Anyone with Mixed Connective Tissue Disease and had radiation?

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Poose
Poose Member Posts: 2
edited July 2017 in Just Diagnosed

Hello everyone,


I was just diagnosed with invasive ductal carcinoma (5mm), right now classified as stage one given the size and pending lumpectomy and node removal. I was just online researching the radiation component of the treatment plan and came across a line at breastcancer.org that states radiation is not recommended for people with connective tissue diseases so now I'm really concerned about the entire treatment plan that the surgeon laid out yesterday. Of course I will call their office today, but I'm curious as to whether there are other MCTD diagnosed people on this board who have had radiation. Thanks.

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  • SummerAngel
    SummerAngel Member Posts: 1,006
    edited July 2017

    I have MCTD and was advised against radiation due to skin involvement. I think it's less of a risk if you don't have skin-related symptoms, but I'm not sure that there is actual evidence of this. I ended up having to have a mastectomy regardless because I had so many areas of concern, and actually I'm glad that the decision was made for me. Good luck in your decision-making!

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

    Poose, while your surgeon may talk to you about 'typical' treatments, they are not the ones who are expert in rads (their expertise is in surgery). I have frequently read women on this forum say that their surgeons talked about chemo or rads and were not correct in what the surgeon assumed would be recommended. For that, you need to get a consultation with an RO. (you can go ahead and consult with an MO as well) Your RO will discuss the risks of local recurrence based on your specific information and the risk reduction that rads represents compared with the risks presented by rads in the context of any other comorbid health conditions you might have. You should try to get that scheduled right away, as sometimes people actually seek a second opinion if they are concerned about the recommended treatment or don't 'connect' with their initial RO/MO. Good luck!

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  • Poose
    Poose Member Posts: 2
    edited July 2017

    Thank you MTwoman. I haven't even been referred to a RO yet - called the surgeon Friday about that and he says that's "down the line". Surgery scheduled for tomorrow, will ask what "down the line" means then. Also have a call in to my Rheumatologist.


    Just a lot to take in. Appreciate your input :)



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

    Based on your original post, "now I'm really concerned about the entire treatment plan that the surgeon laid out yesterday", you shouldn't wait to do the MO and RO consult until after surgery. You need to have a plan that takes into consideration your existing medical conditions as well as the specifics of your bc. Sometimes, the surgery will make it more likely or less likely that another treatment modality is used. For example, rads are commonly used after lx, but it is less common for rads after mx. Radiation is used to reduce the risk of local recurrence, while chemo is used to reduce the risk of distant metastases. If you are concerned about the treatment plan that ONLY your surgeon has put together, you should consult with the other experts that will be joining your team NOW, rather than wait. ASK for the referral and don't take "I'll give that to you down the line" for an answer as you may not like the one he/she gives you and want to seek a second.

    Another option is if your surgeon took your case to the tumor board (panel of experts in the various disciplines) to discuss, also taking into consideration your existing medical conditions.

    This is the time to be a bit pushy. You need to feel good about your plan and a part of your treatment team. Good luck!

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