Comments on: LIVESTRONG Responds to New Guidelines for Breast Cancer Screening

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[...] cancer survivors. Many groups including the Susan G. Komen for the Cure, American Cancer Society, Lance Armstrong Foundation and the American College of Obstetricians and Gynecologists have made formal position statements on [...]

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[...] LIVESTRONG Responds to New Guidelines for Breast Cancer Screening - LIVESTRONG Blog [...]

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By: Mary

Mary — Mon, 07 Dec 2009 06:42:52 +0000

I co-facilate the cancer support group where I live, and we started it in 1993. We also have a cancer house where people stay while having their chemo/radiation. We have had one lady with breast cancer in her 30′s and several in their 40′s so no one can tell me it is fine to wait until our 50′s to start having mammo’s. Also I am a BC pt. and my mammo was neg.last month but they are now going to be doing a breast MRI on me as soon as the machine arrives here due to how a spot feels. So these “experts” need to retake some of their medical courses. If I was their professor I definately would not be giving them a passing grade.

By: Julia

Julia — Thu, 03 Dec 2009 22:03:36 +0000

Dr. Ryan, Over the past 5 years I’ve had false positives and finally a true positive. I chose what you’d probably call ‘overtreatment’ for Stage 0 DCIS breast cancer. I had a bilateral mastectomy w/reconstruction. Discovered that the ‘healthy’ breast contained atypical cells as well. Happy to be rid of my ticking time bombs AND anxiety at the same time. I don’t buy research that my DCIS MIGHT have disappeared post-menopause! “Overtreatment,” whatever that is, sure beats death!

By: Chet

Chet — Sat, 21 Nov 2009 19:27:06 +0000

Hey Matt-

Until they get a better screening process for prostate cancer I hope you are doing self exams…..and I hope that you never find a lump in your scrotum. If you do, it will change your opinion and your experience.

By: Art Monty

Art Monty — Sat, 21 Nov 2009 00:38:33 +0000

Hey guys they’re also telling us the PSA is unreliable, so what are we going to do, and believe???, with cancer you never know, I lost my wife to breast cancer last year after 15yrs, of remission, a hell of a surprise!!

By: Timothy J. Moynihan MD

Timothy J. Moynihan MD — Fri, 20 Nov 2009 22:51:17 +0000

There is much confusion and angst about these new guidelines, along with a lot of misunderstanding. A couple of notes on previous comments. One is that the mammogram screening is in reference to otherwise, completly asymptomatic people. Once a lump has been detected, either by a health care provider or by the patient themselves, we are no longer “screening” but now evaluating a lump. This is a whole different issue as far as health care providers are concerned. Lumps need an evaluation, appropriate for the individual’s circumstances.
As far as screening in completely asymptomatic individuals, in the 40-49 year old age group, mammograms are not a very good test. It happens to be the best we currently have, but what we really need are better screening tests, not a push for everyone to get a test that has unacceptably high false negative (misses a cancer that is there) and false positive (shows what looks like a cancer, but is really not a cancer) results.
So, I agree with the Susan Komen group that the main thing that should be taken from these new recommendations is each person needs to discuss carefully with their own doctor their own circumstances and try to decide what screening tests are right for you, and at the same time work to develop more reliable and dependable screening tests for everyone.

By: Larry

Larry — Thu, 19 Nov 2009 16:42:22 +0000

I agree with Matt… Just trust the government, don’t talk to your doctor, government bureaucrats ALWAYS have your best interests at heart.

By: Matt

Matt — Thu, 19 Nov 2009 16:09:39 +0000

A line must be drawn somewhere, and the task force recommendation was based on research, not whim, right? So what is Livestrong’s recommendation: screen into the teens? Where should the line to start screening be decided and how should that be done? I am glad the task force has stirred the pot so that we can talk about it. Let’s THINK, not react. The above responses are based on anecdotal experience, not evidence.

