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JLumb's avatar
JLumb
Member
2 months ago

Burnt out DCIS

Hello!

I was diagnosed with high grade DCIS in my left breast in 2024 and opted for a mastectomy on that side. Pathology later showed it had started to become invasive (just barely, but still). My sister passed away from metastatic breast cancer in 2022, and my dad from bowel cancer in 2004, and both had roller-coaster journeys with treatment, so I wanted it out, with what to me felt like the least amount of fuss.

I recently had my 1 year check up and they have found 'burnt out' DCIS in my remaining breast. The little information I have found on this says that it is DCIS that has regressed or resolved itself.

In my initial chat with the Dr we discussed that given my history, having another mastectomy was the way to go - that we could do further investigation but that there was a high chance it would come back and lumpectomys would kind of be chipping away at one breast - whereas a mastectomy would eliminate risk altogether (I know this isn't 100% but you know what I mean).

I've just had a phone call from my surgeon, while we try and find a date for the surgery, who reiterated that we haven't definitely found cancer in the right breast - there are calcifications that weren't there 12 months ago and this 'burnt out' patch, and he wanted to check I was OK with this decision still.

I reiterated that I was but now that I'm off the phone am starting to second guess my decision!

My gut still says mastectomy - both my dad and my sister died from aggressive cancers in their 40s - and my priority is not giving it a chance to take root in my body.

But now I have the niggling feeling that maybe I should watch and wait for a while and see what changes. DCIS obviously isnt guaranteed to progress further, but I can't find enough information about what 'burnt out' actually means longer term.

Has anyone had experience with 'burnt out' DCIS and can tell me more about it? Or have any other advice about making a decision?

dcis
treatment decisions

1 Reply

  • Suki's avatar
    Suki
    Member
    2 months ago

    Hi JLumb​ 

    I didn't have "burnt out" DCIS so can't help you there, sorry. 

    But I did have widespread calcifications in both breasts and diagnosis of Lobular Neoplasia (LCIS) following core biopsies on both sides.   I was advised that the standard treatment for LCIS was surveillance, so was booked to have a mammogram every 12 months instead of 24 months.

    One year and 10 months later I had a lump in my left breast and was diagnosed with triple positive invasive ductal carcinoma (stage 2 with a 23mm tumour).  So it is possible I also had undetected DCIS (in very dense breasts).

    Not to scare you, but I have now completed chemo & targeted therapy, had a skin-sparing bilateral mastectomy and am now on anti-hormone therapy.  I did not have to have radiotherapy, as my lymph nodes were clear and I didn't have a lumpectomy.

    If I had my time again, I would want to have had the bilateral mastectomy after the LCIS diagnosis!  As it is, because of bilateral calcifications and the aggressive nature of triple positive cancer, I was happy to have the mastectomy for peace of mind and to reduce the risk of having to have further treatment if something formed in the other breast.

    Just my thoughts on my circumstance.  All the best with your decision xx