In the Oct 2015 issue of TIME Magazine, Dr. Shelley Hwang, chief of breast surgery at Duke Medical Center, and some of her patients are featured in a story along with a short must-watch video titled: Choosing to Wait: A New Approach to Treating Breast Cancer at It’s Earliest Stages.
The article states, “Dr. Shelley Hwang is one of a growing number of breast cancer experts in the U.S. who support Active Surveillance as a form of treatment for patients with low risk DCIS.” This new approach is “a paradigm shift in breast cancer treatment,” with a small but influential group of experts calling for a major shift in the way doctors treat and talk about different types of DCIS. The article continues, “Evidence is mounting that aggressive treatments, designed in earnest to save women’s lives, can have unforeseen and sometimes devastating consequences. It’s the multiple follow-up surgeries after a mastectomy and the subsequent infections; the radiation that doesn’t always improve survival and the cancer risk that can come with too much of it; the sometimes unnecessary chemotherapy and its life-sapping side effects. For some in the field, that collateral damage is getting harder and harder to justify.”
And then there is the extreme anxiety created by a DCIS diagnosis. For many women it can turn their lives upside down overnight — and this anxiety can be on-going. Too often women diagnosed with DCIS are offered aggressive treatments and psychiatric drugs, rather than counseling, support and life-style therapies.
Why are most women diagnosed with DCIS still not offered active surveillance or “watchful waiting” as a treatment option? Women are generally told “No one knows for sure which DCIS cases will go on to progress to invasive cancer. So the “standard of care” is to treat everyone with any type, size or grade of DCIS the same — as if it is invasive cancer. It’s a “one size fits all” approach that is harming thousands and thousands of women.
Thankfully, there are now three studies — COMET in the US — LORIS in the UK — and LORD in the Netherlands — comparing Active Surveillance to immediate surgery.
These studies, many experts agree are long overdue.
THE CASE FOR THE SURVEILLANCE OPTION
“Esserman is among the most outspoken of the voices for change. She and similarly minded breast-cancer specialists such as Hwang believe that it’s time to seriously look into what’s known as management by active surveillance. For DCIS, any lesion that doesn’t appear high grade would be left alone and not biopsied. Instead, if suspicious calcifications were discovered in mammography screening, patients would be given the option of forgoing treatment while doctors monitor them intensely to see what develops. This strategy is already used in treating low-risk prostate-cancer patients, who do not undergo surgery or radiation unless the lesion progresses to a higher risk level. “With early stages of prostate cancer, there is a lot of discussion about watchful waiting and active surveillance, about how cancers come in different types and how the patient has lots of options,” says Barron Lerner, MD, internist and medical historian at Columbia University Medical Center. “For DCIS, the conversation hasn’t moved so much in that direction.” And, he says, “to the degree that breast-cancer specialists consider close surveillance a reasonable option, women should be made aware of this choice.” – MORE Magazine, Sept 2011
The Sea of Uncertainty Surrounding Ductal CarcinomaIn Situ — The Price of Screening Mammography, 2008 JNCI editorial, H. Gilbert Welch states:
“More than 50,000 American women are diagnosed in this gray zone each year. Virtually all get some surgery. It’s time to figure out whether they really need surgery or whether all they really need is repeat mammography (or magnetic resonance imaging). In other words, should they be treated for breast cancer or should they be managed as individuals with an elevated risk for the disease? Because the prognosis for women who are treated for early-stage breast cancer is so good, it’s reasonable to test a strategy of active surveillance for DCIS. Active surveillance could help women whose DCIS does not progress avoid treatment and allow those whose DCIS does progress to invasive cancer be diagnosed and treated when the prognosis is still extremely favorable.”
A mathematical model developed by Duke researchers “suggests that active surveillance may be a rational trade-off for carefully selected patients with DCIS.”
So how do women best monitor calcifications, DCIS and/or close margins? Mammograms every 6 months? Alternate between mammograms and MRI? Thermography? Ultrasound? For a complete overview of imaging modalities, please click on imaging and monitoring.
Thank you. The doc told me immediate MRI surgery and 7 weeks of radiation I pulled my report and tissue samples and doing research found I had a low grade stage 0 Dcis and now know I can employ watchful waiting. Thank you for the info. I know of women wit Dcis who have had double mastectomies! Thanks Again.
Dear LitLady1, did you find a doctor to support your choice of watchful waiting? I have a new diagnosis of intermediate grade stage 0 DCIS, and a lumpectomy, lus radiation and/or Tamoxifen has been recommended. Trying to find out if there are other options..
Although the most common recommendation is lumpectomy plus radiation and/or tamoxifen for DCIS, this can be over treatment for some women.