By: Debbi

Debbi — Thu, 19 Nov 2009 00:19:35 +0000

Age isn’t the only issue w/ new recommendations. New recommendations find BSE (breast self-exam) of little value. I certainly disagree & will continue to encourage others to monitor their own health!
I found my breast lump myself (in 2005) which prompted me to schedule a mammogram, cancer later confirmed w/ biopsy. Granted many lumps are hard to detect w/ BSE, but eliminating your own self-exam is one less step in the goal of early direction. I’m glad I did my BSE & cancer was found EARLY! No chemo was required because no spread was suspected, lymph glands were negative, lump was small. Had only been 1 year since my last mamm.

By: Bruce Deeter

Bruce Deeter — Wed, 18 Nov 2009 19:13:25 +0000

My sister is a BC survivor having been diagnosed in her early 40s and undergoing a double mastectomy along with enduring chemo. Thankfully she is still cancer free over 7 years later. Thanks for your stance and all the work you do.

By: The Theory of Large Numbers « CXO Footnotes

The Theory of Large Numbers « CXO Footnotes — Wed, 18 Nov 2009 18:50:39 +0000

[...] 40-49 years old? The American Cancer Society has decided to ignore the new recommendations as has Livestrong. The Susan G. Komen for the Cure has posted a more balanced [...]

By: Carla

Carla — Wed, 18 Nov 2009 18:39:22 +0000

Thanks you for taking your stand. I don’t believe it is an Obama governmental stand – I think it is a bunch of medical people who have tied many tests/results together, crunched their own numbers and have decided this.
Pressure from people like LiveStrong will make a difference – THANK YOU

By: cori

cori — Wed, 18 Nov 2009 18:30:57 +0000

My friend would have died this year if she hadn’t followed up on a lump in her breast she found. She is 39. She is also a designer and has had a hard time paying medical bills. Want to help? Buy her cool t-shirt that speaks against these guidelines. http://www.cafepress.com/detectbc

By: Linda C

Linda C — Wed, 18 Nov 2009 17:21:18 +0000

Thank you Lance and the people at Livestrong for opposing these guidelines that will cause more young women to die of breast cancer.

You have just given me one more reason to continue to support your organization.

By: Linda Davis

Linda Davis — Wed, 18 Nov 2009 15:53:26 +0000

This is what the Obama administration is going to do regarding healthcare. This is the beginning of rationed health care. Wake up people and stop it!!!! Lance – you were just visiting COngress I believe. What did they tell you? What did they promise you? What did you promise them? Any votes? I would like to know your official statement since you are LIVESTRONG and my boys and I have follwed your entire career and you are our hero. I am an 11 year BC survivor. 7 years ago this January I was told I had 18 months to 3 years to live. I am still fighting. Fight this healthcre or we will see so much more of the rationed healthcare it won’t only be mammograms!!

By: Geri

Geri — Wed, 18 Nov 2009 14:27:40 +0000

I would have been dead at 41 if I my doctor hadn’t insisted I have a baseline mammogram at 40.

By: Cynthia

Cynthia — Wed, 18 Nov 2009 14:04:30 +0000

Thank you LIVESTRONG for posting your views of this new “guideline scenario”…our family is living this nightmare of one our young woman of 28 years old who was diagnosed with invasive ductual carcinoma in March 2009…if she did not have a mammography the time she did and if she would have had to wait until an older age or wait for symptoms her percentage rate of survival would be less than 45%…We must not let these new guide lines be accepted by physicians and most importantly “The Insurance Companies”. If these guidelines are accepted, I am fearful that we will see the mortatlity rate of women increasing due to Breast Cancer by the fact of less mamography screening; is this the goal of The National Health Institute??? The American Cancer Society has stated the best response by staying “Mammography’s do save lives by early detection”. Why can’t we keep it this way, it works…

By: Ed Hoon

Ed Hoon — Wed, 18 Nov 2009 13:09:05 +0000

Thank you for taking this strong stand. Now is not the time to cut back, but this is the time to increase way to detect and stop cancer.

By: Julie

Julie — Wed, 18 Nov 2009 07:29:59 +0000

To Linda — AIDS/HIV tests are simple blood tests that most often can be obtained for free or if not free then at a cost of less than a hundred dollars. And a person of any age can be tested for HIV without question/restriction. There are even over the counter tests for it in the pharmacy!

