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Old 11-19-2009, 06:49 AM   #1
margiermc
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Striking a Major Nerve

I fought the good fight, I run the race, I kept the faith -
2 timothy 4:7

I worked for the government since I was 18, retired at age 32 with two children, my husband works for the government for 26 years, will retire in 7 years, age 51.

There are many government departments, the Sec. Kathleen Sebelius is under the Federal Agencies and Commissions - Reach her office at www.hhs.gov, this branch is about 5th one under the Pres. Obama's Executive Branch (not too far from Obama).
Under Health and Human Services gov. agency - Kathleen Sebelius is next,
The Agency for Healthcare Research and Quality www.ahrq.gov
next,
The U.S. Preventive Services Task Force - which is an independent panel that is registered doctors, scientist, etc - used for studies
which, helps in guideline standards for healthcare physicians and
insurers.
Maybe, these are the same folks, Obama used on the White House Lawn - handing out white coats, to push this reform.
However, you can see Q & A's at the site of the
U.S Preventive Services Task Force - www.ahrq.gov/CLINIC/uspstfix.htm#About - click contact us,
then click Frequently Asked Questions #1-#11 you get all the
answers.

Of course Kathleen Sebelius states, she has nothing to do with it - but, we know this was panel performed this study in the twilights right before the new Health Care Reform.

I can clue you in about the government, we hire independent panel of people all the time for surveys, job performance etc. - but, we do know what's going on - and it's paid by your tax dollar.

I'm informing everyone here on this panel - you need to get in touch with your congressmen or whoever you voted for - nip this thing in the but, you will see so many women, our future daughters and grandchildren getting turned down, denied for mammograms because insurance companies have set guidelines, and they stick with it - because, you the consumer buys into the package and agrees with it - there may not be a choice, because it's the only healthcare provider your job may have.

I fought this cancer in my liver for 10 weeks, it was a physical battle, I almost died. Then, getting into ned, I battled this emotionally and took on the vaccine for a preventive. Now, I'm battling this disease with society - because, I cannot believe the government panel that was hired - came up with guidelines setting the stage for future
rationed healthcare.

I will not stop saying - call your congressman, yes, do it, send letters, there is a petition going to Mr. President - They will listen
if they want a job in 3 years.

As far as I'm concerned, the old saying my dad would always say,
"you can fool some of the people some of the time, but you can't fool some of the people all of the time." And, my Dad was an Army Sgt and worked for the gov't for 30 years. What can I say - it's in our blood. My government branch lesson plans here are for you
to contact, write letters, hound them, pound them, do what ever it takes, we need to continue research, self breast exams, screenings, etc. We need to Save All of Ourselves - this message was not for me - I know who to call - you may see me soon, somewhere -
but, I did this work for all of you - Wake UP, this is your government tax dollars funding such backwards stuff.

Here is a new bumper sticker motto - "A Change, One You Will Never Forget" - What did he mean by Change?? NOW, we are learning -

My son will be serving this country. My only boy. He will be serving 10 years, because he rec'd a 120,000 scholarship from the Airforce to be a Aerospace Engineer/Pilot.
He wants to serve a country, that now says - lets stop mammograms at age 40, when his mom gets it at 46, found by self breast exams.

Please, Don't be taken in by what Kathleen Sebelius statement says, she wants to probably crawl under a rock right now - the outcry is overwhelming - I don't think she even expected this - her statement was needed to make herself look good in the eyes of all the women that had breast cancer. And most of the women that were with Hillary Clinton, turned over to Obama thinking he will follow her compassion for women's healthcare. Well, look what you get!!

People need to be very informed on all issues, before they vote,
not just believe in the same rhetoric words, like change, hope.

When we filed for the scholarship, we new what we were doing, don't you think I have a clue what the government is doing
with these guidelines???

The panel U.S. Preventive Task Force - contact 301-427-1364

margie
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Old 11-19-2009, 10:00 AM   #2
whatz
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Re: Striking a Major Nerve

You go girl!
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4/09 suspicious lump in left breast
5/09 biopsi lead to diagnosis ER/PR -
Her2+.Grade 3,full masectomy left breast,sentinel nodes clear,Stage 1
6/09 Adriamycin + Cytoxan 4 treatments (every 3 weeks) followed by Taxol + Herceptin, 1 treatment weekly for 12 weeks, followed by Herceptin for 40 weeks
MRI Brain 4/10 clear
CT Body 4/10 clear
PET Body 2/11 clear
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Old 11-19-2009, 11:15 AM   #3
hutchibk
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Re: Striking a Major Nerve

I AGREE with you 1000% and I appreciate your view from the inside. This political destruction of our healthcare system is an abomination.

