rewrite breast cancer awareness message the way YOU want it to read

[norkdo]

http://her2support.org/vbulletin/sho...d=1#post258266[URL="http://http://her2support.org/vbulletin/showthread.php?p=258266&posted=1#post258266"]

go ahead.
we can copy your message to all women out there along with all the submissions on this thread.
put them together and send them to the white house.
what do u want to say to those with the power to give advice to all women about prevention and
staying safe from breast cancer.

due date: Oct 25th. i will send out our collective advice during Breast Cancer Awareness Month. It doesnt have to be advice. what do u want them to know?

[norkdo]

I want women to know about Breast Cancer Prevention....
that there is no such thing.
Even the thought of Breast Cancer Prevention is a sweet fiction like lighting a candle for Santa Clause each year.
We with HER2 Breast Cancer have been doing our self-exams for years, our mammograms only beginning at age forty, eating anti-cancer foods, listening to doctors tell us our mom's breast cancer was not the "familial kind" so we had nothing to fear (only BCRA or whatever it is called have to fear that..while not giving us that actual test) and feeling great relief when the follow up mammograms were negative (finding out years later they were false negative as HER2 lines the ducts silently for YEARS before bursting up into a late stage cancer) and all the smug B.C fundraisers were lying all along. Maybe not in certain people's cases....but if you have HER2 your breast cancer was likely undetectable til stage three or four.....and if your mammogram was a false negative....your take might be less "candle for santa claus" than "outright lying".
Prevention is impossible.
It isn't your fault if it happens.
Ovarian cancer and other cancers which cannot be detected early are like HER2 Breast Cancer. Not your fault. Not subject to reason and rational prevention.
My mom had breast cancer and was a reed-thin skinny health freak all her life who NEVER drank or smoked.
Not your fault.
Not your fault.
Not your fault.
Let me be clearer: if God forbid you get Breast or any other cancer: It is Not Your Fault.
You cannot avoid it. You cannot prevent it.
You are, however, our sister, and we are here for you. We pray for you, we pray for each other. And everyday we give thanks that we are on here, on this website, together, forever.

[Debbie L.]

Hi Nora,

Great idea, it will take me awhile to put my thoughts together, but I'll get back to you. Not that I think that anyone will pay any attention -- this pink October machine has gathered WAY too much momentum. But it will be interesting to talk about how we think about "prevention" and "awareness".

I do have a question about your statement (from your doctor) that HER2+ breast cancer "lines the ducts". I'd never heard that before and am curious about the source for that information. Could you ask your doctor to provide us some references?

I've only heard that kind of information about lobular breast cancer (which is rarely HER2+). Lobular cancer does tend to form sheets of cancer rather than lumps of it, as I understand it. The other kind of "lining the ducts" statement might come from the way widespread DCIS can behave -- it can apparently be widely disseminated thruout a ductal tree without having become invasive, which is one reason why women with DCIS end up with mastectomies -- they can't get clear margins. But I had not heard that kind of DCIS behavior is specific to HER2+ DCIS.

As for how long it's there before being detectable, I think that is not known. It used to be said that figure was 5-10 years but that would of course vary widely depending upon how fast the cancer grows. I heard Susan Love question that old figure, and she said "I just don't think we know that answer".

Debbie Laxague

[suzan w]

Me!!! A Her2 lobular breast cancer survivor...6 years NED...has
had to fight every inch of the way because according to "studies", insurance companies, even some "oncologists"...Lobular is NEVER Her2+. Never say never!!!

[lisagh]

Mammogram time yall! It's Pinktober-mixed feelings on that....last year I walked 60 miles in 3 day ATL Komen Walk for Breast Cancer; this year I am living the life of a breast cancer patient. PLEASE if you are a woman- keep your mammograms on schedule. If you are a man, please nag your female family members to get their mammos. There is NO prevention for this brutal disease-only early detection.

This was my facebook status today. Pretty much sums up my opinion.

