New diagnosis of IBC more than 1 year after BMX and chemo

cider8

Hello ladies! I'm new to IBC and quite scared. I was diagnosed with the rare but slow growing mucinous carcinoma over 2 years ago at age 39. Then common IDC found during mastectomy (had immediate recon), with 1 positive node. I had dose dense AC/T. About 1 year post chemo my plastic surgeon sent some tissue from recon revision to pathology and found a smidge of IDC. So I had radiation, ending just this January.



When I started rads I had a rash on my other (non cancer) side. My RO didn't know what to make of it, we thought it might be post surgical healing. MO wasn't concerned about it either. RO and I agreed almost a month later my derm should look at it. The rash was mottled and scaley, then flaked off back to smooth skin. No thickening or orange peel. Numb from BMX and no nipple. So it takes 5 weeks to get in to derm. At that visit skin was smooth and the mottling looked mild. She gave me steroid cream to try. At my 6 week follow up (last week), the rash had flared to a larger area and was scaley again. My derm scraped the scales and found a slight amount of fungus. She wanted the punch biopsy to rule out Paget's and see if it was eczema or contact dermatitis. She didn't talk about IBC but I see it was noted to look for an the path report.



So. I see my MO and BS today. Tomorrow is the PET scan (never had one). Almost one month ago my RO agreed I should have a baseline bone scan, so I had that and a CT. Both came back clean. So that is a bit hopeful! I understand the PET scan is better able to detect spreading of IBC.



I've been trying to find IBC info and what I do find scares me. Oh, I think good news is that it is ER+ PR+ and Her2-. But I've been on Tamoxifen for a year and a half! I am now 41 with 12 and 9 year old daughters. I will ask my doctors lots of questions, including how capable they are of treating IBC! Since, you know, two of them missed it.

cider8

PET scan showed only one axillary node involved. I got the Zoladex shot to shut down my ovaries. I will find out my treatment plan next week after the tumor board meets.

Beesie

Paula, I don't know a thing about IBC so I can't offer any advice or information.  But I wanted to send ((((Hugs))) and wish you luck with the treatment for this new diagnosis.  Hopefully you are able to beat this sucker into quick submission!

cider8

Thank you, Beesie!

Charz

paula, i am so sorry that you have been through so much. it is incredible to me that something like this can happen. i do know of a very long survivor if ibc, over 8 years without recurrence. i think it is very important to be at a nci designated cancer center for ibc though because you need a specialist for ibc. it is considered a more rare cancer and therefore not everyone knows how to fight it and kick its ass. i would find someone who deals with mostly ibc. im not sure, you might already be at nci designated center. also, md anderson specializes in it. johns hopkins and sloan are also good for this type of cancer. you may be very far away, but a second opinion or at least a pathology review might be important from one of these hospitals.  will keep you in my thoughts. 

ibc29407

If your just googling IBC and reading the articles you need to read the dates on the articles.  Alot of things have changed in dx and care with ibc.   There are specialists in ibc depending on how far you are willing to travel.  Your local onc doctor can also go thru a ibc specialist onc if they are unsure about a treatment plan.  Usually  you have chemo, surgery and then rads.  But since you have already done some of this your plan will be a little different.

cider8

I'm not at an NCI hospital. I don't think the NCI hospital in town has much IBC experience anyway. I have been thinking about going to MD Anderson. I will decide after hearing my treatment plan tomorrow.



Speaking of tomorrow, I feel like I'm about to explode with anticipation! The waiting sucks.

cider8

My treatment plan, IBC being treated as a new primary---

Chemo: cytoxan/taxotere starts Wednesday. 4-6 rounds, depending on how well I respond. The better I respond the more I get. No port.

Surgery: right axillary node dissection and removal of all remaining areola on both breasts (my nipples were made from areola)

Radiation: I will get the 2x per day regimen.



I will continue with Tamoxifen and Zoladex shots monthly (wait---I think the shots unless chemo shuts it all down; I need to ask about this one)



I put a call into the MD Anderson IBC clinic to see if insurance will pay for a second opinion there. I like what my doctors have planned but I want confirmation or treatment tweak from the premier experts. I hope it works out.

ibcmets

Paula,

It sounds like a good plan.  I was diagnosed stage IV ibc with bone mets from the start in 6/09.  I did taxotere, cytoxin & adriamyacin all at once, once every 3 weeks for 8 months.  A year after being stable, I did MBX.  I'm on Zometa for the bones & Femara for the last 3 years and have been doing well. 

I hope your treatment works well for you.  There is a site, ibcsupport.org that is exclusive to ibc patients.  You may find confirmation & more info there.

Terri

cider8

I had my first TC infusion today. I also found out MD Anderson is in-network for me. I'll get my appointment once my medical records are received. Can't wait to hear what they have to say!

Andrea623

Paula, I responded to you on BB, but I just want you to know I'll be thinking of you and praying for you. Please let us know what MD Anderson says. Stupid cancer.

Letlet

Paula, I hope you find your answers at MD anderson. Stupid, stupid cancer indeed.