IBC roll call

Missy Terry, I of course am another, GG.  But if you will look down just a short ways in the subjects of this particular topic, the one entitled in caps, "IBC DIAGNOSED," you'll see that more than 400 women have posted there, which is not to say that is a total, but might help you in your coding project.  I happened to have a first-rate cancer center take over my care and my cancer physician is very good, so mine was a clinical diagnosis to start out, which I believe most are, but I don't know all the ins and outs.  But IBC symptoms are actually what sent me to see a doc, which was very rough and hard skin and swelling, cuz while I also had a 5cm+ IDC tumor, I never felt that, altho of course the growth showed up on the mammo they did when I came in.  GG

Hi Terry,

I've read about you on ibc threads and put my name to be counted on the  map.

Diagnosed ibc and idc with bone mets from the start in 6/09. I did chemo, BMX/Recon a year later and now on Femara & Zometa for the bones.  I do have more than occasional joint & back pain, but stable for the last 2 years.  I get Pet scans every 6 months.

Good to see you here.  I still keep in touch with the ibc board.

Terri

TERRY, my initials are GG, and also my nickname in some circles, but I'm Gail, you see where I'm from by my Avatar info, which my town is the only one by that name, it's in NC, and NED status since my treatments are done and my cancer is gone (as is my boob!).  Thank you for asking how I am doing.  But I reckon I should ask you how you are doing!  Did you have other cancers?  I had three in one breast! 

As for how I feel, much better after cancer treatments than I did before, much better in attitude and feeling physically sooo well.  However, I am disabled from a car accident, fractured three vertebra, and to this day it hurts and hurts.  Trying to get my neuro to do something with my medicines, on account of it hurts for hours after I get up, the it hurts if I try to do the least little thing like gardening, going to the store is awful and am trying to figure out how to get out of that chore, altho husband picks up slack when I ask.  He has a bad back, too.  And both of us have had cancer, he's a 25-year survivor.  I'm a 1-year survivor.  But other than being in pain all the time, I am a happy soul, albeit a tad melancholy, and crazy about dogs, miss my waist-long hair.  Bye bye!  GG

HI MRS NJ!  Always good to see you.  Encouraging noticing you're four years out, didn't quite realize it.  You were lovely to me when I first came here, and I think you are sweet to always be there for those who need someone to hold their hand.  GG

Terry, I saw your map. Effective visual I must say, but sad so many of us! My oncologist said it needs it's own classification system because it's just different from breast cancer.



I have put my name Vena, into your map. I would like to add another, my maternal aunt, Lois. I didn't have the BrACC gene but got IBC anyway. Lois was from Muskogee, OK. She passed away from it in 1995. the doctors had not a clue how to treat it so removed the affected breast. It returned in her lungs and she was gone. The only thing common to us both was that we were married to smokers.

Sent you a PM Terry.  Have a sweet day!

Dx 10/30/2010, IBC.  First misdiagnosed as infection.  My sister-in-law an RN suspected IBC, and encouraged me to keep insisting

on more testing.  I was fortunate in that I got a correct diagnosis in 2 weeks.  4 months of chemo.  Surgery.  Radiation.  Mine was estrogen receptive possitive, so I take a pill each day.  I still feel weak much of the time, and this is 19 months out from Dx and a year after finishing radiation therapy.  I am 66 years old.

Count me.  Darlene in Texas

Hey Terri!  I am in Charlotte, NC. Right now UNC-Chapel Hill doctors say I am NED. I am so thankful for right now. My doctors are awesome, and I am currently just on Herceptin. If anything shows up on a scan, they plan to look at other options then, but until then, they said no point in pulling out the big guns till we have a target. Hope your project goes well!