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Can you help me with my statistics?

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Hey There Gal Pals~
I'm working on writing an article describing the plight of us metsters for the month of October. I've been questioned on one of my stats, and at this point am not sure if I found it on the web, heard it in a lecture, or just pulled it out of thin air.

"X" percentage of women who are originally diagnosed with breast cancer will eventually go on to be diagnosed with metastatic cancer. My notes indicate 30-40%, but a good friend and number savant says her notes say 30%. Can anyone help me find out the truth, as I want to drive my point home but will be taken more seriously if I am peddling accurate info!

Thank you and I will share the finished product soon...

((hugs))

16 replies

Sadly, dear friend, that stat would appear to be 40%, as stated in this article:

"An estimated 40 percent of breast cancer patients relapse and develop metastatic disease. About 40,000 women die of metastatic breast cancer every year."

At:

http://www.sciencedaily.com/releases/2009/03/090327152403.htm


New Test May Predict Breast Cancer Metastasis
ScienceDaily (Mar. 31, 2009) — Researchers at NewYork-Presbyterian Hospital/Weill Cornell Medical Center have identified a new marker for breast cancer metastasis called TMEM, for Tumor Microenvironment of Metastasis. As reported in the March 24 online edition of the journal Clinical Cancer Research, density of TMEM was associated with the development of distant organ metastasis via the bloodstream — the most common cause of death from breast cancer.

The National Cancer Institute (NCI)–funded translational study could lead to the first test to predict the likelihood of breast cancer metastasis via the bloodstream — a development that could change the way breast cancer is treated.

An estimated 40 percent of breast cancer patients relapse and develop metastatic disease. About 40,000 women die of metastatic breast cancer every year.

"Currently, anyone with a breast cancer diagnosis fears the worst — that the cancer will spread and threaten their lives. A tissue test for metastatic risk could alleviate those worries, and prevent toxic and costly measures like radiation and chemotherapy," says senior author Dr. Joan G. Jones, professor of clinical pathology and laboratory medicine at Weill Cornell Medical College and director of Anatomic Pathology at NewYork-Presbyterian Hospital/Weill Cornell Medical Center........

xxxGGC

I think GGC's article is a good one to quote. All the stats
say 30-40% ---I suppose it's related to what they are trying to get across! Safest thing to do is find 2 or 3
articles like the one from Heather to support your
point in the article and go with it!!! Your stats friend can
do the same, if she hasn't done so already.

Thanks for taking this on for us!

Here is an article I found on the MD Anderson website:

CancerWise - October 2008


By Darcy De Leon

This month, a group of patients with advanced breast cancer are making a plea for advocates to shine the pink-ribbon spotlight on a lesser-publicized aspect of the disease: metastatic breast cancer, cancer that has spread beyond the breast.

According to the National Breast Cancer Coalition, approximately 30% of breast cancer patients will go on to develop metastatic disease.

“The breast cancer community as a whole is focused on survivorship, and clearly, some of us will not survive,” says Ellen Moskowitz, president of the Metastatic Breast Cancer Network (MBCN).

The MBCN gives those with metastatic disease a voice by hosting conferences to provide accurate information about the latest treatments and clinical trials.

“During pink ribbon month, we all have come to expect that we will hear about early detection and the search for a cure,” Moskowitz says. “But those of us with metastatic disease know that no matter how many pink ribbons we see, there are limited treatments.”

What you can do

MBCN is asking all breast cancer advocates to join the fight for treatments to extend life, to make metastatic breast cancer a truly chronic condition.

Support groups and cancer centers were called on to promote awareness of metastatic disease.

Organizations can:

Include metastatic patients in program planning
Hear the voice of the metastatic population
Provide support groups for metastatic patients
Listen to the needs of metastatic patients
Schedule events about metastatic disease
Provide information on new treatments
Advocate for treatments to extend life
MBCN members are hoping that taking small steps like these could lead to bigger support.

“We need the entire breast cancer community to join with us. We need a force behind us, a powerful force that can shift the tide and bring attention to life-extending treatments,” Moskowitz says.

Hope this helps.

Debbie

thanks researchers!
and to think, i was originally stage 1, no nodes, aggressive treatment, great prognosis. looks like i am not alone....

