Forum Discussion

ibceeyalater's avatar
14 years ago

I made it in!!

Hello Everyone,

I was diagnosed with IBC on the 5th March 2010.

I had 4xTAC then 4xTCH - four weeks rest, then Simple Mastectomy with Sentinel Node biopsy in Sept.2010. I know it's not optimal - but it was my decision.

 Everything went well until March this year when I noticed a familiar pink rash on my Right breast. I was travelling at the time, but managed to convince a Dr on the Gold Coast to do a biopsy. He rang me in Coolum (Sunshine Coast) to tell me it came back negative.

Not trusting this - I phoned the (extremely efficent) Oncology nurse and asked her to make an urgent appointment with my Surgeon. I had an appt for the arvo of the next day on the evening I arrived home.

She ordered mammograms and an ultrasound, which showed 2 "highly suspicious" lymph nodes in my right Axilla. One measured 3.5cm in diameter. She rang me at 6pm on the Thursday before Easter, to tell me they were cancerous.

Subsequent CAT scans showed no sign of metastasis in bones, brain, chest, abdomen or pelvis - PHEW.

My Chemotherapist decided to treat it as a new primary ie aggressively. I'm about to have my third cycle of FEC100, after which we will do the full CAT scans again. All things going well - I will then begin 12 weekly cycles of Herceptin and Taxol.

Bummer losing my hair again (aren't we vain creatures? That was my first thought - not the chemo - not losing my remaining breast - just the hair LOL)

Sue... I also live in your area - I'm  excited to find another person in this region.

Wendy - Claudia  (in the US) has asked me, on behalf of Patti  if I knew of an IBC specialist, from Melbourne, whom she met at an IBC Global conference in Houston, last year.

Are you able to help her? Perhaps the Dr McCArthy (sp?) in Brisbane may know of this person. She didn't say if the Dr was male or female. If you could contact either Pattie or Claudia via the website - it would be greatly appreciated.

One more thing before I go - last time I had to stop Herceptin as it dropped my LVEF to 48%. That has improved to 54% and I am now on an ACE Inhitor to help me when I start the Herceptin once more.

I'm soooo happy to find you all :) ... not happy we have to be here, but glad for the companionship of others who understand this insidious "thing".

Love and Light....

PS I had to edit this as I had too much identifying info on it. Lesson learned!!

2 Replies

  • Hello :)

    I'm trying to find the correct e-mail address for the ibc support group in the US. 

    Claudia... I know you receive and alert when ibc is posted.

    Wendy... would you be able to contact me with the address?

    I'm now Stage 4 as it has metastasised to my liver. Bummer.

    Many thanks,

    Lesley

  • Hello :)

    I'm trying to find the correct e-mail address for the ibc support group in the US. 

    Claudia... I know you receive and alert when ibc is posted.

    Wendy... would you be able to contact me with the address?

    I'm now Stage 4 as it has metastasised to my liver. Bummer.

    Many thanks,

    Lesley