I Have DCIS, Should I Have a Bilateral Mastectomy?

I Have DCIS, Should I Have a Bilateral Mastectomy?

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Bilateral Mastectomy Evidence

Benefit:

There is none. No women with DCIS have been included in a randomized controlled trial.

Harm:

Cosmetic outcomes are unclear; Second operations to fix the cosmetic outcome may be needed, but reasonable estimates for harm and complications do not exist as bilateral mastectomy has not been systematically studied in DCIS. A paper in Annals of Surgery found that out of 600 women at one institution, 42% of 209 women undergoing bilateral mastectomy had complications versus 29% of 391 women undergoing unilateral mastectomy (42-29% = 13%, added harm). Serious complications of bilateral mastectomy occurred in 14%; 4% with unilateral(14-4% = 10%, added harm).

Trade-off:

There is no trade-off between benefit and harm. Since there is no benefit, only harm is possible. Informed medical-decision-making requires a trade-off between added benefit and added harm. This is not the case for DCIS and bilateral mastectomy.

Case:

In the last 6 months I have been asked by 3 women diagnosed with DCIS if they should have bilateral mastectomy. Some women had seen up to 3 cancer surgeons and 3 cosmetic surgeons and had been advised by all that bilateral mastectomy was a reasonable option for treatment.

Background:

Ductal Carcinoma in Situ (DCIS) is a specific type of breast cancer diagnosis. It used to be uncommon, but since the introduction of screening mammography, nearly 1 in 5 women with cancer are diagnosed with this type. DCIS is not an invasive type of cancer and a woman diagnosed with DCIS will have a low recurrence rate of either local or distantly spread cancer (only 1-2% in a life time). Hence, life expectancy with DCIS is nearly normal.

Two main options for treating DCIS have been studied. First, unilateral (one breast only) mastectomy is the most studied option. In this option, the entire breast is removed. Second, conservative treatment, removing only the area of the cancer rather than the entire breast, followed by radiation therapy, is an alternative despite the fact that this conservative approach has not been studied head to head with mastectomy for DCIS.

Hence, bilateral mastectomy for DCIS has never been studied. Bilateral mastectomy has been limited to women with high risk cancers, such as those with genetic abnormalities like BRCA 1,2. Even in those situations, randomized trials are lacking. Hence, the evidence for/against bilateral mastectomy is based on observational studies. Observational studies are not experiments. In these study designs, some women choose to undergo the procedure while others do not, and we are unclear why. It may be that women who chose to have a bilateral mastectomy are different types of women than those who do not. Hence, a woman’s personal characteristics may obscure our ability to assess the independent effects of treatments examined only in observational studies. For reasons that we will explore in other blog posts, only information from randomized experiments should be used for making your medical decisions. This stringency about the quality of information for making medical-decisions is mine, but through our blogs you will see examples of more people harmed than helped when acting on treatments proposed from observational studies. These examples will support the idea of making decisions only with randomized experiments.

At present, if you have DCIS, a recommendation by a physician for bilateral mastectomy is based on conjecture. Despite the lack of evidence for benefit, bilateral mastectomy for early stage cancer is on the rise. [http://www.ncbi.nlm.nih.gov/pubmed/25182099]. In 1998 2% of women in California underwent bilateral mastectomy; in 2011, 12% did. While some women have stated that removing both breasts reduces their worry of breast cancer in the future, this statement cannot be made based on evidence. We don’t know if women will be better off with bilateral mastectomy so we don’t know if you can/should worry less or not.

Rob McNutt, MD  is a contributing editor to THCB. 

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23 Comments on "I Have DCIS, Should I Have a Bilateral Mastectomy?"


Guest
Mar 19, 2015

Dear Another DCIS person; I understand your comments in light of your sense of what is the outcome of that matters. The point is, however, that you did not need the surveillance either; you could have safely forgone both. That is the point. It is medical care driving your beliefs, not evidence, which is the only reason that medical care should exist; to provide you with the knowledge to know what is best for you.

Guest
Another DCIS person
Jan 13, 2015

It’s not just about efficacy of treatment. What the doc seems to be missing is that the intense medical surveillance required by today’s protocols are alone reason enough to get a mastectomy. A mammogram is no walk in the park, a needle biopsy is worse, and while some may disagree, I found the stereotactic mammogram to be even worse than a lumpectomy. I’ve had all of these “less than” a mastectomy options and I found them all to be taxing & humiliating. Constant surveillance (even when the findings are benign) can be too much– it was for me. I welcomed the DCIS diagnosis as my chance to escape today’s protocols.

