Susan Love Defending New Guidelines

I applaud Susan Love's decision to defend the new guidelines. I always had a tremendous amount of respect for her as a well-informed physician with a keen sense of ethics. And even more so, now.

If mammograms have reduced breast cancer mortality in any kind of way in the US, this has got to be the only country for which that has happened. The previous guidelines were unfair to American women.

Having said that, I totally understand the current distress, bordering on panic, in the medical community. It is, indeed, disheartening, after decades of pushing all-out mammography, to back out of it all  now. However, it is never too late to do the right thing.

Yazmin said, "...The previous guidelines were unfair to American women...." 

HUH???

And then she said, "..... However, it is never too late to do the right thing...."

Which is...?  Do you seriously believe it's "the right thing" to tell us under 50's not to bother with any screening for breast cancer?   Seriously??

As to Dr. Susan Love and her "keen ethics," that's debatable too.  Here she is trying to discredit mammograms, while at the same time developing a new procedure to potentially replace mammograms?  Where I come from they call that squashing the competition.

The problem about changing guidelines/recommendations is when those changes become a barrier to certain people....as someone who was asymptomatic and diagnosed from my baseline at 40, I have my own opinions.  However, wouldn't it be better to say "women may opt out until 50, but should discuss their personal concerns with their physician" rather than having ladies 40-50 having to press physicians/insurance companies to override "guidelines" - which, I believe are what ins. co's use to determine coverage?  No one in this country is ever forced to have a mammo - and it's always easier to "opt out" of something than to "opt-in"...

I volunteer as a peer counselor for Breast Cancer Network of Strength and they have training calls every month - several months ago they had Dr Susan Love on to talk to us - she mentioned that he's currently working on a revised copy of her book  - addressing new findings - etc. Her comments gave me the impression that she's well into that work. 

I am shocked that she supports these guidelines ...   

signed,

thrown under the bus by Susan Love

I find all of this really hard to swallow.

Living in British Columbia, Canada we start mammograms at age 40 here.  And apparently the BC Cancer agency which sets the guidelines is still supporting this.

I had my first mammogram at age 38.  Wanna know why?  Because threw my job (sales and marketing) I kept running into women who were diagnosed with breast cancer.  It was insane..like every client I went to see had some story or heard of a story.

K..I got freaked out.  Went to the walk in clinic and asked for a mammogram.  Doc felt my boobs said...all is fine, no lumps, don't worry, wait til you are 40.  Ok, I ran into another client....breast cancer.  Went back to the clinic...doc felt my boobs said all is ok...dont be paranoid, wait til you are 40 for regular screening.  K.... I did this about 4 times...where finally another doctor felt sorry for me and sent me for a mammogram.  Guess what they found???

Calcifications (nope can't feel those - can you),....3 biopsies later.....needle biopsy, stereotactic and then finally an excisional wire guided....guess what else they found....DCIS and 2 tiny tumours of IDC  4mm and 1mm.  This was 1 week after I turned 39. 

Luckily, tiny tumors, grade 1, no nodes.  I had another lumpectomy, radiation and tamox!

I am almost 41 now..in fact 2 more weeks.  Had I waited until I was 40 I could have had a different story.

A mammogram saved my life.

of all the bullsh...in the world this is the most unbelievable!!!!!!

if i had not done a self exam at age 45 i would be dead!!!!!

are they kidding me???

i am so blown away by all this 

my gosh this is right up there withall the new baloney like  don't put babies on their stomachs baby asprin is bad and calling scarlett fever the strep rash

this is nothing more the the first step in obam'a plan to cut "unecessary testing"

WOW WHAT A WAY TO CURB THE INS COMPANIES!!!!!I'm sure they will all jump right on this floting load of garbage!!!!

i plan to tell any one who will listen to GO GET A MAMO ASAP!!!!!

I am one woman who found an agressive cancer with a routine mammogram. My first ever at age 42.  If I had waited until the lump could be felt, I for sure would have a more advanced cancer.  I am saddened thinking about the women out there like me who will be skipping mammograms because of these guidelines. 

Dr Dr. Love

I am 43 years old and I have metatstatic breast cancer. I see my oncologist once a month and expect to do so for the rest of my life .With yearly mammograms, a significant number of women can avoid my fate. Please reconsider your stance.

Ah, DCIS. The red haired step child of breast cancer (with apologies to any red haired step children out there) 

I stand by my statement. Dr Love has been patronizing and dismissive of DCIS patients. She does NOT believe that DCIS is cancer. My doctor called it cancer. My oncologists (medical and rad) called it cancer. Just because it is PREINVASIVE does not mean it is not cancer.

She is against most treatment for DCIS. Why? Because SOME women are overtreated. Until Dr Love can determine which woman's DCIS will not advance to full-blown invasive cancer, she cannot deny us the treatment we need and deserve.  Right now, there is NO way to determine which DCIS will get worse and which will not.  Ignoring it and hoping it will go away isn't the way to research. TG treatment decisions were made with my doctors and not with her.

Once study was cancelled when they found that a larger than anticipated number of women with DCIS who were not getting radiation were getting recurrences - invasive recurrences. It's unethical to accrue to studies where no treatment may result in a worsening of the disease. 

There are a lot of people out there with DCIS. We are indeed fortunate as once treated & all DCIS is removed, we can be considered cured. This does not mean that our risk goes back to 0. It remains higher than the average woman. It does mean that we deserve the same respect as any other cancer patient.

I won't be that test patient to see if cutting out mammograms and/or not treating DCIS that is found will result in a later case of invasive BC. Will you? Will your daughter/sister/mother/niece?

