New Proposed Changes to Mammogram Guidelines

[hutchibk]

I always find it interesting when national political fear mongers call something that doesn't serve their purposes fear mongering. Something stinks no matter how much anyone tries to pretty it up. We haven't known anything for 16 years. And, I promise we don't know anything now as certain as many would like to purport. It works better than nothing at all, which is what came before it... and there are MILLIONS of women alive today in their 30s and 40s due to mammos, MILLIONS who I promise are NOT accounted for in the misleading statistics and ridiculous study findings. To the best of my recollection, no-one ever asked me (or any of us) what tool actually diagnosed us... be it self exam, clinical exam, mammo, ultra-sound confirmation, biopsy, etc. We are NOT accounted for in the "study results." Of course we need more innovative diagnostic tools and I am guessing that medical innovation companies are working on it. And until we have them, sending a message to young women that "you don't need to worry about it until you are fifty" is absolutely outrageous and insane.

[Patb]

I agree totally. My oncologist and rad Dr. are
replacing my mammogram which did find my
fast growing cancer with BSGI every six months.
They say they can see lesions indpendant of
tissue density and discover early stage cancer?
patb

[Sandra in GA]

Patb,
It seems that your onc and radiation Dr. are on the cutting edge. I no longer have any breasts, but for people who do the BSGI looks like it could help solve the problem of too many unnecessary biopsies. I found the following article that is full of very promising information:
Breast-Specific Gamma Imaging (BSGI) Can Reduce The Number Of Unnecessary Breast Biopsies When Compared To MRI at www.medicalnewstoday.com/articles/142818.php

I wonder why the panel didn't mention this?

[hutchibk]

One wonders... and I like the sound of Thermography as well.

[Sandra in GA]

Oh, yes, and that is based on the fact that cancerous tumors have increased blood supply and therefore more heat.

[sarah]

If you think they'd change the requirements for mammograms, you're out of your minds! Everyone in Congress would be voted out of office. How many women are there in the US???? It's a scare issue and a dumb one.

[Rozebud]

If I followed those new guidelines, I'd be dead and not typing this right now.

[StephN]

Nice to see you Rozbud. Bet you have been active on the other boards with this development!

Sarah -
I wish what you say was true.
The legislators who will be voting on a new health care plan are ALREADY in office (many as "fixtures"), and just who is going to run against them on a Let's Do Mammograms platform??

On the other hand, if there is too much hue and cry, these recommendations should get watered down and some kind of compromise would hopefully be the outcome.

My fervent HOPE is that some new screening techniques will soon emerge and these WILL be offered to women of younger age AS SCREENING, and not just on the basis of a complaint that should get checked out.

Might as well pray for rain in Seattle, huh?

[Carolyns]

Hi Gdpawel (and others... luv you all),
I am speaking to you because I have always followed you posts and find you to be extremely thoughtful and knowledgeable. I am a Stage IV breast cancer warrior. I have had this disease for 21 years 3 different times – 32 years old, 42 years old and then mets at 49. The first 2 cases were diagnosed via mammogram although the first time I was delayed by a year due to guidelines at that time. My doctor felt that I was too young.

Anyway, I had the pleasure of meeting Cynthia Pearson and other amazing powerful women at a breast cancer conference last year. I was hopeful that in the breast cancer and women’s community I could find hope and that I could calm some of my fears about being lost in statistics. You see according to all of the guidelines and evidence I didn’t and don’t have any options. I pointed out the fact that over 75% of the treatments that have kept me alive over the past 4 years are not approved for breast cancer. I mentioned that as I am more heavily pretreated I am eligible for fewer and fewer promising clinical trials. There is NO evidence to support anything we are doing and yet it is working. I am working – full time – raising my son – helping my disabled parents – loving life. Expensive treatments work (extend my life) for about 3 to 4 months each - but in a chain that adds up to 4 years so far. Anyway, I wish I could say that Cynthia had some words of encouragement for me but she did not. In this big breast cancer movement I am the minority (young survivor, no history, over 5 year cancer free both times, mets for 4 years and counting) but I will not go down without a fight.

At the same conference was a speaker who had worked with HIV / Aids patients. I asked how the HIV / AIDs community had come so far in getting treatments paid and patients accommodated. And why he thought that people like me were being forgotten in this breast cancer movement. He said that he thought that the reason could be that when you have HIV – Aids that everyone is “outside of the life raft” with breast cancer you have 95% (or so) of the population at any time in the life raft (cancer free) so there is less focus on the minorities of the group. Personally, I hope that as warriors we will fight hard not to leave our fallen behind even if the larger organizations feel they must.

In my long journey with this disease I am here to tell you that the population of young women getting this disease is growing exponentially. I see it. In 1989 I looked long and hard all over Florida to find one other young woman with breast cancer… now they are everywhere.

[gdpawel]

Carolyns

Interesting that you point out over 75% of the treatments that have kept you alive over the last 4 years are not approved for breast cancer.

Because tumor response can't be predicted from anatomical location, it was thought that we should start selecting treatments based on what genes and proteins can tell us about how the tumor will respond to a drug. If there is too much reliance on what has clinically been shown to work in some cases for a particular anatomically defined cancer, we may not choose the best therapy for the individual patient.