It is obvious that a war is being waged on elder patients and dire stage IV cancer patients in the UK, with their rationing of life extending methods and treatments (today news of a liver cancer drug being denied by NICE because of expense). If we aren't VERY awake, this is exactly what is coming down the pike here ~ and with the new Task Force recommendations, that is just a small taste of what's to come. They are lying through their teeth in their response to it. And there was more in the report than just the detestable mammogram recommendations. The report was an all out assault on women's health:

Breast Cancer Follies
By Robert M. Goldberg on 11.18.09 @ 6:07AM

Think Congress is regretting having allocated over a billion dollars to let the government generate studies to tell us what medical tests and procedures should be covered under Obamacare?

In the wake of the U.S. Preventive Services Task Force recommendation to tell women in their forties to take a hike on mammograms, and to suggest that other screening technologies aren't worth the money, I bet it won't be long before that budget and the agency that has it and also controls the information the Task Force uses to make such wise decisions, the Agency for Healthcare Research and Quality, are the subjects of congressional hearings.
The breast cancer recommendations come in a 30-page review of 10 studies that even the authors admit cannot be generalized to individual forms of breast cancer and different groups of patients .

But there's more. The Task Force on Monday also issued a second recommendation that has received no media coverage -- on screening for heart disease. Because heart disease kills more women than breast cancer, that decision could be even more dangerous for women because it is based on -- or biased towards -- old, even outdated methods for determining risk for a serious illness.

The Task Force rejected the use of a test for heart inflammation called C-reactive protein (CRP) as a reliable predictor of risk of heart disease. Instead, it said doctors should stick to a rule of thumb called the Framingham Risk Evaluation (FRE).

The FRE uses the number of fatal and nonfatal heart attacks suffered by workers in Framingham, Massachusetts, within a ten-year period, and it is based on a summary estimate of major risk factors for coronary heart disease, such as age, blood pressure, blood cholesterol levels and smoking.

How did the Task Force conclude CRP testing is worthless? The Agency for Healthcare Research and Quality told them so based on "the evidence."

But AHRQ ignored three recent studies demonstrating the importance of CRP. A 2005 study from Johns Hopkins and funded by the National Institutes of Health found that the FRE fails to identify approximately one-third of women likely to develop coronary heart disease. Many women deemed "low risk" by the geniuses at AHRQ had had coronary atherosclerosis, which even the Task Force will admit predicts heart attacks.

Second, it ignored the JUPITER ("Justification for the Use of Statins in Primary Prevention: An Intervention Trial Evaluating Rosuvastatin") study. That experiment tested whether giving healthy people with low LDL cholesterol levels but high hs-CRP levels would reduce death from heart attacks. It did. Or more to the point, it showed that screening CRP along with cholesterol tests can cut the incidence of heart disease by 40 percent in high risk individuals with statins and reduce death from heart disease by 20 percent.

Third, the Task Force, in a rush to save a buck for Obamacare, skated past the most recent findings from JUPITER that apply particularly to women. Forty percent of JUPITER's participants were women 60 and over with low cholesterol and no history of heart disease but were tested and found to have high levels of inflammation. It turns out that women are more likely to benefit from testing and treatment than men: the incidence of heart disease of any form was cut by 46 percent in women over 60 compared to 42 percent in men over 50.
But that's not the Task Force recommendation. Instead, the Task Force, relying on a review of studies and research that ignored these important findings and stopped looking in 2002, just when the understanding of CRP as a predictor was in its infancy, came to a pre-ordained conclusion that conveniently fits the party line that so-called evidence-based medicine can actually reduce the cost of care even as government creates a new health care entitlement.
The one-size fits all recommendation for breast cancer screening ignored the fact that breast cancer is not just one disease, but many related illnesses with different pathways and signatures. Worse, it acknowledged the wide variation that makes individualized risk assessment essential but went on to claim it wasn't worth the effort. And it failed to estimate the impact of telling women to simply go away. It took years to build up screening rates to where new drugs could have an impact on mortality. Now all that could be undone.
Similarly, the failure to take into account advances in testing and treatment, insights that will save the lives of thousands of women, is hard to explain, let alone justify. Dr. Diane Petitti, vice chair of the Task Force, maintains: "we have to say what we see based on the science and the data."

