Susan Love Defending New Guidelines

Kailani

Dr. Love just wrote an article for Huffington Post defending the new mammography guidelines.

Please come and post a comment.

http://www.huffingtonpost.com/susan-m-love/mammography-screening-are_b_359816.html

CaSux

Thank you, Dr. Love. A voice of reason.

Anonymous

I am soooooo angry after reading this article that I'm seeing red ...   what a cold hearted beatch - science and numbers (statistics) are the only things that matter ...  human life tops those numbers ..  wish she had to meet with the families of the young angels we've lost - look them in the eye and tell them that this rationing of mammograms is the right decision for everyone under 40. 

BULL CRAP  - who the hell if funding her ...   I'm certainly not a fan and have lost all respect for her. 

Doreen 

LJ13-2

There are voices of reason on both sides here. Just depends whose reasons you like better.

Anonymous

Perhaps Susan and the government run "board" should visit the website titled:

Young Survivor Coalition - especially the forum titled "REMEMBRANCE"

http://www.youngsurvival.org/bulletin-board/

Moi

I say we burn our copies of the Breast Book in protest.

CaSux

CaSux

Emotions are running way too high. Dr. Love is a respected physician and long-time advocate for women with breast cancer. That she offers a reasonable counterpoint to this argument is perfectly sound.

Let us remember that wherever you stand on this issue, women are harmed. Women are harmed by the recommendation of age 40 screening. That is a fact.

Lives are also saved, according to the data - and, what is not yet known is how many lives will be lost due to unnecessary screening. There are real women involved in that statistic also. 

thenewme

Oh my!  Dr. Susan Love co-founded a company developing a "breast pap smear???"  Hmmm.

++++++++++++++QUOTE++++++++++++

Ductal lavage is a diagnostic procedure being developed by breast surgeon Susan Love, MD and researchers at the company, Pro-Duct Health, to be used in addition to clinical breast exams and mammography. Ductal lavage helps identify cancerous and pre-cancerous cells by examining samples of cells from the milk ducts of the breast. Dubbed the "breast pap smear," Dr. Love believes ductal lavage can help physicians better understand how breast cancer develops and identify women most likely to develop breast cancer. However, the test is only recommended for women at high risk of breast cancer (as determined by family history, etc.).  

http://www.imaginis.com/breasthealth/ductal_lavage.asp
 

Odalys

Yes, I've heard of the ductal lavage.  After her comments during GMA's interview, I no longer trust her research or motives.  I am removing my name from the "army of women" coalition.  It seems her research and data is a bit biased.     

navygirl

transcend what do you say to the 40 something who instead of having a mamogram and catching the cancer while it's early and treatable, finds out she is stage 4 because the recommendations had changed and her breast lump wasn't found in time? 

Even if there is a sound argument against early screening, why the hell would they say "self exams" are of no value? Why even put it out there that people don't need to do them? It costs no one a penny and I'd be willing to be thousands of us found our lumps first with a BSE. They totally blew it with that comment...not that their recommendations for Mamograms hadn't already caused me to tune them out!

My take on Dr. Love's comments yesterday were - that she thought we should be looking for other options to screening besides the mamogram, but she didn't say WHAT she had in mind. Until such a time as an alternative screening tool is available to women, the screening guidelines should become more aggressive, not LESS! 

Moi

I was in a car accident two months ago.  They thought nothing of giving me *7* chest xrays, even though they knew I had had BC.

Digital mamms have 60% less radiation than film.  So many hospitals and facilities give them now, there's no excuse not to get one.  Then you can save up your Xray radiation quotient for when you have a car accident...

I missed the interview - is there a clip online anywhere?  Or if anyone has it, could they upload it to Youtube?

baywatcher

I think there is a strong chance that my breast cancer was caused by the radiation of routine mammograms. I have no proof of that but I have always just had a "gut" feeling.

I told my gynecologist when I was first diagnosed that I felt the mammos caused the bc and he said "they have been accused of that". I asked a female (general) surgeon if she had mammos and she said "no, I'm non-compliant". I asked my nurse practitioner if she does routine mammos and she said no. Then I asked her about the radiation from mammograms and she told me that they are seeing more and more cancer in the mouth and she thinks (no proof) that is from radiation from dental xrays. And another physician told me that the radiation in mammos can cause bc. So all this has me wondering if the smashing of breasts and then sending radiation thru the tissue is really a good idea???? 