ReneP - I must say, in the last year I have read hundreds of stories from breast cancer patients and the one striking thing that stood out for me was stories like yours. Many, many women are stage 0 or stage 1, clear lymph nodes, aggressive treatment....and they wind up stage IV. This is something that really doesn't seem to be acknowledged by the medical community. I have long thought that many of our BC spread when the primary was in the microscopic stage. Conventional tests can't find those.

In fact, during my initial diagnosis phase - I had ultrasounds, breast MRI's, mammograms....you name it. They all saw my primary tumor, but did not see that the rest of my breast was chock full of in-situ cancer. I had a mastectomy and the pathology saw it. My lymph nodes were clear, but I already had mets to my lungs.

This is off the subject of this thread, but I just had to comment :> Beachbabe - thanks for all the work you are doing to bring MBC out of the shadows!!! lisa

I agree with ReneP and chainsawz. I too was Stage I no lymphnode involvement back in 2005, early detection, etc. I didn't even have a tumor, just one area of small microcalcification caught by my 2nd ever mamogram. Great prognosis! No one was more surprised by my recurrance 2 years later than my surgeon, and radiologist. My oncologist was not quite so surprised, although a bit disappointed. But he was surprised it has metastisized.

I wrote a letter to the editor of the Washington Post on an article they ran about preventative mastectomies, about 4 months ago. I told them they missed part of the mark. They talked about family history, early detection, markers; all important areas, but they didn't mention reacurrance into metastisize. Most people still think all BC is curable. They think the women that die from it just didn't DO something right and they think if they don't have a family history that they are safe.

Sorry, this is a button for me. Thank you so much Beachbabe for letting them know the right information.

yes - in relation to the feedback you asked for earlier. I had a history of breast lumps lasting about 10 years. Eventually the lumps were minimized by my OBGYN. This was before my initial diagnosis... My last lump was pushed to the side as just another breast lump - of which I had biopseyed many. At that time I felt like the Dr. knew best and went meekly, yet uncertainly along with his assessment. The decision was made to watch for six months. I did tell him it felt like something more was wrong this time as my hormones were whacking out too. His answer was to put me on progesterone. By the end of 4 months I went back saying there was pain in the lump site. He then recommended a biopsey which showed cancer (which has by then spread to the nodes)...surprise surprise. The cancer was estrogen fueled so the baby got all the fuel it needed to launch...since I was being given estrogen! We treated agressively - bilateral mast, hysterectomy, chemo, tamoxifen and later arimidex.

Anyway - here I am 8 years later as a stage four. My point is that many of the first contacts we have are with OBGNYs (or general pract). I think that substantial training needs to be done with those docs regarding detection and best practice - or at least referral practice. My history included both grandmothers and mother with breast cancer history....hmm no family traits to be concerned abou there....

LynnW,

If you haven't already, read Beachbabe's post of Sept. 1, 2009 about lifestyle and cancer risk. There is good information there about the guilt nonsense that is shoved on we metavivors.

I don't have a family risk of breast cancer. Quite a few other cancers but no breast cancer. I had my child at the age of 21, started menstrating at 13, etc. so I wasn't overly worried aboout breast cancer. My mistake, I believed the hype and bologne. So I was 3C when diagnosed in Feb. of 2005 and it had spread to my spine in Feb. of 2009.

My only risk factor was the "Pill" for 21 years. Back then women were being told it was a good thing and bones were stronger if one took the Pill. Only listen to half of what's recommended and then only believe half of what you hear until that's challenged and changed.

Colleen-
I have read the 30-40% stats. There are many resources you can use to back up those numbers (some are listed here in this thread already). And yes, I agree that the population at large is being fed a line with this whole "BC is always cured if caught early". The numbers just don't back that up entirely.
I too was one of the people who's symptoms were dismissed for too long, only to end up with an initial diagnosis at stage 4.
Doctors need to be better educated, as does the general public about the facts, not just pink-ribbon marketing crap. I'm getting pretty sick of the ignorance which leads to the "blame the victim" mentality.
Go get 'em Colleen - I can't WAIT to read your article!
:)

What timing you have. I recently (in the past three weeks,) was reading a booklet on breast mets and the Oncologist said that 38% of women who have breast cancer will wind up with mets. That falls in your 30 to 40% category. The number stunned, saddened and angered me. I was like Lynn and many others. Original diagnosis stage one, no tumor but microcalcifications, no lymphnode involvement. Four years later almost to the day I was diagnosed with mets. My surgeon refused to believe the diagnosis and in fact will no longer discuss my case with anyone. Strange. Anyway, thanks to you Colleen for what seems seems to be your tireless effort on behalf of the rest of us. I'm eager to read the article.