But if you only see what you are shown, then what you see or say isn't really science. It's politics. And if you think these two decisions were controversial, just wait. With billions to spend and a high profile, the AHRQ and its Preventive Services Task Force will turn prevention into just another word for saying "no" to medical innovation.

http://spectator.org/archives/2009/1...cancer-follies


________________________________________________

I know Joe does not want the boards to be filled with political activism or bickering (and I will remove this post if he wishes me to), but this is so much bigger than that right now. We are on the verge of the "something that must be done to fix the health system" being ABSOLUTELY the WRONG something. There have been many proposals to approach improvements, enhancement, refinements of the system in incremental, visionary ways and not two 2000+ page governmentalized overhauls that will cost more in premiums, taxes, and medicare cuts, will mean less doctors, longer waits, rationing recommendations as we tasted this week, and will mean an all out assault on the sickest patients and most expensive patients, e.g. those of us who are fighting for every last minute and breath that we can possibly extract from this life. I know the argument that there is already rationing alive and well in the system by insurance companies. My friends, the genesis of that rationing is Medicare, a government program. All private insurance follows Medicare denials and guidelines, but luckily to a much lesser degree, about 50% on average. If the governmentalizing of the ENTIRE system is allowed to proceed, the type of task force recommendations we have seen this week in the news will become mandates (like the one that a woman 50 and over cannot not have an annual pap smear/pap exam paid for by Medicare, it is now only paid every 2 years... regardless of you medical history. I know, I am one of those denied women this year) and those of us who are the most expensive to treat will have less and less options and less and less access to life extending treatments. It is time for everyone to become very very apprised of what these politicians are attempting to do, what the philosophies and politics are that are driving them, and to extract from this mess what is really, truly necessary to actually fix the issues folks want fixed. This path they are on is so wrongminded and will create a system that attempts to be One Size Fits ALL because they are intellectually lazy and politically expedient. One Size Fits All fixes are an impossibility and will screw those of us who need the most freedom and choices in our care.

Here is another interesting article to read...

http://www.littlechicagoreview.com/p...nce_id=4535467
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Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."

Last edited by hutchibk; 11-21-2009 at 01:17 AM.. Reason: typo
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Old 11-19-2009, 06:35 PM   #4
suzan w
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Re: Striking a Major Nerve

I would like to say that I hope this does not get political on the board, this is not the place for political debate. I did vote for Obama and do not like to see this referred to as "Obamacare" I went bankrupt with my breast cancer/insurance company and I do not blame Bush... My 2 cents worth.
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age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year

as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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Old 11-19-2009, 07:38 PM   #5
Laurel
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Unhappy Re: Striking a Major Nerve

I fully appreciate everyone's right to vote for whom they felt was best for the office of President. I am also afraid that to deny this is politically motivated is naive. Sadly, this was what many feared would be ushered in via an overwhelming majority in both houses of Congress. There is an indisputable rush to institute a system that the majority of Americans have grave reservations about. What is wrong with slowing down and debating the issue, thoughtfully and honestly? Whatever one's political bent, as women and cancer survivors we do need to be concerned, and vocal.

If this is not "Obamacare," as it has been dubbed in the media, than whose program exactly is it? I am not being abrasive here. I really want to know who is behind this rush to shackle us with a socialized healthcare system? Is it a better system? With the new guidelines for screenings I can only conclude it is not. Regardless, the danger in all of this is the loss of all that we have striven for these many years to raise awareness and survivability of breast cancer. To see these gains tossed to the four winds by extreme and radical agendas frightens and horrifies me.

The truth is we are all, as cancer patients, in a very vulnerable position. We are the ones with a pre-existing condition that is very expensive to manage. Clearly these newest recommendations demonstrate that we are expendable.

Additionally, most of us are women. Historically, women have received less health care, brushed aside as hysterics and not taken seriously. Because our symptoms did not mimic those that men present when having a M.I., women frequently died of their heart attacks. We had to fight and campaign to battle the scourge that is breast cancer. It sickens me to see us go back to the back alleys of health care on the number one cancer among females.

