DCIS Radiation Treatment??

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lokroma
lokroma Member Posts: 3
edited January 2018 in DCIS (Ductal Carcinoma In Situ)

I was diagnosed with DCIS in late September, and had a lumpectomy in late November. I am now trying to decide on treatment. My tumor was small (.7 cm), and it appears that all cancer was removed with the initial biopsy. They took a good sized chunk of my breast with the lumpectomy, and that was clear. I have met with the medical and radiation oncologists, and they are pretty much leaving it up to me to decide on treatment. I will probably take an aromatase inhibitor since the tumor was 100% ER positive, but am completely up in the air about radiation. I was given personal percentages for recurrence with hormone therapy only, of 5% after 5 yrs and 8% after 10 years, based on an online app that the radiation oncologist used, but 2% and 3% with radiation and hormone therapy combined. She fed the app the various characteristics of my tumor to come up with the percentages.

Although I am meeting with the oncologist next week, and have all my questions lined up, I'm wondering if anyone here with a DCIS diagnosis has gone without radiation? It is my understanding that you can't have radiation in the same place again. and I would like to confirm this. I'm also confused about conflating percentages for the combination of radiation and hormone therapies since they have different functions (radiation to ensure all cancer is gone, hormone therapy to prevent future cancer). It seems illogical to me to lump them together.

I'm very confused and anxious about making the treatment decision, and while I know I'm lucky that they caught my cancer so early, I'm still scared. I wonder if anyone can confirm my understanding of my treatment options, and also if I should request an Oncotype DX test which I haven't had.

So great to have a forum like this!

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    • aquilegia
      aquilegia Member Posts: 83
      edited December 2017

      I went without radiation or any other treatment after my first DCIS diagnosis/lumpectomy. Two years later, more calcifications were detected and then I did decide to get radiation and 5 years tamoxifen. Even though the DCIS recurred, I think the original decision was reasonable. I was OK with betting I would end up on the good side of the statistics, as I knew I would be monitored closely and the docs could catch any new cancer early. It comes down to how much you tend to worry. I'm pretty good at putting low probability bad outcomes out of my mind, but many people aren't and will do anything they can to reduce risk.

      You are correct that radiation can only be done once to each breast. And it isn't 100% effective - that's why the hormonal treatment afterward - to reduce the future risk of recurrence. There are long-term side effects of radiation that you can read more about in these forums: skin damage, a bit of breast shrinkage, and in my case, I lost a bit of lung capacity on the radiated side.

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    • RR1966
      RR1966 Member Posts: 1
      edited December 2017
      HI. I WAS DIAGNOSED LAST OCTOBER 2017 DCIS STAGE 1,LUMPECTOMY AND LYMPNODE BIOPSY DONE LEFT BREAST .RADIATION 33 SESIONS DONE.ON HORMONAL THERAPY AT PRESENT COMPLETED 8 MOS NOW.AFTER FF UP WITH GYNECOLOGIST .SUBMITTED FOR HYSTEROSCOPY AND D&C LAST MOS. DUE TO MY FIBROID UTERUS HAD GROWN TO SIZE OF 14 WEEKS PREGNANT UTERUS AND FINDINGS RESULTS OF MY D&C THICK ENDOMETRIAL LINING- NO MALIGNANCY FOUND .AS PROPHYLAXIS TREATMENT .ONCOLOGIST FOR TOTAL ABDOMINAL HYSTERECTOMY WHICH IS BRILLIANT DECISSIONS.
      HOPEFULLY OPERATIONSWIL BE SUCCESSFULL.
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    • lokroma
      lokroma Member Posts: 3
      edited December 2017

      Thank you so much for your post! You are very brave to have gone through all those surgeries. It is very helpful, and confirms what my doctor said about DCIS: it kind of boils down to how much risk you can tolerate, since the mortality rate is relatively unaffected by treatment.

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    • lucysleeps
      lucysleeps Member Posts: 1
      edited December 2017

      Hello lokroma - You and I are on similar paths right now, and I too feel blessed to have had such an early diagnosis. One study I read stated, "it's felt that an involved margin is one of the most important prognostic factors for recurrence." My pathology from the lumpectomy came back with clear margins too so that provides some level of comfort. I haven't read anything that would indicate a decrease in mortality rates from treatment. I haven't met with an oncologist yet but have asked my surgeon for the Oncotype DX test and am awaiting the results. At this point, I need a compelling reason to continue treatment that out-weighs the risks associated with radiation and hormone therapy. Best wishes on your journey.

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    • CAMommy
      CAMommy Member Posts: 437
      edited January 2018

      I would take radiation over an AI any day of the week. I tried an AI and it made me miserable. My MO reassure me there is no concerns about not taking it. Radiation was hard on me and I burned badly but the AI was much worse in my opinion.

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    • kittenknit
      kittenknit Member Posts: 9
      edited January 2018

      What did you decide?

      I'm doing active surveillance and Essiac (herbs) because my DCIS is even smaller, but if I'd chosen lumpectomy with clear margins, I'd still forego radiation and AIs. The risks aren't worth it for me – 61, with a chronic illness that seriously affects my energy.

      You probably know that DCIS hx is unrelated to death from invasive cancer; I'd want to save radiation for when it might be more important.

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    • kittenknit
      kittenknit Member Posts: 9
      edited January 2018

      Just came across this article fyi,

      Ductal carcinoma in situ (DCIS) treated by mastectomy or local excision with or without radiotherapy


      Conclusion

      Although retrospective, our monocentric study suggests that LE alone could be an option for DCIS with good prognosis factors.
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