Yes, Cancer Does Suck: I HAVE A FACE - I HAVE A NAME !!!! continued...

Tuesday, November 17, 2009

I HAVE A FACE - I HAVE A NAME !!!! continued...

Write your representatives senators & congressmen/woman....
Tell them you are opposed to this new shut up and die "guideline" which is merely a prelude of what's to come in our health care. TELL THEM YOU ARE WATCHING & PAYING ATTENTION. If we don't voice, they think we don't care. Please, don't let this opportunity slip through your fingers.

Representatives: http://www.house.gov/house/MemberWWW_by_State.shtml
Senators: http://www.senate.gov/general/contact_information/senators_cfm.cfm

You can copy and paste the below, be sure to READ IT BEFORE SENDING, it requires your changes.

I am opposed to the New Guidelines set forth by Preventive Services Task Force on changing the age of Breast Cancer Screening Recommendations to 50.

I have breast cancer.... (supply your story)
OR
I know someone who at 40 was diagnosed by mammography, when a doctor ignored her findings of lumps in her armpit, that was then diagnosed with advanced/metastatic/carcinoma of the breast. She would be dead by now if she waited till 50 for a mammogram.

The age for mammography should be at minimum one at age 30.

Thanks everybody!

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Begining of Story....

How it Unfolded (posted March 17, 2008)

I knew at the end of Summer ’07 “something wasn’t right”. You know, sometimes you can just FEEL it. Anyhow, I made an appointment with my doctor for a routine exam & informed her of my newer ‘problems’. I needed further examination. I waited till the first of the new year because something told me this would be BIG and we were getting MUCH better insurance the 1st of the year. Couple days before my “basement surgery” in January ’08, I had my mammogram at the same time as my blood tests for surgery. The very next day while healing from my surgery, I receive a certified letter from the hospital that my mammogram had issues. (I’m not surprised. That was really the reason I wanted that appointment in the first place.) So back I went for a Needle Core Biopsy. One of the worst procedures I’ve ever had (and I’ve had my share of needle pokes and surgeries). I wouldn’t wish it on my enemy (Actually, I hope I don’t have any of those). They just kept telling me, “I know it’s uncomfortable, just hang in there”. Uncomfortable my ass. Later, I’d find out WHY it was so horrible….. For one, it felt like they were sucking all the veins out of my arm, back and chest through their quite large needle. I’m not sure what 10 gauge is, but it sure looked awful big to be sticking in someone that was awake. Later I discovered, it sent me through the roof because, they had traveled with the needle and suction way beyond the area they numbed. This was cold turkey surgery. I didn’t get any whisky or leather to bite on! (I know this because I later had another one done elsewhere and didn’t feel much. Because they kept NUMBING THE TISSUE deeper and deeper as far as they needed to get.) So if you or anyone you know needs to have a core biopsy, tell them, it's YOUR BODY! TELL THEM TO STOP and NUMB IT DEEPER if you are feeling it! In any event, my doctor called me and said “you have nothing to worry about. It’s only PRE cancer. NOT cancer. Come in next week.” Next week I go in and she tells me, make an appointment with this surgeon and she’ll just remove the rest of that spot that the biopsy didn’t get. Hmmmm - So I get a copy of my pathology report and take it home. I start researching the terminology on it. Especially the second page, of which the secretary never gave to the doctor … and found out… this isn’t PRE cancer. This IS CANCER. And the worst of this kind as far as grade and aggressiveness. After one mess up after another from the secretary / hospital etc… I decided to go to the best hospital I could... Where, they moved at quite the pace to figure out exactly what is going on. Yes, it is breast cancer. Ductal Carcinoma In Situ = DCIS. High Grade Carcinoma / Comedo type. And guess what else? It’s all over the lymph nodes too. Had my surgery to remove the DCIS and she took out the lymph nodes under my arm. They don’t look good......Which brings us to today. I’m still sitting here with a drainage tube. I’m not sure if the pain is getting any less, or if I’m getting used to it.Oh, and I failed to mention, my husband’s place of business is shutting down. He’s out of a job and we’ll be out of insurance quite soon. The office seems to still all be in tact…. Funny, along comes the good insurance after all these years of crappy insurance… and now we only get 4 months to use it. That seems a bit premeditated. Or is it just me? Yes, COBRA is a great policy, but when you struggle as it is, can barely pay your mortgage (when you are half DONE paying it off) $1,500 a month for family insurance coverage, really isn’t much of a possibility.Through all of this, the hospital I’m traveling to has been absolutely fantastic. They are moving fast as possible to get me where I need to be, before the shit hits the fan in our wallets.And I keep thinking, had I not gone to this other hospital… the one near my home would have taken out the rest of the first tumor. Never seeing everything else going on in my body. I could have passed on by this summer.Considering my first doctor said “ONLY pre-cancer” and nothing to worry about in the first doctor's eyes, Perhaps I should look into my “over active cells” comment my initial doctor made about my basement surgery pathology report in January. . Wonder how many pages were missing from that report…..
Research Hospitals and ALWAYS get a second opinion!!!
~SEE Links at bottom for Hospital Ranks~

Breast Cancer Segregation

From MAMM MAGAZINE

In Their Own WordsExpanding on their efforts last year, members of the Metastatic Breast Cancer Network are working to designate October 13 as National Metastatic Breast Cancer Awareness Day. MBCN is calling for the various institutions in the breast cancer community—support groups, organizations and medical centers—to do their part to strengthen awareness of the disease. segregation

Following is an excerpt from MBCN’s call for support: Those of us who are not “survivors,” those of us who haven’t “beaten the disease,” those of us who are living with cancer day in and day out, need to be a part of the breast cancer community. Come October, we all see pink ribbons and we watch thousands of women with breast cancer march and speak out and rally around the cause. Yet one-third of women diagnosed with breast cancer are afraid to speak out about their situation because the cancer has metastasized. This is not discussed at rallies, and women with metastatic disease frequently don’t tell their breast cancer friends because we are viewed as the outcasts and failures. We are fearful of “coming out of the closet,” so we are left feeling isolated and ignored…and the cycle continues. Up front and center at all breast cancer events and advocacy organization meetings are the women who have primary cancer, and they think they have beaten the cancer. They think they are safe. They think they are cured. They are applauded and feted, while the women whose cancer has metastasized are ignored. There is no outcry for programs designed for women with metastatic disease, or for research aimed at targeted treatments to prolong life.

There is a hunger across the country among the women who are isolated and ignored, and we are desperate for your support to address this issue.MBCN asks any interested parties to e-mail them at GETINVOLVED.mbcnet@gmail.com and describe what they plan to do to promote awareness
.http://mamm.com/highlights.php?&qbackid=480f75c343300ce8_17200&qbacktitl=Current%20Issue&seq=4&qpage=3

Tuesday, November 17, 2009

I HAVE A FACE - I HAVE A NAME !!!! continued...

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