Deciding what steps to take after surgery

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melrose7
melrose7 Member Posts: 10

So I met with my oncologist, surgeon, and NP of radiation yesterday. I got more of my questions answered and found more about my dx. My DCIS is intermediate grade, 1.3cm, and located in one small area behind my nipple. I will schedule a lumpectomy today for either next week or the week after. I am newly 40 with no family history of breast cancer. I am torn on doing radiation and hormone therapy. The surgeon recommended both and told me to go off the birth control pill right away. But then the oncologist was on the boarder on me doing radiation and tamoxifen. And said it was a personal choice on staying on the pill. I know I don't have to decide right now on either since surgery is the first step. But I'm a planner and I like to have everything planned out. So how many of you did surgery only? I hate not having a certain answer from the the doctors. Doing the radiation won't guarantee it won't come back. I'm not liking the side effects of tamoxifen

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  • MTwoman
    MTwoman Member Posts: 2,704
    edited April 2017

    I did not do either tamox or rads, however my situation may have been very different from yours, you don't have your bc characteristics listed on your sig line, so I don't know if you're er/pr+/-, so I'm not certain. I was going for lx and rads, but I had multi-focal DCIS so it was mx for me. I had no MI so no rads were recommended and I was TN, so no tamox. I would have done either if it was recommended, although it did make me feel better to keep the option of rads open for the future on the right side. I was told to go off of the pill immediately (even before surgery), even though I was triple neg. I'm surprised that this is a "personal choice" per your MO, although it has been 14 years since my bc days, and things have certainly changed.

    You will ultimately have to choose which treatments you want, based on your personal risk and what the risk reduction of each treatment would be, weighed against possible side effects and your own risk tolerance. It isn't an easy decision, but you need to figure out what will be the easiest for you to live with.

  • melrose7
    melrose7 Member Posts: 10
    edited April 2017

    thanks MTwoman. I think I put my info into my signature (sorry, new to this site and situation). I am ER+ so I'm able to take tamoxifen if I want to. If I would do a mastectomy I know I wouldn't need radiation but I'm only going to do a lumpectomy. I wish there was just enough evidence on reoccurring rates for surgery only

  • MTwoman
    MTwoman Member Posts: 2,704
    edited April 2017

    once you put in your info on your sig line, you have to select that it be "public" so we can see it :)

    I think there is some evidence about surgery only, I'll look and see what I can find.

  • melrose7
    melrose7 Member Posts: 10
    edited April 2017

    got it. Thanks for the help

  • Happyinpa22
    Happyinpa22 Member Posts: 4
    edited April 2017

    Hi Melrose7,

    I had a lumpectomy and just started radiation. I opted for radiation because the odds of a reoccurance of either DCIS/Invasive BC were too high for me personally - 20%. I took an oncotype test and the feedback from my radiology oncologist to get information specific to my situation to make that decision. I will not take Tamoxifen as the side effects are too risky for me and not worth the benefits.

    Get as much info regarding your specific diagnosis. I think that and focusing on your goal will help you make your decisions.

    Best wishes,

    Laurie


  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited April 2017

    A lumpectomy alone plan is less common than lumpectomy plus radiation. To see how clinical consensus guidelines from NCCN and ASCO treat the option of lumpectomy alone, see my post from yesterday in your other thread:

    https://community.breastcancer.org/forum/68/topics/854451?page=1#post_4952312

    The ASCO guideline linked in that thread commented on excision alone:

    ASCO (Morrow, 2016): http://ascopubs.org/doi/pdf/10.1200/JCO.2016.68.3573

    "Treatment With Excision Alone

    Treatment with excision alone, regardless of margin width, is associated with substantially higher rates of IBTR [ipsilateral breast tumor recurrence] than treatment with excision and WBRT [whole-breast irradiation], even in predefined low-risk patients. The optimal margin width for treatment with excision alone is unknown, but should be at least 2 mm. Some evidence suggests lower rates of IBTR with margin widths wider than 2 mm.