[sarah]

like Lisa's "no prevention but early detection" the earlier they find it, the better the odds.
I have never, never, never been told it was my fault and never made to feel guilty nor have I felt it was my fault and it makes me angry to hear that you've somehow received that message. If it's your doctor, change doctors. I've never heard of anyone being told BC was their fault.
Doctors don't even tell that to patients who smoked and got lung or throat cancer, they just say stop smoking. How is it "our" fault??? what do they say "we" did or didn't do???
I think you are still in shock from the diagnosis, it is frightening. Take heart that there are so many people on this site who have survived metatastic bc for a decade or more and still going.
I think it's great you have a goal and purpose and it will be very helpful.
Take care of yourself, try to have some fun.
hugs
sarah

[Jackie07]

Pay attention to yourself; take good care of yourself; be proactive and trust yourself - it's your body, nobody knows it better than yourself!

[Debbie L.]

My very rough draft response, comments welcomed. Sorry it is so long, but it's just not a short nor simple topic:

I wish we had made enough progress in stopping breast cancer that we could be justified in celebrating about it for a whole month. But we have not made that progress. Despite years of intense research and billions of dollars spent, we have made barely a dent in the number of women and men who die each year of breast cancer.

Back when pink ribbons and the designation of October as “Breast Cancer Awareness Month” got started, there probably WAS a need to be sure women knew the current recommendations for breast health, and felt safe to seek care. There probably WAS a need to make breast cancer less of a secret disease and one that people were able talk about more comfortably.

I’ve never been sure what exactly was meant by “awareness”, but over the years it’s been closely linked to that other tenacious phrase: “early” detection. Despite more information every year that tells us that the behavior of an individual's cancer has little to do with the size at detection and much more to do with the biology of an individual’s tumor cells, we cling to that myth that every woman who does the recommended surveillance will save her life because her cancer will be detected "early".

Yet study after study questions that there is ANY benefit to mammography, in terms of saving lives. Even the studies that do show benefit show such a small benefit that it’s amazing to me that we continue to worship mammography as the answer. It’s what we have, we should probably continue to use it, but it is NOT the answer. Think about it -- most women who die of breast cancer had their cancer detected by mammography or some form of self-exam.

So what are we trying to accomplish in October? Women are aware, and have been for a LONG time now. Yet instead of scaling back or changing the message a bit, this October thing just grows and grows. It’s an industry now. Under the guise of promoting “awareness”, there is a lot of money being made in October. We could argue about which pink promos actually result in some benefit to the state of breast cancer, or to individuals with breast cancer — and which ones merely increase profits for the company doing the promotion. BCA (Breast Cancer Action) has information about that, if you’re interested.

But setting aside the issues of awareness (we have it, we don’t need any more of it) and fundraising (beware the pink fried chicken) -- what bothers me the most about Breast Cancer Industry Month is the tone. The tone is festive and celebratory. There is nothing festive about breast cancer. Treatment is not festive. The fear that goes along with diagnosis is not festive. Recurrence, which means living the rest of one's life with breast cancer, is definitely not festive. The financial burdens that accompany treatment are not festive. The implications to family and loved ones are not festive. Death is not festive.

And celebratory? Yes, there have been some advances and a few of us owe our lives to those advances. That we cannot know which ones of us owe that debt, until we die of something not-breast-cancer, is just one of the illustrations of how little we know and how far we have to go before it will be time to celebrate.

I’ve been paying attention to the science of breast cancer for over 10 years now. In the beginning, I was amazed and encouraged by the scope of the work to figure out breast cancer — so many brilliant minds, dedicated to finding the answers. I was heartened each time I’d read of an advance, even when the advance was in a cell culture in a lab or in one of the many millions of cured mice. Over the years, my enthusiasm has waned. Even when the advances are in humans, they are incremental advances, and ones that come at a cost (both in terms of toxicities and dollars). Each new understanding, although interesting — only opens the door to more questions. And as we tunnel down into each new question, the investigations become more complex and the path narrows. Each individual brilliant mind is losing sight of the broader perspective, and there is much redundancy (waste) of efforts because there is no coordination of those efforts.

