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I am new to this as I have just gotten my upsetting biopsy results. However, as a scientist (immunologist), the first thing I do is look for data. I have been finding more doctors and scientists from some of the world's most respected institutions feeling like we over-treat DCIS. I will, of course talk to my doctors and follow their lead because this is their field of expertise and not mine.
But this is just one paper (a review) talking about a couple of studies. I found it comforting because it seems to imply that DCIS has a low rate of progression (not 0%, but low).
Review Article from Nature Communications
Open access
Published: 09 July 2019
Ductal carcinoma in situ: to treat or not to treat, that is the question
Maartje van Seijen, Esther H. Lips, Alastair M. Thompson, Serena Nik-Zainal, Andrew Futreal, E. Shelley Hwang, Ellen Verschuur, Joanna Lane, Jos Jonkers, Daniel W. Rea & Jelle Wesseling on behalf of the PRECISION team
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@ruthadler What I’ve started to target in on, when reading research, is OS, overall survival, vs DFI, disease free interval.
I had DCIS, and what I read is most DCIS stays indolent, harmless, and overall survival rates are high. Yea?!
But OS does not mean disease free interval. I want DFI.
I want treatment based on DFI, not on OS that might mean I’ll continue to survive through multiple new cancer episodes.
If they do their patient tracking right and comprehensively, I think they will find 20 years from now that for many women who were not treated, their stress level over a lesion in situ caused other health issues. And, that hormone therapy that was recommended as a step down in treatment (reduced over-treatment) had a high non-compliance percentage, that allowed cancer progression.
@ruthadler Just so you know... i had DCIS in situ, Stage 0 grade 2 (intermediate), no BRCA gene mutation, ER-, PR-, and after the pathology came back from my lumpectomy, I was Stage 1a, grade 2, HER2- 1+ TNBC with microinvasion. I had a 2nd surgery to determine if lymph node involvement.. that was negative thankfully. So it did spread apparently in the time from my biopsy to lumpectomy.. about 5 wks... Now whether the biopsy just didn't get the microinvasion part or not I have no idea, but it had still broke through. My oncologist told me had they found this a couple of months later, I would be talking a different situation and different treatments.... I sometimes think the radical mastectomy that I see on all the support groups and chats is over treatment... but I myself was ready for a DMX and my surgeon explained to me a lot of things about how (in my case) it wasnt necessary. It also has to do with the recurrence rate. I dont remember what she told me the % was, but it was low. So Im good with lumpectomy. However, If there is a recurrence... I will definitely be leaning more toward a mastectomy.
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@ruthadler, I noticed that you wished to post a URL to an article with your post. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe.
Allow me to post it for you:
- Ductal carcinoma in situ: to treat or not to treat, that is the question https://www.nature.com/articles/s41416-019-0478-6
I'll be interested to learn about the outcome of your discussion with your oncology team and treatment options vs watchful waiting.