radiation recall.. or whatever this is?

mfml

Hello,

I spent quite a bit of time on these boards during my chemo last year and have been off some time.  I have been having a difficult time with my reconstruction - so am wondering if anyone has similar experience or advice?  Here is the summary:

-dbl MX Nov 2012 - TE's put in and filled

-AC every two weeks x 4, then 12 weekly taxol

-37 days radiation after little break (5 day boost to tumor area which happened to be right over incision!!!)

-8 months later... implants for expanders - here the trouble began.

Unradiated side perfect - healed no problem.  After about a week - a big red area formed around the incision - and it began to split apart.  Was same location and area of the radiation boost.  Dr. was worried it was infection - so in hospital for IV antibiotics for 3 days.  No change.  Decided it was "radiation recall".  I stopped taking my letrizole - thought it might be the cause.  I had to have a second procedure to cut the ragged edges and re-sew.  There is still a hole.. big, black ugly looking but not oozing - it's dry - and it doesn't hurt.  Playing it day by day now - going to PS for a look every week.  PS says it's not dangerous - but they may eventually have to take it out.  I am not ready to give up yet!

Anyone have anything like this??  My PS says to try to keep it dry - not to put antibiotic ointment on it - but I have read on some boards that ointment helps???  Any advice on this radiation recall or anyone with a similar experience - I would appreciate it!

Annette_U

I think I have radiation recall. It has been 4-5 weeks since rads were complete and I am getting odd red spider veins below boost area up to the scar on my radiated side. My chest feels numb and does tingle a bunch. The area under my left arm although healed and has now a tan seems like rubber and is also sore. Radiologist would not tell me what it was but has me on antibiotics and told me to go to E.R if it persists in a couple of days or gets worse. I am worried because it is spreading and hope it improves with the meds. Anyone know if this is Radiation Recall or Radiodermatitis?

auntienance

Annette, I don't know what you are experiencing, but radiation recall occurs when chemo is administered after radiation. Your RO should be able to diagnose and treat your skin issues. Hopefully you can get it resolved soon. Best wishes to you.

Kicks

Perhaps an appt with a Dermotologist might be in order.  A black hole sounds to me like spmething is going on that needs a bit more checking out.

cakes

Consider seeing a wound specialist. My scar opened up 5 months after my original surgery and 2 months after I finished rads. I had a revision of the scar at 5 months (Dec) and now it is a hole. I went to a wound specialist the beginning of March. The wound was cleaned out and packed with iodoform plus I am receiving daily hyperbaric oxygen therapy to help the wound heal. I was told the issue is caused by the radiation and doesn't happen to everyone. I guess I am just special.  

You may not need to have the HBO therapy but seeing the wound specialist was a good move on my part. It may be a good move for you as well. 

Good luck,

Cakes

mfml

Cakes - your case sounds very similar to mine!  We talked about a wound center and the HBO - but they didn't seem to think my wound would be a good candidate for that.  How is it working for you?  Is it healing now?

Annette - I was told that radiation recall can also occur from other medications - like taoxifen and letrozole - not only from the hard chemo.  I am still not sure that mine was radiation recall - it may have just radiation damage - dead skin with poor vasularization that wouldn't heal.  How are you doing now?  Is it getting any worse? Are the antibiotics helping?  When I first got the "radiation recall" or whatever it was - they admitted me to hospital for 3 days for IV antibiotics.  IT did not change a bit - that is how they concluded it wasn't an infection but was radiation damage.  Ugh - I am so sorry for you.  I know that is a scarey thing to watch... and not knowing WHAT it is makes it worse.

So - for an update - my PS sat me down last week and said enough was enough - she was pretty sure that it was implant right under the big black scab.  I was given the choice of removal - or lat flap.  I very reluctantly went for the lat flap... had it Tuesday.  So far so good - but I am only 3 days out.  My back is quite sore... I don't know what you women do who have the lat flap on both sides - must be terribly difficult to ever get comfortable.  She removed all of the area that had the radiation boost - an oval about 6 x 3 inches.  PS said that indeed - when she got in there - it was implant directly under the scab: no new skin or anything that would suggest it could ever heal. 

Well, thanks for sharing your experiences with me.  I do hope this flap "takes" and that this is it for me for awhile... we will see.

M

Moonflwr912

mfml, there are a lot of women who have had this trouble. They are on Exchange city or TE trouble board. Some have had skin pop open and had wound vacs or had to pack open incision. Some lost the TE to infection. Some have had flaps on one side implants on the other. You might want to check it out and see if there is any info to help. Much love. 

Renee51

Moonflwr912... You are exactly right! Wound specialist is probably a great idea for these ladies. 

cakes

My HBO therapy  was successful and my wound is healed. I still have a "divet" and a "pucker" but no open wound. I'm taking the summer off to heal my soul. Whew! 

I hope mfml has found a resolution to her issue.