I believe that it’s time to change the focus, and the conversation. I am no longer satisfied with more of the same. We have too little to show for our years of effort, in terms of lives saved. It’s time to take a closer look at the processes of research, and to find ways to do it differently -- so that it translates not just into knowing more about breast cancer, but so that it translates into saving lives.

Over my years of breast cancer advocacy, I’ve tunneled-down a bit myself. I'm now doing mostly research advocacy. Over these years, I’ve often asked myself hard questions, about whether what I’m doing is making any difference at all. I’ve asked myself if what I’m doing is not simply a recreation for me, serving no real purpose except to (perhaps falsely) bolster my self-satisfaction.

I’m still asking those questions, but I’ve found a place where I can be sure to make a difference, and I’m jumping wholeheartedly on board that project. It’s the National Breast Cancer Coalition’s “Deadline 2020 Campaign”. http://www.breastcancerdeadline2020.org/ It’s about changing the conversation, and the focus. There is more to it than could be summarized in a few sentences. NBCC is holding summits and catalyst meetings on the neglected topics of breast cancer prevention, and prevention of metastasis — and they are developing strategic plans that will coordinate and focus research on these topics. On the policy front, NBCC’s #1 priority for 2011 is the “Accelerating the End of Breast Cancer Act” : http://tinyurl.com/3bjk4a4

Are you with us?

Debbie Laxague

[NEDenise]

Okay...
This was hard! It brought up a lot of things I don't have answers for...Like: I certainly don't want my open letter to give the impression that it's "my fault" I have cancer. Because, I don't believe that for one second! Not even half a second!! I'm not sure it's anyone's fault, but I know I didn't make it happen!!

But in the spirit of "don't make the perfect the enemy of the good"...
Here's what I came up with in answer to Nora's challenge.
It's in the form of a letter to my friend.
My hope is to remind my friend that she has to be her own advocate...
and that her first line of defense (until we have a vaccine or a cure) is to be vigilant...
and that she has to be be willing to be a "pain" until she gets what she needs.


October 2012
My Dear Friend,
It’s October again…time to be “aware” of Breast Cancer.
Trust me…Cancer is out there every day…not just in October.
Breast cancer is a silent predator.
There’s no one sure way to evade it.
Use all the weapons in your arsenal, because it will.
Cancer will hide while it stalks you.
So protect yourself!
~ Have that annual mammogram. Every year! It doesn’t always catch cancer, but it sometimes does. Why risk it?

~ Do your monthly BSE. Every month! Or have your partner do it for you! Could be the most enjoyable way to detect cancer…way better than a biopsy!

~ Listen to your body. All the time! She may be trying to tell you something!
. If you don’t feel “right”, keep insisting until your doctor figures out why.
. Pain is not normal…ever!
. Overwhelming fatigue is not your lot in life!

Listen when your body talks…it’s her life too!
I wrote this poem for you…to remind you to take care of yourself.

With love,
Your Friend

Only one body to last a lifetime.
Cancer waits silently
To attack.
Only I can protect me
Because only I know my body.
Every bump, every sensation,
Reminds me to care for this one body...so it lasts a lifetime.

[norkdo]

Debbie: this is fantastic. I really really think this should be sent as an article somewhere this month. well said. you said what I was too inarticulate and upset to say. well done.

[norkdo]

denise: re: Overwhelming fatigue is not your lot in life! thank you so much for that! I will try to repeat this one everyday. My onc was upset that after my second chemo i told him i was tired all the time. He said that wasn't a good sign, because by the end of my sixth chemo i would be cumulatively very tired. he was right cos here I am with only two more chemos to go and my energy is just kaput.

[tricia keegan]

I think Mammo's should be routine for all women all over the world far younger than fifty, the majority of the women I've met with bc over my six years have all been dx far earlier than this including myself! I was lucky I found the tumour while showering but it was already invasive and spread to the nodes by then!!
Early detection is vital is my message!!

[Soccermom]

Written by my BC Survivor friend, Marcia Hahnefield Dietrick and posted on her FB page (with permission for me to post it here!)....

