Past post from Beesie on understanding DCIS

Beesie is a wealth of information.  Thanks mom2two for putting this together for the newbies and the rest of us.

Gentle Hugs,

Trish 

I so glad I found this.  I am a newbie.  Thank you Bessie and all other who put this together.  I was recently diagnosed with DCIS w comedo necrosis.  I am having as lumpectomy on 2-5-09.

This is an excellent post- thank you so much!

Another heartfelt 'Thank You' to Beesie for her compilation of facts/figures about DCIS.

Just coincindentally I came across this recent article about DCIS and radiation treatment.  Here is the article:

Release Date: January 20, 2009, 7:01 PM US Eastern time

Radiation Lowers Relapse Risk in Noninvasive Breast Cancer

By Katherine Kahn, Contributing Writer
Health Behavior News Service

A new review confirms that the addition of radiation therapy to lumpectomy in the treatment of ductal carcinoma in situ (DCIS), a noninvasive early form of breast cancer, substantially decreases the risk of recurrence of either DCIS or invasive breast cancer in the affected breast.

In addition, there appear to be no long-term side effects from the radiation, such as damage to the heart or lungs.

Co-author Dr. Annabel Goodwin and colleagues from the Westmead Hospital in Australia and the University of Sydney looked at recent studies that evaluated the addition of radiation therapy after lumpectomy in the treatment of DCIS.

"We wanted to assess whether breast conserving surgery followed by radiotherapy is better than breast conserving surgery alone," Goodwin said. "We also wanted to investigate if there was any short- or long-term toxicity from the use of radiotherapy to determine the balance between benefit and harm."

The review appears in the latest issue of The Cochrane Library, a publication of The Cochrane Collaboration, an international organization that evaluates medical research. Systematic reviews draw evidence-based conclusions about medical practice after considering both the content and quality of existing medical trials on a topic.

The researchers identified four high-quality studies that compared breast-conserving surgery with or without radiation therapy in patients with DCIS. The review included data from 3,925 women.

DCIS is different from invasive breast cancer in that abnormal, precancerous cells form within the milk duct of the breast but do not spread to other parts of the breast. If treated, it is usually curable. However, if left untreated, it substantially increases a woman's chance of developing invasive breast cancer.

Women usually cannot feel a lump in the breast with DCIS usually cannot be felt as a lump in the breast, but a mammogram can often detect it. Breast-conserving surgery - where only the affected part of the breast is removed - followed by radiation, is successful for most.

The reviewers found that the addition of radiation therapy after breast conserving surgery decreases the risk of recurrence of either DCIS or invasive breast cancer in the treated breast by 51 percent.

"This means that for every nine women having breast-conserving surgery [for DCIS], if they all had radiotherapy, one woman would be spared from having a local recurrence of her breast cancer because of the radiotherapy," Goodwin said. She added that the results of two included studies suggested that women over 50 had a greater benefit from the addition of radiotherapy than younger women did.

The researchers found no evidence of increased long-term toxicity from the radiation treatment. "Newer techniques of radiation therapy reduce the dose of radiation to the surrounding normal tissues such as the lungs and heart," Goodwin said. "This is likely to reduce the potential long term side effects, but longer term follow up of patients in these studies is needed to confirm this."

Surgical oncologist and breast cancer expert Monica Morrow, M.D., from the Memorial Sloan-Kettering Cancer Center, said that the review confirms what most physicians currently recommend for their patients with DCIS who opt for breast-conserving treatment. "The best way to minimize the chance of recurrence is with radiation," she said.

Survival rates - the percentage of women who are alive after a certain period after diagnosis - are excellent for women with DCIS, no matter whether they choose mastectomy or breast-conserving therapy. In patients who have breast-conserving therapy with or without radiation therapy, survival rates range from 90 percent to 99 percent at 10 years.

Doctors overwhelmingly favor breast-conserving therapy for DCIS, Morrow said. However, many women in the United States choose more aggressive treatment with mastectomy.

"Studies show that the bigger the patient's role in decision-making, the greater the likelihood the patient will end up with mastectomy," she said. "This is because most patients don't distinguish between DCIS and invasive breast cancer, because a lot of the stuff they find on the Internet is written about invasive cancer."

While it is true that the risk of having a recurrence of breast cancer after a mastectomy is lower than after breast conserving therapy in DCIS, Morrow said there is not much difference in survival rates. "What I tend to emphasize to my patients with DCIS is that no matter which treatment they choose, their risk over the next 15 years of dying of something else is greater than their risk of dying of breast cancer. In the end the difference of survival, if there is any, is on the order of a percent or two."

# # #


FOR MORE INFORMATION:
Health Behavior News Service: hbns-editor@cfah.org or (202) 387-2829

Goodwin A, et al. Post-operative radiotherapy for ductal carcinoma in situ of the breast. Cochrane Database of Systematic Reviews 2009, Issue 1.

The Cochrane Collaboration is an international nonprofit, independent organization that produces and disseminates systematic reviews of health care interventions and promotes the search for evidence in the form of clinical trials and other studies of interventions. Visit http://www.cochrane.org for more information. 