I can testify that a double mastectomy is a serious surgery but I can also say I’m happier with a flat chest (free nipple transplant, too) and the knowledge that I NEVER have to return for breast surveillance! This is much better than allowing the docs to disfigure and humiliate me bite, by bite, at 6 months intervals. I’m thankful to have made this choice early and avoided tamoxifen and radiation. Until there’s escape from these protocols, I would encourage other women to use this same escape hatch.

Guest
Dec 26, 2014

The comments to this post are wonderful. They run the gamut of thoughts about medical care and its value to us.

I was recently told by a colleague that, at her institution, DCIS is not considered cancer. However, having just recently consulted with 2 women getting care at that institution for help in informed choices regarding treatment for DCIS, I pondered the disconnect. DCIS is communicated and acted upon by the medical system as a cancer and women who have it and are treated become cancer survivors. Candace’s comments are eloquent and on mark.

For those facing this condition, and for any of us facing clinical situations of uncertainty, myself included, we emotionally identify with the conundrums. It is though to be sick, It is tough to have to choose. But, doesn’t making a choice require something to decide about? The essence of informed care is a balance of added benefit (life, function) and simultaneous added harm when comparing one option with another. That is a difficult task, for sure, even when we can reliably measure the differences. A decision that balances a person’s added chance for benefit against the added chance for harm seems to me, then, called a preference. The term, “Preference” should be defined as a patient’s informed choice, and its use should be limited, in my view, to this situation.

I ask, can we have preferences for treatments/tests we know nothing about? I don’t think so. We can discuss and share our values, but without study and careful collection of information, patients can’t trade-off the marginal difference in one value against the marginal difference in another value. Hence, without knowing, there is no such thing as a preference?

I once wrote that all the insured people in the world owe me a BMW. The reason, I have a preference for the seats, especially when heated. For some reason the BMW seats just fit me and my back pain goes away. I got no takers and my insurers suggested that I use my health savings account to buy the car, but that idea failed me as well. I get their point; I haven’t tried all car seats so I don’t know if the BMW car seats are that much better, and no one has conducted a study of BMW car seats on back pain outcomes. So, I am sorry I tried to get all of you to pay for my car.

We have some tough philosophical issues ahead in medical care; the issues are gender neutral and universal. I look forward to watching it play out as patients become informed and then face the conundrums the medical system has presently inadequately addressed.

Guest
Candace
Dec 22, 2014

After DCIS diagnosis in 2010 I thoroughly researched my options and the facts available and sought informed council. Both lumpectomy with radiation and 5 yrs tamoxifen and affected breast mastectomy were presented as viable options with bilateral mastectomy given to me as a choice as well. Though the personal consequences varied with each procedure it was clear that my survival risk would not be statistically impacted by my treatment choice. Also, research indicates that my recurrence rate would be modestly affected by my decision. So, the decision comes down to how a woman wants to deal with cancer. All surgeries have cosmetic implications. All surgeries have risks of recovery issues such as small margins and infections. I chose Lumpectomy, radiation and tamoxifen. That is the least invasive standard of care. This choice matches my medical needs and personal preferences. It is not a perfect choice. I have had an additional biopsy due to new calcifications which were benign. I have side effects from tamoxifen but not severe. I have returned to annual mammograms. My fear of recurrence has diminished with time and with continuing research. A dear friend recently faced her own DCIS decision and opted for double mastectomy with immediate reconstruction. Infection in one side now has her costs doubling as her treatment stretched into a second fiscal insurance year and now faces a 7 month recovery. She’s already disappointed with her reconstruction appearance and although she will not have mammograms she will have to have her implants monitored for failure and they may need replacement surgery every ten years. That’s why treatment options remain such a personal choice. And, Vincent, DCIS is cancer. It shall remain cancer until standard of care for DCIS is different from cancer.

Guest
Dec 19, 2014

Eighteen months ago I used molecular typing and extensive study of trials to determine that my risk was low enough after lumpectomy to forego radiotherapy/hormonal therapy. My onco had to agree. My female surgeon also. My story can be found here: http://dcisnorads.blogspot.com/2013/07/packing-for-journey-im-kay.html?m=1
From my vantage point, women are terified of toxic and intolerable breast cancer treatment. Surgery seems safest with fewer worries later over possible harms done by treatment. And they want to put all it behind them, even in the contralateral breast. What some may not have been adequately taught is that even for higher grade DCIS, mortality is extremely low. Still, doing less now may mean continuing the fight later. And they want none of it. And there’s always the (albeit minute) risk of mets due to undertreatment. Bottom line: Until prognostics can keep pace with diagnostics, over treatment will be the norm.

