Changing the DCIS approach.

Midmissourimom · October 2010

Has anyone been given a diagnosis of DCIS and not had any kind of treatment? At this point, I have. It has been a year since my diagnosis and surgery. Scared by the "C" word, I rushed into surgery not knowing all the controversey surrounding DCIS. Yes, I have had a lumpectomy, only to be told by the surgeon had he had taken the completely wrong part of my breast and the surgical marker was still there. Since that time I have seen 6 doctors, had an MRI and had my pathology report read 3 times. All of the doctors have differing opinions. The only thing thing they agree upon is that the "standard procedure of care" for DCIS is surgery and radiation. Everything from a small lumpectomy to a bilateral mastectomy has been recommended. How can that be? At this point, it is NON-invasive. Why would you cut off a part of your body, just in case, it may or may not turn invasive. Has the invasive breast cancer statistics dropped since DCIS has started to be treated? We have to be our own advocate for our healthcare and maybe the "standard procedure of care" should be changed to reflect the individual case.

Beesie · October 2010

DCIS is a complicated disease. And it is a heterogeneous disease - there are lots of different diagnoses that make up DCIS. Some may be very low risk; others are very high risk. Much of what you read in the press about DCIS and the controversy over DCIS treatments relates specifically to those low risk types of diagnoses, i.e. women who have a very small single focus of low grade DCIS. There's no question that some of the current treatment approaches may result in over-treatment for some of the women who have this type of diagnosis. With this type of diagnosis, surgery alone might be sufficient. In the future, maybe surgery won't be necessary; perhaps only hormone therapy will be required for someone with that diagnosis, or perhaps only targetted radiation.

But then there are those who are diagnosed with large amounts of multi-focal or multi-centric grade 3 DCIS with comedonecrosis. With that type of diagnosis, there is a possibility that some invasive cancer might already exist within the areas of DCIS; what looks like DCIS might actually already be invasive cancer. That's what happened in my case - I had a microinvasion of invasive cancer. For those who don't have a microinvasion, there is a high risk that this type of DCIS will turn invasive within the short-term. Therefore to not remove all the DCIS in cases like these puts the patient at very high risk. And in cases like these, often the DCIS is so widespread that the only way to remove all of it is with a mastectomy. I would gladly have avoided having a mastectomy but both surgeons I spoke to explained to me that a mastectomy was medically necessary in my case.

A bilateral mastectomy is a different question. Invasive breast cancer rarely moves from one breast to the other and DCIS simply cannot move to or recur in the contralateral breast. So a bilateral mastectomy is never medically necessary for anyone who had DCIS. Some women choose to have bilaterals because they are high risk to be diagnosed with BC again; other women choose to have a bilateral for peace of mind. Those are personal choices, but that is different than a doctor suggesting that a bilateral "should be done" or "is necessary" for someone diagnosed with BC. No doctor should say that.

DCIS is controversial. In the eyes of the medical community, there are women who overtreat their DCIS. It is unfortunate when someone is overtreated, particularly if there are negative side effects to the treatments. I hope that in future medical science is better able to identify which cases of DCIS are low risk so that fewer women with this type of diagnosis overtreat their DCIS. But here's what's also true. Upon reading all the garbage in the press that downplays the potential seriousness of DCIS, today there are women who undertreat their DCIS. It is also unfortunate when someone is undertreated, but more than just being unfortunate, this decision can be life-threatenting. An aggressive case of DCIS that is undertreated can lead to the development of an invasive cancer, and we have to hope that the invasive cancer is found before any cancer cells have escaped the breast and develop into mets.

Given where we are today with the scientific knowledge about DCIS - which is that we don't know enough about which cases will become invasive quickly and which cases won't - personally I think it's better to err on the side of overtreating rather than undertreating. For the most part, that seems to be where the medical community stands too.

SJW1 · October 2010

Missouri Mom,

Many textbooks now also include surgery alone as one of the options available to DCIS patients.

When I was diagnosed with DCIS in 2007, I had much the same reaction you are having now. I felt pressured to do way more than I wanted to do for a non-invasive cancer. I too had a lumpectomy only to be told they didn't get good margins. However, I wanted to save a mastectomy and radiation (since you can only do both once) for any possible future invasive cancers.

