Just diagnosed - trying to make sense of the research

I was diagnosed with 3cm DCIS after a  routine mammogram, nothing else was found. My surgeon did not order the MRI because of a high rate of false positives. I had two lumpectomies with no clean margins, about 9 cm DCIS was removed. MRI after the second lumpectomy  showed two other suspicious areas and high background signal for both breasts, which means that they could not see what was  going on in the breasts clearly. Had a consult  scheduled with Dr. Esserman, but was seen by Dr, Jasmine Wong at UCSF. She advised a third lumpectomy with oncoplasty+radiation  despite my previous exposure to radiation. I said I was leaning toward a double mastectomy. She  responded that a unilateral mastectomy might be a reasonable choice given that half of my breast was already removed, but a bilateral mastectomy  would be a treatment for my head, not my breasts. I had a double mastectomy, more DCIS was found around the lumpectomy site. I'm 50. I'm not a medical professional, but, from reading some testimonies and research papers by Dr. Esserman I think that at your age the DCIS is not as aggresive and fast growing as in younger patients. Also, the breasts are not as dense anymore, and imaging techniques work  better for less dense breasts. It is quite possible that your surgeon  will be able to remove all DCIS with wide margins, and you can avoid rads, but the rate of re-excision of about 30-40% sounds right. I would say that a lumpectomy is a reasonable choice if you have big breasts, and only 3 cm DCIS which can be removed with wide, about 1 cm, margins without disfiguring your breast.

 You may want to look at the Van Nuy's prognostic index that is used by oncologists on the West coast to determine if the rads are needed:

https://dcisredefined.org/dilemmas/assessing-risk/van-nuys-prognostic-index

https://dciswithoutrads.com/van-nuys-prognostic-index-2/

http://www.ncbi.nlm.nih.gov/pubmed/25600630

Regular oncologists always require rads after a lumpectomy, but  the school of thought to which Dr. Esserman, Dr. Silverstein,  and Dr. Lagios (all leading experts  on DCIS) belong,  favor breast conservation and also think that in certain cases rads are not necessary. You may want to send your pathology results after the surgery to Dr. Lagios:

http://www.breastcancerconsultdr.com/index.html

and ask about rads. You also usually does not favor tamoxifen for DCIS and advises to avoid rads if it's safe to;  

You may  also  consider a mastectomy rather than a lumpectomy to avoid all further treatment.  Having both, lumpectomy and mastectomy, I would say that lumpectomy is an easier surgery. I returned to my regular activities within a couple of weeks after each lumpectomy. Still recovering from  my double mastectomy. I would gladly answer your further questions.

Here are the helpful threads about DCIS from our chief experts on this topic (see Beesie's and BarredOwl's posts):

https://community.breastcancer.org/forum/68/topics/790992?page=8#idx_22

https://community.breastcancer.org/forum/68/topics/806074?page=1

Hope it helps. Good luck with your decision making. It's tough, but there are people to help here.

If you're looking for individual stories and thought processes, here's mine. I'm 58, and like you no BC in the family except my mom, who was post-menopausal at diagnosis. She had a mastectomy but was told years later that if she'd gotten the same DX then, she would have had a lumpectomy. I'm sure she also had DCIS.

I had ALH seven years ago, but didn't think about it much until this spring with the DCIS diagnosis. I just think my one breast is misbehaving. Lots of women get the oncotype test as a means to help them decide whether or not to do rads, and my RO said sure--go ahead if it will give you some peace of mind, but she said with my pathology she could tell me my score would come back high. It's the combination of the high grade, size, and hormone receptor status (negative for me). I am all about the numbers so I asked her what my probability of recurrence would be without the radiation. She said 30-40%. I asked how much of that would be invasive, and she said half. The radiation cuts that in half. I don't have any of the tamoxifen/AI drugs available to me, so really it was an easy call. (My husband also wondered if we should hold off on rads for a possible recurrence because you can only do it once. My RO said the goal is not to get there--to never have it come back. That really resonated with me.) For me it's about minimizing the probability of recurrence going forward.

And re: lumpectomy and having to have a second surgery, there *is* a high rate of that--I've read 25-40%--but my BS said DCIS is squirrely. You can't feel it, you can't see it--they have to do the best they can based on mammos/MRIs and hope for the best. I also had a nurse explain why they can't do a mohs-type surgery for BC (like in skin cancer, where they take a layer, look at it, if it still has cancer they take another, repeat until clear, all during the same procedure). I don't remember exactly what she said but something about the fat in breast tissue and freezing it to check for cancer cells changes it. Or something like that.

No you will not die from this diagnosis. You have to narrow down what you believe your individual probability of recurrence is and then determine your acceptable level of risk.

For any diagnosis/treatment path it's important to be comfortable with your decision and your medical team. I haven't looked back, and won't regardless of what comes down the road. Best of luck.

By the way, this recent abstract illustrates the challenge:

Abstract No. 52, Do LORIS Trial Eligibility Criteria Identify a Ductal Carcinoma In Situ (DCIS) Patient Population at Low-risk of Upgrade to Invasive Carcinoma? M. Pilewskie,* M. Stempel, H. Rosenfeld, A. Eaton, K.J. Van Zee, M. Morrow. Memorial Sloan Kettering Cancer Center, New York, NY.