Guest
Vincent
Dec 19, 2014

Amazing! Since DCIS is not breast cancer, why are we talking about prophylactic breast removal? CHANGE and careful monitoring needs to precede breast removal! Come to your senses, people!

Guest
Perry
Dec 19, 2014

Is it any wonder Mary Q. Public is totally confused by all this?

Guest
Saurabh Jha
Dec 19, 2014

Perry, those who take medical advice from Dr. Oz and celebrity magazines, and consider medical advice from physicians a grand patriarchal conspiracy, are doomed to be confused.

Guest
Perry
Dec 19, 2014

Such is the conundrum of practicing modern medicine.

Guest
John
Dec 19, 2014

It is important for women to understand that the harms of mastectomies include death because all traditional cancer treatments increase the risk of cancer, many of which are metastatic killing the patient (see “The Mammogram Myth” by Rolf Hefti – more at TheMammogramMyth dot com).

Despite that it had been recognized that DCIS is often a benign lesion the highly profitable medical business has been systematically treated it aggressively, having caused the unnecessary death of millions of healthy women. It’s a crime of enormous proportion.

Guest
anonymous
Dec 19, 2014

Great! Another conspiracy nut!

Guest
Saurabh Jha
Dec 19, 2014

“i work in mammo. ask any female mammo radiologist what they would in this situation. Answer: bilateral mastectomy.”

An interesting line of inquiry would be to ask why female radiologists (allegedly) would recommend bilateral mastectomies for DCIS for themselves.

What is the scientific and philosophical basis of this advice?

I don’t think it’s fee for service or defensive medicine that drives this. What does?

The whole mammography debate has focused too much on outcomes and not enough on patient preferences.

Guest
anonymous
Dec 19, 2014

its got nothing to do with defensive medicine or fee for service! How stupid to think that! Its got to do with moving on with life. Do you want to spend your time getting mammo’s/ultrasounds/MRI’s every six months? When you are called back for additional views, will you panic and worry that the cancers returned? During the biopsy (that will come back as fat necrosis), will you feel that the decision to have a lumpectomy was a mistake? The emotional toll that takes on a patient is overwhelming (as evident by the post by “DCIS survivor”. And not just on the patient but their entire family.

What Oncs and surgeons dont get is that some patients dont want a lumpectomy followed by an wider excision followed by another wider excision. Then radiation, etc,etc. Some patient just want it over and to get back to life without cancer. Without the worry that it may (or when it will) return. Patients dont want to 2nd guess.

Most patients dont realize that for the margins of a surgical specimen to be considered negative, the cancer needs to stop 2 mm (that is mm) from the surgical margin. Dont know about you, but that is not a risk Im willing to take.

I cant tell you what each radiologists personal reason is for their decision, but what I can tell you is that I have yet to meet a female radiologist who would have a lumpectomy. I can also tell you everyone I know who has had a lumpectomy has told me (if the had to do it again) they would get the bilateral mastectomy. Its not worth the emotional toll.

I hope Im never faced with it but if that day comes, I know what my decision will be… bilateral mastectomy, no question about it!

Guest
Saurabh Jha
Dec 19, 2014

“Its got nothing to do with defensive medicine or fee for service! How stupid to think that!”

I’m glad you agree with my statement:

“I don’t think it’s fee for service or defensive medicine that drives this.”

Incidentally, should we have our colons removed so not to worry about colorectal cancer? How about removing both lungs in a patient with lung nodule so that she does not have to be bothered with three monthly CAT scans?

Whilst we are there, can we recommend frontal lobotomies prophylactically for astrocytomas?

This is the logical conclusion of the type of medicine you are endorsing.

You see, it’s never a good idea bringing sentimentality to a scientific debate.

Guest
anonymous
Dec 19, 2014

well, you (as I) are entitled to your opinion. But I would be my last buck that when this happens to your wife, you will take a completely different perspective on tihis.

Ask your wife what she is most terrified of. It wont be colon cancer or a heart attack. It will be breast cancer. Women are programmed to fear every aspect of breast cancer. every day, we pick up magazines with breast cancer all over the cover, commercials on tv blast us; we’re constantly bombarded with celebrities fighting breast cancer all over the news monthly if not weekly. The newpaper articles you skip over on your way to the sports page, women clip out and post on their refrigerator.