Mammograms cost over $4,000. If insurance won’t cover it, that’s a heck of a lot of money to fork over every year. Additionally, new medications available for HIV+ people are making it possible for them to live for many decades after diagnosis. This is not the case for the aggressive breast cancer types that are most often found in younger breast cancer patients (triple negative, HER2+, inflammatory – for which spread and recurrance rates are high).

Also, the high-risk definition being used these days is bogus. Over 85% of new breast cancer diagnoses are in women with NO FAMILY HISTORY OF BREAST CANCER. I’m one of those women who was diagnosed at age 37 with advanced (stage 3c) aggressive (triple negative) breast cancer found through a self exam and subsequent mammogram and sonogram.

With all due respect, comparing breast cancer detection to an HIV blood test is just not a fair comparison.

By: Julie

Julie — Wed, 18 Nov 2009 07:20:35 +0000

Thank you for taking a stand against the new dangerous guidelines. I was diagnosed with stage 3c triple negative breast cancer at age 37 this year after finding a lump in a self exam and getting a diagnostic mammogram and sonogram. The three years leading up to this point I had a hunch something was wrong and requested mammograms every year at my physical and was refused because I was “too young”. After my bilateral mastectomy this summer (approved/paid for mostly by insurance), my insurance company tried to deny paying for the mammogram and pre-op MRI claiming it was not medically necessary because of MY AGE! I had to call and appeal since of course both tests revealed I had advanced breast cancer and of course were necessary. Younger women with breast cancer are more likely to have very aggressive forms of the disease (ie triple negative, HER2+) – mammograms should be routine EARLIER, not later. And to suggest women stop doing self exams! It’s all completely outrageous.

By: Becky

Becky — Wed, 18 Nov 2009 07:07:21 +0000

These new recommendations are completely absurd and I am very happy that Livestrong is disagreeing with them. I just finished the Arizona 3Day and I met many young survivors that would not be here today if it weren’t for early mammograms and self exams. Let’s not digress, only progress in this fight against breast cancer!

By: Blue

Blue — Wed, 18 Nov 2009 06:36:45 +0000

I would like to say that mammograms are very important but it depends on the woman’s body and the density of their tissues if a mammogram or an ecography is the best way to have her diagnosed. Sometimes both exams are needed in order to get an accurate diagnose. Doctors not always prescribe ecographies because they are expensive, so make sure that if your mammogram is not clear or if you know that the density of your tissues is high, request an ecography. Of course, do not forget to do the self exams, do not be afraid to ask your doctor or the nurse to teach you how to do it right … you can save your own life, so it’s worth it!
Thanks!

By: cd

cd — Wed, 18 Nov 2009 05:46:57 +0000

Women: we know our bodies…continue to get mammograms and continue to give yourself self breast exams…we control our fate no one else! Let’s empower one another and do what we know is right! Thank you LIVESTRONG for the stance and support!

By: Linda

Linda — Wed, 18 Nov 2009 05:41:47 +0000

Please remember that the guidelines are talking about ROUTINE mammograms; they do not apply to women who are in higher-risk categories (family history and history of radiation/hormonal therapy being the top two non-age-related categories). Also, keep in mind that nobody’s saying you CAN’T have a mammogram whenever you want one (altho you may have to pay for it yourself). The guidelines are just saying, “On a macro level, the results don’t justify the costs.” Look. We do not have infinite resources. I’m sorry, and it sucks, but that is the truth. The costs of ROUTINE mammograms are very high given the number of cancers that are found, and that’s compounded by the monetary, physical, and emotional costs of all the false positives that result in unnecessary and painful treatment. And don’t forget that there is also a cost to spending money on one thing instead of on another. Early screening for breast cancer may save X number of lives, but funneling those monies/efforts instead into screening/treating, say, inner-city kids for hepatitis would save MULTIPLES OF X NUMBER of lives. Cripes. If you’re going to get so steamed about this, why not also be steamed about the fact that AIDS tests aren’t routine? The number of people who are walking around with HIV and don’t know it is WAY higher than the number of women aged 40-49 who are walking around with breast cancer. WAY higher. If we funneled the money spent on early mammograms into routine testing for HIV, think of the MANY more individuals who could be treated and who could live much, much, longer, happier, healthier lives than they otherwise would. Not to mention, HIV is INFECTIOUS, whereas breast cancer is not.