"October used to mean autumn, harvest festivals, jack-o-lanterns, Halloween costumes, and early Christmas shopping. Now October conjures up pink, lots and lots of pink.

I was diagnosed with stage 2 breast cancer in September 2007, right as stores were jumping on the bandwagon to get the pink merchandise on shelves. In those early days, it was quite disconcerting to be confronted with pink ribbons at every turn. No store was safe, no magazine, nor newspaper. There was no place to escape the onslaught. The morning I arrived at the hospital for my bilateral mastectomies, the trees were adorned with pink ribbons. It wasn’t just for me. It was Breast Cancer Awareness Month aka Pinktober, and it was everywhere.

Many people are sick of pink. They claim to be aware enough. The reality is that for everyone who claims to be aware, however, there is someone else equally unaware. Not unaware that breast cancer exists, but unaware of the truths of breast cancer; what it is, what it does, what treatment actually consists of, and the realities of the aftermath of treatment.

The ugly statistical truth is that 1.3 million women will be diagnosed with breast cancer worldwide this year, and half a million worldwide will die. In the U.S. alone, 230,480 women will be diagnosed with invasive breast cancer and 57,650 with non-invasive breast cancer. Additionally, 39,520 women in the U.S. will die of breast cancer this year. Men are not safe either. 2,140 men will be diagnosed with breast cancer in the U.S., and 450 men in the U.S. will die of breast cancer in 2011. Breast cancer is the second leading cancer cause of death in women worldwide, surpassed only by lung cancer. There are 2.6 million breast cancer survivors in the U.S. alone, many of whom are dealing with the lifelong side effects of treatment, and others of whom are dying each day. Breast cancer gets the attention it does by the sheer volume of those afflicted with this disease.

When I volunteer at health fairs, many women attempt to pass by the breast cancer booth, telling me they aren’t at risk because no one in their family has ever had breast cancer. Talk about unaware! 85% of those diagnosed have no family history; they are the first in their family to be diagnosed. Of the 15% that have a family history, only 5% carry the BRCA gene mutation. If you are a woman, you need to be aware! You are at risk.

Prior to diagnosis, I was naïve myself. I grew up thinking breast cancer didn’t kill. It mutilated, but it didn’t kill; or so I thought. My mother was diagnosed in 1969, when I was 2 years old. She had a mutilating Halstead radical mastectomy of the 1960’s variety, and no other treatment. She survived 41 years through sheer luck, ultimately dying of a cardiac event at the age of 84. She was one of the lucky ones whose breast cancer had not traveled outside the breast at the time of surgery.

My first experience with a breast cancer death was a family acquaintance. I remember wondering why she let her cancer go for so long that she would actually die from it. My thought was you find it, you remove a breast, and you’re done. This was the only image of breast cancer I had as a child. It is the blame the victim mentality that we often still see. Surely, the only ones who die are the ones who ignore symptoms. Unfortunately, this is not true. Even women initially diagnosed with early stage breast cancer, may eventually metastasize and die.

Even with the specter of breast cancer looming over me, I always suspected it would be no big deal. I certainly wouldn’t lose a breast, not in this day and age. I figured a little lumpectomy, some radiation, and I’d be done. So wrong, and so naïve. Four years after an early stage diagnosis, multiple surgeries, chemotherapy, endocrine treatments, and I am still a breast cancer patient being actively treated with anti-estrogen medications.

Once I was diagnosed, reality set in quickly as I began learning about breast cancer. Reality smacked me in the face as I began treatment. Reality knocked me down and ran over me as I watched the women I’d met suffer and die.

Breast cancer isn’t pretty, or fluffy or fun. It’s not Barbie dolls adorned in pink, nor cuddly pink stuffed animals wearing awareness ribbons. Nor is it the “good” cancer to get, or the “easy” cancer. It’s mastectomies, chemo, radiation, years of endocrine therapy to prevent recurrence, and ultimately for many of us, death itself. The simple truth is, THERE IS NO CURE FOR BREAST CANCER. Anyone that says there is, is wrong.