I consulted with Dr. Michael Lagios, a world renowned DCIS expert and pathologist, who has a consulting service that any one can use. He ended up disagreeing with my local pathologists and said I did get good margins. He also used the Van Nuys Prognostic Index to calculate my risk of recurrence at only 4 percent. Because of that, the approximately 50 percent reduction in risk that radiation provides would have only been a 2 percent gain for me. He also advised me that tamoxifen would at best reduce my risk by an additional 2 percent.

Because of this my prevention program now includes taking DIM, hormone balancing, exercise, a vegan diet and several supplements. For me this seems like a more appropriate approach with fewer side effects.

So as you can see as you compare Beesie's post to mine, we are at opposite ends of the spectrum in our approach to our DCIS. Both are appropriate, depending on factors like the size and grade of your DCIS, your margin status, your age and your risk tolerance.

What you do is a very personal decision. The good news is that because DCIS is non-invasive, you can take your time in deciding what your next step will be.

Please feel free to send me a PM if you would like to discuss any of this further or check out my website at: https://sites.google.com/site/dciswithoutrads/home

Wishing you the best in whatever you decide,

Sandie

Laurie08 · October 2010

ok- let me start by saying Beesie is the guru on this. A very smart lady, so listen to her. Now I will throw in my 2 cents.

I look at it like this. The Dr.'s don't know what they are talking about, they will change thier mind tomorrow on what the course of treatment is. If there is the start of something evil, like cancer, wouldn't you want to eradicate it? If you hesitate with your answer, could you be too late? I watched my mother die from BC. We all have our fears. Some are afraid of spiders, or maybe the dark, I am afraid of breast cancer. I have watched what it can do to a person, to a family. I know my thoughts are extreme because of this, I don't want to scare you, or anyone. But we need to be afraid sometimes if it means prevention. A life is more important than a breast (s). Does the surgery suck? Yes. It's not easy but I believe it is worth it.

Sometimes nothing turns into something when your not looking. Better to be aware and proactive so the door doesn't hit you in the ass.

Sorry if I am being to tough about this....

Kitchenwitch · October 2010

DCIS is a frustrating disease. The imaging (at least from my own experience) seems to border on worthless. I've heard that high-grade DCIS "lights up like a Christmas tree" on an MRI. I had an MRI, unfortunately after a lumpectomy and re-excision, and it showed nothing. I've had several mammograms since the surgeries. Nothing shows. However the path reports seem to indicate close margins and scattered microscopic bits of DCIS.

I am very bitter about having three surgeries (and who's to say it will stop at the three) for something that they cannot quite see in advance?

I believe that every doctor takes the cautious approach, and I don't blame them. Not one of them wants to see a patient return in a few years or within a decade with metastatic cancer. And I don't want to be that patient, so I'm going to follow whatever treatments are recommended.

But I believe that things are going to change - they'll be able to type lesions and predict with much more certainty whose DCIS is more worriesome; what types of DCIS mean; and I think there will be at some point treatments that are less burdensome.

If I had a wish list for DCIS (and for breast cancer in general) it would include much more accurate imaging. More alternatives to shrinking and eradicating lesions than exist now. (Women on this board with more advanced stages of breast cancer shrank their tumors with neoadjuvant therapy, and went from needing mastectomy to needing only lumpectomy).

I'd like to see a corresponding drop in breast cancer mortality - one that really meant that the successful treatment of DCIS was decreasing cases of more-advanced breast cancer.

I'd like to see more standards of care in DCIS. I know everyone's a bit different, but a tiny spot of grade 1 DCIS ought to be handled differently from a larger amount of grade 3 DCIS. Some women seem to have their tumors tested for HER2/NEU; some don't. I feel all hospitals should be testing the hell out of DCIS lesions for whatever protein expressions or whatever they can, to find out as much as they possibly can about this condition.

I had my first two surgeries at a well-known and very good teaching hospital in NYC; the co-pays on the pathology were pretty stiff, but all they did was cut slides and test for ER/PR and nothing else.

Sorry for rambling - my main feeling DCIS and its current treatment is anger.