I believe the bells are tolling for thee (us)....
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Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara

15 Years NED
I think I just might hang around awhile....

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Old 11-20-2009, 01:36 PM   #6
Mary Jo
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Re: Striking a Major Nerve

In my VERY humble opinion....the her2support board should be just that....A SUPPORT BOARD. Yes, we share what we know about her2 positive breast cancer and support one another.

I have read (or skimmed) the many political posts that have surfaced as of late. Although I agree with some things and disagree with others.....The part that makes me sad is that I sense some are attacking others in a "round-about" way and I DEFINITELY get the "feeling" some are taking offense and have been hurt.

Come on folks....that's not what we are about here. We are about supporting and being their for one another. We all feel a certain way about lots of things....and although we don't always understand why others don't feel as we do (and I know....I've been known to get a bit "rankled" on occasion myself ) we need to remember why we are here.

Just my 2 cents (or maybe it's a dollars worth)...just don't want to see anyone hurt, that's all.

Mary Jo
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Dx. 6/24/05 age 45 Right Breast IDC
ER/PR. Neg., - Her2+++
RB Mast. - 7/28/05 - 4 cm. tumor
Margins clear - 1 microscopic cell 1 sent. node
No Vasucular Invasion
4 DD A/C - 4 DD Taxol & Herceptin
1 full year of Herceptin received every 3 weeks
28 rads
prophylactic Mast. 3/2/06

17 Years NED

<>< Romans 8:28
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Old 11-20-2009, 10:29 PM   #7
Sherryg683
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Re: Striking a Major Nerve

Personally, I appreciate being able to hear and share opinions about what is going on. Face it, this affects us. I have always been pretty politically ignorant because I figured it didn't effect me personally, stupid I guess. But I'm really beginning to worry now and hope that we can all keep each other educated in everything that's going on...sherry
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Diagnosed: December , 2005 at age 44
13+ positive lymph nodes
Stage IV , Her2+, 2 small mets to lungsChemo Started: Jan, 2006
4 months Taxotere, Xeloda, Hercepin
NED since April 2006!!
36 Rads to follow with weekly Herceptin indefinately
8 years NED now
Scans every year

Life is not about avoiding the thunderstorms, it's about learning to dance in the rain!
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Old 11-23-2009, 07:03 AM   #8
Brenda_D
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Re: Striking a Major Nerve

I thought political views were not allowed here.
Seems some people get away with it without so much as a wrist slap, yet I was made to feel bad when I posted my good NED news. Go figure.

Please remove me as a member.
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Old 11-23-2009, 07:36 AM   #9
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Red face Re: Striking a Major Nerve

Brenda,

Whether you agree or disagree with what a member, or as has been the case lately, non-members, post is not material. You still have rights in this country and forum and may simply chose to enter into discussions of your choice. That is to say, if you do not wish to opine on a given topic, simply do not go to the subject, or tarry there to read the posts.

Health care is a vitally important subject. Voices need to be heard and dissenting and favorable opinions alike weighed and considered carefully. To classify this as a simple political discussion is foolish indeed. Too much is at stake for you personally to dismiss the debate on the full and complete restructuring of our great nation's health system as merely politics. This is something the powers that be in Washington had better get right, because we will all have to live with it forever. Hence, the concern on my part that this is being rushed through with little true debate and certainly with little disclosure to the public, and even less contemplation and wrestling on the part our elected officials whom few have read the bill. God help us all if this is a debacle, poorly conceived and executed. Your future and mine rests upon this being carefully crafted. There is no urgency that I can see, so please tell me why the hasty path to ratifying a bill that has not been debated, nor even read, nor shared with the public? Seriously, I am in earnest, please tell me.
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Laurel


Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara

15 Years NED
I think I just might hang around awhile....

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Old 11-27-2009, 05:45 PM   #10
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Re: Striking a Major Nerve

The healthcare crisis in the US has sparked lots of debates. I am a third generation Californian, was born & raised in Calif. My husband & I came to Canada 13 years ago to build a home and vacation here and fell in love with the place - result: we became Canadian citizens after 4 years of lots of paperwork and hard work.

The reason I am writing this is to comment on the US healthcare system versus the Canadian system. I have, of course, relatives in the US who write me about what's going on, I listen to the news and not just Fox, and CNN, I hear the humorous stories by Fox and CNN about Canadians who are desperate for care and can't get it in Canada so they go to the States (I have yet to meet these people). My husband & I had what would be considered 'good' care while we lived in the States. We both worked for a school district. However, our coverage would be reduced every year, our premiums would increase, our co-pays would increase, etc. We ended up in an HMO which was a nightmare. It was expensive and we were limited as to which physicians we could see.