Some of the more enlightened doctors will support you if you decide to do less, providing you have good reasons for doing so.
For instance, Dr. Michael Lagios will support you if you want to omit radiation, provided your score on the Van Nuys Prognostic Index is low enough. He also does not think tamoxifen should be used for DCIS. He has a consulting service that anyone can use (http://www.breastcancerconsultdr.com/).
I consulted with him in 2007 (after I had a lumpectomy). He calculated my risk of recurrence without radiation or tamoxifen as only 4 percent. With such a low risk, it seemed reasonable to me to omit both.
The key is to know how much benefit any of these treatments will give you. Then you can intelligently decide if the benefit will outweigh the risk.
Plus there are other things you can do to reduce your risk that are virtually risk free.
Please check out our RADS page for more info re if RADS are right for you. https://dcisredefined.org/choices/rads/.
You can read more re my story at this link: http://dciswithoutrads.com/
Please also feel free to email me anytime firstname.lastname@example.org.
Don’t rush into anything. Because DCIS in non-invasive and won’t kill you, you can take your time to weigh all your options.
Wishing you all the best,
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what about high grade DCIS with an invasive component of 5 cm, but according to sentinel node biopsy, all 3 nodes checked were negative, meaning no radiation for me. I am currently undergoing neoadjuvent chemotherapy and a bilateral mastectomy is recommended post chemotherapy treatment. Thank you for your voice!
Mari Sherpa said:
Well I have DCIS stage 0 high grade 3 ER – and PR – and comedonecrotic. I want to try some alternative therapies prior to going under the knife. Does anyone know if Dr. Lagios will do analysis of the original stereotactic biopsy results or is it only after lumpectomy? Not sure I want to do this as I read an article in the Medical Literature about how surgery can knock the cancer out of it’s “dormancy” phase and get it to activate! Many women at autopsy are found to have DCIS that they NEVER had treated and it didn’t do anything. I would love to know if my original path report is even correct! Maybe I do not have all of those awful things! Thanks ladies….I would opt for active surveillance any day! Dr. Laura Esserman told me when I contacted her that I could likely opt for Lumpectomy and forego radiation….
Katharina Pachmann said:
At the age of 68 reading all these alarmed, scared and frustrated posts I am glad I never did a mammography and I think I will never take one, comparable to Katherine Langley’s mother, whom she wrote “died from an aortic aneurysm at age 80 in 1997.” One “cannot say for sure that she did not have breast cancer. Often, they saw a doctor regularly (maybe), “felt for something” themselves and skipped what they thought was too much trouble.”
Even if one day true breast cancer would be diagnosed I would not regret it, having had a long time without fears and concerns about the “right time to intervene”.
When my gynecologist told me at the age of 50 to take HRT and I refused, he told me I would regret it. I never did on the contrary; with the increase in breast cancers I was glad not to have followed his advice.
When I received the invitation to screening mammography I would not follow the invitation because at that time our research had shown that benign cells were mobilized into the blood stream during mammography of healthy subjects. What about tumor cells?
This may also be one reason why out of 928 deaths, occurring after 20 years of observation of women with DCIS in the Narod study (2015), 517 died of DCIS without experiencing an in-breast invasive cancer prior to death. Thus, the assertion that an invasive stage invariably has to precede dissemination in DCIS seems to be wrong. Rather, manipulations such as mammography and surgery might contribute to dissemination.
The reason for death of breast cancer is not the tumor in the breast but cells disseminated into the body which can survive, adhere to foreign tissue (bone lung liver) and, most importantly, start re-rowing.
A new trial now in the UK tries to determine whether surgery is necessary in DCIS or watchful waiting with yearly mammography is to be preferred.
But instead of fearfully observe changes in the breast it would be much more important to survey the behaviour of the cells in the circulation.
Indeed, that is what we can do for DCIS patients since we detect and monitor the cells shed into the blood stream and we have shown that increasing numbers ot tumor suspect cells precede distant relapse. See maintrac.com
Wendy Clarke said:
I have recently been diagnosed with 72mm Pleomorphic low grade DCIS and have been told a mastectomy is necessary.
I am currently revovering from a primary knee replacement surgery and a 2 stage revision knee replacement surgery on the same leg. The surgery starte in March 2014 then July 2015 followed by November 2015.
I dp not feel well enough to now go through immediate mastectomy and cannot have immediate reconstruction as I am having mobility and back problems.
I feel strongly that I do not have to go ahead with the Mastectomy at the present time because the DCIS is low grade but would question the size of the area and if it creates a greater risk by neing a large area.
I would much prefer watch and wait whilst I continue my recovery and strive to improve my general health and weight which has been affected by my lack of mobility.
I would appreciate your view on this matter.