    The EBCTCG DCIS meta-analysis showed that the 10-year IBTR rate for patients treated with excision alone was higher than with excision and WBRT, both for those with negative margins (26.0% vs 12.0%, P < .00001) and positive margins (48.3% vs 24.2%; P = .00004). [1] The same proportional benefit for WBRT was seen in women treated with local excision and those having large sector resections. In the Radiation Therapy Oncology Group (RTOG) 9804 trial where patients with small, mammographically detected low-to-intermediate grade DCIS and margins ≥ 3 mm were randomized to excision alone or excision plus WBRT, 7-year IBTR rates were 6.7% and 0.9% (P = .0003), respectively. [4] The prospective, multi-institutional Eastern Cooperative Oncology Group (ECOG) E5194 study of patients with low-risk DCIS treated with excision alone (negative margin width ≥ 3 mm) reported 12-year rates of IBTR of 14.4% for nonhigh grade DCIS ≤ 2.5 cm in size and 24.6% for high-grade DCIS ≤ 1 cm in size. However, IBTR rates did not differ significantly for margins < 5 mm, 5-9 mm, or ≥ 10 mm (P = .85).[23] A prospective single-arm study of patients with mammographically detected DCIS ≤ 2.5 cm in size reported a 10-year IBTR rate of 15.6% [24] despite requiring margins of ≥ 1 cm. [4] In contrast, Van Zee et al found in 1266 patients treated with excision alone that 10-year IBTR rates were 16% for margins > 10 mm, and increased to 23% for margins between 2.1 and 10 mm, 27% for > 0-2 mm, and 41% for positive margins. After adjustment for multiple factors, margin width was a more highly significant predictor of IBTR (P < .0001). [22] The MP felt that, overall, the heterogeneity of the evidence between the above-reported studies did not allow for a definitive recommendation for margin widths greater than 2 mm in patients foregoing RT."

    While there are retrospective, observational studies in this area, such studies have significant limitations. Here is a link to the 10- and 12-year outcomes from the prospective ECOG-ACRIN 5194 trial mentioned in the above passage, which assessed recurrence with excision alone:

    Solin (2015): "Surgical Excision Without Radiation for Ductal Carcinoma in Situ of the Breast: 12-Year Results From the ECOG-ACRIN E5194 Study"

    http://ascopubs.org/doi/pdf/10.1200/JCO.2015.60.8588

    This led to some discussion:

    Shah (2016): "Radiation Therapy and the Evolving Definition of Low Risk in Ductal Carcinoma in Situ"

    http://ascopubs.org/doi/full/10.1200/jco.2015.64.9202

    Authors' Reply to Shah (2016):

    http://ascopubs.org/doi/abs/10.1200/JCO.2016.66.4714

    As you note, a personalized risk/benefit analysis will be undertaken on the basis of the combined pathology results from all surgeries and biopsies. In addition to young age being a risk factor (per my reply in your other thread), the results of the surgical pathology may significantly impact understanding of your recurrence risk profile (e.g., margin size, grade, extent of DCIS), or even presence of invasive disease seen in about 20% of cases overall, which may render moot consideration of foregoing radiation for some patients.

    BarredOwl

  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited April 2017

    Given the seemingly contradictory advice you received about birth control pills, perhaps you should seek some additional expert advice on that question. In the meantime, you can check with your pharmacist or access the latest FDA label for the exact birth control pills you use to see if there are any warnings about use in patients diagnosed with breast cancer.

    https://www.accessdata.fda.gov/scripts/cder/daf/

    At least for those on Tamoxifen, the FDA Label for the brand name product provides the following:

    "[Tamoxifen] NOLVADEX may cause fetal harm when administered to a pregnant woman. Women should be advised not to become pregnant while taking [Tamoxifen] NOLVADEX or within 2 months of discontinuing [Tamoxifen] NOLVADEX and should use barrier or nonhormonal contraceptive measures if sexually active."

    Those on Tamoxifen should specifically discuss this with their medical oncologist.

    BarredOwl

  • Lorri70
    Lorri70 Member Posts: 191
    edited April 2017

    Melrose7, I am 46 had dcis diagnosed In October had lumpectomy and 15 sessions of radiation it never even occurred to me not to do radiation I want everything thrown at this I started tamixofen in March was dreading it I'm ok so far k never want to revisit the last 6 months again I was told by oncologist that I was to have radiation and it was my decision about tamixofen I decided I'd nothing to loose trying it so I decided I'd take it for 6 months no matter what side effects were so we'll see how it goes

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