A year on from radiotherapy

I girls are the same I finished in november2012 and still have the soreness. One radiographer said your boob is cooked no actually fried, and I thought that's exactly a true statement. My radioligist visit may , resulted in confirmation of a small group of women who get severe inflammation of the nerves and ligaments, you cannot touch parts of my breast or even bang it or I may strangle you! It will go away she said 3, months, weeks or years. But she wants to see me in 6months and not 12,Whoa! My lymphodemia is settling ,but the more I use the arm it does boob blow up. Funny enough ice gel creme helps and voltaren rapid tablets, for the nerve pain,l can only wear fayereform bras ,and if I wear anything else I suffer.and yes the itch god I love a scratch in the shower. So good to hear we are in the same boat, Regards adean

No only there is only one post.  I know how easy it is to put two though :-)  Can I ask how old you are inpink and what city do you live in?I think the main reason that seeing my surgeon was suggested as I am not due to see him till the end of the year and the scars, lumps and bumps are a bit strange and seem to be growing rather than going away.I had total lumpecctomy where I got an infection which lingered on until after I started chemo even after numerous antibiotics. Then total axillary clearance. Not sure why the lumps and bumps are growing?  I had a PET scan recently that showed I was cancer free so I not worrying about anything sinister.  I have been wearing Genie shapers (bra) which extend down below my nickers which is great because there is no line to cut in to my torso so I am luving them and nice and warm in the winter.  I do need to get a normal bra though as some tops don't look great with a genie bra under them.  I just wonder if I should get a proper lymphodema bra from Breastcare WA.Thanks for the info inpink but most of all thank you for putting it out there as it helps to know you aren't alone but I am so sorry you have had to be dealing with this issue as well.  There is hope at the end of the tunnel though by the sounds of it. Just means we can't move on in all ways just yet.Lots of love, Mich xoxoxo

No only there is only one post.  I know how easy it is to put two though :-)  Can I ask how old you are inpink and what city do you live in?I think the main reason that seeing my surgeon was suggested as I am not due to see him till the end of the year and the scars, lumps and bumps are a bit strange and seem to be growing rather than going away.I had total lumpecctomy where I got an infection which lingered on until after I started chemo even after numerous antibiotics. Then total axillary clearance. Not sure why the lumps and bumps are growing?  I had a PET scan recently that showed I was cancer free so I not worrying about anything sinister.  I have been wearing Genie shapers (bra) which extend down below my nickers which is great because there is no line to cut in to my torso so I am luving them and nice and warm in the winter.  I do need to get a normal bra though as some tops don't look great with a genie bra under them.  I just wonder if I should get a proper lymphodema bra from Breastcare WA.Thanks for the info inpink but most of all thank you for putting it out there as it helps to know you aren't alone but I am so sorry you have had to be dealing with this issue as well.  There is hope at the end of the tunnel though by the sounds of it. Just means we can't move on in all ways just yet.Lots of love, Mich xoxoxo

I hope I haven't posted this comment twice. Mich, did your physio say why she thinks a surgeon may help? I see my surgeon & radiation oncologist every 6months. They both agree my problem is a combination of full lymph node clearance, scar tissue and radiation and that they haven't seen such a reaction in about 15 years. My breast is exactly as you describe yours. My nipple often looks like an egg! Bras, where do I begin. I have endured all manner of problems. I bought a bra extender at Spotlight and this makes my bra more comfortably loose, I also wear a bigger bra for the same reason. It works ok. I can't stand the restriction of the bra around my torso & around the scar. I also wear an Ah bra and make snips along the back band for added comfort. During summer months I sometimes used a covered soft ice pack on my breast for a short while & this gave me comfort too. I hope this info has helped. Xoxoxo

Thanks heaps inpink.  I was seeing a lympho physio regularly for a while and then decided I could do the same thing myself at home so I have been treating it twice a day myself.  I did go back to see her again the other day as I got some cording under my arm.  She suggests I pop in and see her regularly but she also suggests I go back to the surgeon because of the amount of scar tissue and if he doesn't want to see me or not interested then to go to a private breast surgeon here in Perth of which I have been given the name who is very good with dealing with BC patience.  At least knowing I am not the only one out there with this revolting mass or is that mess makes me feel better.  I find it is very shiny, all sorts of different colours, the nipple blows up like it is a lil balloon, it hurts to touch and also gets itchy sometimes near the scars.  Like you say it feels better for a short time after treatment and then it becomes uncomfortable again. I find I can't stop thinking about it because you constantly feel it and know it is there. What type of bras did you wear?Lots of love, Mich xoxoxox

Mich I couldn't agree with you more. I ended up with a red, swollen blotchy yet pert breast which hurt to touch. I had weekly lymphoedema Physio who treated me with manual drainage. It felt Ok for a few hours then would be back to its swollen tender state. My physio & including my surgeon says they haven't seen such swelling in about 15 years. After about 8 months I reduced Physio appointments to once a month and now I'm down to every couple of months for assessment. All in all I think it just righted itself. I can now moderately exert myself without any issues and have gone from thinking about my uncomfortable breast from around 100 times a day to about 5 times. I'm taking a larger dose of fish oils caps which hopefully relives inflammation. Like you I thought post treatment I could put my BC thoughts to the back of my mind for a while and am so glad it's starting to happen now. Good luck, it will improve xxx

Thank you thank you thank you inpink!!!!I am over 6 month out from 7 weeks of rads now and I had mild arm lymphodema previously which was treated and is great now.  BUT it is the breast lymphodema and this horribly discolored thing I am meant to call a breast (I call it my alien).  How have you been treating your breast lymphodema if I can ask please?I find that this situation does drag me down as I am trying to move on and past BC but the pain, itchiness let alone the look of my "breast" is keeping me from doing so.  Thank you for your help and your positive words and if you can give me and maybe some other pink sisters suffering the same that would be wonderful.Lots of love, Mich xoxox

Thank you thank you thank you inpink!!!!I am over 6 month out from 7 weeks of rads now and I had mild arm lymphodema previously which was treated and is great now.  BUT it is the breast lymphodema and this horribly discolored thing I am meant to call a breast (I call it my alien).  How have you been treating your breast lymphodema if I can ask please?I find that this situation does drag me down as I am trying to move on and past BC but the pain, itchiness let alone the look of my "breast" is keeping me from doing so.  Thank you for your help and your positive words and if you can give me and maybe some other pink sisters suffering the same that would be wonderful.Lots of love, Mich xoxox

Thank you thank you thank you inpink!!!!I am over 6 month out from 7 weeks of rads now and I had mild arm lymphodema previously which was treated and is great now.  BUT it is the breast lymphodema and this horribly discolored thing I am meant to call a breast (I call it my alien).  How have you been treating your breast lymphodema if I can ask please?I find that this situation does drag me down as I am trying to move on and past BC but the pain, itchiness let alone the look of my "breast" is keeping me from doing so.  Thank you for your help and your positive words and if you can give me and maybe some other pink sisters suffering the same that would be wonderful.Lots of love, Mich xoxox