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13 years out - 'all clear' mamm - DCIS - no additional treatment

momzr Member Posts: 7

Just wanted to share that I had my annual mammogram earlier this week and was given 'nothing suspicious' results and told to come back again in another year for annual screen. I was diagnosed with DCIS in my left breast (very tiny 1.6 mm single focus) in July of 2008 at age 46. At that time I had a lumpectomy but did no additional treatment. A week after the 2008 biopsy, the medical oncologist told me that my tumor was so tiny he thought there was a miniscule chance it would cause me problems down the road and he did not recommend radiation therapy or hormonal therapy with their associated risks and side effects for my particular situation. I also had a lengthy discussion of possible radiation, but decided to forego it with radiation oncologist in agreement on the decision. I've had a couple "scares" since then - one additional lumpectomy/excisional biopsy as well as a stereotactic biopsy on the left breast and a call back or two (most recently for the right breast). However, nothing resulted in anything more serious.

My own mother was also diagnosed with Stage 1 Breast Cancer five years ago in May 2016 (she is now 80) and she has been taking an AI for five years since her diagnosis – she will be done with that medication next month. Having my Mom also get diagnosed does worry me a little more each year when I go for my screening, but am super happy to be 13 years out at this point with no further troubles. When annual screening time rolls around I get a little nervous, but really don't think about the DCIS diagnosis much anymore. Good luck to all who are making decisions concerning DCIS.


  • moderators
    moderators Posts: 8,081

    momzr, thank you for stopping by to share this inspirational post! It truly will help put many at ease who are facing this diagnosis and treatment decisions, and worry for the future.

    Celebrating your 13 healthy years (and your mom's 5!) and sending good wishes to you both for many, many more!

    --The Mods

  • LivinLife
    LivinLife Member Posts: 301

    Really great to hear your success story after such a long time! Hoping it remains that for you. The worry is real too and you validated that for yourself and others. I hope your mom continues faring well too....

  • tinkerkell
    tinkerkell Member Posts: 1

    Thanks so much for posting this. I am just coming up on 4 months since my lumpectomy and my first follow up mammogram and ultrasound. I also decided against radiation and I am on ultra-low dose Tamoxifen - 10mg every other day. I made these decisions due to a very small area that turned out to have been removed entirely by the biopsy (so the lumpectomy was actually for nothing), and my DCISionRT score came back as 0.8. I felt/feel pretty comfortable with my decisions, but every now and then I wonder if I'm making a mistake not doing everything I can. Your experience is exactly what I'm hoping for and helps me feel like I'm doing the right thing.

  • khakitag
    khakitag Member Posts: 19

    I am coming up on 2 years in January all clear. I chose only a lumpectomy, no radiation or medication. I also had breast implants after the all clear from my Dr. I've chosen to remain on my Testosterone pellets as they are vital to my sanity. I'm consciously maintaining a healthy weight and focusing on weight bearing exercises. Best wishes to you ladies out there worrying. I did plenty of that at first, but I decided to put it out of my mind and only worry if there's good reason to. It's helped!! Hope you can find peace too.

  • researcher50
    researcher50 Member Posts: 6

    Have been off the forum for awhile, but check in to see if others took my same path with their DCIS treatment. I, too, skipped the radiation after a lumpectomy in July 2021 and am on low dose Tamoxifen. For some reason, even though I am over 65, oncologist felt this was a better choice for me than an AI, Other than the first week or two of hormonal craziness, have had no other side effects. DCIS was 5mm/Grade 2 and DCIS score was a 16,so still felt low enough to choose my path. One thing people don't mention is that if you have radiation, you most likely cannot have it in the same area again. My thought was to 'save' the radiation as the big gun if needed.

  • Unagolada
    Unagolada Member Posts: 3

    Thanks for sharing this information. I am about to undergo a lumpectomy for DCIS stage 0, 1 cm, and am hesitant to undergo radiation and hormone therapy. I am gathering information to make a decision. Did you happen to make any lifestyle changes (e.g. diet, stress management, etc.) that may have positively impacted your outcome?

  • momzr
    momzr Member Posts: 7

    Unagolada - Good luck to you with your lumpectomy! I can't say that I really 'changed' much from the diagnosis. I have always been on the 'lean' side (as far as weight) and 'try' to eat healthy. I am now retired so a lot more 'stress free' and can't say my job was overly 'stressful' when working either. I will say I have been more conscious and dedicated to maintaining my weight and trying harder to exercise - mainly walking quite a lot and doing Zumba classes once a week. I hope things go well for you. As Researcher50 also stated, I was a little bit, too, of the mindset to 'save' radiation for down the road if needed. So far, so good.

  • minustwo
    minustwo Member Posts: 13,119

    Ungolada - the gold standard of care after a lumpectomy is normally radiation. However it may make a difference because of the size. However again - they may get in there and find more invasive disease. good luck

  • mountainmia
    mountainmia Member Posts: 857

    Unagolada, also, my understanding is that the only "lifestyle" behaviors that are proved to make a difference in outcomes are getting plenty of exercise and maintaining a healthy weight.