My daughter who lives in Calif is struggling with making medical insurance payments. I suspect a lot of 20 and 30 year olds are in this predicament. A lot of people can't afford ANY care.

I can choose whatever doctor I want. If big business chooses your doctors in the States, what is that called?

Having experienced BOTH medical systems, I must say I prefer the national healthcare we have here in Canada. It may not be perfect - nothing in life is - but at least everyone is covered. My husband and I pay a grand total of $96 PER MONTH for BOTH of us and that covers absolutely everything. We pay zero for x-rays, lab, doctor visits, specialist visits, hosp. care, ER visits - you name it. No deductibles. Our pharmacy bills are covered under Pharmacare which uses a sliding scale to determine costs. I never had anything this good in the States and I challenge anyone to say they can match this type of quality care for what I'm paying per month. Americans MUST get over the apparent fear that they have of the word 'socialized medicine', as if this implies some plot or something. America has already 'socialized' their schools, post offices, military and banks (with the recent bail outs). The AMA and pharmaceutical companies have a huge stake in keeping things the way they are, and making the average American pay big bucks for medical care. Medical care isn't a luxury, for God's sake - it's a necessity! The rest of the world has figured that out.

As for the long waiting periods you guys hear that we Canadians have to see a doctor I can tell you that's a falsehood. If someone has ELECTIVE surgery they may wait a few months, but if it is life threatening you get care ASAP. I know - I had an aneurysm fixed in this country before I was even a citizen at no cost, and I chose to have the surgery in a province I don't even live in. I didn't have to wait for care either.

I just want to say - sift through what you read about healthcare and don't believe everything you read about healthcare in other countries. 80% of Canadians are happy with our healthcare system and that says a lot. I hope the US figures it out because I have a daughter there and I don't want to see her waiting or being denied any necessary tests. I think that's criminal.

People going bankrupt trying to pay for their care is also a crime, in my mind. What else would you call it? It's a travesty. The last thing you want to worry about if you get a diagnosis such as cancer is worrying about how you're going to pay for it.

A member of the her2 site, margiemac, wrote to encourage everyone to write their congressmen. She is absolutely right! If you guys don't stand up for your rights your healthcare standards will stay right next to where they are now, next to the country of Slovenia. That's sad. Don't let the rich politicians decide your future.

Dianne
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Three years and 5 months NED
Dx: Aug 2008 right breast IDC with 50% of tumor DCIS, Stage II or IIA, tumor size: 2.1 cm
Grade 3
8/9 Richardson/Bloom test
ER+ weakly positive
Alred Score: 4 (suggesting I would strongly benefit from hormone therapy)
PR-,
HER2 positive +++
No vascular invasion
No lymph nodes involved
Surgery: Sept. 9, 2008 -Modified radical mastectomy, right breast. I chose to have a simple mastectomy on the left. Began Taxotere/Carboplatin/Herceptin November, 2008. Finished T/C March 2009. Finished #16 Herceptin Sept. 09. AI's and Tamoxifen made me sick. Began natural Tamoxifen which is Quercetin, I3C and a combo of other supplements. I am also a DES Daughter. There is now a link between DES exposure in utero and breast cancer!
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Old 11-30-2009, 08:31 AM   #11
lizm100
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Re: Striking a Major Nerve

We all are entitled to voice our individual opinions, that's what makes this country so wonderful. It's not a matter of who's right or wrong. It's about voicing our feelings and fears when it comes to our future the future survival of our children.

Many of us are letting fear take over I am included in this. I along with many have never ever been so worried about the future of our economy and the future of our healthcare system. This country has never been so divided on what the actual solution is and continues to be in a crisis state with inflation running rampit and the cost of health care skyrocketing and with no improvement in site. These new proposed mammogram guidelines have hit home for all of us along the new proposed pap smear guidelines.

Being self employed in the construction and real estate industries and having to pay for my family's health insurance, I have felt the direct hit of the effects of everything that is going on. With work coming to a halt just about over night and the prospects for seeking out employment so far have not worked out. To add insult to injury, I was just notified by my insurance carrier that eff. Jan 10' my premiums will increase by approx another $125 per month. When I contacted my insurance agent and asked what options I have, I was told "none" since having had cancer, no insurance company will touch me with my pre-existing condition and that this rate increase is a direct result of the politics that are going on.