Some people will achieve a personal “cure” per se. They will receive treatment, and never recur. This is because their breast cancer was discovered and removed before it left the breast and achieved the power to kill. Unfortunately, medical science cannot tell us who those women are; therefore, those diagnosed with breast cancer are put through the rigors of treatment. The more advanced the stage at diagnosis, the more treatment. Invasive breast cancer is any breast cancer that has broken through the duct, and thereby gained access to the lymph node system, or bloodstream. This means any stage above a Stage 0. The lymph and blood systems are the modes of travel for breast cancer. Breast cancer has a goal, and it is not to hang out it in the breast, but rather to hitch a ride through the lymph nodes or blood stream, in order to colonize the bones, liver, lungs, and brain of its host. All breast cancer deaths are caused by metastatic disease; breast cancer that has set up shop outside the breast. Breast cancer confined to the breast cannot kill. We must have better means of detecting breast cancer before it has left the breast, and we must have a cure for those with metastatic disease.

The horror of a breast cancer diagnosis is that no one can tell who will eventually metastasize, and who will not. Early stage women may still eventually die. Women without positive lymph nodes may still eventually die. Breast cancer is an occult cancer. It likes to hide, to bide its time. It may be quite happy to hide for years. 70% of breast cancers are estrogen driven. Estrogen is the fuel source which keeps those cancer cells alive, and allows them to grow and spread. For women with estrogen positive breast cancers, they can recur years or decades after the original diagnosis. These cancer cells may hide for years before being detectable on radiological screening. That is why many women live for years, thinking they are cancer free, only to recur with metastatic disease years later. I recently had dinner with a friend of mine. We both were diagnosed at a Stage 2. She was coming up on her 5 year diagnosis anniversary of being cancer free. Several weeks later, my friend learned she had metastatic breast cancer. I have seen this happen time and again. It is a devastating reality of breast cancer.

We need research into better screening methods. Despite 10 years of screening mammograms beginning at age 30 due to my family history, my invasive 2.9-cm stage 2 tumor was not detected by medical science. I found it only because it hurt. Never let anyone tell you that breast cancer does not hurt. They are wrong. It may hurt, or it may not. The doctor and I could feel my lump, but the mammogram still could not see it. Fortunately, an ultrasound could. Mammograms are the gold standard of detecting breast cancer, yet they failed me. Ideally my tumor should have been detected as a non-invasive Stage 0 tumor, measuring in the millimeters. Unfortunately, mammograms have difficulty reading through the dense breast tissue of women under 50.

We need better treatments. Treatments that of themselves do not kill. Treatments that guarantee a cure. Breast cancer treatment is barbaric. The slash, poison, burn of surgery, chemo and radiation is not a cure, and can lead to life long side effects and death. The chemo that is supposed to keep us alive can kill us. It can cause heart damage that may take months or years to manifest, or it may cause immediate heart failure. It can cause life threatening allergic reactions. That is why I was doused in steroids before each treatment. Some breast cancer chemo causes leukemia. I have seen women survive breast cancer, only to die from treatment induced leukemia. Chemo weakens the immune system to the point that some of us die from opportunistic infections. Some breast cancer chemos cause permanent neuropathy in the feet and hands. Some damage our bones and cause osteoporosis. Chemo fries the ovaries, and brings on menopause which is often permanent. Chemo took not only all my hair, but it also sent me to the ER with tachycardia, gave me respiratory infections with every dose, caused a painful folliculitis skin infection on my bald head, shrunk my gums to the point that my front tooth veneer fell out of my mouth, and cooked my ovaries. Radiation induces extreme fatigue, and can cause heart and lung issues. The surgical removal of lymph nodes puts a woman at risk of lymphadema for the rest of her life.