Oh Robby, you responded so well! I was fuming reading that about how we don't know our ass from a hole in the ground. I have always asked my surgeons what they would do if I was their mother and boy, have I ever gotten different answers! I believe, believe, that a lot of doctors think we will fall down and die if we lose our breasts and are afraid to suggest it. I would far rather do it on my terms, than be told I have to do it NOW to save my life. At that point, I would have a harder time to recover and a more invasive situation to deal with!

She also doesn't mention that even though DCIS may not return (which it does sometimes) other cancers DO! And then there is the OTHER breast to deal with. She probably had a grant she had to back up on this one. I can see all the men on the board of directors nodding their heads and seeing us all saving our breasts from the knife. 

My surgeon also told me that I did what he would have done in my shoes. 

Maybe Dr. Morrow is the kind of woman that cries when she gets a bad haircut. 

Dr. Morrow is speaking as an expert on breast cancer, a doctor who has likely seen thousands of patients.  I for one understand what Dr. Morrow is saying and based on what I've seen, I think what she says is correct.  In my time on this board, I've seen lots of women who don't really understand the difference between DCIS and IDC.  When we are diagnosed, most of us start knowing nothing about DCIS - we're not doctors after all, and DCIS is difficult to understand, seeing as it's non-invasive in it's current state but comes with a risk of invasiveness at come undefined point in the future.  Just a little confusing.

On this board we often talk about how complex DCIS is and how important it is that those who are diagnosed not underestimate the seriousness of DCIS but at the same time there is also a concern that women shouldn't overestimate the risk from DCIS either.  I'm not a doctor and I don't have the experience that Dr. Morrow does, but from 3 years on this board my observation is that without question, more women overestimate the risk from DCIS than underestimate it.   

While you may not agree with what Dr. Morrow says because it differs from your own personal experience, keep in mind that Dr. Morrow was talking in general about how women react to DCIS - she was not talking about how any one of us individually have reacted.  So the fact that you may completely understand DCIS and may have made your decision to have a bilateral with a full, complete and realistic understanding of all the risks and downsides does not mean that this is true of everyone who makes the same decision.  As a doctor at Sloan Kettering, Dr. Morrow has no doubt seen thousands of women with DCIS and her comments are based on that. The fact that any one of us may not fit into her description does not mean that what she said is incorrect.

The fact is that studies have shown that the survival rate is the same whether one has a lumpectomy + radiation or a mastectomy.  The fact is that studies have shown that having a prophylactic mastectomy does not increase survival rates.  Having a bilateral may very well be the exactly right decision for any one individual, based on her own personal risk level and her own ability and/or willingness to live with this risk.   There are certainly valid reasons for someone with DCIS to have a bilateral.  But what Dr. Morrow is saying is that those reasons are not strictly medical based on the DCIS diagnosis alone.  That's a fact.  

Please remember that DCIS often "hides" other cancers as well. That often the second breast is found to have cancer. That some women can't afford the physical, emotinal or financial stress of on-going treatments like rads, chemo or constant drugs.

That some women want to stop it now and not dread the next mammo.

This is a very hot topic. God bless to all.

I didnt like The Dr & Her remarks either.

I think there are alot more women out there who research & are informed then she seems to think.

Also I did not want Radiation...if I would have listened to my Surgeon & gone with his treatment I would have unwillingly had Radiation- Because he said I had to have it.   he did not offer me any other options- I came up with them on my own.

And this I pulled out from the research Article:

A new review confirms that the addition of radiation therapy to lumpectomy in the treatment of ductal carcinoma in situ (DCIS), a noninvasive early form of breast cancer, substantially decreases the risk of recurrence of either DCIS or invasive breast cancer in the affected breast.
  The reviewers found that the addition of radiation therapy after breast conserving surgery decreases the risk of recurrence of either DCIS or invasive breast cancer in the treated breast by 51 percent.