I have also heard from many others who get health insurance through their employer that their contribution rates have actually doubled. I don't believe socialized medicine is the answer but this country most definitely needs healthcare reform desperately and not what the present administration is proposing.

I have family living all over the world (my mom is from Europe and comes from a family of 18!) including Europe(France, England, Austria, Poland, Russia, Czek Republic just to name a few) to relatives living in Canada and they all have their positive and negative stories about socialized medicine but most agree that medical care in the United States is far superior to their care. However, they all were shocked at the high price we pay for such care.

I don't believe in government handouts, I have always believed that hard work will pay off. When will this chaos end or is this just the beginning of what is to come?????
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Old 11-30-2009, 10:45 AM   #12
hutchibk
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Re: Striking a Major Nerve

Dianne, just a quick aside... This article was sent around to folks in my extended family in September by a cousin's brother-in-law... who lives in BC, Canada. He said it was very accurate based on his experience. I guess there are alot of differing experiences throughout every country.
http://articles.latimes.com/2009/sep...hcare-canada27
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NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
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Old 11-30-2009, 01:22 PM   #13
caya
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Re: Striking a Major Nerve

I have remained silent for many weeks watching this debate rage on between my American Her2 family. As a Canadian who is for the most part, happy and grateful for our universal health care system here in Canada, I thought I would chime in here to offer a few opinions. I have done this before periodically, with some board members welcoming my experiences and opinions, and others have reprimanded me saying that my opinion really means nothing, as I am not American.

I was happy to see DianneS, an American now living in Canada, post to give her experiences with both health care systems. She states that "having experienced BOTH medical systems" she prefers the Canadian one. And she goes on to say, and I heartily agree with DianneS - "It may not be perfect, nothing in life is- but at least everyone is covered." That statement I believe echoes the opinions of probably every Canadian. We believe that health care should be covered for every citizen, and no one should have to worry about paying large sums of money for medical care, especially during times of major illness. No rejection if you have a "pre-existing condition," no waiting for an insurance company to approve your treatment. The government does set some guidelines, but, to the best of my knowledge, nothing out of the ordinary standard of care. Pap smear, 1x year, (unless there is reason to do another), yearly physical, etc.

Brenda, that article you sent focuses on the very small minority of people who sometimes do have to wait for some elective surgeries. And that is exactly where our system needs to improve. We do need more access to quicker surgeries, more MRIs etc. But I would not throw the entire system down the drain to do so. Canadians would be up in arms if our equitable health care system was denied them.

I agree with DianneS - it is a falsehood that we have have long waits here for most surgeries, dr's appointments etc. My husband had a brain aneurysm, it was diagnosed on a Monday at 4 p.m. - operated on the next day, 6 days in the neurology ICU, home visits by a community care nurse for months of rehab - no forms to fill out, no fighting with an insurance company about treatment. When I had my BC - I decided which dr., which hospital I wanted - no HMO or insurance company telling me that this dr. was "out of network". My onc. and surgeon and I decided on my chemo, treatment etc. - not the government. It's bad enough when you are coping with a life-threatening illness, but at least here in Canada, you just go to your appointments etc., have basically no forms to fill out, no worries about payment.

Yes, our taxes are higher, but it seems to me that many of my US friends pay increasingly higher insurance premiums for less coverage, rising co-pays etc. What's the difference if you pay extra taxes, or give the money to insurance companies - the benefit is that all citizens are equally covered - isn't that the moral way to be?

Again, I must state that I am not trying to butt into American affairs, but I cannot stand by and see the Canadian system maligned based on a few exteme, isolated incidents. Ask any Canadian if they are happy with their healthcare system, I bet 99% will say yes. Ask the 45 million Americans who have no coverage, or the ones who, like Dianne's daughter, who are struggling to make the payments, or people like susan w, "went bankrupt" paying for her BC bills - what they think.

Yours respectfully,
caya
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Old 11-30-2009, 02:14 PM   #14
PinkGirl
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Re: Striking a Major Nerve



I could give you a list a mile long of Canadians who did NOT have to wait a year or close to a year for hip replacement surgery. Unfortunately, it
is the problems with our system that get emphasized in the USA, not the
good side of it.

