I have DCIS grade 2 with comedo necrosis and mass like features on MRI. Hearing these two things (comedo necrosis and mass like characteristics) increase risk of finding an invasive cancer component at the time of surgery. Is this true? Has anyone had DCIS with comedo necrosis and/or mass-like DCIS who was NOT found to have any invasive cancer at the time of surgery?
Welcome nmadrigal. I had DcIs in both diagnoses one in 2003 and the latest in 2022. I also had invasive cancer both times. Both in same left breast.
First time I had partial mastectomy and second time I had mastectomy and diep reconstruction as you can’t have radiotherapy twice on the same breast.
Well it clearly didn’t work the first time but it does seem to be a very variable disease and no two cases seem exactly the same as we are unique.
I wouldn’t get too scared although it’s easy for me to write this as I have given up trying to answer unanswerable questions.
Doctors can only tell you the percentage of people who survive each kind of cancer and die if something else. That’s not the same as being cancer free is it? And there are women die young before the age they were most likely to get breast cancer.
It is mainly a disease of old age but there are many types some of which are more likely to kill you than others.
My first cancer was grade 1 oestrogen positive (the most favourable kind). I was 49 at diagnosis in 2003.
Latest one was grade 2 also oestrogen positive with one metastatic lymph node (all other nodes removed in 2003).
This was diagnosed in June 2022 when I was 67. My life expectancy may be lower than it was but I am more worried about quality of life - can I have fun.
This is easier to achieve if you are well off and have a house you own out right. Luckily I do although after I married I gave up half of it to my husband. Do not do the same! He hasn’t a bean and I wanted to leave my money to charity. I know charity begins at home but really!
He is convinced the water is poisoned and has made several suicide attempts. I live in fear as he isn’t eating either. So no fast moves and put yourself first.
Seagulls
Hi @nmadrigal
Sorry to hear that you have this diagnosis.
My experience has been that it is very difficult to second-guess the results of cancer surgery until the team have the pathology results. I have had DCIS twice once during covid in 2020 and the second time last year.
I didn’t have MRI scans either time, only mammograms. The first time there was a large area of DCIS detected, the surgery was successful, and the pathology results showed it was a mix of intermediate and high-grade cells with large areas of necrosis. I had clear margins and went on to have radiotherapy which was proving succesful.
Last year my annual mammogram showed up a very small area of DCIS in my other breast, which ended up being widespread, although this didn’t show up on the mammograms. Following a couple of unsuccessful lumpectomies, I ended up opting for a bilateral mastectomy with DIEP reconstruction (using my tummy fat) and a sentinel lymph node biopsy, which was clear.
I was lucky both times the pathology came back showing only high-grade DCIS with necrosis, but there was no invasive cancer detected either time. I would say that scans only give an indication, and unfortunately you will need to go through the horrible phase of waiting for the pathology results.
Do you have your surgery dates yet?
Wishing you all the best, xx
Thank you so much for taking the time to respond. I am awaiting a surgery date, but they are going to put me with whichever breast & plastic surgery team can get me in the soonest, within the next 2-4 weeks. MRI and ultrasound don’t show any suspicious lymph nodes, so I’m hopeful no invasion. Plan would stay the same if micro invasive which is also reassuring. They will perform frozen section path during the operation so I will have mostly accurate pathology results as soon as I wake up. Thankful for that as well. Healing light to you.
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Thank you for the response. It’s helpful hearing from others as I’m the first in my family/friend circle diagnosed with breast cancer. Appreciate you.