in prayer...

nancyc

Oh Rene, I'm so very sorry about your friend, your loss, and that of her family. Nothing is sadder to me than the thought of such little children deprived too early of their mother.
What I'd like to focus on is the dearth of research into the CAUSES of BC, and why so many younger and younger women are getting it. There is more and more information coming out that is countering the "company line" about the efficacy of breast self-exams and early detection. I was disgusted recently when Komen sent out an e-mail saying that there was NO scientific evidence that food and environment degradation has anything to do with developing BC. Yeah.....right. There isn't appropriate case management for women who are finished with treatment...no discussion of what having had BC will need to factor into their conversations with their doctors in the future, what tests need to be done, and what the long-term effects of treatment will be, and how to cope with them. Hester Hill Schnipper said it perfectly in "After Breast Cancer" when she used the analogy of BC patients who've completed treatment being like drowning victims who are pulled out of the water, but left gasping, alone on the dock. Oh....and if, like me, you loose your health insurance, you're screwed.

hazelmarie

It's a real honor Colleen to have you writing an article on behalf of all of us MBC alligator wrestlers! And that analogy should be used, as it is exactly what we do, day in and day out. The battle never ends and neither does the frustration of not getting what we need to have quality of life. Where is the justice? What do you say to a mother of triplets, or Rene's friend Kristin, with a 4 yr old and a 6 yr old left to be raised without a mother. I'm sickened physically and emotionally at the disregard for these lives, and the four out of every hour that die in this country from MBC. But with the grace of God, our spirits will go on and and we will hold our heads high and support each other in this cause. And we will never stop asking for the help that is so desperately needed.

debraocn

Wouldn't it be nice to have access to quality cancer care for everyone who needs it? I probably have 18 months to live because that is when my COBRA runs out and I will have no health insurance. In 24 months I qualify for Medicare, but I doubt my cancer will stay quiet for six months while I wait for Medicare benefits to kick in.

My two children recently applied for health care insurance on their own due to graduation from college. Both were denied. One because he had an infected mosquito bite that had to be lanced and the other because she was hit by an uninsured, unlicensed, illegal alien while driving to school 5 years ago. Lord help us if people can't get health insurance in their 20's when they are healthy.

I have emailed President Obama with the details of my situation. Got an email back asking for a picture to go with the story and permission to share the story with members of Congress. I urge any of you who have problems with access to care, affordability of treatment, or similar issues to go to www.whitehouse.gov and share your story. The problem with getting metastatic cancer at a young age is that you may not be able to continue working (my employer will not accomodate my being on oxygen) and then you need to figure out how to keep your health insurance until Medicare kicks in (after two years on social security disability).

hazelmarie

Oh I'm so sorry Rene, your friend's name is Kristine and she had an 8 year old and and 4 year old. I'm sooo very sorry for your loss and their loss, I'm just terribly upset and shaken here. Why couldn't my "banked time" be give to her. What is God thinking, I know that I believe that His plan is always the right one, but I will not understand this as long as I'm on earth. We all have to be a little bit stronger because Kristine's not here anymore, we have to keep on fighting for answers. I'm so sad but I'm so angry right now.

dj64

We are not the success story behind the "Pink Kitsch" month. Racing for the cure isn't about us, the ignored ones. We don't fit in the pink ribbon factor. For our color is a very dark shade of pink mixed with black.

Looking at the sea of pink survivors I would like to remind them of the beginning lines on an old tombstone epitaph, "remember as you pass by, as you are now so once was I". They don't want to see me for they don't want to read the next lines, "as I am now so you will be ...". Not all of them, but enough of them.

Where do all the proceeds go for all the money raised? If buying "pink" could have cured anything, we all would be NED.

Each October, I feel like a bull who has a red flag being waved in front of it's eyes. Pink raises my blood pressure, so I don't buy, don't listen, don't read any of the pinking of our nation, our world. Is there any one left who doesn't know about breast cancer, early detection and prevention?

The research should be in finding the reason why they can't make that renegade cell and it’s copies self destruct and fixing it.

Dj

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