To trivialize this issue doesnt do anyone any good, esp coming from a man. All Im saying the lumpectomy-mastectomy issue is a deeply personal and complex issue and, I for one, am sick of some male trying to push his perspective off on the rest of the female population.

Being male, you just dont get it.

Guest
Saurabh Jha
Dec 19, 2014

“There are times when I would welcome a frontal lobotomy.”

Ha! Perry, reading much of what is in the press these days is enough to create a lobotomy, de facto!

Guest
Saurabh Jha
Dec 19, 2014

I think you implicitly agree that prophylactic removal of an organ to reduce the chances of cancer is not good medicine.

You’d also struggle to disagree that removing an organ for the sole sake of reducing anxiety that a fear of having cancer in that organ is not good medicine. That is if someone feared testicular cancer so much that he demanded that both his testicles be surgically excised, you would not think highly of a surgeon who profited from this venture.

Which begs this question. What is the evidence/ data upon which bilateral mastectomies for DCIS is being endorsed?

You do realize that more women die from lung cancer than breast cancer.

Cancer, remarkably, does not play silly gender identity games that you may like us to indulge.

Guest
Perry
Dec 19, 2014

” Women are programmed to fear every aspect of breast cancer. every day, we pick up magazines with breast cancer all over the cover, commercials on tv blast us; we’re constantly bombarded with celebrities fighting breast cancer all over the news monthly if not weekly. The newpaper articles you skip over on your way to the sports page, women clip out and post on their refrigerator.”

She has a very good point here. Also, while there are some very real consequences to total bilateral mastectomies, women can live without thier breasts.
There are times when I would welcome a frontal lobotomy.

Guest
Dec 19, 2014

2011 DCIS DX I requested a bi lateral mastectomy due to abnormalities in my left breast and DCIS in the right stage II. Answer: I was over reacting. 8 Chemo Sessions,6 weeks of radiation and a DIEP flap that looks hideous I am told I now need a MRI and a Mammo on the left breast annually due to the 2011 abnormalities! Not to mention finding a plastic surgeon to fix my breasts to gain symmetry because my 2nd “symmetry” surgery the doctor FAILED to finish the procedure & injured my right shoulder. I have insurance: $2500.00 deductible plus $500 for the O.R. and no money to pay for even more corrective surgery & I have no desire to go back to the same doctors. I can’t even consider going on Disability on top to the deductibles and time missed from work!

My plan? Screw the MRI and when they find cancer in the left breast where the 2011 abnormalities were in the left breast? I’m going to sue someone for malpractice. I’m finished being a lab rat. The “new me” is about 50% of what I used to be and mentally I am destroyed.

Ladies if you want both cut off ? I’d be the first to say do it. The mental anxiety of walking around with a time bomb on my chest because my oncologists, breast surgeon and plastic surgeon decided what was ‘est form me was the wrong decision. If I have a reoccurrence I know I will be disabled for life if I have to repeat the Chemo and radiation.

Guest
Irene
Dec 18, 2014

“Benefit: There is none. No women with DCIS have been included in a randomized controlled trial.”

Minor point of order: If the second statement is true, you can’t assert the first statement with confidence.

But otherwise, this is a valuable post.

Guest
William Palmer MD
Dec 18, 2014

i agree with MCNUTT. But have path lab give you a block of your tissue or tell them to save yours safely–by certified letter. Save it until Genome Wide Association Studies find stronger coorelates between the genome of such tumors and metastasis [or survival, recurrence.] You’ll read about this in the papers in a few years. Then, have your tissue block studied by going back to the path lab and asking where to send it. Ask them to pay for this as it “completes the examination”. [ This is a tad whimsical but I would try it.]. This might be difficult for the insurer to refuse if these genetic tests become routine by then.

We are learning that the histology ( eg DCIS) is not as good in determining the ‘personality’ of the malignancy as is the genome of the worst part of the tumor. Of course, your paraffin block may not be from the most aggressive part of the tumor nor was it necessarily taken at the proper time, but we are not gods here and it’s the best we can do in this scenario.

And if you do have a recurrence, you will probably use that tissue as well for a latest prognosis. But DCISs do very well. Don’t fret. Read MCNUTT again.

Guest
anonymous
Dec 18, 2014

i work in mammo. ask any female mammo radiologist what they would in this situation. Answer: bilateral mastectomy.

Guest
Saurabh Jha
Dec 18, 2014

I wonder if bilateral mastectomies increase the risk of worrying about colorectal cancer.

Good post.

I think this is the end result of medicine that is neither sufficiently paternalistic nor sufficiently patient-centered.