"This means that for every nine women having breast-conserving surgery [for DCIS], if they all had radiotherapy, one woman would be spared from having a local recurrence of her breast cancer because of the radiotherapy," Goodwin said. She added that the results of two included studies suggested that women over 50 had a greater benefit from the addition of radiotherapy than younger women did.

 ~~~

I dont see where 1 in 9 women is 51% reduction per woman... or a Substantial decrease in # of recurances.  As the Article States.

Pam

The way I look at it for me.

Is the less breast tissue the less chance of having a recurrance.  With a Bilateral I was also reducing my Chance of getting BC in my good side.  Yes, I do know there is a good chance I would never get it.  That wasnt good enough odds for me.

I also know that after my BLM I had ADH found.  I did not want to give any cells a chance to grow into an Invasive cancer.

There are probably medical reasons not to have a MX.   Just physically Im sure there are valid reasons.  But then my SNB caused me lots of pain & Restriction of Movement with my Arm (more so then my BLM)  And an SNB is almost never not recommended.   Even my BS wanted to do an SNB on my good side.  I said- No Way.

Pam

My decision for a double mast had to go before a tumour board before my surgeon was allowed to perform it. I'm sure you guys have something like that in the states. They approved my decision. That was good enough for me. I'm sure they would have stopped my surgeon if they thought in inappropriate. They actually validated me.

I read somewhere that when left to decide on their own, 29% of women chose mastectomy. I chose a double for the reasons I've already stated and that now my chest is symetrical and not lop-sided as it would be with a uni without reconstruction. I would personally have a tough timing dealing with that, I know.

My tumour was at 6 o-clock on my left breast, right over my heart. Even my surgeon was quick to point out that I may compromise (my already compromised) heart if I chose radiation. Now I am hearing of those with lung issues as well!

Cathi my heart goes out to you. I've been reading your posts. Are you still using the O2 or only as needed? Sexy is definitely defined by attitude, as your signature line reads.

Trish, I thought Cathi brought up a very valid point as drs don't stress the long-term effects of radiation and it looks like more women tend to focus on the breast/no breast issue, not the big picture.

I was not offended in any way whatsoever.  There was a thread in the radiation therapy forum that got totally out of hand - I just wanted to keep that from happening here.  All points are valid and that being said - I'm dropping it. 

Gentle Hugs to ALL,

Trish

Ugh, I've got to talk a bit more about radiation.  It seems like radiation can be  crucial if one chooses lumpectomy for DCIS and wishes to create an equivalent situation to MX re life expectancy.  So one can't really consider a lumpectomy compared to MX without considering the potential side effects of radiation (unless perhaps one is fortunate to have a really large margin -- I read somewhere that 10 mm is claimed to allow one to avoid radiation). Interestingly, when I visited Sloan Kettering (Dr. Morrows hospital) I was told that their method of prone radiation avoided some of the side effects of radiation. Had I chosen the lumpectomy/radiation route I would have tried to go to Sloan Kettering for the radiation.

Pam, to your question:

"This means that for every nine women having breast-conserving surgery [for DCIS], if they all had radiotherapy, one woman would be spared from having a local recurrence of her breast cancer because of the radiotherapy..."   I dont see where 1 in 9 women is 51% reduction per woman... or a Substantial decrease in # of recurances.  As the Article States.

Here's my understanding of what was being said:  The 51% reduction in recurrence is based on the fact that out of 9 women with DCIS who have a lumpectomy, on average 2 will have recurrence (assuming no other treatments).  That's a 22% recurrence rate.  However if all 9 women are given radiation following their lumpectomies, only 1 will have a recurrence.  That's an 11% recurrence rate.  And that's the 50% reduction in recurrence (the numbers are obviously rounded somewhere since the real reduction is 51%). 

In the U.S. it's estimated that there will be approx. 60,000 new cases of DCIS this year; in Canada, there will probably be about 6,000.   Some of these women aren't eligible for lumpectomies (my case, for example) and other women choose to have a mastectomy, so let's say that 60% of the 66,000 women diagnosed with DCIS in a single year in North America have lumpectomies.  Without radiation, 8,712 will have a recurrence.  With radiation, 4,356 will have a recurrence.  That's a pretty significant reduction, and that's why radiation is usually recommended whenever someone has a lumpectomy for DCIS.  By the way, although this isn't mentioned in the article, if we assume that 80% of the DCIS cases are ER+ and if all the ER+ women who have lumpectomies (plus radiation) also take Tamoxifen, the number of recurrences will be dropped to 2,265.  This takes the recurrence rate down to 5.7%, which is considerably less than the risk that most of us started out with before we were ever diagnosed with breast cancer and is about 1/2 of the risk of the average North American woman. 

I respect that there are many women who choose to have bilateral mastectomies after a diagnosis of DCIS, for any number of personal reasons.  If someone has done their homework, understands the pros and cons of a lumpectomy vs. mastectomy, understands their true risk levels (i.e. got the information from their oncologist), understands the short term and long term effects of both choices (including the long term effects of radiation and the long term effects of reconstruction if she chooses reconstruction), and considers the emotional effects of both choices (living with fear of recurrence, living without natural breasts & sensation, etc.), then whatever decision is made is hopefully the "right" decision for that individual woman.  A mastectomy or a bilateral mastectomy is absolutely the "right" decision for many women.  But this does not mean that it was medically necessary (and that's the crux of the original article that started this whole debate).  And similarly, a lumpectomy is absolutely the "right" decision for many other women. 

What concerns me in some of the posts in this thread is an implication that a mastectomy or bilateral is a better decision than a lumpectomy.  It's not.  It's a perfectly valid decision, but a lumpectomy + radiation + Tamoxifen is also a perfectly valid decision.  Personally, I had a single mastectomy, although not by choice (I had too much DCIS in too small of a breast).  For me, a bilateral most certainly would not have been the right decision and if I'd had a choice, in all likelihood I would have happily opted for a lumpectomy + radiation + Tamoxifen.  This is such a personal and sensitive issue and I worry if we try to direct or subtly pressure women into one choice vs. the other.  Let's accept that both choices are good choices and let's support women in whatever option they choose.   There is no benefit in making someone worry or feel bad because she decided on an option that you personally didn't feel was "right" for you.