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nosurrender

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Reply with quote  #1 
In honor of breast cancer awareness month let's have a little test on how pinked we were and are.....

The BC Awareness People tell us:
Get your first screening at age 40


Truth:
My cancer was found before the age of 40 and if my gyn had not insisted I get a baseline mammo at 35 I wouldn't be here now

The BC Awareness People Lead Us to Believe:
Breast Cancer is one size fits all


Truth:
Breast cancer comes in many types and there are actually "bad ones" vs "good ones"
I had the "bad" variety the first time around

The BC Awareness People Show Us:
Brave young moms in pretty bandanas who run 10Ks in the morning, get their chemo in the afternoon and then teach night school


Truth:
There are brave young moms with BC, there are also not so brave women who are single, divorced, retired, have no kids, CAN'T have kids because of BC and who are barely able to get breakfast on the table because today is a chemo day.

The BC Awareness People Lead Us to Believe:
We are all cured, no one dies, this disease is licked and if you just buy a pink cuisinart you feel heaps better


Truth:
Over 40,000 women die a year of this disease. We are very close to finding targeted treatment that won't kill our whole bodies while it kills the cancer cells, and if we all spent less money on pink cuisinarts and gave it to research labs we would be closer to those humane treatments.

The BC Awareness People Say:
You are so brave


Truth:
You have no choice. It is like standing in the rain. They have umbrellas. We don't. So we get soaked. We live through it because we do what we have to do.

The BC Awareness People Make Us Feel:
Like we are alone on a desert island. They don't want to get too close to the real thing so they sell a pink Ring Ding Junior in our honor instead


Truth:
We are not alone. We have legions of sisters. We take care of our own and watch each other's backs. No one can comprehend the bond we have or the collective strength between us. And that is OK. We don't need the BC Awareness People. We have each other.


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Bren

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Reply with quote  #2 
Thanks Gina,

The myths and truths are painful.  Why do "they" have to make it sound like such a glamorous disease.

This is the truth in numbers that are easy to relate to:

27 women in the U.S. are DIAGNOSED with BC (including DCIS) every HOUR.
(approximately 1 every 2 minutes)

4 woman in the U.S. DIE every HOUR.
(approximately 1 every 15 minutes)

Should I break that down into seconds and send that off to every single news agency, Senator, Congressman and anybody else who will listen.  Maybe Yoplait would up their contributions on those silly pink lids.


cowgirl

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Reply with quote  #3 
I saw something on finances of cancer patients. What we went through is yes we had great insurance but Hubby taking off for my appointments cost his vacation time, and a lot of wages. FMLA meant us being poor for a big portion of the year.

It had more to do with how FMLA is implemented than what the company wanted to do for us. Because he had held his vacation days, he had to use them first before FMLA. Many in his company used their vacation days up and played during FMLA.

Likewise when he had surgery we lost even more vacation. Okay I feel better now.

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Bren

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Reply with quote  #4 
Insurance, what insurance.  Money, what money.

I had to go on Medicaid after years of having the best insurance possible and the very best doctors that insurance could buy.

It took awhile to be grateful that I paid 30 years into that system and get past my pride. 

Now I thank God for the Cervical and Breast Cancer Screening Act here in VA.

Yea ... breast cancer is really glamorous, rich or poor, nothing that a pink quisinart won't fix. 
wildabouthorses