Breast reconstruction is not a bonus of breast cancer. It is not a free boob job. It does not by any means compensate for what was lost. My “from scratch” reconstruction which took months to complete, required weekly tissue expansions, and involved 3 surgeries, cadaver skin and some tattooing. It was not the equivalent of a breast reduction or enhancement. The result was two scar crossed silicone rocks on my chest devoid of all feeling. First my breasts were removed, leaving me flatter than a board for 10 months while I underwent chemo and recovery. The process involved removing the breasts, scraping the tissue down to the chest wall, followed by the digging out of a
whole lot of lymph nodes. Ten months later, when reconstruction began, my chest muscle was separated from my chest wall and a couple of flat whoopee cushion looking objects called tissue expanders were shoved under the muscle, and sewn shut. Then on a weekly basis for several months, a needle was jabbed into the metal port of each expander and saline injected to stretch my skin until it reached the right size. This was a painful experience which caused muscle spasms, chest and back pain and a general inability to sleep or be comfortable. Once my expanders were appropriately expanded, then I had another surgery to remove them and replace them with the silicone rocks that are currently holding up my shirt. Mastectomy patients often do not have enough skin and real tissue to cover the expanders/implants. Guess what! I've got cadaver skin under my own skin to help keep these things in place, and to keep them from poking a hole through my own skin. That does happen sometimes. Not to me though, thanks to a dead skin donor.

Successful breast reconstruction is not a guarantee either. I have known too many women whose reconstructions failed due to tissue death or infection.

Even if you have both breasts removed, you still have breast tissue and can still develop another breast cancer. That's because breast tissue runs from collar bone to ribs, and from armpit to armpit. No matter how brilliant, no surgeon can get every single piece of breast tissue out of a field that large. Therefore even after breast removal, it is still possible to develop recurrences on the scar line or chest wall. So in addition to the possibility of becoming metastatic, I can still develop another primary breast cancer in what is left.

My answer to the “losing a breast is not a big deal” comments, is yes it is for many of us. It is a very big deal, with very real psychological fall out. In a culture that worships the female breast, the trauma of mastectomy is very real.

I have heard it said that “at least it wasn’t an internal organ”. Unfortunately, many of us don’t stop at losing a breast if we are young and premenopausal at diagnosis. Ovarian suppression or removal is a common treatment for breast cancer, as approximately 70% of breast cancers require estrogen as their fuel source. This means early menopause. My insides are as devoid of female organs as my chest is of real cleavage. Becoming menopausal at a young age carries with it extreme side effects, and health risks, including osteoporosis and heart disease. Even after menopause, the female body continues to make some estrogen. Therefore, anti-hormonal pills are necessary for those of us with
estrogen driven cancers. Tamoxifen mottled the maculas of both my eyes. Arimidex left me virtually crippled with arthritis and tendon pain. Femara caused mouth and esophageal sores. I am not unique. Many women cannot finish anti-estrogen treatment due to side effects.

We need a 3 prong approach to breast cancer: Awareness – Prevention – Cure.

Awareness: The truth must be known.

Prevention: We have to stop more cases of breast cancer from occurring. That means research into why breast cancer occurs. We have to look at the chemicals we put into food, makeup, lotions, and our environment in general.

Cure: We have to find a cure for those already diagnosed. We have to stop breast cancer from occurring in the first place, then we need to make sure it can never metastasize outside the breast. For those that do become metastatic, we have to find a way to cure them of cancer forever. Current breast cancer treatments can lengthen survival time, but they cannot cure. Breast cancer is smart. It learns how to become immune to chemotherapy. We need treatments that are smarter. We also need treatments that won’t kill. Treatments that don’t damage hearts, bring on lethal infections, cause other cancers or shutdown body systems.

Until we reach the day that we have a cure, you must be aware and protect yourself.

Know the warning signs of breast cancer which include a lump, knot or thickening in the breast or armpit; swelling, warmth, redness or darkening of the breast; a change in the size or shape of the breast; dimpling or puckering of the skin on the breast; an itchy, scaly sore on the nipple; pulling in of the nipple or other part of breast; nipple discharge; or pain that does not go away. Do not let anyone ever tell you that breast cancer doesn’t hurt. Pain is the only way I found my Stage 2 tumor!

