Seeking Advice After Being Newly Diagnosed with DCIS
Greetings y'all,
I learned on Thursday that the pathologist found DCIS in two biopsy samples taken from a clumped 3.6 cm lesion in my left breast (which was discovered via a MRI scan). The radiologist was unable to biopsy an additional 0.9 cm area of nonmass enhancement noted posterior along the pectoralis muscle 1.1 cm from the one I mentioned above. I had the MRI scan after the pathologist discovered LCIS in my left breast in February from a biopsy sample taken of what turned out to be a benign micro calcification.
I meet with the breast surgeon on Tuesday, August 24th to discuss my treatment options. Thankfully, I am already being seen at a NCI-Designated Cancer Center.
Will you please share your thoughts on what key questions I should ask her (or any advice you would like to give)? I have been jotting down some on my own but I thought it also would be good to hear from those who have already gone through this process.
Here is what I know from my pathology report:
1. Left breast, UOQ, superior, MRI guided core biopsy for a non-mass enhancement: DUCTAL CARCINOMA IN SITU, solid and cribriform type, high-grade, with single cell necrosis and rare calcifications. Receptor studies deferred to excision.
2. Left breast, UOQ, inferior, MRI guided core biopsy for a non-mass enhancement: DUCTAL CARCINOMA IN SITU, cribriform type, high-grade, with necrosis. In situ carcinoma partially involves a complex sclerosing lesion. Lobular carcinoma in situ, nodular adenosis, and cysts with columnar alteration and associated calcifications. Receptor studies deferred to excision.
I look forward to hearing from you soon.
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Sounds like you know size, grade and type. You know necrosis. If you don't already know ER/PR% that would be important. I had a non-mass enhancement too - on final pathology after surgery it turned out it was a mix of many pre-cancerous and benign findings. You didn't mention a decision you've made yet about surgery so questions about that would make sense (e.g., options, related lowering of risk, etc.). When I met with my first surgeon I had ZERO information so that appointment was just learning anything about the pathology. Between that appointment and the 2nd opinion surgeon I found this site. I learned a lot in between, made a surgery decision so it was a much more productive appointment with that surgeon, less anxiety provoking and more about logistics, then scheduling... I stayed with my 2nd opinion surgeon who was part of a nationally certified breast care center. Best to you and I"m sure they'll be more posts coming....
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Thank you so much Livinlife. No, I haven't any decisions about surgery yet. I did go ahead and schedule an appointment with another surgeon at a NCI-Designated Cancer Center for a second opinion in mid-September. I think it is a good suggestion to determine the risk reduction for recurrence that each treatment options offer.
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I just recently joined this group. I found out December 27, 2021 that I have DCIS cribriform type high nuclear grade with focal comedonecrosis. I feel like the surgeon wants to do lumpectomy and I want mastectomy. The surgeon says it’s my decision. I read up on the type I have and it can be aggressive. I need to be able to work asap. I work about 12 hrs a day. I work from home and on my computer. It’s my right breast and I’m right handed. I am hoping that just because it’s my right breast that it won’t affect me working. I have kids that need me and my income is the only money we have coming in. I would appreciate any advice. If anyone is in the same situation as me and about recovery,how long it will take me to be able to work.
Thank you
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Hi JGore. I'm sorry you're here with us. It's a hard decision for some people because you have to weigh all the costs and benefits, make the decision, and then not second-guess yourself. The post below gives you some links that can give you more info on that.
https://community.breastcancer.org/forum/91/topics...
There's another one I don't have at hand that has more. Maybe someone else will stop and post the link to it.
What I would say is that mastectomy will almost surely have more difficult and complicated recovery than lumpectomy. If you have reconstructive surgery, too, that increases the impact exponentially. If you're concerned about recurrence and that's why you're leaning to mastectomy, current research shows (again I don't have the link handy) that outcomes are at least as good with lumpectomy and radiation for most cancers.
You mention that the type you have is agressive. Can you give more info on that? There are posts and comment threads on basically every kind of bc, so I know that someone here will be able to help you sort out the options.
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HI JGore - Is it the comedonecrosis or the grade that has you concerned? Or the combination of the two?
I just had a lumpectomy for grade 3 DCIS and the surgeon and I didn't spend much time considering mastectomy once my genetic testing came back negative. (My maternal grandmother died of breast cancer back in the 1940's.) I also have a "office" job that I can perform from home. I took three days off, but could have worked on the third day. The area was small, at 6 o'clock, and there were no lymph nodes involved, so that certainly made my recovery easier. With the grade 3, though, I need to follow up with three weeks of radiation.
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Hi JGore - I understand your concerns. It is such a personal decision. I am happy to share my journey with you.
I opted to do a lumpectomy with radiation based on the recommendation of my surgeon after a biopsy revealed high-grade, estrogen-receptor negative (ER-) DCIS in my left breast. The surgery on September 29th went well and I recovered quickly. I returned to work a week and a half later.