Introduction The LORIS (Surgery vs Active Monitoring for Low-Risk DCIS) trial is studying the safety of monitoring low-risk DCIS without excision; however, identifying patients with undiagnosed synchronous invasive carcinoma is essential in assessing the safety of observation alone. Non-high grade DCIS diagnosed by core biopsy carries an overall 20% risk of upgrade at surgical excision, but the upgrade rate for women meeting all LORIS trial eligibility criteria is unknown.

Methods Women meeting LORIS eligibility criteria (age 46 years, screen-detected calcifications, non-high grade DCIS diagnosed by core biopsy, absence of nipple discharge or strong family history of breast cancer) who underwent surgical excision from 2009–2012 were identified. Final pathology details from surgical excision were collected. Clinico-pathologic features were compared between women with and without invasive carcinoma at surgical excision.

Results 325 cases were identified; 67 (21%) had invasive carcinoma on final pathology (90% invasive ductal, 24% high grade, 94% estrogen receptor positive, 8% HER2 overexpressing). Tumor staging for upgrades were 14 (21%) T1mic, 33 (49%) T1a, 16 (24%) T1b, 3 (5%) T1c, 1 (2%) T2. Five women had axillary nodal metastases. Table 1 shows clinicopathologic characteristics for the overall cohort and by upgrade to invasive carcinoma. Women upgraded to invasive carcinoma at surgical excision were more likely to have solid-type or mixed DCIS histology or intermediate grade DCIS on core biopsy.

Conclusions LORIS eligibility criteria did not identify women with DCIS at lower risk for upgrade to invasive carcinoma at surgical excision. Interestingly, the invasive carcinomas identified in this cohort of women with non-high grade DCIS on core biopsy were heterogeneous in grade, size, and receptor status. Information gained from final pathology in these women would alter treatment recommendations, and therefore surgical excision is warranted until additional risk stratification is available to identify a cohort of DCIS patients at lower risk for synchronous invasive carcinoma.

A full-length manuscript from the same group was published here (behind a paywall):

http://link.springer.com/article/10.1245%2Fs10434-016-5268-2

BarredOwl

Hi dandrhuff:

Because surgery involves a team, and because one may need to consult a Radiation Oncologist and Medical Oncologist at some point, the quality of the facility and depth of its staff is also important. I looked at hospitals with a comprehensive breast cancer center. For example, if you are reasonably near an NCI-designated cancer center, that may be a good option:

http://www.cancer.gov/research/nci-role/cancer-cen...

Others have recommended NCCN-member institutions:

http://www.nccn.org/members/network.aspx

Medicare provides some general information about particular hospitals here (search and look under tabs):

https://www.medicare.gov/hospitalcompare/search.html

For a surgeon, some people go with recommendations from their PCP, family, or friends in the health care field. I didn't really have any one in-the-know to ask, so I relied on publicly available information and in-person meetings.

I recommend looking for a "Breast Surgeon" who specializes in the treatment of patients at risk of or with breast cancer as essentially all of their practice. Here is an explanation from a book by a breast surgeon who had breast cancer herself:

"A surgical oncologist is a surgeon who specializes in cancer surgery. A general surgeon may perform cancer surgeries, including breast procedures, in addition to noncancer surgeries, such as removal of the gallbladder and appendix. The term breast surgeon is applied to a surgeon whose practice focuses on women who have benign or cancerous breast conditions. . . Ideally, you'll want to choose a surgeon who focuses exclusively or mostly on breast cancer. A British study published in 2003 reviewed the cases of more than eleven thousand women with breast cancer. Five-year survival rates were significantly higher among patients whose surgeons performed more than fifty breast cancer surgeries yearly compared to surgeons who performed fewer than ten. Some states, such as New York, track the number of procedures a surgeon performs. Call your state department of health to see if it offers a way to obtain this information or ask the surgeon directly."

Excerpt From: Carolyn M. Kaelin, MD & Francesca Coltrera. "Living Through Breast Cancer (2005).

Breast surgeons who have completed a fellowship in surgical oncology are Surgical Oncologists by training, which may be an added plus.

As noted above, I chose a hospital first, and then chose from among the breast surgeons on staff. I started with the biographies of the breast surgeons provided by the hospital regarding their experience and relevant qualifications. I also checked on-line reviews for possible red-flags (credibility of such reviews may be an issue). If the biography shows some sort of certification, I tried to confirm it with the named organization or other organization:

http://www.certificationmatters.org

I also checked my state licensing records, which subject to the accuracy, currency, and completeness of the database (which is not a given and has limitations), may provide some information about Public Record actions (e.g., disciplinary actions, malpractice judgements, etc.). In California, see this page, where you can search by name:

http://www.mbc.ca.gov/Breeze/License_Verification.aspx

When I met with a breast surgeon, questions I asked included: What percent of your practice is breast surgery? How many times a year do you perform the type of surgery recommended in my case? How many times per year is this procedure done at this facility?

If you meet with a breast surgeon, and they are not a good fit for you, a second opinion is a good way to meet another one.

Best wishes,

BarredOwl