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Aug 21, 2018 03:23PM
Aug 21, 2018 03:40PM
As usual anything that happens to me is different than the way it happens for most.
On my lumpectomy scar exactly where they did the radiation boosts 10 years almost to the day, I noticed a red bump. Bright red (not those dark red dots we get as we age) and it sort of looked like a pimple but no white head on it. Dr had me wait a bit to see if it went away and it did not. It did not hurt, but was a little tender. Core biopsy showed secondary angiosarcoma (caused by the radiation treatment which was 35 treatments and 3 boosts.)
(different than primary breast angiosarcoma)
I had a wide excision with very wide clear margins. It all healed well and lab showed nothing in the entire specimen removed. The consensus was it had all been removed in the biopsy.
One year almost to the day another similar spot right near the boosts scar. Dr did a core biopsy that day .... was not going to wait this time. It was secondary angiosarcoma again. I had another wide excision to get it out as soon as possible. This time margins were clear but close.
Since surgery is about the only and best treatment ( chemo doesn't help much and if course no more rads) we decided on a mastectomy getting as much radiated tissue and skin as possible. The entite specimen had no cancer of any kind. Thinking and praying it had all been removed in the wide excision.
My dr in practice over 40 years had only treated 3 cases and 2 of those were sent to him from other drs. Only 1/2 persent of people getting radiation treatment ever get Sec. Angio. My dr also said it was the smallest he had ever seen ..... and low grade, because most women wait too long thinking it is nothing and it is mistaken for infection etc. so often.
Most cases present as purplish blue bruise areas and are dx as radiation fibrosis.
I had many biopsies on that breast (at least 5 or 6) through the years after 04 that were purplish bluish bruised looking areas and none of them were cancer.....they were indeed just radiation fibrosis and inflammation from raduation.
Biopsy is the only way to dx Sec. Angio.
I had to have a lat-flap to cover the huge area removed and me being me .... half of that went necrotic and I had a surgical debridement, and a split skin graft from my leg to cover that area.
I chose not to have reconstruction because of all the issues I have with everything.
That was 2014 and 2015. 3 years this month and so far so good......until that doggone deer fly bit me.
(Now you all know why I went bonkers when my PCP thought cancer...in my arm...although the arm would be extremely unusual place for sec. angio to appear. )
If you google Sec. Angio it will scare you to death.....but there are a lot of survivors out there. I am in contact with a lady that is 13 years out and doing well. We both watch ourselves closely and report any changes immediately to our Drs.
It is very very rare, but something to be aware of. I asked my dr why we are not told about this possibility and he said "Because no one would get radiation and the death rate would be much higher" (I was not pleased with that answer)
Now they have ways to check to see if radiation is necessary, also many don't require what was standard back in 04.
I hope this answered your question and I hope it does not scare the bee geebies out of you. It is RARE RARE RARE!
Org dx 04 lumpectomy rads arimidex stage 1 grade 3 no nodes er+pr+her- 2014 rads induced angiosarcoma, wide excision 2015 angio recurrence, rt mast. Lat flap, 1/3 flap went necrotic, skin graft leg to chest Seeing dr every 3 to 6 months.