New Guidelines or Do you think you were over-treated

I was so upset when I read about the new guidelines. I was dx in May 2008, with grade 3 DCIS at age 43, picked up by a routine mammogram. I chose a bilateral mastectomy because I am a worrier to begin with and have some clotting factors that made me nervous about taking tamoxifen.  Should I have waited til age 50 when I possibly would have an invasive cancer? With no family history or risk factors, I was just someone who had "bad luck" as my oncologist said. Many women with the gene mutation don't know about it until they lose one or more family members. I think waiting until 50 is a gamble we shouldn't have to take. My surgeries cost over $100,000 while a mammogram is a tiny fraction of that.

Unfortunately, I think this is just the first step toward decreasing the overall level of health care in America.  We are in for many more setbacks as we approach sweeping change in our health care system.  I find it shocking that with all of the young women diagnosed with this disease, they would even consider this.  If anything, they should be lowering the baseline age!

Sjack-

I could have written your post. As a matter of fact, I thought about posting a similar question but figured that most women would strongly disagree and I didn't want to start an uproar.

I have often thought that the routine mammograms caused my breast cancer. When I was first diagnosed, I told my gynocologist that I thought my mammograms caused the cancer and he said "they have been accused of that".

Dr. Susan Love was on Good Morning America this morning. She said that radiation from mammograms are causing breast cancer. It makes sense to me.

I also think that DCIS is overtreated. There was a study in Sweden (I think) where they did autopsys on women that had died of causes other than cancer and found that 50% had DCIS. 

I am currently in central Ohio until early December. Would you be interested in doing lunch?

sjack827, thanks for posting this --  it took great courage on this board. Yes, I do think that I was overtreated. I had my surgery (lumpectomy, or I guess partial mastectomy, as there was no lump) in September of this year. Today, I am thrilled that women will be spared my agony. I am 47 years old, no family history of breast cancer, thin, athletic and  completely asymptomatic. My DCIS was picked up by a mammogram that showed calcifications, and a pre-surgery MRI showed absolutely nothing. Pathology report showed low-grade DCIS. I do not feel like a mammogram saved my life, rather, I feel like I am a victim of the screening mania that overtook this country and led women to think that their breasts are just cancer waiting to happen. Today is a great day -- the doctors can treat the women who need treatment and the women who don't need treatment can live happy, unscarred lives.

I don't think it's just DCIS that's sometimes being overtreated. I think some of us with small, grade 1 tumors are being way overtreated too. 

I had both DCIS (40%) and IDC (60%) in a single, small 1 cm tumor. I know I WASN'T over treated. However, the only reason I wasn't is because I refused to allow anything other than the lumpectomy and SNB.  I even hesitated a while about doing the SNB at all but consented with the stipulation that no more than 3 nodes to be removed (he removed only 1).

I have mixed feelings about the mammogram controversy. On one hand, I agree that there will be a lot of women between the ages of 40-49 negatively affected by changing the baseline age to 50. I was diagnosed by routine mammogram about a week after my 49th B-day with no family hiostory, no palpable lump and no reason to get a mammogram other than that I was suppose too since I was in the over 40 age bracket and my PCP was badgering me to get one done. I actually skipped doing them for about 7 years prior and only got the ones at age 40 and 41.  Would it have made that much difference had I not had one for another year at age 50?.  In my case, probably not. However, had it not been grade 1, who knows.

At age 44 - the mammogram that detected my tumor saved my life - I truly believe that.  My tumor, like many was IDC wit DCIS surrounding it.  "AT what point does DCIS turn invasive?" I aske my cancer team when we were making my decisions - they told me that do not wait around to see - who in their right mind would wait.

It's true that mammograms have failed to pick up on tumors of women I know.  However, waiting until 50 would have led to a worse prognosis for me, and my life does matter.

My tumor was non palpable so at what stage would it have been detected?  Thank goodness, I don't have to go there.

My problem with that is that I would have never had mammograms - I have a very female populated family tree - no one (except me!) has had breast cancer, so I would never have had them as I am not in any risk group.  My tumor was non palpable - so who knows when it would have been discovered.

Waiting until 50 is not the answer - maybe every two years in your 40's, or some other diagnostic test in your 40's.

Ultrasounds pick up cancer, but I guess they are too expensive.  I sure feel like my life is worth it and so do my kids and husband!

mbordo,

Well said..............

Everyone,

I think that what the task force has done is to try to change the standard of care. I think it's wrong, wrong, wrong, Each and everyone of you has the choice not to do a mammogram before age 50 if you WANT. Your choice........however by changing a standard of care maybe your insurance(or Government Run Health Care) won't be required to cover it for those that do want it at age 40, and beyond.

Doesn't anyone wonder about how we have so many more survivors today than we did say 10, 15 years ago ? Early Detection does save lives, and just as you have a choice about getting a mammogram or not, if you get a DX of Breast Cancer YOU can choose your course of TX.