Know your risk. Factors that increase your risk include getting older, as risk increases with age. Do not let anyone tell you that you are too young for breast cancer though! I was too young at age 40, as were the hundreds of women under the age of 40 that I have since met; many of whom are now dead. Breast cancer diagnosed at a younger age, tends to be more aggressive and more deadly. The youngest woman I met was 17. She is now metastatic. Other risk factors include being female; carrying the BRCA gene mutation; having a family history of breast, ovarian or
prostate cancer; having a personal history of cancer; previous radiation treatments; a first childbirth after the age of 30, or having never given birth; not breastfeeding after childbirth; early onset of menstruation; late onset of menopause; drinking alcohol; being of Ashkenazi Jewish heritage; being overweight; and using hormones after menopause.

To protect yourself you must know your family health history, and talk to your medical provider about your personal risk of breast cancer. You need to be screened. Talk to your doctor about which screening tests you need, and at what age. Have a mammogram every year starting at age 40 if you are at average risk . If you are at high risk, or have dense breast tissue, ask for additional screening. Mammography is not fail proof, and often cannot see through dense tissue. Most women under 50 have dense breast tissue. Have a clinical breast exam performed by a doctor at least every 3 years starting at age 20, and every year starting at age 40. Perform monthly breast self-exams. The most important thing is to know your body, and know what is normal for you. If you notice something abnormal, seek medical attention immediately. Never let anyone tell you to wait, that you are too young, or that breast cancer does not hurt.

You cannot control all risk factors, and even if you control everything, there is no guarantee. This disease does not discriminate. It does not care if you are “too young for breast cancer”. Nor does it care whether you are single or married, raising children or not, insured or not, in school or not, able to take off work to heal, or not. It’s an equal opportunity killer.

Until the day that no one else dies, until no more children are left behind, until no more spouses, friends, and family are left behind to bear witness, we will not be done"

[norkdo]

Debbie: re your letter above (
I wish we had made enough progress in stopping breast cancer that we could be justified in celebrating about it for a whole month. But we have not made that progress. Despite years of intense research and billions of dollars spent, we have made barely a dent in the number of women and men who die each year of breast cancer.

Back when pink ribbons and the designation of October as “Breast Cancer Awareness Month” got started, there probably WAS a need ...)
AND...SOCCERMOM'S friend's excellent letter....
wow.
reread Debbie's again tonight. am so incredibly inspired. These are so true. Have to get these out there this month.....cannot thank you enough. wow. so true.

[Margerie]

I would say Awareness is NOT a cure.

Early Detection is not a cure.

There is no such thing as catching cancer "early" If it is cancer, it is too late for early.

Breast cancer is not cute, pink or sexy

Breast cancer is ugly.

I am sick of actresses saying they are cancer-free. If you are going to speak, at least speak the truth. There are no guarantees honey.

The same BS that happens in politics, happen in the breast cancer research world: waste, greed, inefficiency, red tape, doing the same thing over and over again with the same non-results.


This article was linked to the Breast Cancer Action Facebook Page and I think it is a very good read.

The Last Word on Nothing

[StephN]

This is a wonderful thread!
Being away I missed the start of it and just now had the time to get through it. Everyone should read this. There are truths in each post.

Some use more words than others to say essentially the same thing, but the reasoning is very important.

I have just today been offered participation in a vaccine trial that is for HER2 patients (from stage II to IV) who have had Herceptin and are in remission. Seriously considering it, as I know that this disease and its repercussions are lurking around any corner waiting to pounce when we least espect it.

I have heard it said that C-U-R-E is a 4-letter word. It is true for some, but a pipe dream for so many.

This disease has had a hardening effect on me in the aspect that my gut is always on guard. I am always on Sentry Duty.

Early detection is better than late detection in most cases. The less we have to undergo in order to reach remission, the better the recovery and energy reattained.

We need EVERY month to be Breast Cancer VIGILANCE month. Awareness is worthless if the knowledge is not acted upon.

[Mtngrl]

This is a fascinating and thought-provoking thread.

One interesting thing about it is that even we, who are "experts" in a sense, do not all agree.