By: Monica B

Monica B — Wed, 18 Nov 2009 05:26:11 +0000

I was 47 (with a 4 year old) when my breast cancer was discovered during a routine mammogram. I was not a high risk–there was no history of cancer in my family. Even knowing where the tumor was, I could not feel it as it was hiding behind dense tissue. Therefore, by the time I would have discovered it myself, it would have been much larger–the prognosis most likely much worse. Mammograms save lives. Period. Thank you LiveStrong…for giving us a voice. We are the voice of SURVIVORS.

By: LESLIE

LESLIE — Wed, 18 Nov 2009 05:25:26 +0000

I FEEL THAT YOUR RESPONSE SHOULD HAVE BEEN MUCH STRONGER. IF MAMMOGRAPHY AND BREAST EXAMS SAVE JUST ONE LIFE IT IS WORTH IT.

By: Rachel B

Rachel B — Wed, 18 Nov 2009 05:04:00 +0000

I’m glad I didn’t listen to the recommendations. I’m 31 and was diagnosed with breast cancer. I found the lump myself.

We have a family history.

Last year I had to push to get my first mammogram. Since I was only 30, it wasn’t recommended. The mammogram was clear, but a few months later I noticed a lump on my own.

3 different doctors thought it was just a cyst. I had push again to get it taken care of. I finally got a surgeon to aspirate it, but when it wouldn’t drain he did a biopsy.

The next day I found out I had cancer.

If I hadn’t had been proactive and pushy, who knows what would have happened.

Please… do your self exams no matter what age.

Even though I have had to go through a lot (double mastectomy, chemo, …) We caught it early. I’m a stage 1. Things could have been a lot worse.

Rachel
Austin, Tx

By: minnow

minnow — Wed, 18 Nov 2009 04:47:45 +0000

To Mark B: Yes, women will continue self examinations, but they might not be able to continue with mammograms and have insurance pay for it. That is the issue. If the government feels it isn’t necessary, the insurance companies will soon drop coverage. And honey, they are expensive. You have the mammogram and the radiologist to read it. And then if there is a suspicious area, an ultrasound will be ordered- and of course probably not covered. Total cost will be $1000. Hard for most people to cover out of pocket. That is why there is the outrage.

By: Susan Rafte

Susan Rafte — Wed, 18 Nov 2009 03:54:38 +0000

Thanks for such a strong response against this recommendation.

Susan Rafte

By: Alan

Alan — Wed, 18 Nov 2009 03:40:19 +0000

LIVESTRONG and Doug,

make up your mind. You just endorsed the House bill that would create a government entity to make recommendations such as this into practice! So what is it – do you want the government to make the recommendations into policy or dont you?

I believe this decision should be between a doctor on the patient. But what do you think? Should Medicaid follow these recommendations or not? If not, why did you endorse a bill that makes a medical body to decide on these recommendations and enforce them through government run insurance.

You cant have it both ways and I am tired of you contributing to the confusion. Do you support the government making these decisions or not. If not, then your support of the House bill is hippocritical.

By: husky50

husky50 — Wed, 18 Nov 2009 03:21:20 +0000

To MarkB: go ahead and keep on believing that the government won’t step in and eliminate choice when it comes to health care. As soon as they ‘take over’ the system and have to pay for the care they will set the ‘guidelines’ to control access and subsequently the overall cost of that specific treatment/test. Of course you could always pay for it yourself… that choice will be the only one left that will be yours.

