DCIS grade III found in Fibroadenoma

Liz351

Hi, I am new to this forum!  I have been through what I would call a nightmare the last 3 months. 

I have fibroadenoma's in both breasts; have had them for over 10yrs now and was monitored with ultra sounds only, I'm 35 yrs old now.  Most are very small but one which was nearly 4cm was biopsied in 2013. The biopsy confirmed it was benign back then so I left it alone as it did not hurt at all.  In early 2015, it started to hurt and so the decision was made to have a lumpectomy to remove it. I had the lumpectomy in October.  To my surgeon's surprise, the pathology confirmed that within the 4cm fibroadenoma was DCIS grade 3, solid and cribriform, which was only 1.5mm, and 4mm from margins.  This was a surprise to him but he suggested since so small and that it was removed, it should be fine and that I am now monitored more closely with mamo and MRIs.  He did refer me to another oncologist to speak about Tamoxifen option.  Unfortunately, during a physical exam right before this surgery they noticed a large lump in my neck and after an urgent ultra sound and biopsy right before my lumpectomy, I received the bad news that I had thyroid cancer.  I had urgent neck surgery a month later (that's right, 2 surgeries in 2months).  I had to heal from the thyroid surgery b4 dealing with the DCIS. Lucky because they got the thyroid cancer all out and it was confined inside another cyst (yes, I think my body is using benign cycts/fibroademona to mask cancer cells), I do not need radioactive iodine treatment but require to be monitored now for life as they left one thyroid gland in.  Fast forward a few weeks, I went to the other breast oncologist for Tamoxifen information who suggested that I should instead look at radiation therapy for the DCIS since I have no breast cancer in my family.  She referred me to a radiation oncologist. I saw the radiation oncologist few days ago who recommended radiation as DCIS was high grade but also said that I may have missed the window. I am so very confused.  Do I really require radiation if the DCIS was only 1.5mm?  She said she would still recommend since it was high grade and I'm young.  I am so tired of everything and honestly need a break. So many dr. I spoke to have different opinions, and some don't even consider DCIS cancer as not really cancer yet.  Also I have other lumps and they do not know what is in there, other than determining they are likely fibroadenoma's since there for so long with no change.  If I had just the one lump to worry about, I would say yes to radiation. But I am leaning to not go through with radiation because it may not solve the problem if DCIS is masking itself in my fibroademona's. Issue is this condition is rare from what I understand. I am so confused and would rather not use my radiation card now knowing that I have other lumps in there (can't have radiation 2x was told).  Have a breast MRI coming up in a few weeks. Unfortunately wont get the results in time to decide.  I was given a weeks time to decide on radiation as I have/am near the benefit window.  Has anyone else said NO to breast radiation for DCIS?

SummerAngel

If you had the lumpectomy in October I'm not sure why they're trying to tell you that you now only have a week to decide on radiation/no radiation. Seems like a long interval already! Personally, I'd wait for the MRI result before deciding what to do, but that's probably because of my own experience. I had a similar situation, a lump that was biopsied as a fibroadenoma but was found on excision to contain cancer (in my case, a 3.9 x 3 x 2.1 cm fibroadenoma contained 2.2 x 1.4 cm IDC). Yes, it's very rare and my doctors and nurses were very surprised as well! I then had an MRI (after a clear digital mammogram on the right) and that found the IDC on the right. With that said, it does make sense, with your high grade DCIS, that they're pushing for radiation. That is the standard of care. I'm not sure about the "benefit window" they're telling you about, though. Maybe someone with more knowledge of DCIS will come along and clarify that.

april485

Hi Liz, many women have said no to radiation for DCIS. Sometimes it is not necessary at all and with a very small DCIS, it is often not recommended if they get clean margins. But, due to your young age and aggressive nature (grade 3) the standard of care is to recommend radiation. I agree with SummerAngel regarding the confusion on "window of opportunity" because DCIS is non-invasive, people often take months to decide what to do and have no problem getting rads when/if they decide to do so. I would get a second opinion if possible on your treatment. Did the do the oncotype test for DCIS? That is what usually can pinpoint whether you benefit from rads and/or tamoxifen or not. I would get clarification on this "window" they mentioned if I were you for sure. Radiation Oncologist should NOT be pushing you to decide in one week! That is wrong, wrong and more wrong. Please get a second opinion from another RO!

Also, so sorry you have been through 2 cancers in two months! That has to really be disconcerting and frightening for you. We are here to answer questions or to support you whatever you choose to do. Hugs!

Liz351

Thank you for the reply.  Yes, it really bothered me when I was given a short window time frame, considering its been long already.  I left feeling upset and confused. To be fair, RO did mention I could consider rad up-to 6mths after the lumpectomy but that the benefit can diminish after 12 weeks post op. I likely will see another RO for their opinion. My gut feeling says to not do rad now and instead wait for the other results. So think that's what I'm heading to.  Was hoping to find others with similar situation as I was told by some professionals DCIS in fibroadenoma is rare and likely just a coincidence! 

Liz351

Also, they didn't do the oncotype test for DCIS as of yet.  Oncologist requested this last week, for the Tamoxifen option to see if it is recommended. Have not heard as of yet.