IBC and Radiation

Never before heard any one call a type of breast cancer a "brand"!

The possibility of no rads was never mentioned to me.

They usually do radiation,as well as chemo, to be sure to kill all the cancer cells. There really is no way to know if they have "clear margins" with IBC because it is the lymph vessels which then goes to the lymph nodes.  IBC is so aggressive that even with negative nodes I wouldn't be comfortable with not having radiation. I want them hit me with everything they've got, which they did, to kill those cancer cells.  

I praise God I am now five years out from my first symptom & will soon be five years out from my diagnosis! NJ

Thanks Bonnie,

I felt very comfortable with my onc because he was so thorough in testing me.  From the start I had bone & Pet scan, MRI & brain MRI, biopsy.  My medical office is affiliated with UCSF and their tumor board, so my diagnosis went to the tumor board for suggestions on treatment.

Due to the tumor board and the fact that I had ibc, they wanted to be aggressive, but cautious.  Originally he would have put me on an AI to see if that would work before chemo & surgery.  We did PET scans every 3 months the first 1.5 years.  I kept seeing SUV values of the ibc and my breast was softer but still inflammed during chemo.  I believe he determined that I needed to do the surgery a year after chemo to get rid of the cancer source even though I had bone metastasis.  I was on Zometa with the chemo and it did wonders for the spinal bone mets. 

I did reconstruction and my skin right after BMX was white and clear again.  I understand why they say IBC is aggressive and dangerous.  I'm very glad to be directed to my oncologist and he's 10 minutes from where I live. 

Bonnie--we were diagnosed around the same time. You in March, me in June of 2008.

Happy Thanksgiving to all!

everyone ive known with ibc has had chemo mast then rads.

after my mastectomy i had mets on scar line, very small but they were there and small spot appeared 2cm below scar line.  during rads all shrunk but cant be sure if it was rads as was put xeloda same time.

x

suzilla hello,

you sound like your doing great and honestly for me the mastectomy was the easiest part of this journey.

to get the damn diseased breast off was a huge relief and i was so surprised how little pain as i had implants put in overseas in january 2012 and that was much more painful, in actual fact there was hardly any pain at all with mast,  just the annoying drains getting in my way.

was sent home the next day and not recommending this but i was fine to drive, drains were taken out on 4th day, scar healed beautifully ready for rads 5 weeks later.

for hospital always take your own soft pillow, dont forget the mobile & charger and before you know it you will be home.

good luck and please keep us updated on whats happening and ask as many questions as you need.

bon _ happy birthday just gone

sbelizabeth - do you know how many nodes were involved?

try and keep strong everyone.

xx