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Lumpectomy - no rads age 40

love4future Member Posts: 3

I recently had a lumpectomy for low grade DCIS. The pathology results showed all DCIS was removed at biopsy, so clean margins with atypia only. BS thought I could avoid radiation provided these results and my history of uncommon reactions to medicines. RO states it is my choice, however, per my younger age would still advise radiation. RO also states I would lose at least 10% lung to rads and the development of a rad induced sarcoma is rare, but also potentially far worse than a recurrence. DCISonRT score was 0.8 but only goes to 10 year assessment so RO says it is irrelevant. I'm struggling with the decision being my own and wonder if any other “young" DCIS patients have foregone rads in a similar situation.

Feeling the weight of the what ifs and not sure which choice would offer less regrets…


  • ratherbesailing
    ratherbesailing Member Posts: 129
    edited July 2022

    Sorry you're going through this. Not certain what you mean RO says you would "lose" 10% of your lung? The lung always gets some radiation during treatment, but it doesn't usually damage the lung unless the dose is pretty high - the stats ROs usually give is a 1-2% chance of lung damage. And what is the chance of a sarcoma? Does your previous experience with meds make you more likely to have complications than is usually the case?

    Remember that radiation is primarily for local control, while chemo and estrogen suppression (for ER+ tumors) are systematic. ROs say there is still a systemic benefit - one stat bandied about is that for every four local occurrences prevented by radiation, one distant recurrence is prevented.

    Sounds as though your BS is trying to protect you, and if you are ER+ and stay on tamoxifen that might give you the best chance of avoiding a recurrence. And my gut instinct is RO's usually advise radiation. But only your physicians know you and really know the science. I would suggest you get a second opinion with another RO. Just make certain they have your complete medical history. And your doctors should be able to give you recurrence-free stats with/without radiation and with/without tamoxifen, if appropriate, to help you decide.

    Hoping you come to a place you are at peace with...

  • researcher50
    researcher50 Member Posts: 6
    edited July 2022

    I am a year out from having a lumpectomy for intermediate DCIS (but very low Oncotype DX score), and chose to have no radiation. The location of my DCIS was very close to my chest on the left hand side, so radiation could have been an issue for both my lungs and my heart. As a result, my MO and I decided to go the Tamoxifen route. One thing I was told was that if I opted to do radiation, that same breast would probably NOT be able to have radiation a second time. So my thought was, I would take the Tamoxifen now without radiation, and if I had reoccurrence, I would do radiation then. I am 70, so I have no idea if my MO would have advised the same at 40. It was not an easy decision as the treatment push is for radiation, which meant I didn't get a bunch of support except from my MO. :)

  • quietgirl
    quietgirl Member Posts: 165
    edited July 2022

    one of the stats you will often see is that radiation with a lumpectomy gives you roughly the same chance of “reoccurrence” in the same breast as a mastectomy (because that’s the theory that radiation will get any stray cancer cells). But of course we are all different no matter how similar we seem on the surface, there are always things that can make a difference in your treatment plan. For example there was an article that came out in June where they followed a group of women with a specific marker(or type of cancer) who didn’t receive radiation who were younger (in their 50’s) than previous studies and found that the majority of them did okay without radiation. That’s my long way of saying while you might not find anyone your age on the board who has skipped radiation that doesn’t mean it’s not a possibility. Wishing you peace in whatever decision you make.

  • khakitag
    khakitag Member Posts: 19
    edited July 2022

    Hi there, I am two years out now from my DCIS dx and lumpectomy onleft breast Mine was grade 2 and small. I opted to do nothing other than lumpectomy, no rads or tamoxifen. I struggled with the whats ifs when making my decision, but my quality of life is excellent and I don’t know if I could say that at this point if I’d gone the other route. I was 48 at DX. I am very fit, exercise regularly and maintain a healthy BMI. My advice to you, is go with what feels right for you and don’t second guess. Best to you.

  • icouldreallyuseacupcake
    icouldreallyuseacupcake Member Posts: 16
    edited July 2022

    Hi Love4Future,

    I was diagnosed earlier this year with DCIS, and I’m 39. I understand how hard this decision is, and so sorry you are going through it. After lumpectomy for LCIS when they then found DCI, I asked my surgeon if I could forego radiation, her response was a hard “no.” Her exact words were that it is the “current standard of care.” I never got a second opinion, though, and I also don’t have any other health concerns. My family history with BC is really bad, and getting a DX of both LCIS and DCIS at this age led me to opt for a bilateral mastectomy, which I had a few weeks ago. Please feel free to reach out if you want to chat further. Sending all the best.

  • momzr
    momzr Member Posts: 7
    edited July 2022

    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 (removal of all DCIS and margins 'clear' but one, although 'clear' was a 'close' margin). I chose no additional treatment. A week after the 2008 biopsy, the medical oncologist told me my tumor was so tiny he thought there was a miniscule chance it would cause me problems down the road and 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 agree with ratherbesailing statement that RO's will more than likely 'recommend' radiation). 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 in May 2016 (at age 75) and took an AI for five years - having my Mom also get diagnosed does worry me a little more when I go for screenings, but am super happy to be about 14 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.

  • cowgirl13
    cowgirl13 Member Posts: 782
    edited July 2022

    quietgirl, thanks for posting the link.

    Some points from the study -

    "Gene testing helped doctors identify a group of women who skipped radiation therapy because their cancer showed very low risk of coming back following surgery, according to findings presented Tuesday at a meeting of the American Society of Clinical Oncology (ASCO), held in Chicago".

    five-years of follow-up

    Findings presented at medical meetings should be considered preliminary until published in a peer-reviewed journal.

    Love4future, I would definitely suggest getting a second opinion from another radiologist. Good luck!

  • thrownforaloop
    thrownforaloop Member Posts: 5

    I had just the lumpectomy with clear margins for my small grade 2 DCIS, age 42. They did advise radiation and tamoxifen, but I declined as I would like to have those as available treatment options should I have recurrence at some point in the future. I did try Tamoxifen but found it intolerable. I go for my screenings, likely if something pops up it would be small (and treatable!) My health and quality of life is excellent, and I hope to be able to maintain that for as long as possible. Good luck!