IBC and Radiation

sbelizabeth

Did anyone NOT do radiation after their mastectomy?

My sister's BC is the IBC brand, and she's currently recovering from her ALND and double mastectomy, no reconstruction (of course).  She had neoadjuvant chemo before the surgery.  The path report shows all margins were clear, all her nodes were clear (although a lot of them lit up on her pre-chemo PET scan).  She mentioned her onc threw out the possibility that NO radiation might be necessary.

This sounds weird to me.  I would think with IBC they'd be throwing everything they could at whatever micriscopic buggers might be lurking.  What has been your experience?  Anyone give the rads a pass?  

Kicks

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

The possibility of no rads was never mentioned to me.

sbelizabeth

Thanks, kicks.

mrsnjband

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

ibcmets

I thought I had replied here before.  I did not have radiation and I'm still doing well and about 3.5 years out.  I did chemo for 8 months and a BMX a year later.  I'm now on Femara and Zometa.  I did Zometa for 3 years monthly and now having it every 3 months now.

My onc was very aggressive but wanted a couple tools saved for the future if needed. 

Terri

ibcmets

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!

ibcmets

Bon,

I don't know what I was thinking.  We are a little over a year apart.  I was diagnosed June 2009.

Terri

liv-

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 everyone!!! I hope u all find urselves well, and had a peaceful holiday season!! Also wanted to say thanks for all whom have replied to all my posts. I have finished all my chemo last one was in December . Now im scheduled for a modified radical mastectomy on my right side, and a simple mastectomy with sentinel lymph node biopsy on the left, then rads......im not supposed to eat after midnite the night before and am scheduled at 10 a.m. for surgery.......is there any advice, comforting thoughts, or suggestions for packing to hospital or the post op recovery and how to heal at home???

liv-

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

sbelizabeth

Hi, liv--hi, everyone--thanks for all your replies on this subject.  My sister begins her radiation treatments next week.  She wasn't told how many nodes "lit up" on her initial diagnostic PET scan, although there were quite a few.  They staged her at 3C.  It was wonderful news that her ALND was negative for malignancy, because it meant her chemo had done its job.

My own DIEP will be this spring sometime, with hers later in the year.  Talk about genetics! 

sbelizabeth

Thanks, Bonnie.  After her diagnosis I sent her a riddle--

At first there were none.  Then there were two, and then two more.  Then there were three, and soon down to one, to be followed by none.  But in a little while, there will once more be four!  Ah, the mathematics of breast cancer treatments between sisters.

liv-

there will once more than four.............and we will have an encore of no more.

xx

sbelizabeth

Yay!  Brava!