Stereotactic biopsy
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Hi Maggie, I got the surgical pathology it basically says on diagnosis 1. Lobular neoplasia (lobular carcinoma in situ and atypical lobular hyperplasia) classic and pleomorphic (focal) types, with microcalcifications. 2. No invasive carcinoma identified. 3. Pleomorphic lobular carcinoma in situ present .05 mm from the closest inked posterior margin and 2 mm from the remaining margins. Need to reconcile with additional margin status. I was worried about paragraph 3 so I emailed my oncologist and she wrote there is no more cancer it was all removed during biopsy. So I asked her why did I have the lumpectomy and sentinel node biopsy so she said it’s impossible to tell from imaging. So I asked her does that mean no radiation so she didn’t respond to that. I am seeing the surgeon on Monday and oncologist on Thursday. There was no carcinoma identified in one lymph node. All the other margin resection it says no atypical or carcinoma identified. It also says no regional lymph node metastasis identified or ITC only. Also Microinvasive carcinoma is positive for estrogen receptor, while negative for progesterone receptor and Her-2 overexpression. What do you think Maggie.
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Hi @dpako, I'm glad you got a pathology report with clear margins and no lymph node involvement. While they require a 2 mm margin for DCIS they seem to think the wider margin doesn't make any difference for LCIS. My IDC margin was "no ink on tumor", <.1 mm. Every type of breast cancer has its individual quirks on how it is assessed and treated.
The pleomorphic component means that it's a bit different from the usual LCIS and further treatment will be tailored to your personal circumstances. That might include radiation or hormone blockers (aromatase inhibitor or tamoxifen) due to being ER+. When your meet with the surgeon and oncologist you can always ask them why they are or are not recommending a treatment. Let us know how your appointments go.
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thanks for reviewing Maggie. I am worried about this pleomorphic lobular carcinoma in situ. I am surprised they didn’t recommend mastectomy with the pleomorphic because I heard that’s aggressive and sneaky. The surgeon never recommended mastectomy he just said lumpectomy. Do you know anything about this pleomorphic lobular carcinoma in situ?
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Pleomorphic cells have variable larger nuclei. Some people have posted about pleomorphic ILC which is pretty rare (< 1% of invasive diagnoses) and is sneaky. Often LCIS is just monitored but pleomorphic LCIS should be removed along with SNB, the surgery you had. Your doctors seem to be following the standard of care. I don’t know how often radiation or anti estrogen treatment is recommended. You might want to start a new thread asking for information about pleomorphic LCIS. This forum has posts about pleomorphic ILC but I don’t recall seeing any with your diagnosis which is also unusual.
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does anyone have any experience with pleomorphic lobular carcinoma in situ?
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Hi Maggie, so I saw my surgeon on Monday and the first thing he said I don’t need chemo and I asked him what stage this cancer was he said 0 but he still is sending me for a consultation to a radiation oncology. He also took off the steri strips where the node was taken out it’s a little sore and a bit pinkish. I saw the oncologist today and she said this is the best result I could have gotten and she gave me new medication I have been taken Anastrazole and she changed it to Exemestane 25 mg. I asked her what are the side affects and she said the same as Anastrazole. I never had any issues with Anastrazole. Also I asked her about the stage so she said 1A and there is no grade and the surgeon said 0 so I am confused. She talked about radiation and I said I really don’t want to do that so she she thought about it and it looked like she wasn’t sure but then she said since I got the cancer while on Anastrazole she feels I should do radiation. So I decided to go to sloan for a second opinion to a radiation oncologist. I won’t do radiation unless it’s absolutely necessary. I have an appointment on the 23rd with the radiation oncologist I used last time. And going to Sloan on the 16th for second opinion. For the life of me I don’t know why they didn’t use IORT to avoid going through radiation so she said they don’t use it that much anymore because it causes scar tissue. Please let me know your thoughts. Thank you.
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Also if I take the pill to prevent the cancer from coming back why do I need radiation?
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dpako,
I am sorry you find yourself here. I generally stay away from getting too far into the weeds on medical issues as Zi am unqualified to do so. A “pill”, an aromatase inhibitor, does not prevent cancer from coming back. It certainly increases your odds for survival time, but breast cancer has no cure, only lack of recurrence. Radiation helps mop up stray cells in the breast/lymph node area so it is another means of catching those stray cells. Breast cancer cells can travel through the bloodstream as well.
All treatment choices are ultimately yours. Learn as much as you can about your bc and how treatments may affect your survival. Unfortunately, bc turns out to be much more complex and with many possible variations in both dx and tx than most of us could have imagined. Whatever you choose to do, you need to come to a place of peace with that decision and have no regrets regardless of the outcome. Take care
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Hi @dpako, I’m sorry that you couldn’t get a more consistent explanation from your doctors. Getting a second opinion is a good idea. As exbrnxgrl said radiation kills any stray cells in the breast area. Its purpose is to prevent local occurrence/recurrence, another tumor in the breast. An aromatase inhibitor like anastrazole or exemestane works systematically to reduce the amount of estrogen produced by fat cells. This is to try to prevent cancer cells from surviving in the breast and elsewhere in your body. This double modality of treatment is standard of care. IORT has gone out of favor since it is more likely to cause breast fibrosis.
