Muscular Dystrophy & DCIS--Effects of Radiation?

Options
scrappylady
scrappylady Member Posts: 43
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

Hi All...Wondering if anyone out there has muscular dystrophy and has already been through radiation? I have FSHD (form of MD) and DCIS (breast CA). I had a lumpectomy last week and will meet w/oncologist regarding radiation on 2/16. I am just really curious how others with MD have reacted to the radiation. My mom (who does NOT have MD) had DCIS and 3 months of daily radiation treatments and said she got progressively more and more fatigued as the treatments went on. My concern is that I already have muscle loss and get fatigued quite easily on a daily basis so am really concerned the radiation may put me out of commission as far as being able to work during it. I work in an elementary school in the computer lab so a lot of up and down and helping the little ones, plus trouble shooting equipment, etc. Any insight from those who have gone before me deeply appreciated. Thanks!

· Share on FacebookShare on Twitter

Comments

  • Galwayrose
    Galwayrose Member Posts: 3
    edited June 2012

    Hi Scrappylady. I just saw your post and am very much interested in how you are doing. I also have FSHD and was diagnosed with Stage 1 invasive breast cancer and DCIS in December and completed my radiation in March. Now I'm having lung and heart problems and my pulmonologist suspects that they are caused by the radiation but made worse by my FSHD. Did you encounter any such problems? Thanks for any help you can offer! Diagnosis: 12/06/11, Invasive ductal carcinoma and DCIS, Stage 1, ER+/PR+, HER2-

    · Share on FacebookShare on Twitter
  • Chatterbox57
    Chatterbox57 Member Posts: 1
    edited October 2012

    Hi to you both, Scappylady and Galwayrose. I am a newcomer to both CA and this site. Like you, I have FSH. I recently had surgery to excise stage 0 DCIS found near each other in 2 sites of 1mm each. Most docs feel radiation plus tamoxifen Is the way to go since the areas were so close and the lesions so tiny. Radiology oncologist is concerned that radiation may do more damage to chest muscle than surgery if I choose mastectomy. Based on your dates, you've likely completed your treatments and I wonder how you fared? I'd be grateful for anything you'll share with me!

    · Share on FacebookShare on Twitter
  • Galwayrose
    Galwayrose Member Posts: 3
    edited January 2013

    Hi Chatterbox57,

    I just noticed your response from Oct. By now, you've probably already decided how to handle your cancer treatment. I hope you're doing well. All I can say is that my doctor dismissed a mastectomy as unnecessary for treatment of my Stage 1, Grade 1 cancer. Instead, I had a lumpectomy and 30 radiation treatments that were relatively mild although I ended up with fluid in my lungs that had to be drained. My pulmonologist now maintains that the FSH is probably not linked to the way my lungs reacted to the radiation, but I am more inclined to think it is. In any case, I'm doing fine now and, unless the fluid buildup happens again, there's no need for me to take further steps. My oncologist wants me to take arimidex (as opposed to tamoxifen) for 5 years, but I have decided not to go that route because of the potential side effects of the medication. What did you decide? :)

    · Share on FacebookShare on Twitter
  • Liquablau
    Liquablau Member Posts: 1
    edited June 2013

    Hi scrappylady and other great posters,

    It would be wonderful if more members with MD could share their experiences. I also have FSH MD and was just diagnosed with DCIS and a 15 mm IDC tumor, grade 1. As the original calcifications looked only moderately suspicious, I only had a lumpectomy and no lymph nodes taken. They did not get clean margins and want sentinel lymph nodes anyway, so I decided to get a mastectomy which will hopefully spare me the radiaton, as I am also worried about its effects on my muscle strength as well as heart and lung function. But it would definitely be great to hear stories from other members with MD as it seems we face even more difficult decisions regarding BC treatment and preserving our muscle function. I'm not sure yet what adjuvant therapy suggestions I will receive as I have to wait for lymph node status, but as my tumor has been determined to be ER/PR positive, hormone drugs are definitely on the table. Also my BC is HER 2++ and I'm wondering about the heart effects and other side effects of herceptin. I'd definitely be very grateful for input.

    All the very best to all of you!

    · Share on FacebookShare on Twitter

Categories