Long term side effects

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speech529
speech529 Member Posts: 337
Long term side effects

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  • speech529
    speech529 Member Posts: 337
    edited May 2010

    I have DCIS and am scheduled for a lumpectomy.  My path report says my DCIS is comedo type, grade 3 and radiation has been recommended but I am very afraid to get irradiated due to long term side effects.  I can deal with whatever comes in the short term (burning, fatigue, etc) but I am very worried about tissue changes in the long term (two years or more later). 

    My breasts are very small (AA) and I am concerned about how they will irradiate such a flat chest lying down.

    I saw a plastic surgeon who told me that you cannot really do much with an irradiated breast--due to tissue changes.  So I am concerned that I will limit my choices later if I think I want some cosmetic work done. 

    I would like to hear from people who are a year or more out from radiation.

  • chalex
    chalex Member Posts: 131
    edited May 2010

    Hi,

    I was in a research study and I had rads and chemo together. After that I got a mx on the right side. I have never been told I am not a candidate for reconstruction surgery. I was told I would need to wait a year after having rads to allow the skin to heal.

    Chalex

  • 3monstmama
    3monstmama Member Posts: 1,447
    edited May 2010

    I had a lumpectomy for DCIS and just finished radiation.  The first problem you have is that they don't really know how much DCIS you have until they do the lumpectomy and look at the margins.  Some DCIS turns out to be so extensive that for us small breasted women, it can be "better" to have a mastectomy because they can do more for reconstruction because most mastectomies don't need radiation [CAVEAT, some still do].  And as you have already been told, and as I was told by two very excellent surgeons, radiated tissue can have problems when it comes to expansion, so many plastic surgeons [including the two I talked to] will not do expansion/implants on radiated boobs.  But there is no real way to know where you will fall on the spectrum until you have had the surgery and there is no way to know until you have the radiation because we are all so different.  Catch-22, if you ask me.

    I think you have to decide what your priorities are.  In my case, I decided I did not want massive reconstruction so that ruled out the more complicated types of reconstruction surgery. But I also decided that I had never been that into my boobs and my most important thing was to be around.  So that ruled in favor of rads.

    Also consider where you will be getting treatment.  Centers that focus on radiating breasts have special equiptment that deals with the fact that you need rads on the left [near the heart] or you need rads and are small breasted.  This means that someone elses reaction may not be the best predictor of how you will react to rads unless they got treated at the same place you will be going and still, you need to factor in the difference with different people.

    I was surprised that I have reacted very well to rads.  I got red and I got sore, my boob swelled up and I got some blistering but all in all , it was not as bad as many people in my "group."  Also the skin that was the sorest and the tightest---under my arm--is healing really well now that my treatment is over.  I had my treatment at a breast center and my Zap Onco specializes in radiating breasts,

    Good luck!

  • driley07
    driley07 Member Posts: 3
    edited May 2010

    I just finished radiation treatment with contura , partial breast irradiation. I was also afraid of radiation due to side effects and limiting options later if there were a recurrence. With this treatment only the area where the lumpectomy was done is irradiated. Not everyone is able to have this type of treatment, but discussing all options with your doctor will make it easier for you to make an informed decision about your treatment. I wish you the best I know all this is very overwhelming.

  • Lynndee61
    Lynndee61 Member Posts: 6
    edited May 2010

    I had a lumpectomy in March and decided t do RadX but not Chemo....my oncocytDX was 17.  I'm really nevous about RadX.  In preparation for my Radx and seven week schedule, I had a CT scan done to determine the laser program and how it is going to be positioned to radiate my entire breast.  Anyway, my radiologist is having trouble coming up with a "program" that passes his specs.  Apparently, they want to do radiation so none gets on my lungs and the simulation is showing approximately 13% of my lung will be radiated.  Has anyone else experienced this issue with the setup of their radiation therapy program....I mean prior to actually starting radiation?  They had me come in today to do a PET Scan.  Tomorrow I go in for another CT Scan lying face down and hoping they can generate a program that will result in less radiation to my lung.  I just don't know what to think about this.

  • speech529
    speech529 Member Posts: 337
    edited May 2010

    Thank you for your responses.  I was told that I will need total breast radiation.  My entire care is being provided at a major medical clinic.  Once the pathology report is done on my lumpectomy, we will know what the next step will be. 

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