Whatever treatment you decide on is ultimately your choice. Before your second opinion appointment it would be a good idea to write out a list of any questions you have so you can ask them and get answers. Since you previously had IDC in your other breast and pleomorphic LCIS is rare it will be helpful to consult with someone from MSK. Let us know how you get on.
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thank you guys for your responses and your help. So it’s not uncommon to take an aromatase inhibitor and radiation. I have an appointment with a radiation oncologist before I go to my team’s radiation oncologist. If msk tells me to do radiation I will. What I am worried about is my heart and lungs because it’s on left breast. Do you think I should go to a radiation oncologist at msk or a surgeon to review all my records?
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Radiation plus an aromatase inhibitor (or tamoxifen) are standard, so common doesn’t even begin to describe how often they go hand in glove. Please review what Maggie wrote about the purpose each serves. While both are involved in decreasing the odds of a recurrence, they are not the same. I always support getting a second opinion. As for who you should go to, I am a retired teacher who has no medical expertise beyond being a bc patient. Take care
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Since you have an appointment with a radiation oncologist at MSK you should speak to him about your radiation concerns. If he is not able to address your other questions ask whom he would recommend you speak to. He would know better than I but I’m guessing he might recommend a medical oncologist or surgical oncologist. Surgical, radiation and medical oncologists often work as a team so they all have general knowledge of the various treatments and each others’ roles. At my hospital the SO handles hormone therapy for patients who are stage 0 while an MO gets involved if the cancer is invasive. I don’t know if this is the case elsewhere but it sounds like you don’t have a real answer about whether your tumor is invasive. It’s important to know that to help you evaluate your risk and decide on treatment.
If you are concerned about the effects of radiation on your heart and lungs ask the RO about methods to help lessen that like gated breathing and radiation field planning. If the second opinion RO thinks you need an additional second opinion he could help you set that up. You have a history and diagnosis that is unusual. It might take a bit more time to figure things out so that you are comfortable with your plan going forward. You have had surgery so you can take the time you need. Hang in there.
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Thank you exbrnxgrl for your input. This is my second time with this had it 10 years ago and got a recurrence in March. I see you have been through the mill. Hope you are doing well. I will keep you guys up to date when I see the radiation oncologist. This disease is a sneaky one.
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Hi Guys,
I just emailed my oncologist and asked her what is the rationale for recommending radiation in my case since the cancer was so small and not invasive so she replied it developed while on endoctrine therapy - indicating there is some resistance. Since she changed my medication isn’t it enough. What are your thoughts?
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Thoughts? I am not a doctor, nor are most people here. More importantly, we are not your doctor. I think bco is a great place for support but medical advice is out of our wheelhouse. Your question is valid but your mo or a second opinion mo would be the best resources for addressing these concerns. Take care
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Hi @dpako, I'm glad you got an explanation of your RO's rationale for recommending radiation. In some cases stage 0 cancer does not require radiation (small and low grade) but in other situations it is recommended. Initially I was diagnosed with DCIS (the pathologist missed the IDC on the biopsy slide) and radiation was called for because the tumor was larger and grade 3. When I transferred my care to a big teaching hospital my diagnosis was changed but the recommended treatment, radiation and endocrine therapy, was not. Because you previously had breast cancer and developed a new tumor while taking anastrazole your onco is making a valid point about the necessity for the more aggresive treatment. Also, pleomorphic LCIS is sneaky. There is always the chance for rare SEs from rads but skipping radiation increases the chances for another recurrence which could be stage 4. You have to decide which risk you would rather take. There are protocols for minimizing the amount of radiation to your lungs and heart so it would probably be a good idea to get treatment where that would be done. Getting a second opinion from the MSK radiologist is a good next step.
Full disclosure: I'm one of the .02% who had a rare serious reaction to radiation (pulmonary fibrosis) which was initially life threatening. I have to avoid any type of respiratory infection so the currently dormant disease does not activate and move into my good left lung. My specialty pulmonologist told me that there was a red flag in my medical history, Barrett's esophagus a fibrosing disease, which should have changed my treatment to mastectomy and targeted therapy to avoid radiation. He knows about it since he exclusively treats ILD patients but most doctors aren't aware of it. Hindsight is 20/20 but anyone with a lung condition, heart issue or autoimmune disease should get expert medical advice before proceding with rads. I have to live like I'm immunocompromised but I have a longer life expectancy than someone with metastatic cancer. In spite of what has happended I still think I made the best treatment decision for myself given what I knew at the time. Make your decision based on your unique circumstances with the knowlege that none of us can foretell the future.
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thank you Maggie and I will follow your advice and go for second or maybe third opinion. Right now I am with Columbia Presbyterian which is a teaching hospital will see what msk says. Take care of yourself and it sounds like you are doing great and taking care of yourself.
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