Newly diagnosed multifocal DCIS w/comedo - why 2nd opinion?
I've been reading like crazy here and decided it was time to post my first question. I'm age 54. During MRI to assess an assymmetry seen in mammo and targeted ultrasound, there were numerous enhancing nodules <5mm seen in both breasts and one 1.1 cm in right breast. Biopsy of the assymmetry showed benign fibrocystic tissue but biopsy of larger enhancing nodule showed papillary and cribiform DCIS. My BS said lumpectomy would remove it, but that he and the radiologists were so surprised at this incidental finding that they were first going to scrutinize all my images for anything else suspicious at all. This led to biopsy of one of the smaller nodules in my left breast and biopsy of a region of microcalcifications in my right breast. The small nodule was fibrocystic, the microcalcifications were comedo DCIS. The DCIS are in two different quadrants of my right breast, so he now recommends single breast mastectomy with snb and immediate reconstruction.
My sister is frantic (well, I am too, in a different way) and pushing me to get a second opinion at Sloan Kettering. In my mind, it seems clear that the mastectomy is necessary because of the multifocal nature, and especially because of comedo cells. Both of the biopsies were verified by a second pathologist (although at the same lab). Does anyone get another pathology assessment from a different lab? The only thing I can imagine questioning is whether there is ANY expert who would not recommend a mastectomy. This is the question that plagues me as I am getting ready to schedule what I consider to be major surgery and essentially an amputation. I'm traumatized by what is happening to me and I know so many of you have gone through this. I don't know where you find your strength.
Comments
-
nesw, if you are uncertain about the MX and want to know if a lumpectomy is even a possibility, then it certainly makes sense to get a second opinion. My situation was quite similar, except that I'd already had an excisional biopsy (a surgical biopsy) that uncovered high grade DCIS in two different areas of my breast, along with a microinvasion of IDC. There were no clear margins anywhere around those two removed areas so obviously there was more DCIS left in my breast. My first surgeon told me that a mastectomy was necessary. I wanted a second opinion on that, and I knew that if I were to have a MX, I wanted immediate reconstruction (which was not an option at my first hospital). So both those factors drove me to seek a 2nd opinion at a different hospital. The new hospital had their own lab go over my pathology slides so I got a second reading of the pathology through them - they confirmed everything from the original pathology report. I hadn't had an MRI up to that point and the 2nd surgeon sent me for one. The MRI showed "stuff" throughout my breast. The surgeon explained that there was no way to know for sure if the "stuff" was more DCIS, but we both guessed that it was. He too recommended a MX but understood that I would prefer to have a lumpectomy and offered to attempt one, just to see if he could get clear margins. However from the previous pathology and the MRI we both knew that the odds were really high that I'd still have DCIS in the margins, so at that point I agreed to the mastectomy.
While the 2nd opinion didn't change my treatment plan, it did help me come to terms with it - I realized that a MX was the only reasonable option. I needed that extra time and the 2nd opinion to get me there. So for that reason, for me the 2nd opinion it was really valuable.
It sounds like you too are struggling with the recommendation that you have the MX, so I think a 2nd opinion might be helpful. You never know, a different surgeon might be willing to attempt a lumpectomy. Once it's done, if you don't have clear margins, you'll know that the MX is your only choice. Or, if you do have clear margins, you'll be able to see how much the size and appearance of your breast has been affected and based on that, you can decide to move on to rads, or have a MX instead.
Hope that helps!
-
If you are going for a second opinion at Memorial Sloan-Kettering, my breast surgeon there is Kimberly Van Zee, MD, who specializes in DCIS. She is extremely thorough, and will review everything you send to her with a fine tooth comb. They also re-read the pathology, and it IS reassuring to have that done. She is as kind and patient as she is thorough. They will drive you crazy requesting all the records, but it is worth it, even to just confirm your decisions. Dr. Van Zee also did some prediction models for recurrence risk, called "Nomograms", which are available to all on the MSKCC website.
-
nesw,
Go for the second opinion, what can it hurt? You might get more information to help you make an educated decision. I started out with left side atypical cells, so had to have an excisional biopsy which is basically a lumpectomy and didn't get clear margins. BS sent me for an MRI found a spot on my right breast had a biopsy and it was B9. But after studying all of my test results he told me a simple mastectomy was my best option. He said the problem with DCIS is that it's hard to get it all, in his words, "it's like a dog chasing it's tail." He said his main concern was recurrence. Take your time and get the information you need to be OK with the decision you make. -
I'm in a similar situation. I've had DCIS confirmed in right breast at 10 o'clock. After biopsy, I had an MRI that shows a suspicous area at 9 o'clock. I'm waiting to get an MRI guided biopsy of this lesion. Insurance sent me to a general surgeon. He says if the second location is cancer, because it's multifocal, he says I should have a MX. But a breast cancer surgeon I saw for a second opinion, said if second location is also cancer, a lumpectomy is still posible if it is in the same quadrant. When were you diagnosed? You don't have to rush, you should get all the info you need to feel you're making an informed decision.
Best of luck to you. -
Thank you so much for all of this information! Madmot, one biopsy diagnosis was Oct 10 (papillary/cribiform spot), then further biopsy results came in Oct 17 (the comedo spot). They are in separate spots in the upper inner and the lower outer quadrant of the same breast. Mrenee, the dog chasing it's tail is what I fear - the comedo form is in microcalcifications, which I fear might be spread out. I worry about multiple lumpectomies because I don't want my skin all sliced up if I have to get a mastectomy in the end anyway. I'm such a mess and in a daze, every day feels so surreal like I'm on drugs or something. How bizarre is that? I think you are all correct that I need to have time to come to grips with it, and a second opinion allows that time and conversation to happen. Unfortunately, I was supposed to attend a group meeting for newly diagnosed at my breast center, but the power outages (I'm in NJ) caused it to be canceled. I will contact Memorial Sloan Kettering, after I find out how to go about getting second opinions under my insurance. Ballet, I checked out Dr. Van Zee's website, so I'll talk to her. I've got one of those HMOs that require everything be part of a referral and preapproved. I would like to ask another question about reconstruction, so I'll go over to that forum. Beesie, I've seen your informed posts all over these forums and I really appreciate all the knowledge you put into print. I don't really have anyone besides my devoted, and equally dazed, husband who also wants answers, and my devoted, and equally dazed, sister who is of the mind to get a second opinion and then take both breasts off to make sure it doesn't become life-threatening.
-
I think everyone should get a second opinion or even a third if the two are different. Even if your insurance doesn't pay, it's worth it to you to pay out of pocket -- get them to work with you on the self-pay rate if it comes to that. You need to make an informed decision and even though it may feel like you need to get this over with yesterday, you really do have time to get the facts you need before making a decision.
Categories
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team