All this has really made me believe that routine mammograms are NOT the way to go. I know that the experts say that mammograms emit no more radiation than a plane flight. I'm not sure I believe that. I am just seriously wondering about the radiation in mammos and I think the experts know that it isn't a good thing but are afraid to come out and say it because radiology is a huge business. I think that if women want to be screened before age 50, maybe ultrasounds or thermograms would be the way to go.

I don't want anyone not to have a procedure that they want or would save their life but I don't want anyone to suffer from bc IF it could possibly caused by the radiation in mammograms. 

I know that there are many women get breast cancer and have NEVER had a mammogram but if there is a chance that mammos could cause cancer then we need something else!!!! I had routine mammos every year (base line at 35). No family history, just followed docs advise thinking I was doing something responsible. My mammo found DCIS. And now I hear DCIS is questionable.   I sure wish I had waited until 50 to get a mammo, because they found the DCIS at 49 and if I hadn't had the mammos, I don't think I would have had DCIS.

baywatcher

Moi-

I found the interview. Google "Good Morning America" and I think you will find it.

jancie

thenewme and Odalys - both of you bring out important points to the board.

I am no rocket scientist - believe me!

But looking at this from a total "common sense" angle - think about it......Susan Love has downplayed the importantance of mammograms - mammography in general.  She believes that mammograms are only important for women 50 and older who by AGE ALONE are at higher risk.

Now we find out about her "new screening" tool that she wants everyone to use HOWEVER, she only wants those people that are high risk to use this new screening tool.

Now why would that be?  Because the higher risk you are the higher chance you have of getting BC and thus.....her numbers look good.  Instead of for instance 50,000 tests and 25,000 are negative which is 50% one way or the other - if you ONLY test those that are high risk don't you think her numbers are going to look more like 75% positive and 25% negative and therefore, people that don't think for themselves are going to think that this new tool is state of the art and no-one should ever get mammograms again.

Radiation?  People are concerned about radiation from mammograms?  Maybe some of you are but I am NOT.  I have had more x-rays taken of my bones than I can count and never once has it crossed my mind that so many x-rays might have caused my breast cancer.  What do you say to those women that are diagnosed at their VERY FIRST MAMMOGRAM.  Did the radiation from that mammogram cause them to get breast cancer in a matter of minutes?  What about women that have never had x-rays in their life and got breast cancer?  Couldn't have been from radiation.

Bottom line -  nobody knows the cause and nobody has the cure.

I was diagnosed at 48 with invasive ductal carcinoma.  That was my 2nd mammogram in 12 years.  Good thing I didn't wait another 2 years or I wouldn't be here more than likely.

Anonymous

I was also diagnosed on my first mammogram - at age 44 (why hadn't I had earlier mammograms ?? ... I thought I was too busy with work and my life and didn't make time for one - I didn't think my risk was high - I have no history of breast cancer in my family - 3 older sisters - none have ever had a suspicious mammogram) My tumor was deep in my breast and could not be felt on exam.  Who knows where I'd be if I'd waited until I was 50 to have a mammogram.

Early detection is one of the best weapons we have in fighting breast cancer - we need more and better tools - but don't throw out what we do have until we've got something that works better.  

We all want a cure - we want to prevent cancers from ever forming -  until then though we need to screen and catch cancer  EARLY. 

Doreen

bearlysane111

This is interesting reading on "The Huffington Post" and also at Dr Love's website. What confuses me is the amount of money raised for Army of Women(citing Dr Love's tour from Oct...$100,000 in one city)and the research? Since cancer has been researched and researched and many new medicines have saved lives...that is great. My question is what replaces the traditional mammogram and MRI? Is there research that has shown some definitive treatments in lieu of these? If so,would love to read about them as many of us have been waiting and praying for answers. For me,the emotions came into play when it was me involved...maybe I am a statistic to insurance and med research. For my family and friends,I am a real person with real medical issues/needs...aren't we all? How interesting when the "statistic" becomes a real person in one's life! Watching "real"statistics lose their battles is eye-opening and sad.

 Odalys,I,too,joined the Army of Women and in my opinion,I am in the wrong branch of service...in terms of cancer research goals and objectives. 