I read the "The Last Word on Nothing" post yesterday and reposted it on facebook. I highly recommend it for its message that the old model of breast cancer as something that starts small, gets progressively worse (at a steady rate) and is invariably fatal if not treated has been discredited. On this forum there are at least two women who were diagnosed and treated at Stage 0 and are now Stage IV. Twenty to thirty percent of people with "early" stage breast cancer will go on to Stage IV. Six to ten percent are Stage IV at diagnosis. Some breast cancers, in some women, will never metastasize and therefore will never be a threat to their lives. In some people, with some cancers, the cure is actually worse than the disease. Prostate cancer is an example. Unfortunately, with breast cancer there's no way to tell which is which. This muddy, cloudy state of facts is not as "celebratory" or romantic as the "early detection = cure" message. It takes longer to say it, and process it.

The U.S. "war on cancer" has been going on for 40 years. Some cancers with clear causes (lung and stomach) are much less prevalent now. Some others (Non-Hodgkins Lymphoma and Acute Lymphoblastic Leukemia) are more "curable" than they used to be. And although the number of people dying from breast cancer hasn't changed, the population has increased, so the percentages are going down.

Mammogram has its own risks. Radiation to the breast might actually cause cancer. There is certainly a link between radiation exposure and breast cancer. It can also lead to a false sense of security, with false negatives and to increased anxiety, expense and unnecessary risk, with false positives. Pre-menopausal women have a lower risk of contracting breast cancer and a higher rate of inaccurate results from mammograms. That is why routine annual screenings for women in their 40's is not the best use of health care resources.

Diagnostic mammograms, as opposed to routine screening, are another story. I am grateful for my diagnostic mammogram/sonogram, which I got because of some changes in my breast that I noticed first.

I know a woman who was Stage IV at diagnosis, which occurred one month after she had a "clear" mammogram. She found an enlarged lymph node under her arm. So much for "early detection."

It's extremely difficult to link environmental factors with cancer risk. It is also the case that many known carcinogens are under-regulated, possibly due to excessive industry influence on the legal process. Nowadays, too, the "job-killing regulations" meme is so pervasive you hear it on both sides of the aisle, but very few people are saying we need "life-saving regulations." I think we do. And, in fact, regulations and restrictions actually spur innovation and economic growth.

It's time that more attention was paid to the "common good" in all its dimensions. Maybe by being too focused on one kind of illness public health advocates are shooting themselves in the foot. The disparities in health care access in the US are indefensible. Maybe we could all do more overall good by working hard to remove the injustices and inequities.

[fauxgypsy]

I am already a little tired of Pink (not you, Pink). The commercialization of Breast Cancer. It has started to seem a little celebratory. Sort of like the expressions of ectasy the weather people get when there is a major hurricane and they finally have something to talk about. I don't know how much money is raised through this Pink campaign and I don't know where it goes. I am sure it helps. Sometimes though, it just seems like Buy, Buy, Buy.

Amy, you made a good point. All the research in the world doesn't help when many people are struggling just to get basic healthcare.

[Ellie F]

Hi Steph
Not trying to hijack the thread but is the vaccine you have been offered at the University of Washington tumour vaccine group at Seattle??
I e-mailed them in the spring but it wasn't available then.
Thanks
Ellie

[sarah]

Hello Mountain Girl,
A thoughtful post that covers many concerns. I suspect environmental influences in my cancers plus probably a little stress! and genes.

I agree with the general direction of this awareness post, that awareness has succeeded, now the money should be spent on the cure. What if Dr. Slamon hadn't had a wealthy patient who came aboard when the drug company (that eventually profited from his drug) decided to stop funding him? How many scientists are out there on the verge of something equally big but needing funding?
Would it make sense to do a write in to the various cancer associations (there are so many!!) like Komen and say "we as patients want you to spend more on supporting scientists working on a cure. 6% just isn't enough."
Reading those stats is frightening. We all need those odds to be better and that takes research and funding for it. The drug companies don't always back the innovative ideas until they are proven viable (think Herceptin) and we need more creatively thinking scientists working on the cure and we need it now!
Maybe buttons that say "support cancer research" ???