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Ashton Kutcher: RT @sarah_ross: RT … | Ashton Kutcher on Twitter — Wed, 18 Nov 2009 03:21:11 +0000

[...] LIVESTRONG’s official response to the new guidelines for breast cancer screening. http://bit.ly/NOvo Tags: fresh, [...]

By: Sue Weldon

Sue Weldon — Wed, 18 Nov 2009 03:12:22 +0000

In a medical world dominated by males, this in no way surprises me. If it were men that were affected by breast cancer (and actually, indeed they are, but not to the effect that women are) it would probably never have come to this. It never ceased to amaze me that it took forever for insurance companies to finally pay for birth control, yet it was never a question when Viagra arrived on the scene. When will women finally gain equal footing in EVERY aspect of living? We are still 2nd class citizens.
Women, you’re going to have to step up to the challenge. Yes, it’s uncomfortable to teach your daughters how to do self-exams, but this is not something that should disappear off the face of the earth as these cretins would have it. My grandmother finally read an article about self-exams back in 1972, and found a lump when she practiced. Yes, it was malignant..
Insurance companies more than likely paid for this…. ‘study’… and I use the term loosely. Insurance companies are scum.

By: Dr. Ryan Lindsay

Dr. Ryan Lindsay — Wed, 18 Nov 2009 03:05:45 +0000

The USPSTF is charged with examining the data that exists about whether a course of action–like screening for breast cancer–is warranted based on the whole of the scientific evidence. This recommendation is not aimed at erecting barriers to the early detection and treatment of breast cancer–its based on the clear evidence that screening before age 50 does MORE HARM THAN GOOD when applied universally across the entire population. This should not be made a policital cause–leave it up this best group of scientists and doctors.

In an attempt to illustrate my point–what if there was a commonly used cancer treatment drug that had been assumed to be beneficial but, through years of research, was revealed to do more harm than good? It should be removed from treatment regiments–its the same with screening test–OVERALL(not withstanding the individual testimony in previous posts) it is not effective in preventing morbidity and cancer death and in fact causes much more harm than good by way of FALSE POSITIVE results

By: Brenda D

Brenda D — Wed, 18 Nov 2009 02:48:24 +0000

I am an 8-year breast cancer survivor who was diagnosed at the age of 42. If not for an exam and mammogram, I would not be here now. Thank you so much for your continuing support on behalf of women everywhere!

By: Dereesa Reid

Dereesa Reid — Wed, 18 Nov 2009 02:29:13 +0000

Thank you Doug and all of the LIVESTRONG family for taking a stand. Next month, I will celebrate my 1 year survivor anniversary. I had no history of breast cancer and thank GOD for the radiologists that continue to pursue through mammograms and breast MRI – they discovered a silent (hidden) tumor.
As a healthcare administration, I can assure everyone that early intervention and screening is the key to reducing healthcare costs and improving patient outcomes. Frankly, I believe the standard of care should be breast MRI – mammograms often don’t detect small tumors also they produce harmful x-rays. Perhaps the focus should be on lowering the cost of more effective screenings and discovering new methods of early detection.

This is a perfect example of why organizations such as LIVESTRONG are invaluable advocates for cancer patients and survivors.

By: MarkB

MarkB — Wed, 18 Nov 2009 02:26:41 +0000

OK, this is not an all-or-nothing, either/or situation, people. The new guidelines just say that mammos starting at 40 are not a medical hot button. It still leaves it open to the individual — the basis for our COUNTRY, for god’s sake! — to decide for herself. Any woman with any care about herself will still do self-exams, and pursue any item of concern.

It’s not up to the government, or the medical community, or even LIVESTRONG, for that matter, to track our health needs for us. It is OUR CHOICE AND OBLIGATION.

By: Don Maschka, MD

Don Maschka, MD — Wed, 18 Nov 2009 02:09:45 +0000

This is a prime example of government run health care. It is only going to get worse if the government takes control of your health.