My eighty-four yr old mother was encouraged(by her nephrologist)to have a mammogram soon. She replied that the quality of her life is more important to her,now,as she them without fail from the age of forty to her seventies. She had early stage uterine cancer at age twenty-nine. How ironic to encourage an octogenerian and negate others? Both of my grandmothers died of uterine cancer issues;so,am I a statistic or are they? JMO

My second irregular mammogram showed DCIS at age 54...had had mammos since age 40. I am delighted that it was spotted...my calcs had no symptoms,no pain,no warning. Ironically,a week before my annual mammogram,my gynecologist said all my numbers looked great...and how healthy I was! So,I will forever be grateful for mammograms...and this was before digital and CAD  were used. JMO Are they perfect tools...no,but for me...I am grateful it was sighted,diagnosed and treated. 

Iris 

Edited to add:I had two ultrasounds and heat thermography...nothing showed amiss(after being discovered with mammogram) 

TenderIsOurMight

Breast MRI's could become the new "gold standard" for breast cancer screening down the road. They reveal beautifully the breast and all of it's findings baring some types of calcifications.

But, and this is why MRI's as a screening tool must wait, they show what are by biopsy found to be "false positives" in too many women and men which is costly, and they need special training in performance and reading which not every radiologists has. Too, there is the  problem of cost, but that could be less of a problem is it was decided to make it less of a problem. In fairness to radiologists, some of this excessive cost is liability related, so a betterment of malpractice liability needs to occur also. The lack of pickup of microcalcifications, often seen on mammogram, is limiting when these are in reality associated with invasive cancer.

If these kinks can be worked out on breast MRI, through the hard work of scientists, technicians and physicians dedicated to finding and performing a better breast cancer screening tool, it is possible imho we may see mammograms eventually stop being the gold standard. Mammograms are low cost, but also associated with false negatives (rate usually quoted as up to 10%, but often admitted as higher in select circumstances like perhaps dense breasts). Hence as a screening tool, mammograms are not perfect if acceptable perfection is defined as low cost and earliest breast cancer stage detection. 

If Breast MRI's could be merged with ER/PR receptor pickup, and for triple negative cancers, an in-vivo (in body) breast cancer protein antigen-antibody pickup by our researchers, perhaps the shear volume of screening MRI's would drive down their allowed costs, improve their accuracy, and allow replacement of mammography. This may not be technically feasible in the future, for what I know. For now, mammograms are the best we have.

Of course, this is just my humble opinion.

Tender

cp418

Funny Dr. Susan Love never appealed to me whenever I read her articles, viewed interviews, etc.  I too have felt she has another agenda to promote her 'breast pap smear' - - and never read any news or information about it.  Frankly, it's gone no where and is rather too specific if she only wants to use on high risk patients.

I represent one of the 70% of patients who were considered low risk with no family history, under age 50. Frankly, the mamogram saved my life as it detected a tumor that had already spread to my lymph nodes.  I certainly agree that mammography is not the best and doesn't work for everyone - - - fails some patients into false sense of security that they are all clear. 

However, considering how many younger women I see posting here under age 50 when diagnosed with IDC and ILC - - - I'm still glad they we have this as a tool until some BETTER and SAFER screening tool and techniques come along. 

Unfortunately, our medical support has not yet reached the point of being able to specifically screen and identify the less aggressive DCIS, LCIS for minimal treatment or to ignore.  For those of us with more aggressive cancers, we are simply thankful to be alive.   

missrwe

I found Dr. Love's book to be the very best of all the ones I read. She writes well - and isn't patronizingly cute - but best of all HER BOOK WAS NOT PINK! I was so sick of all the cutesy-pie pink guides to breast cancer it was such a relief to read an intelligently written comprehensive guide to breast disease.

The battle over guidelines is beyond my understanding. I see merit on both sides. Certainly women's lives are saved by earlier screening, but what's less clear is if women's lives are lost by unnecessary screening - different women, obviously.

I guess with my experience I would come down on the side of caution and proceed with the screening at 40 guidelines until we know more.

Bottom line - more research is required. It would be great to know which of the early breast cancer diagnoses can be treated with watchful waiting and no invasive or mutilating procedures. It seems to me that Dr. Love is one of the good guys. She's dedicated her life to research. She's trying to save lives and breasts.

PSK07

Dr Love has always, always been dismissive of women with DCIS. She doesn't think it's cancer.  She is patronizing to women with DCIS both in interviews and in her book.  I had no qualms about not purchasing her book nor recommending it to others.

Since no one can figure out which DCIS will become invasive, no one person can say if I was overtreated or not. I - and my doctors - don't happen to believe I was overtreated. Perhaps tiny DCIS lesions, grade 1 can be watched and not removed, but until they have better knowledge, it's up to a woman and her medical team.  Some women may regret the treatment they received. That's why it takes a lot of research and discussion before commiting to something that will forever change how you view your body.