I personally feel that I was treated appropriately, Mammogram found clusters of microcalcification I had a biopsy which came back DCIS at first my BC Surgeon thought I'd be a good candidate for a lumpectomy followed by rads. After the Cancer "Team" met, the Radiologist wanted a MRI as I had another spot in the same breast that looked the same. After the MRI results all agreed a mastectomy was a better choice, I had decided that BEFORE the results were back.

I had mastecomy w/ SN biopsy, when the path report came back it showed both places were DCIS but the SN was clear. I am not doing Tamoxifen, as my Oncology Surgeon does not think it will improve my % of reoccurance enough to out weigh the SE. Again bottom line it's my choice and I did give it a 5 wk try. Then decided against taking it.

Fox News today has been doing a great job of covering this, with guest speakers including Nancy Brinker. On their web site they have posted the letter from Dr. Marisa Weiss, KUDOS to them for caring enough about this story and us to talk about it.

Blessings all,

I think this is Obama-care at its finest ladies.  Sorry if you disagree, but the report talked more about saving money and "reducing unnecesary tests" than about anything else and as far as I read, there were not alot of statistics mentioned to back up the change of direction.  How many of us would be dead if not for early detection? How many DCIS patients would now have invasive cancer instead of "abnormal cells". Does that matter to the current administration? I think that insurance companies will now stop paying for mammograms if you're not 50, so we'll all have to bear the cost.  I'm 2 weeks away from having surgery and this makes me sick....this is all I need, more stress.

According to the report, mortality would not be reduced by changing the screening forward 10 years; however, morbidity would be increased if women moved from Stage 1 to Stage 2 with the delay and had to take chemo.

As far as colon ca goes, the screening guidelines have been proven to reduce mortality. That said, I agree a colonoscopy is much more unpleasant and time-consuming than mammography--so skipping it is what lots of folks do.

I do not believe mammograms caused my DCIS.  I only had....5 mammograms in over 15 years before the one with the current bad news.  I seriously doubt 5 mammograms is the cause.

Was I overtreated?  There's no way I'll be able to make that claim with a straight face.  I did all the research, had a gazillion consults, understand the medical controversies and how little is known about the disease, and in the end, I am responsible for the choices I'll be making.

Do I wish medicine had a better understanding of DICS?  Damned right I do, but since I didn't bust my ass and go to med school, or get a PhD in chemistry or some such, I haven't helped advance the state of scientific development.

So, sure, hopefully 5 years from now, when there's a cure for this crap, and all you have to do is get an injection of GoodStuff into your breast ducts and Voila!  - yeah, I'll think I was overtreated.  Does it piss me off to no end that I may have to amputate a body part for a non-life threatening condition (non-life threatening as far as I currently know, anyway; having not yet had the courage to make a decision and have a real surgery), does it piss me off that I have to have surgery?  HELL YEAH!!!! 

But I can't call it "overtreated" because what I do is my own damned choice, in the face of unknowable results and consequences.

I may not think it's overtreatment, but it still makes me angry.  The whole thing sucks.

Ginger - I don't think the researchers had accurate data to predict "mortality would not be reduced by changing the screening forward 10".  You don't have to be a mathematician to see how many lives were saved by early detection and prevention on this board alone.  All these ladies were in their 30's-40's.  

 I find the timing of this report way too suspect considering all that is going on with HC reform.  I think we bc survivors need to unite to show we are not a stastistic and our lives do matter.  I am sure insurance companies and the govt can find cost savings elsewhere.  The way I see it, the patient should always have a choice in what treatment plan they will receive. 

We should have the radiologists on our side!

Sjack,

Overtreated?  Seriously?  I was diagnosed with a multifocal cancer at the age of 45.  I would not have made it to 50 if it wasn't found.  The task force is worried about the "stress" of a false positive?  I hoped and prayed for a false positive.  But thankfully, my cancer was found and found early.  If a mass can grow to 2cm in a year, where would it have been in another 5?

 I am infuriated with the so called new guidelines, I would be dead by 50.  I've done nothing but call and write my representatives and encourage everyone else to do so. This is the beginning health care rationing.  

Paula 

Do I think I was overtreated? No. I had lumpectomy, radiation, tamoxifen. My DCIS was grade 2 with necrosis. My mom had BC, admittedly post-menopausal, and while we were told that her age at dx (62) did not increase our risk any, my doctors added that into their treatment recommendations. 

Is some DCIS overtreated?  Sure it is. My own feeling is that a bi-lat mastectomy for 0.1mm of grade 1 DCIS with no other risk factors is overkill, but treatment is up to the woman and her doctor. If someone else wants to do that, it's their decision to make, not mine.

My rad onc told me 2 years ago that women die every year of something unrelated to BC and previously undetected DCIS is found in autopsy.  The issue I have is that they flat-out don't know which cases of DCIS will become invasive and which won't. Until they figure that out, I think the recs are wrong and shortsighted.