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DCIS Treatment Plan
Had invasive removed with good clear margins but still have multiple small (2mm) pockets of DCIS (precancer/stage 0) after re-excision and recommendation is mastectomy/amputation.
I’m on Temoxifen currently and plan to take as long as possible, along with vigilance active surveillance. My invasive was grade 1 hormone positive slow grow and no longer on progesterone. No family history and genetic testing showed no mutations for any cancers.
I have already heard all the stories from women that go through with mastectomy for precancer but I would like hear from anyone who had residual DCIS and chose radiation, anti hormone treatment and active surveillance. Radiation oncologist said 28% chance of reoccurrence if we continue with original treatment plan moving to radiation or said differently there is a 72% of no reoccurrence.
My opinion is that if invasive came back, I would then get mastectomy but is my last straw and know at that point I did everything I could to save my breast and get more use out of my sexual organ with intimacy with my husband.
Thank you
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@birdie60 Bless you! You are smart. I can tell that you do your research, take your time, don’t let anyone rush you into something… Such as radiation where you still have questions. I went for breast conservation. I’m on month 5 of healing with an open wound on the radiated breast… If you want to do any surgery after radiation, please remember that there are complications… But only in the radiated breast. If you choose to go ahead and get radiation first, I would wait at least a year before you do your mastectomy. Yes, with your family history I understand your thoughts on mastectomy. I wish you all the very best as well as the best doctors you can find. Please remember that the surgeon is the most important doctor in this journey.. find one you can connect with .
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2 ReactionsThank you for responding and kind words. That's my hope that I will definitely connect with the specialized breast surgeon that I have been referred to. Unfortunately my appt isn't until 2/12/25. So many things to think about and consider. Blessings and prayers for your continued healing.
@birdie60 - If you need to unravel your thoughts after the appointment, I will be here for you. The way I understand this now, is completely different than when I was just beginning this journey a year and 1/2 ago.
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2 Reactions@ritalu Thank you ! met with my regular DR this morning. She was very pleased that I was assigned the care team I got. So that made me feel soooooooooooo much more better. She answered lots of my questions, and also noted which ones that I would need to take up further with the oncologist and the surgeon. She herself stated if she was diagnosed, this is the team she would choose. Have a blessed day and thank you for reaching back out again.
Have you completed your journey ? Are you cancer free ?
I am so happy to hear this! It's feels great to be in the best hands.
The last I heard is that I am indeed cancer free. I am still dealing with wound care from the 2nd surgery. It is normal for healing to take longer after radiation. I think it will take another month or two.
Thank you for asking.
Rita
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
@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.
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1 Reaction@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.