Before I underwent any radiation however, doctors found an additional type of breast cancer in my left breast when they examined the tissue from my lumpectomy - intermediate-grade, ER+ DCIS. While neither of the breast cancers were determined to have become invasive, one was identified as more aggressive and likely difficult to treat if it ever were to progress - the high-grade, ER- DCIS. The pathologist also found a lot of it. She further determined that margins were not sufficiently clean, meaning cancer cells were at or near the edge of the tissue removed and some likely remained in my body.
Based on the new findings, I decided to follow my surgeon's recommendation again, which now was to undergo a mastectomy of my left breast to remove the remaining cancer and reduce the risk of recurrence as well as to undergo a prophylactic mastectomy of my right breast as a preventative measure. Thankfully, my surgeon presented my case to other breast oncologists in the John Hopkins health system at what is known as a tumor board, and they unanimously agreed with her approach. I underwent the surgery on October 27th and am recovering nicely but needed much more time off from work to heal properly compared to the lumpectomy. I returned to my job five weeks later and worked part-time for two weeks thereafter.
Thankfully, I did not need to undergo any chemotherapy given that the doctors found no invasive cancer in my blood or my sentinel lymph node. I also was able to avoid radiation given the decision to have a mastectomy. I chose not to have reconstruction, so my breast cancer treatment is now officially over.
I feel like I made the right decision for myself at each juncture because I took time to process the information and the emotions that arose. I also sought support from friends, family and other breast cancer survivors who generously share their journeys with me to help me determine the course of action that best aligned with my own values. Lastly, I felt comfortable relying on the recommendation of my surgeon and her colleagues because they belonged to a National Cancer Institute (NCI) Designated Cancer Center, which meant that they delivered cutting-edge cancer treatment.
With a DCIS diagnosis, I felt like I had time to explore these matters. Wishing you the best in determining the treatment that is right for you.
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71 years old. Diagnosis: DCIS, Moderate Grade, Stage 0, ER/PR+. Diagnosis per stereotactic biopsy of one area of calcifications. Have multiple areas, some not biopsied. Treatment recommended: Mastectomy with DEIP simultaneous reconstruction.
I have read several articles saying that a diagnosis this late in life would be less likely to result in IBC before death by other reason based, I guess, on average life expectancy.
I would like to consider just doing active survellilence, vs mastectomy, but am concerning because of the rest of the areas of calcifications not being biopsed. I am also considering having a breast staging MRI and some genetic testing referenced in these comments before I make a decision.
Is anyone else in the same boat that I am? If so, PLEASE let me know what you have done or are thinking about doing! I would be greatly appreciative for ANY advise and counsel you could offer.
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69 year old Diagnose: mammogram mid December 25: (no lumps or symptoms) DCIS high grade, un-invasive cancer (maybe stage 0?) - had a lumpectomy 3 weeks ago .. 2 small areas 14mm apart - margins too low (0.2mm and less) The recommendation is to have a 2nd surgery and Radio Therapy…..the side effects of RT scares me and also wonder if the 2nd surgery needs to be done…..am trying my best to familiarise myself with this new situation, not very literate regarding the medical terms ….feeling overwhelmed…The surgeon and oncologist are giving me time to make a decision ….what risks will I take regarding recurrence if I do not have a 2nd surgery and no RT? the side effects do scare me…feel its diagnosed later in my life. Appreciate your thoughts and knowledge :)
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Hi @heike69 , I’m sorry your surgery did not yield the required margins. DCIS standards of care require the .2mm margin because there is sometimes a small bit of healthy tissue between two bits of DCIS. The larger margin is reassurance that all of it was removed.
Your doctors know all the details of your situation so it would be a good idea to ask them what your recurrence risk would be if you do nothing else. Since you would prefer not to have radiotherapy you might ask if a second surgery followed by 5 years of taking an aromatase inhibitor would be a possibility.. All the best deciding what you would like to do.
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thanks for your response and advise maggie15 ..the dcis I am diagnosed with is hormone negative….my surgeon , oncologist and breast nurse are supportive to make my own decision….its just so overwhelming….
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@heike69, Hormone negative DCIS unfortunately does limit your options. Would having a mastectomy rather than a cleanup lumpectomy and radiation be an option you could ask your doctor about?
More than 99% of people get through radiation without serious side effects. I was one of the unlucky few. The pulmonologist I was referred to told me that a lung cancer radiologist would have seen the red flags in my medical history (upper GI bleed and Barrett’s esophagus.) I still think radiation is an effective treatment for preventing localized breast cancer recurrence. I would make sure the radiation oncologist is aware of any medical conditions you have, especially anything that affects your heart, lungs and neck area since scatter that does not affect most people can have adverse effects when another issue is present. There are newer radiotherapy protocols for women over 50 like FAST and FAST Forward (clinical trials done in the UK) where five or six treatments are all that are needed.
In general radiotherapy for DCIS reduces the risk of invasive cancer recurrence by about 15% (50% for DCIS recurrence.) These percentages change over time. Your doctors should be able to give you a percentage that is more personalized. I always look at these numbers the other way to help me decide; 15% chance of recurrence is 85% chance of no recurrence.
I understand how overwhelming this decision is. All you can do is decide what is best for you right now. I did that and even though in hindsight I would have done something different my outcome goes into the category of things that are out of my control. Good luck with your decision.
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