Radiation therapy with subpec TE - help!

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JulieSim
JulieSim Member Posts: 94
edited July 2019 in Breast Reconstruction

I am looking for some advice with my subpec TE. I will be starting radiation therapy in a few days, so I am short of time to make a decision.. Everything went fine with the expansions up to my last TE expansion from 540 to desired 600ml. The volume made me so unexpectedly uncomfortable, with lots of pain in the area, pressure and shooting nerve pain going to my arms and upper back.

I have been already at the stage when I was gradually going back to my regular activity and finally started sleeping at night. And this last expansion changed everything. Since I also have scoliosis, I can't find comfortable position at night, even when I am sitting up high with multiple pillows, and the first 2-3 hours in the morning are very painful too.

I can either leave it and hope for the best, or take some saline from the expander prior to my planning CT. After the planning CT is done, changes to expander cannot be made anymore, and it's booked for beginning of next week. Also, usually expanders are very temporary, but I will have mine for at list another 8 months.

If someone has been through radiation with TE, could you please share your experience? My nurse is suggesting it might get better as time goes by, but I am wondering what usually shrinks during radiation- my skin, or expander, or both?

Thank you!

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Comments

  • Runrcrb
    Runrcrb Member Posts: 577
    edited July 2019

    Julie, what type of reconstruction are you planning? I only had one fill after the fill during TE placement so I can’t advise on what you’re feeling. I had 33 radiation treatments (3 each time) and for me i was in pain from the first week. I would not advise going into radiation already in pain. I found that radiation and the subsequent healing contracted my breast- I didn’t really notice it until I looked back at the pictures I took over the two years (yes my phone was full of boob shots). I had DIEP flap reconstruction - my pectoral muscle was put back in place and the lower half of my breast is made from belly skin due to radiation damage. Skin just isn’t as supple after radiation.

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  • JulieSim
    JulieSim Member Posts: 94
    edited July 2019

    Runrcrb - I was planning subpectoral implant on the surgery side. We didn't know back then that I will need radiation. Knowing that the breast will contract they are trying to save as much skin as possible.. as a result they did this extra expansion. It was done for a reason, but I don't know how I am going to survive it.. I have been off work since the surgery, and I am so scared of another 7-8 months of pain.

    Have you had your expander for that long, two years?..

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  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited July 2019

    Julie, can you put off the radiation for a week or two so that you have time to find out about all your options. Starting radiation with pain sounds very challenging.

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  • JulieSim
    JulieSim Member Posts: 94
    edited July 2019

    Cowgirl13, thank you for your response! I was supposed to start radiation therapy already, but luckily I requested to postpone my planning CT and we went on short vacation with my family. Two days before vacation I did my last expansion and it changed everything.

    So now my PS wants me to make a fast decision about whether or not I want to reduce the volume of the breast so that we don't postpone the CT again.

    Your words make a perfect sense to me, I should probably just ask for another week and see how I am feeling!

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited July 2019

    Julie: I had radiation with my sub-pec implants in place after a recurrence. Luckily both the surgeon and the RO were able to work around the implant. The skin, tissue & muscles & nerves contract with radiation, but not the expander. Also there may be scar tissue. The skin eventually loosens up, but you have to manually stretch constantly, forever after rads or things inside snap back like a rubber band.

    Once my TEs were full, the pain was not good. I had 3 or 4 months for everything to settle before the next procedure, which helped, but I had them stop the fills before the PS was ready. Personally I would have some of the saline taken out of the expander before rads. That might mean a smaller 'finished product', but it's not worth the pain.

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  • JulieSim
    JulieSim Member Posts: 94
    edited July 2019

    Thank you MinusTwo! I can only imagine how pain can be like if the expander remains at it's current volume and the tissue around contracts. Yikes.

    And I will have to agree with you on 'finished product ' vs pain. After reading the comments the plan is - wait for a few more days, if pain gets better - ask to postpone radiation therapy and start it w/no pain. If not - I will be certainly decreasing the volume of TE.

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