CayaGirl ... I guess our wounds have healed from the last time we tried to
say something positive about the Canuckian system
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Old 11-30-2009, 06:39 PM   #15
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Re: Striking a Major Nerve

It's important to hear all sides of the story constructively. Lately we've been subjected to biased media here in the U.S. either too far to the left or too t far to the right. That gets very stressful and leads to alot of fear of what is to come
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Old 11-30-2009, 09:46 PM   #16
DianneS
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Re: Striking a Major Nerve

Hi hutchibk - and others who posted,

Thanks for referring me to the article hutchibk.

I am suspect of what a Los Angeles journalist knows about healthcare in Canada. Has this person lived here and experienced it, or do they go on heresay? If this woman had surgery at this 'clinic', why not name the clinic or any physicians names? I consider this type of 'journalism' to be propaganda if it is not backed up by facts. It is very suspect.

They also don't seem to be aware that British Columbia is a completely different province from Alberta. But that's ok, Canadians are used to being maligned by the US in some form or another. Blame it on ignorance on the part of the US.

I think it's humorous how many Americans suddenly have an opinion about our healthcare, but they couldn't find Manitoba or Nova Scotia or the Yukon on a map- to name a few! But some US journalists who have never experienced our healthcare have opinions? Curious.

If a Canadian who had never lived in the US or experienced the US healthcare system wrote an article on their opinion of US healthcare, would anyone in the US believe what that person said?

People in the US may hear on TV or read in the paper of people who go to the US from Canada for medical care. I & my friends personally know of NO one who has done this and I ask any of you to name one person that you personally know that has done so.

You cannot believe everything you hear or read. I base my opinions on what I have experienced and actually seen.

The US is terribly afraid of losing control of the medical system and having it be actually cost effective and patient driven. Insurance companies will lose money, doctors and hospitals will lose money, and hey, don't forget the pharmaceutical companies. And that, sorry to say, is the bottom line.

The US simply MUST put people first over money. I doubt, however, that this will happen in my lifetime. The words socialized medicine or national health are not scary words as CNN or Fox News or the LA Times might imply, but infer a human centered healthcare system that provides for everyone, regardless of financial status. Isn't that is the US Constitution - 'provide for the common welfare'? What does that mean to you? That is what we do here in Canada. Yes, our taxes are higher but - you get what you pay for, don't you? Would you rather pay slightly higher tax as most countries do and not worry about how you're going to keep your home or job if you're ill?

Coming from the US, we haven't noticed our income changing much at all from the US, even with our 'higher taxes', but we are very thankful for our socialized medicine because if I'd had these medical problems in the States, we'd be bankrupt or my husband would have to try to find a job. We have been retired since we immigrated to Canada.

As for private clinics they must be on the decline if they ever existed as there isn't any advertising for them. Since no one has to wait for care that is ESSENTIAL and not ELECTIVE here I can't imagine that private clinics would have people standing in line to pay privately for what they can get free.

You have heard from real Canadians here who are telling you that we like our healthcare system. I never thought I'd have to experience the healthcare system here in quite this way, but Canada has been very good to me, providing me with aneurysm surgery BEFORE I was even a Canadian citizen. I think that's pretty darn humane. They could have said 'no way, go back to the States for your surgery' but that never came up. As I said, I chose what doctor I wanted (out of province) at no cost. My experience with the bc diagnosis was: surgery; no cost, chemo, no cost, followups, no cost, pharmacy, no cost. I chose where I wanted all of my procedures including chemo.

I call that freedom.

I really urge all of you to write your congressmen! You guys cannot accept these new 'guidelines'- they are inadequate, inhumane and downright dangerous. In the long run it will cost the US more for advanced cases of disease rather than using screening programs to detect it early.

Sorry this got long but I feel strongly about it. I will provide a link in the next post to a website about how satisfied Canucks are with our healthcare system - I believe it was 80% last time I looked.