I wish the article Groovy shared had stated where the 40% statistic came from.

possible suggestion - call 1-800--4-cancer and ask them to check it out for you..and get their source .. and the year of the statistic. You want to use the most recent statistic from a reputable source.

This is a 2008 statistic:
" In developed countries, including the US, nearly 30 % of women with early stage breast cancer will eventually develop metastatic breast cancer. (2008 Global Survey by Pfizer Oncology)"

Compared to a 2007 statistic:
Dr. William Gradisher, November , 2007 ( oncologist at Feinberg School of Medicine at Northwestern University, Chicago)
It is estimated that nearly 155,000 women in the U.S. are currently living with metastatic breast cancer and this number is projected to increase to nearly 162,000 by the year 2011. Twenty to 30% of all women first diagnosed with cancer limited to the breast eventually develop it elsewhere.

I haven't seen any published 2009 statistics..
Perhaps the 40% statistic is more recent? Perhaps the 40% statistic includes men?

when you solve this.. let us know!!

Just an added note - (can't help with the stats - but perhaps 30-40% will be more accurate than either 30 or 40 alone) if I see the TV spot again of Lynn Redgrave looking right into the camera during Pink October exclaiming that she WILL NOT die of breast cancer I think I will scream. Or throw a shoe at the TV.

It's an insidious disease. It attacks nice people, mean people, fat people, skinny people, those who eat well and exercise and those who prefer the couch, those who are stressed out and those who are happy in life. My mets dx recurred 13 1/2 years after my first dx. It even hides out and waits for years.

Bravo and many thanks to you, Beachbabe, for the concerted effort on behalf of us forgotten ladies (we are, in some ways, "the dirty little secret") who will not survive breast cancer. But who live with it, and hope to inspire others to work for a cure and to listen and acknowledge our voices during the upcoming month and throughout the year. As one of us flies to heaven on the wings of an angel, another is newly dx with metastatic disease. Sadly, our group will not go away any time soon.

I have been reading this thread and was surprised at the 30% - 40% of breast cancer patients who relapse and develop metastatic disease. It seemed pretty high to me and not to fit with the rosy pink picture we are all going to hear so much about next month regarding early detection. I am sorry that I didn't try to figure it out myself (serious chemo brain at the moment) but how can the pink early detection figures of around 90% who are caught at early stages are cured and these 30/40% relapse number match up?

What am I missing? Are we talking about a 30/40% relapse rate of stage II or III? With stage I having the 90% cure rate?

It just seems to me that if every woman with any stage had a 30/40% relapse to metastatic then more people would be jumping up and down with unhappy faces on then with pink ribbons on their shirts.

I just checked the national cancer institute's SEER (surrveillance, edpdemiology and End Result) statistics and they report:

5 year survival

Stage I - 100%
Stage II - 86%
Stage III - 57%
Stage IV - 20%

I guess if you add up all the percentages of stage I through III that recur and end up in stage IV that is 54%. And how can any stage be 100%? There are people on this site that were stage I that are now Stage IV.

Sorry if this is just confusing. I just can't reconcile the 90% cure rate I see quoted so often and a 30/40% relapse rate. Any math wizards out there?

My reason for posting this is just to express my curiosity not for Colleen to try to answer this for me. I am so grateful that she is taking the time and using her enormous talents to point a spot light on us in a way that will make people stop and think.

Last week when I was at the cancer library at Mayo Clinic I found a book "The Anatomy and Clinics of Metastatic Cancer" by Dr. J.M. Debois. I know the figures you are looking for are in that book. This book goes into detail on specific metastases, ie bone marrow and bone, spinal, cervical, lung, etc.

yes.. way confusing with all the pink ribbon nonsense blasted by the media. The fact remains... there is NO CURE FOR BREAST CANCER...no matter what stage you are diagnosed with. No one has 'beaten the disease' till they die of something else. ANYONE can become metastatic. There are people who have a stage 4 diagnosis their first time with bc. There are soooo many myths out there - we are living the experience- we are the ones who need to get our voices heard and let people know the facts about this so frequently misunderstood diagnosis.

Hi Jeanne46... I agree with your words and your attitude!! You really get your message across. Is there a way for me to contact you... or perhaps you would contact me at mbcnet@gmail.com?
Thanks - Ellen

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