I appreciate all Beesie's research and careful contributions. I appreciate everyone sharing their experiences.

I guess I hope that one day a mastectomy for DCIS is viewed the same way we now view a Halsted radical mastectomy for more advanced cancer: something that they used to do, but is now almost never, ever done because more humane and less extreme approaches exist and are perfectly appropriate.

speech529 · October 2010

Very good discussion here. Bottom line....DCIS is a tough diagnosis and the treatment should be tailored to the individual patient, not only on the statistical information out there.

I asked my oncologist recently if he thought it was okay to just wait and see with DCIS. He did not agree with that idea on an indefinite basis. DCIS has to be treated. I would have loved to have had the initial lumpectomy and then be done with it--no more treatment necessary. That's what my BS thought was going to happen, but that's not how it turned out for me.

Has anyone besides swalters had a lumpectomy (w/o rads) only and follow up with diet, exercise and chemoprevention?

As my BS said to me, "how much risk are you willing to live with?"

Best wishes to all.

MarieKelly · October 2010

I had no treatment other than a lumpectomy, but I didn't just have DCIS - also had IDC mixed with it in a single tumor (60% IDC/40% DCIS) and both of those components were grade 1. Dx shortly after 49th B-day and already in menopause. I flat out refused everything but the lumpectomy and insisted that no more than 3 nodes be removed in the SNB procedure no matter what was found. I haven't changed anything about my lifestyle either, so I'm not doing anything different in the way of diet, exercise or supplements.

It's over 6 and a half years and counting for me so apparently it's not just pure DCIS that can sometimes get away with no adjuvant treatment. Without a doubt, surgery is the number 1 most poweful tool against localized breast cancer and I don't think there will every be an "official" recommendation to skip it.

brazos58 · October 2010

I had DCIS ComedoNecrosis Grade 3 and Atypical Lobular Hyperplasia on the right. BMX in 6/10.

r lumpectomy with wire localization 5/10. sterotactic core bx 5/10. Watched every 6 months since 2/08 s/p microcalcifications on r / benign sterotactic needle bx. I just could not deal with the swinging sword. I said NO to Rads or Recon.

(( All))

louishenry · October 2010

I had a biopsy for a 4mm or so cluster of calcs in May of 07. In that 4mm of calcs was about 2mm of lower grade DCIS. I proceeded to have a lumpectomy that had no residual disease as the biopsy removed it all.

I then went to a Oncologist and met with 2 rad oncs. The radiation docs did not recommend radiation. The Oncologist left tamoxifen up to me. My criteria fit the profile of no rads. I had a small amount of low grade DCIS with no necrosis and with obvious large margins.

I was still a little unsure so I also had a consult with Michael Lagios. He did not recommend rads or tamoxifen. I was not comfortable with skipping both. Tamoxifen was not great in the beginning. It caused my already large fibroids to grow . I had plans for a total hysterectomy on the back burner anyway, so I had that surgery in Nov of 08. No more giant fibroids and massive bleeding.

It has been a ride. Things have really settled down, though. I have terrible hot flashes in the summer, but not so much now. That has been my main complaint. I have an annual mammo/us and rotate with an MRI.

My Onc said that maybe someday someone with my pathology may not even need surgery, just possibly tamoxifen. But for now, surgery, radiation for most cases, and tamox is really standard.

I agree with the above poster. I am not stats minded, but one would think that with all the DCIS being found every year, that we would have that many less invasive events. But it doesnt seem that that is happening. We have been hovering around 200,000 cases of invasive and sadly, 40,000 deaths in the U.S. for several years now.

I was willing to do rads, but I am happy that it worked out this way for me. However, I personally could not have watched and waited if I had a bunch of DCIS that was grade 3. Margins are very important, but I read once that they really do not trump a high grade, necrotic path.

Good Luck to us all. I only hope that this event that we all share is just a blip in our lives, just a bump in the road, as they say!!

louishenry · October 2010

I had a biopsy for a 4mm or so cluster of calcs in May of 07. In that 4mm of calcs was about 2mm of lower grade DCIS. I proceeded to have a lumpectomy that no residual disease as the biopsy removed it all.