Have you had rads and TEs with no problems?

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I had a bmx with TEs placed on September 5. It was originally thought I wouldn't need rads, but my margins weren't clear, so I'll be doing 25 treatments. My PS and RO want me to get my fills before treatment begins.



I've read many stories about complications after rads with TEs. Please tell me some go on to reconstruct with positive results. I'm pretty nervous about it. Thanks!

Comments

  • mom3band1g
    mom3band1g Member Posts: 817
    edited October 2012

    I did!  I had all my fills before and my skin did great.  I ran through=out my rads treatments and I swear that helped keep my blood flow up and added in healing.  AFter I finished I stopped....just too tired.  But, I swear it helped.

  • HLB
    HLB Member Posts: 1,760
    edited October 2012

    A friend of mine did. What they did was overfill the rads side to make it bigger with more extra skin in case of problems. She also had allograft skin. I don't know exactly how they did it but it turned out good!

  • Andrea623
    Andrea623 Member Posts: 959
    edited October 2012

    Thanks for your replies! I sure hope there are more than just the two cases that went smoothly!



    Mom3band1g, did you use any creams or aloe vera gel during your treatments? How many treatments did you have?

    HLB, my PS is trying to fill my cancer side larger than the other side too. I'm glad to hear it worked out so well for your friend!

  • Jeannie57
    Jeannie57 Member Posts: 2,144
    edited October 2012

    I, too, had a BMX with TE's. I have had 18 of 25 treatments. My non-cancerous side TE was partially deflated prior to rads so it wouldn't be in the way of the beams. I was upset about it at first. Now I am thankful because it's more comfortable than the filled TE! I have been using Miaderm after treatments and aloe vera at night. The skin over the cancerous side TE is thinner and I can kind of see the TE but I am really sailing through this well. I will be having DIEP next summer. My PS says you have to wait six months at least to let the skin heal. There are more complications when you get permanent implants after rads instead of DIEP, although DiEP is a major surgery that I am not looking forward to. I will be re-inflated as soon as I am done with rads. You must still be catching your breath after your diagnosis and surgery! There is a lot of support to be found on these discussion boards!

  • mom3band1g
    mom3band1g Member Posts: 817
    edited October 2012

    Yes, I used x=claire.  I got it from my rad onc.  I did have to wait about 6 months before I could have my exchange surgery(after rads were done) and I did 28 treatments.  I would highly suggest you see a PT person after rads  are completed for massage and exercises.  I had issues with cording, stuck fascia, etc after treatments finished.  Nothing that I couldn't work with but if I hadn't had PT I think I'd be hurting for sure.  My ROM is excellent now!  2 years out and I am taking hot yoga and my arms work just fine....I still have moments of disbelief and gratitude.  When I was 'in it' I felt like my body would never function normally again. Let me know if I can help at all.

  • Andrea623
    Andrea623 Member Posts: 959
    edited October 2012

    Jeannie57, are you doing the DIEP because your skin has thinned out so much? Or because of the risk of capsular contracture? I don't think my PS does much DIEP reconstruction, and when I had asked about it, was told I don't have enough tissue on my stomach for it. I know some women end up going the LD route, but that sounds awful too. It's so difficult when all options do not sound ideal! He did tell me I'd have to wait at least half a year after rads for any more reconstruction. Are you going to NOLA for your DIEP? Yes, this has all happened so fast, sometimes it's still hard for me to believe I have cancer. I am still on an emotional rollercoaster. I do read this board, but sometimes hearing bad experiences causes me a lot of anxiety.



    Mom3band1g, thank you for suggesting a PT. Would it be helpful to see one during rads, or just afterward?



    Thank you again for your replies. I really appreciate the support!

  • Alirena
    Alirena Member Posts: 82
    edited October 2012

    Andrea623,  I had radiation (IMRT) after a double mastectomy with tissue expanders and Alloderm.  I had my exchange 6 months after my radiation was completed.  That was 7 months ago.  I haven't had any complications.  I can see some ripples in my implants through my skin but I wouldn't consider that a complication.  I wasn't expecting to have radiation either so I understand your anxiety.  I was very worried the radiation would ruin my plastic surgery but also worried I might have a recurrence if I didn't have it.  My tumor was large (lobular, 5 cm), the reason for the radiation.

  • Andrea623
    Andrea623 Member Posts: 959
    edited October 2012

    Alirena, I'm glad to hear you had a good experience! Did you get saline or silicone implants? I bought Miaderm to use and am going to pick up aloe vera gel too. Did you use them?



    I'll be so glad when this journey is over! Bet we all feel that way!

  • Nanam
    Nanam Member Posts: 21
    edited October 2012

    I had a UMX with TE followed by 28 rad treatments and did fine.  I had 2 spots that got a bit raw, but the rad techs are very helpful and I saw the rad oncologist once a week.  I was totally healed up a week after I finished.  I am actually getting more fills now and will have the exchange in the new year.  I think a lot of people who don't have any problems don't have a reason to post and it makes the ones with problems seem like they are the norm when they are not always.

  • Adey
    Adey Member Posts: 3,610
    edited October 2012

    I had rads with fully expanded TEs.  No opening of the skin, no blisters, did have peeling and redness and a kinda gross grayish color.  Achy and tired as time went on.  All good now with slight discoloration.