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Reply with quote  #5 

They say to get a mammogram every year, you feel like that is the best detecter ever, when having a MRI along with a mammogram is even better at catching breast cancer.
 I was getting yearly mammograms faithfully as I was getting yearly pap smears too because I was still on birth control pills. To renew my prescription my family doc also made these other appointments for me every year. They found something suspicous in my left side August 06 during a mammogram. Yet my worse and twice as big and invasive cancer in the right was never seen by the mammograms, an MRI and later a Ultrasound showed it instead. The insurance companies don't like MRI's because of the expense and false readings. How is the false readings any different from the mammograms false readings? Why not make everyone have a MRI along with the mamograms to rule out any breast cancer no matter what the guidelines suggest?  Wouldn't you really want to be able to find cancer earlier even if it took an MRI to find what the mammograms miss? Only reason I got a MRI is after I got a second opinion I switched Breast Surgeons and the second one ordered a MRI (January 07) to look at both breasts even though I already had a surgical biopsy/lumpectomy done in the left side by the first one with a tumor half the size and not invasive.  I was shocked to find out the difference between the two surgeons, the first one was like dealing with someone from the 1960s and the second one was like dealing with someone from 2007 with her methods! The first one's staff was rude and the second one's staff was wonderful and understanding. It can make all the difference in the world to have a good caring surgeon and staff while dealing with breast cancer.  After the MRI saw the cancer in my right the BS ordered a mammogram and again it didn't show it in the mammogram. She did a ultrasound to do a needle biopsy and it saw it too. This second BS told me to get off my birth control pills as it was feeding my cancer, don't know why the first one never told me that. The first surgeon wanted to go back in another surgery and do a SNB, the second opinon I got from one doc and the new BS said no, your cancer wasn't invasive in the left so no need to check the nodes at all.

  One good thing came of my case, my rads doctor asked if she could use my case before the tumor board as it was a perfect example why women need MRI's along with Mammograms. I said anything to help other women catch it early like mine was.  She said they (the tumor board) are now recommending MRI's along with mammograms. Around this time ACS came out with its newest guidlines. I looked over the list and not one would have related to me and my situation. I wouldn't have thought I needed to be checked for breast cancer by their newest guidlines let alone need a MRI. And the ACS is now recommending MRI's for "high risk" women. If my docs had gone by the new guidelines they wouldn't have caught my worse cancer as early as they did! Info of the newest guidelines is here... http://www.medicalnewstoday.com/articles/66909.php

  So despite the new guidelines I feel every woman should get a yearly MRI along with a Mammogram to detect breast cancer.


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jenni__ca

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Reply with quote  #6 
mammo didn't see my 7+cm tumor either ... (ultrasound did) = 2004
on the other hand i just got a bill for my breast mri (mind you i only have one boob) ... insurance so far is denying payment ... $4,000

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wildabouthorses

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Reply with quote  #7 

Thats so sad Jenni when MRI's and Ultrasounds could be saving more lives than the mammograms do. I had a .5 cm cancer in the left and 1.5 cm in the right so mine was caught early and I will always wonder just how far the right one could have spread if I only had mammograms done on it. My SNB was clear!


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nosurrender

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Reply with quote  #8 
YES! To the MRI!!!
MRI found my second cancer- but doc's ignored it because "There are so many false positives"
Sometimes I want to just shake them!


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lizws

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Reply with quote  #9 

After my dx. I had a breast MRI and an additional tumor was found.  It was lobular as well. I had already made up my mind to take them both off.

My insurance pays for yearly breast MRI even though I've had both removed and had recon.  At least they have twice so far.


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Indigoblue

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Reply with quote  #10 
Great Thread!

BSGI vs MRI, High Resolution Gamma Camera and Ic-Sestambi Testing is supposed to be a new test proving accurate findings with few "false Positives".  I read the artical at http:// cancercompass.com./cancernews/1,13248,00.htm?
Don't know if you can access it or not unless you are signed up as a member.  It has some good information on occasion.  I haven't had time to look into the details.  Sounds promising, however. 

I would have had a bilateral had I known all I know since dx almost 2 years ago.  The information I was given (with 5 "second opinions"}, was worthless, and intimidating while giving me the impression the triple negative was "cure-able".  What a joke. 

Before dx, I collected so much "pink shit", it was everywhere (thrift shop-o-holic).  I didn't like the color, particularly, but the pale shades are pretty.
Recently, I've been creating assemblages of all the junk I've acquired (I don't go shopping, anymore, ever, and never thrift stores!!! I think I was crazy at the time, thinking I had breast cancer which wasn't diagnosed: and I was right.)

One of the assemblages is pink...very pink...it's grotesque.  So repulsive to my eyes that I painted it BLACK and BLUE, flecks of pink poking through here and there with the impression of a woman in a reclining position, groping for something...dark and scary looking now.  I might cover it with sheer pink scarves and shellac the thing.  It's good therapy.   Try it, you'll like it.  The paintings/assemblages give me a sense of peace and anger management is utilized.