Dianne
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Old 11-30-2009, 10:35 PM   #17
DianneS
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Re: Striking a Major Nerve

For any curious folks who want to know about the Canadian healthcare system FROM the Canadians go to this government website. If you want info on a specific topic the table of contents can help you.


http://www.healthcoalition.ca/index-eng.pdf
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Three years and 5 months NED
Dx: Aug 2008 right breast IDC with 50% of tumor DCIS, Stage II or IIA, tumor size: 2.1 cm
Grade 3
8/9 Richardson/Bloom test
ER+ weakly positive
Alred Score: 4 (suggesting I would strongly benefit from hormone therapy)
PR-,
HER2 positive +++
No vascular invasion
No lymph nodes involved
Surgery: Sept. 9, 2008 -Modified radical mastectomy, right breast. I chose to have a simple mastectomy on the left. Began Taxotere/Carboplatin/Herceptin November, 2008. Finished T/C March 2009. Finished #16 Herceptin Sept. 09. AI's and Tamoxifen made me sick. Began natural Tamoxifen which is Quercetin, I3C and a combo of other supplements. I am also a DES Daughter. There is now a link between DES exposure in utero and breast cancer!
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Old 11-30-2009, 10:36 PM   #18
DianneS
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Re: Striking a Major Nerve

For info on the Canadian healthcare system from a government website in Canada please read the following:

http://www.healthcoalition.ca/index-eng.pdf

I believe it's page 21 that talks about how happy we are with our system.

Dianne
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Three years and 5 months NED
Dx: Aug 2008 right breast IDC with 50% of tumor DCIS, Stage II or IIA, tumor size: 2.1 cm
Grade 3
8/9 Richardson/Bloom test
ER+ weakly positive
Alred Score: 4 (suggesting I would strongly benefit from hormone therapy)
PR-,
HER2 positive +++
No vascular invasion
No lymph nodes involved
Surgery: Sept. 9, 2008 -Modified radical mastectomy, right breast. I chose to have a simple mastectomy on the left. Began Taxotere/Carboplatin/Herceptin November, 2008. Finished T/C March 2009. Finished #16 Herceptin Sept. 09. AI's and Tamoxifen made me sick. Began natural Tamoxifen which is Quercetin, I3C and a combo of other supplements. I am also a DES Daughter. There is now a link between DES exposure in utero and breast cancer!
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Old 11-30-2009, 10:58 PM   #19
DianneS
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Re: Striking a Major Nerve

Hi lizm100,

Yes fear is a driving factor and doesn't say much about all the freedom one hears Americans are supposed to have. We have free speech here in Canada as well and are quite free to express our opinions about anything and everything, and we do!

What has happened to you with your health care insurance is precisely what Michael Moore was pointing out in his documentary "Sicko". I went to see the movie even though I don't live in the US anymore. Getting educated on all issues relative to healthcare in the US is important. Mr. Moore may be seen in different lights by different people, but he did have some interesting FACTS in his documentary that a lot of politicians want to pretend don't exist.

What these insurance companies are doing, such as the one you have, is nothing short of murder. Who doesn't have a pre-existing condition? To turn someone down who has had cancer or any illness, or to increase premiums because of such an illness is Machiavellian, inhumane, and for a so-called Christian country - un-Christian. I'm so sorry that you're having to go through this stuff. You shouldn't have to worry about money when you're stressed out enough as it is.

Well - I have to disagree with you about some of the countries you mentioned who say the US has superior care. That may be what they hear on American TV, but France is #1 in the world as far as medical care. I do know that the US is #39 in the world as far as health care, and that is sad indeed considering some of the countries who rated better are hardly industrialized countries.

So I'm off my soapbox, and if some of you guys are still convinced socialized medicine/national healthcare is a communist plot, I am sorry for you. It is working for the rest of the planet.

Dianne
__________________
Three years and 5 months NED
Dx: Aug 2008 right breast IDC with 50% of tumor DCIS, Stage II or IIA, tumor size: 2.1 cm
Grade 3
8/9 Richardson/Bloom test
ER+ weakly positive
Alred Score: 4 (suggesting I would strongly benefit from hormone therapy)
PR-,
HER2 positive +++
No vascular invasion
No lymph nodes involved
Surgery: Sept. 9, 2008 -Modified radical mastectomy, right breast. I chose to have a simple mastectomy on the left. Began Taxotere/Carboplatin/Herceptin November, 2008. Finished T/C March 2009. Finished #16 Herceptin Sept. 09. AI's and Tamoxifen made me sick. Began natural Tamoxifen which is Quercetin, I3C and a combo of other supplements. I am also a DES Daughter. There is now a link between DES exposure in utero and breast cancer!
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Old 12-01-2009, 07:22 AM   #20
lizm100
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Re: Striking a Major Nerve

This thread is is turning out to be a great way of exchanging information. Now I have another question; keeping Canada in mind, since it is our closest neighbor, has anyone heard that the present U.S. administration is trying to implement the same exact type of healthcare system that Canada presently has?
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