  • Andrea623
    Andrea623 Member Posts: 959
    edited October 2012

    Thank you for your reassuring words, Nanam. And Adey, thank you for all the information you've given me. I feel much better hearing your stories. :) 

  • itsjustme10
    itsjustme10 Member Posts: 796
    edited October 2012

    I'm about a year ahead of you.  I managed to hide from my RO until the fills were completed, and I have my exchange surgery set for November 12th - about 9 months after finishing rads.  My PS likes to get as far past 6 months, and as close to a year as possible.  I'm sure it'll be fine!!   I'm not anticipating any problems - I can't wait to for the swap!! :)

  • Andrea623
    Andrea623 Member Posts: 959
    edited October 2012

    itsjustme10, that's wonderful! I'll bet you can't wait to get these turtle shells out of you! I've only had one fill, and hate them already. Can't sleep comfortably, they look weird, and just don't feel good against my chest. My PS said to wait a minimum of half a year before exchange. That seems like forever away!

    Good luck with your exchange!

  • itsjustme10
    itsjustme10 Member Posts: 796
    edited October 2012

    Thanks Andrea. 

    I'm definitely looking forward to getting these things out, but honestly, in the scheme of things, I don't really complain about them.  They're different shapes, so I wear an open shirt over tank tops.    Sleeping is strange - my Lazyboy and I have bonded over this year - LOL.  Hang in there - the time goes faster than you think - for me, since I got my surgery date, I'm more annoyed by the TE's and more impatient for it to get here than I was for the whole rest of the time. :)

  • Adey
    Adey Member Posts: 3,610
    edited October 2012

    I had my TEs for 1 1/2 years, so long that I was actually able to sleep on my stomach with them!  Happy to see them go.  (c:

  • liefie
    liefie Member Posts: 2,440
    edited October 2012

    Andrea, I had a left UMX and SNB with TE, and the plan was to get an implant. When the pathology report came back, I had one positive lymph node which nobody expected me to have. That changed everything, and I had to get chemo as well as rads. The PS overfilled my TE before rads, to compensate for possible contraction. The 25 rads went very well, and I had no serious skin issues at all. Unfortunately now, 3 months out from rads, the damage is obvious. There is contraction, and the boob with the TE has become visibly smaller. My PS said she was going to fill it again to make sure there is enough skin to work with - not looking forward to that at all! The implant is not a possibility anymore, because I will definitely get capsular contraction. She will do a DIEP flap next year in May, 10 months out from rads.  

  • Andrea623
    Andrea623 Member Posts: 959
    edited October 2012

    Oh dear, so once you get capsular contraction, it's definitely something that would happen again if you had an implant? I know the risk of it goes up with rads.

  • mom3band1g
    mom3band1g Member Posts: 817
    edited October 2012

    Andrea623 - I did end up with some cc but  my ps 'fixed' it when he did my exchange surgery.  I had PT after my exchange but if you feel you'd benefit from it before then you should go.  It can't hurt!  The massage part of it was so helpful.  I never thought I'd feel even remotely comfortable with the TE's but by the time it was time for my exchange they really didn't bother me.  The exchange surgery itself is so much easier than the mast.  I still can't truly lay on my stomach without something uder my chest but I use a pillow and it's just fine.  The pressure of the silicone implants when on your tummy doesn't feel any better than the TE's (for me)!  Good luck!

  • fredntan
    fredntan Member Posts: 1,821
    edited October 2012

    I had 25 zaps. My te was filled to 500ml. I used miaderm exclusively. Usedthree bottles total. Had no issues. Had slight sunburn in arm pit. Now you can barely tell i had rads. My RO is amazed at my skin. When the miaderm ran out i slather on coconut oil over it nightly with a light massage. And i am foreever stretching my arm back out. I rest and sometimes sleep with it stretched out overhead.

    I just had some tiredness

    My first time for the planning session i had to keep my arm up forever. It was close to hour. Had to keep it still and couldnt move it. Wish ihad taken something. They did once week longer scan to check placement. These were only like 10 min. Nothing like that first one

  • Andrea623
    Andrea623 Member Posts: 959
    edited October 2012

    Thanks mom3! It's good to know the PS can fix the cc. I've been concerned about it. I worry that the implant recon will fail, and I really don't want to go the DIEP or LD route either. I'm tired of major surgery. Don't know what I'll do if I have complications.



    Fredntan, thanks for letting me know you had no problems. I've already purchased some tubes of Miaderm and aloe vera gel, so I hope they keep my skin in good condition. I've heard good things about coconut oil. Do you think it's what helped your skin so much?



    Thanks again to all who have replied!



  • liefie
    liefie Member Posts: 2,440
    edited October 2012

    Andrea, I was really hoping for an implant, and to avoid more major surgery, but my PS refuses to do that. I am one of the unlucky 40% or so who get capsular contraction after rads. The thing that sucks about it, is that there is no way of knowing before rads if you will get it or not. My hope is that my PS will be able to repair the damage next year when I get the DIEP flap which I never wanted. Sigh - this is hard! 

  • Andrea623
    Andrea623 Member Posts: 959
    edited October 2012

    Liefie, I sure hope I'm one of the lucky ones. I was told I don't have enough stomach fat for DIEP, and I just don't want anymore major surgery. If the implant route doesn't work out, I don't know what I'll do. Sometimes I feel like all our options suck.

  • Andrea623
    Andrea623 Member Posts: 959
    edited October 2012

    Bumping this up in hopes of more feedback.

  • sherry67
    sherry67 Member Posts: 556
    edited October 2012

    Andrea623,

    I had 6 1/2 weeks of radiation my PS gave TE with the ports that are on my side..I used Pure Aloevera I bought from cvs right after i had each Tx and used acquphor at bedtime had no issues with my skin at all..will be having exchange this month on the 23rd can't wait ...good luck

  • Andrea623
    Andrea623 Member Posts: 959
    edited October 2012

    Thanks, Sherry67! That's good to know. Good luck with your exchange surgery! It's going to be wonderful to get those TEs out!

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