I am angry about having this freaking disease, and how the ladeedah advertising downplays the serious and horrifying aspects of diagnosis, treatment, and future side effects. 

If there was a cure, I wonder how many hospitals, pharmaceutical businesses, scientists, doctors, and insurance companies would go bankrupt?

Indi

nosurrender

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Reply with quote  #11 
Well Indi, you are going to love this.
I had someone say to me yesterday "Happy Breast Cancer Awareness Month!"
I stood there STUNNED.
Finally I said WHAT?
"It's YOUR MONTH!" she said.....

I tried to be calm and managed to say " every month is my friggin month. I AM AWARE of breast cancer- thanks for the heads up"


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Bren

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Reply with quote  #12 
"Happy Breast Cancer Awareness Month"  My friggin' jaw is on the floor!  I'm so pissed off ... I've got to go out and dig up another tree stump or maybe I'll even paint the rest of the bathroom.

Better get off here before I let loose with a stream of obscenities.

"THEY" JUST DON"T GET IT!!

Hey Gina ... maybe a handout of the flyer with the warnings of Xeloda would do the trick.  Or maybe a picture of Shelli K's family. 

When do we stop being so polite about it?

It's not a very polite disease, now is it.
nosurrender

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Reply with quote  #13 
You know what I wanted to say Bren??
What month is "Husband Left you for a younger Woman Awareness Month??"
Because that is what happened to her and I wonder how that would make her feel if people were "Celebrating" that happy event!
But I am  not that quick with comebacks. I only think of them an hour later!


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Reply with quote  #14 
Wow good one Gina.  This is your month my ass.  I dont think I could hold it in if somebody said that to me. 

Bren-I'm with you.  When angry chopping firewood works also.

Amy
Indigoblue

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Reply with quote  #15 

Pretentious commentaries dispersed from insensitive brainless fools who don't know what else to say, have a rippling affect on those of us who "know" the truth about breast cancer.  It's stuns, stings, and "shivers me timbers" when even doctors and nurses spit thoughtless "happy drop dead" words to compensate for their lack of sensitivity and compassion.

Good grief! I don't even like "happy birthday" or "Merry new year"! 
The "happy anniversary" gets my anger bubbling, as well.  Gee, so glad you made it through chemo...right.  Want some? 

This month is getting more annoying as the weeks go by.  The newspaper had stickers stuck on the front page as an advertisement for a hospital, telling women to go have a mammogram at "their" breast cancer clinic. 
It was the hospital where I was treated.

I mistrust the whole business of breast cancer. Something is askew when your treatment depends on whether or not you can afford to pay. Are some women given the "best" or are there a bunch of "suits" using our fears and hopes to finance the medical institutions? 

An honest treatment plan usually figures into a patient's bank account, insurance plan,  who you know, how much you know, and if you know the system is predicated as to the type of care one receives. 

Insurance companies, MRI's , genetic testing, and the decisions we are forced to make seems like such a farce. Are we being used as financial windfalls for a corrupt system taking advantage when anyone is dx with cancer? 

Last July there was a story in the newspaper about first-line treatment Cancer Drugs administered to patients instead of newer and more effective available (expensive)  and how "astounding and disappointing" that they are used so little.  The Lymphoma Research Foundation made claims that oncologists and surgeons are paid "not" to use drugs which otherwise cause fewer side effects and offer longer overall survival.  The drugs are expensive, as well as the testing procedures (MRI. etc). 

Zevalin and Bexxar are two, called radioimmunotherapies, delivering radioactive particles directly to cancerous cells to kill them.  Cost?  $25,000 per treatment.

Makes me wonder if there isn't some "wonder" therapy we have not been given because of the expense and red tape via FDA guidelines. 


Indi...

Gina, you always get my brain gears oiled and moving...sometimes I think you're like Dorothy in the Wizard of Oz!  Thanks to all who have posted on this thread.  Follow the yellow brick road, we're off to Emerald City, tra la!

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Reply with quote  #16 

Another sad fact is that too many women think that mammo's, sono's and MRI's are diagnostic tools, when they are in fact screening tools.  Too many woman are not told to get biopsy's.  Too many women are told that based on mammo's and sono's that they just have cysts, and to wait and see.  Too many women are told they are "too young" to have BC. 

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