However, all the mutation or amplification studies can tells us is whether or not the cells are potentially susceptible to this mechanism of attack. They don't tell you if this targeted drug is worse or better than some other targeted drug which may target this particular mechanism of attact.

The cell is a system, an integrated, interacting network of genes, proteins and other cellular constituents that produce functions. You need to analyze the systems’ response to drug treatments, not just one target or pathway (even a few).

Targeted drugs are poorly-predicted by measuring the ostansible target, but can be well-predicted by measuring the effect of the drug on the function of live cells. You still need to measure the net effect of all processes, not just the individual molecular targets.

You can choose to test the biopsied tumor by genetic targets or pathways (does the cell express a particular target that the drug is supposed to be attacking) or by a cell-based assay that profiles the function of cancer cells (is the whole cell being killed regardless of the targeted mechanism/pathway).

Few drugs work the way we think. More emphasis should be put on matching treatment to the patient (personalized medicine), through the use of individualized pre-testing.

[Jackie07]

Rereading all the postings on this thread, I thought of another important, possibly 'biased' factor of the statistics used by the task force. One of the reason why there's a 'mere' 3% (I still find that term appalling) improvement of survival rate is because the 'number' of diagnosed cases has increased dramatically due to the mammagram. Women young and old who would have died from other causes (due to weakened system because of undiagnosed breast cancer? more accident prone?) instead got 'breast cancer' listed on their death certificates.

Adding the huge number of women who's diagnosed with DCIS who may or may not have invasive cancer, I really think this 'number' game is very, very deceiving.

On the flip side, I sincerely hope this debate brings more attention to the issue and we will see improved diagnostic methods and treatment options as well as improved survival rate.

[Carolyns]

gdpawel,

I pointed out the fact that 75% of the drugs used have not been approved for breast cancer but they are approved for other cancers. So, I guess as a relatively new population "Chronic Stage IV Breast Cancer Patients" under today's guidelines or lack thereof - my doctor is practicing a version of personalized medicine. The fact for me is that there isn't any evidence to show which way we should go with treatment. So my next question is - What happens to me when evidence based medicine and guidelines are the standard of care and therefore what is coved by insurance? I need some scientific person to argue my side of the argument against "statistics" and to me statistics lead away from personalized medicine. I hope and pray that I am wrong but I can tell you it keeps me awake at night. I want to see my little boy grow up and I don't want to be told that a medicine that is already on the shelf is too expensive for me.

I enjoyed reading all of your other comments too. This cancer I have definitely relies on multiple pathways as sometimes I get a mixed response. I am starting to wonder about the tumor testing for chemo response but as I said so far everything has worked for a while.

Thank you for taking the time to read my long post.

Carolyn

[StephN]

Carolyn, you bring up some thought-provoking points. I was wondering if our access gets cut back, will there even BE as many clinical trials?? After all they DO have to go through FDA approval. The drug companies may not have as much money to run all these trials.

I have been mostly treated in clinical trials. Some worked and some did not. At least some knowledge was gained and treatments ruled out as more information became available in treating HER2 positive cancers.

So many questions and we don't know where it will all lead.

[Margerie]

ACS response

http://www.cancer.org/docroot/MED/co...Guidelines.asp

[Carolyns]

Hi Steph,

It is changing as we speak and not due to the government, right now but insurance companies. We already saw Sheila get denied Tykerb unless she took it with Xeloda (which she didn't need). On 60 minutes the other night there was a discussion about end of life care and just how costly it is... the picture was of a 90 year old woman hooked up to machines. The next statement is that Avastin has a cost of $45k and only extends the life of an advanced breast cancer patient by an average of a couple of months... Those are statistics but we all know that there are many like me living from treatment to treatment extending life for many years. Yes, each one may only take us a few months but then we go on the the next.

Well I am headed off to my Miami Dolphin cheerleader reunion this weekend... after 14 lines of treatment and I don't look or feel anything like that poor old woman in the bed. No one will have any idea what my "cancer life" is like... I will just be one of the girls having blond moments. The only way I am at the end of my life is if they determine that my treatment is too expensive.

I hope that my non mets sisters will fight just as loud and hard over this issue as they / we all did over the mammogram. It really worked!

I think that it is a false choice to say that we can either get these expensive drugs or die. If the AIDs / HIV community could get this worked out than so can we.

Carolyn

[hutchibk]

I hate to say it, but I believe that 60 minutes presents a pretty slanted perspective of many stories... they have a defined philosophy about end of life issues (and many societal issues), and will present them to fit their perspective.

[hutchibk]

Carolyn, what you described above at the breast cancer conference and your statement/question about heavily pretreated is exactly my point about anecdotal clinical success vs. statistical "proof"... and is the genesis of my new favorite quote: "I would rather be ancecdotally alive than statistically dead" : )

[gdpawel]

"60 minutes presents a pretty slanted perspective of many stories"

Like the Faux News Channel

[micheleu]

Isn't it IRONIC this is all coming out right at the health plan push.....

[gdpawel]

Eleven Health & Prevention Organizations Defend USPSTF Mammogram Recommendations in Letter to Congress

http://www.prnewswire.com/news-relea...-78323577.html