By: Dianne Arvisais

Dianne Arvisais — Wed, 18 Nov 2009 01:42:45 +0000

Thank you for taking a strong stand against the recommendations. I was diagnosed with Stage-1 invasive breast cancer at age 43. My cancer was detected at my annual screening mammogram. My cancer was so small that it had not even formed a lump, therefore, it could not have been discovered by monthly BSE. My cancer was high grade and aggressive. After surgery to remove the cancer, I underwent chemotherapy and radiation. If I had followed the new guidelines and not had a mammogram until age 50, I truly believe that I would be dead now. I was distraught today when I heard how many women had canceled their annual mammograms when these new guidelines were announced today.

By: Michelle

Michelle — Wed, 18 Nov 2009 01:35:31 +0000

Are these new guidelines a sign of what will happen with a government run healthcare system?

By: Richard Rovin, MD

Richard Rovin, MD — Wed, 18 Nov 2009 01:32:57 +0000

The guidelines published in Annals of Internal Medicine are absurd for two main reasons: First, they are based in large part on statistical models which are subject to interpretation and manipulation; Second, because they ignore their own data. The USPSTF commissioned a study to review recent clinical data regarding screening mammograms. That data is reported in a companion article in the same issue of Annals of Internal Medicine. That study found that screening mammography lead to a 15% decrease in mortality in women 39-49!
The USPSTF raises important issues, however. Screening programs may lead to treatment that might not be necessary and cancer treatment can be harmful. So, a more rational recommendation would be to continue the current mammogram guidelines, and in the meantime, validate gene expression assays that are predictive and prognostic–that is continued research to develop genetic testing that can predict how a cancer will respond to treatment and give an indication as to whether a cancer will follow an aggressive or indolent course. Such testing platforms have been and are being developed. In that way, we can determine which cancers need immediate treatment and which can be observed.
I can’t help but wonder if on some level the guidelines reflect a need to trim billions of dollars from the government’s health care budget. Currently, Congress mandates Medicare to pay for screening mammograms. Will these guidelines serve to reverse that mandate?

By: Alex Yost

Alex Yost — Wed, 18 Nov 2009 01:25:43 +0000

Too many of us have felt the impact of breast cancer. These new guidelines risk more of our family and friends.

By: drew olanoff

drew olanoff — Wed, 18 Nov 2009 01:25:37 +0000

There should NEVER be a “too early” for early prevention.

By: Mary

Mary — Wed, 18 Nov 2009 01:11:17 +0000

When I was 31 years old I found a lump through self exam. I went and had a mammogram and found out the worst… Cancer. I did not have any family history of breast cancer. I had two small children at the time and breast fed both (that is supposed to decrease your chances of breast cancer). I was a marathon runner and did not smoke etc.. Basically I had no risk factors, but I got cancer. I am now 43 years old and alive thanks to early detection, self exam and mammography. I believe that these new regulations will really hurt woman (and men) who could otherwise live like me… cancer free and doing fine. But we must make early detection a priority. I really hope these recommendations are not followed by medical professionals and I hope that all women and men will continue to advocate for their health.

By: barry rose

barry rose — Wed, 18 Nov 2009 00:57:41 +0000

good work and good statement! the new guidelines are based on statistical analysis of the data, and therefore about how much benefit vs. how much cost, etc. this is fully irrelevant to the individual patient, as exhibited in these testimonials (and the best example of beating odds being lance armstrong!). as others have noted, if the government takes over health care, this type of analysis and treatment choice would be the norm, NOT the exception–this is not political, just the truth, as it is in countries where data and limitations are the basis of the medical system–think carefully about your LIVESTRONG policy statements concerning the choices being thrown around now by politicians, not patients.

By: Sam

Sam — Wed, 18 Nov 2009 00:47:53 +0000

You can thank the new Administration for the changes.

By: chris

chris — Wed, 18 Nov 2009 00:41:54 +0000

come to long island and see all the people under 40 who have breast cancer Do they want to explaing it to their kids

By: Kristen

Kristen — Wed, 18 Nov 2009 00:24:23 +0000

THANK YOU!!! LIVESTRONG never lets us down. Thank goodness that people are rejecting this and seeing it for what it really is…RATIONING!! I know many women who wouldnt be alive today without self exam and routine mammogram!!!