You get more rads by flying in an airplane at 30,000 ft than you do with a mammogram. I had a grand total of 5 mammograms before I was dx. If all it takes is 5, then why haven't my sisters been dx? 

It's time Dr Love treated all women with and without cancer with the respect they deserve.

seizetheday

The general’s mind has gone AWOL! I was promoting army of women to many. Brilliant idea I think (army of women) but the leader of the pink army has lost a HUGE amount of respect. We need a new general.  Please, someone, take over the army of women idea because Susan Love can NOT be our leader.  All you have to do is visit some breast cancer forums to see how many people were saved by early detection. If you are so desperate to save money I can understand the mammogram recommendation (though it will kill many). But supporting no self exams is extreme, reckless behavior. Why, why would they recommend that. All the 50 and under cases are to die? What about all the motherless young children? I also can not believe the ignorance of thinking it must be ok b/c Europe does it. They have horrible health care. Talk to people who live there. The wealthiest of people fly to the USA for care. Educate yourselves.
I agree that we need improvements in the system BUT they are jumping ahead of themselves. I agree that getting rid of radiation is the way to go. We are not ready though! Yes, we need better tools, but are we to raise the death rate to get there?I was not high risk (according to guidelines) and 44 when diagnosed. My eight year old daughter would be without her mother had it not been for the care I received.The PINK girls needs to take this to the streets! Our lives DO have meaning!  We need them to hear us roar!  Let's boycott Avon until they separate themselves from Love.  Let's find someone else to take over the organizing of the troops for research.  Susan Love is NOT as smart as I once thought.  Those who support this recommendation are not understanding what this really means and are very naive. 

Hattie

Well, I am thinking I want people who think on my team

 I wish I could have been in her study,  Save the breast , save the woman.

Mammos are a tool, but limited.

Numbers are what we need to go to, unless prayers are all you want.

Take care,

--Hattie 

Moi

Anyone who thinks the amount of radiation in a mammo would *give* her BC, please note:  If you have ever drank diet soda, eaten meat, eaten canned food, breathed air in a city, walked into a dentist's office, breathed air from new carpets - then you have exposed yourself to carcinogens and cannot solely blame Xrays.  I didn't even count smoking....

Moi

@Baywatcher - I could not find the interview - there was one with three other doctors, but not that one. 

cp418

Go to ABC news site and select 'Good Morning America', then select video for Tuesday.  You may need to scroll but will see it listed.  Maybe this link will work.

http://abcnews.go.com/GMA/

Kailani

Hi Moi,

I saw a post you wrote to me on HuffPo that got scrubbed! It got me thinking.I watched the Good Morning America video.I heard Dr.Susan Love say we need to find a better method of screening.

I'm looking at her Breast Bible. On the "About the Author" page it says she's working on a new intraductal screening approach and she founded a medical device company to develop the equipment to implement her approach.

I can't help but wonder how this factors into her stance on this issue?

Dr Love pointed out to someone in the comments on the thread that Radiologists were the ones objecting to this the most---implying a monetary incentive on their part.

HelenaJ

Doreen - exactly...what else have we got. 

Edited to add - my BC was found by self examination (nothing showed on the mammogram) at age 46, my younger sister's was found by self examination and showed up big time on the mammogram... she was 35 ...and now is healthy happy and beautiful at 45. 

missrwe

I read Dr. Love's book several times, and I didn't find her dismissive of DCIS patients. If anything, I found her very sympathetic to them and was really hoping that with continued research and better, more accurate testing DCIS cases could be identified that would never, ever, ever become invasive or be the cause of death thus helping many, many women avoid mutilation.

The truth is that mammography does save lives, and it also has become so sensitive that it picks up DCIS that would never be a problem. Once it's identified the only thing that can be done is to treat it (surgery and/or radiation) because currently there's no way to safely say that a woman will be just fine with watchful waiting.

By all means, defend the position of continuing with screening recommendations (I agree with it), but please, some respect for the truth and for those who are leading the battle to end breast cancer.

Dr. Love's book isn't for everyone, but for those with a curious mind and the understanding to comprehend the subtleties of breast disease and its treatment it's a great resource.

Blundin2005

Tender -- Thanks.  Well said. 

Marilyn 

smithlme

Has Dr. Love ever had breast cancer? If she had I think she would be saying something quite different. I am also thinking of un-joining the Army of Women. What is Avon's opinion on these new guidelines? That's one walk I won't be supporting if they choose to support her...

Linda