It isn't all about mortality. The mammogram didn't save my life, but because I got one I may be monitored to the extent that any invasive will be picked up early & treated, it may mean my sisters will pay closer attention to their breast health.  It may mean that my mom won't have to watch one of her daughters endure the hell of chemo that she went through.

I'm pissed.

Guy comes in to see the doc with a cold.  Doc's recommendation is for him to run naked in the snow, so the patient does.

When he returns to the doc you can imagine his condition.  Doc says: well, now you have pneumonia, something I can treat., 

Is that what DCIS is to those docs who recommend no treatment?  Wait till it grows and we'll have an easier time deciding how much boob to amputate.

And what about pap smears?  Anyone rec'd a report of atypical cells and returned and even had a cold coneazation?  Wounder if we should change screening for cervical cancer?

Why the outrage over the notion that DCIS *may* be overtreated, and that it's worth studying alternative approaches?  Isn't that analogous to the idea that many women with early-stage invasive cancer are overtreated (with chemo), which led to the research which led to the Oncotype Dx test, which most of us would agree is a good thing?  "Watchful waiting" is considered a reasonable treatment option for some men with prostate cancer.  Might the same be true for some women with DCIS?  Or maybe some women with DCIS could avoid radiation, just as - thanks to the Oncotype Dx test - some women with invasive cancer can avoid chemo? We don't know (and not being a medical researcher, I have no idea how one ethically designs a study of this), but wouldn't it be good to find out?  Isn't that basically what Susan Love is saying?

This matters to me because I had a very small invasive tumor (two tumors, actually) accompanied by extensive, diffuse DCIS.  The DCIS forced me to have a mastectomy which I really, really didn't want.  That's the current standard of care.  Maybe it will always be the standard of care - who knows.  But I, for one, am all for researchers asking questions - about screening guidelines, about treatments - and looking for answers.  We can argue about what the weight of the evidence does or does not mean, but we shouldn't jump on people for asking questions that go against the (current) conventional wisdom.

Linda

Interesting point Linda.  I opted out of chemo myself after mad researching due to the size of my IDC and having a better response with hormonaltherapy than with chemotherapy and having the Oncotype DX.  I also didn't want the long term SE's of chemo to exacerbate my pre-existing chronic pain conditions. We are all individuals and need to be treated that way, not just standard of care.

Pam, I just happened to read this article in the wee hours entitled:  The Sea of Uncertainty Surrounding Ductal Carcinoma In Situ-The Price of Screening Mammography.  Because nobody knows which DCIS will become invasive, almost all DCIS is treated with surgery.  Quoting from the article: "The fundamentalparadox of early cancer detection is that, while some may behelped, others get a diagnosis they'd be better off without."   There is a pilot study being conducted to see if giving women with ER/PR+ DCIS cancer Tamoxifen for 3 months will reduce the volume of the tumor and hopefully ultimately identify ways of treating DCIS nonsurgically and still prevent progression to invasive cancer.  This article says over 50,000 american women a year are dx'd with DCIS!  Having gone through a mastectomy myself I know how very awful it is.  I would love to see alot less women having to endure that.  I think you'll find this article interesting.

http://jnci.oxfordjournals.org/cgi/content/full/100/4/228

edited because I really butchered a sentence ..

Iodine - actually, they just did change the screening guidelines for PAP smears. Start when you're 21, not when you become sexually active, and then less frequently than once a year after that (I forget the time interval.) Strange that it hasn't really made a splash in the news.

Actually, I have to issue an apology for my post (above). I went back and read what I have written and found that my post is insenstive, and I have  no excuse for that, even though I was doing 3 different things at the time I wrote it. That was simply not the right way to say what I had to say.

Here is what I really meant to say: In a nutshell, I meant to say that, while mammography has been finding tumors earlier, an increasing number of scientists believe that this has not translated into a significant reduction in mortality. This is understandable, now that the scientific community understands tumors better, and has them classified in "tumor families," which is a more significant indicator of long-term survival than tumor grades, as previously done. In addition to that, the radiation from mammography itself has long been cause for concern despite reassurances that it is low-dose (it appears that the number of DCIS tumors found has increased since the adoption of automatic, regular mammography).

Again, I apologize for the lack of sensitivity I have shown above.

http://www.cancerdecisions.com/content/view/276/2/lang,english/

http://www.newsrx.com/newsletters/Womens-Health-Weekly/1995-06-26/2224779WW.html

http://www.yourhealthbase.com/database/a110e.htm

http://blogs.healthfreedomalliance.org/blog/2009/11/18/mammogate-and-the-dangers-of-radation/

http://www.holisticcancersolutions.com/mammography.htm

http://www.springerlink.com/content/700u761681hx2584/

http://www.cancerdecisions.com/content/view/283/2/lang,english/

http://www.cancerdecisions.com/content/view/150/2/lang,english/

http://books.google.com/books?id=GZY809r0PlUC&pg=PA44&lpg=PA44&dq=Sweden+%22mammography%22&source=bl&ots=wRcXEulyJ9&sig=Nq_tzcQyXa1A5r1kj6BejNriZGI&hl=en&ei=fJMGS8GNKtL7nAeKlZC1Cw&sa=X&oi=book_result&ct=result&resnum=2&ved=0CAwQ6AEwATgU#v=onepage&q=Sweden%20%22mammography%22&f=fals  (this is the Swedish study)

blah,

Thanks for posting that link. I found it VERY interesting., Wish others would read it too . I actually don't think the problem is so much overdiagnosis as it is overtreatment.  Unfortunately, at this point in time, the knee jerk reaction is to treat anything and everything as if it has a high potential for eventual mortality. Generally though, I think advancements into solving that overtreatment problem are finally moving in the right direction, though at a snails pace.