Hi
Thanks Theresa for pointing me to this IBC subforum.
As you say there are not many of us IBC ladies about. My IBC was picked up very quickly by my hospital. I was on holiday last year and found a lump under my arm in what I now know to be a lymph node.I had had a clear mammogram only months before so was not in the least bit worried. On checking the internet it said it was possibly an infection, not to worry but wait and see. Weeks later when a large lump materialised in my breast together with a pinking up of the skin and a warmer than normal feeling I took myself off to the GP. She immediately refered me to our breast clinic where they did ultrasound and biopsies. I expected to be told it was mastitis and went alone to the results clinic where the surgeon dropped the bombshell that it was BC and in fact a rare type of BC called IBC. His estimate was 1-2% of diagnosed BC is this type.I saw an onc immediately and within 2 weeks had had MRI, CT and Bone scan and was started on chemo, 4 AC/4Tax.
Surgery followed in February this year. I requested that the’healthy’breast was removed along with the BC one because of a really bad family history. I was in and out of hospital inside 24 hours into the care of an Early Discharge Team. The drains and seromas caused a bit of a problem which delayed rads but am now 9 down with 6 to go.
Now I have found out a bit more about IBC and its terrible survival rate I try to tell myself that I am the one who is going to beat the odds. That is on the days when I am wearing my sensible head. On other days when my Panic head had attached itself I find myself in a very dark place considering how my family will carry on without me.
I finish rads next week, then continue with a year of Herceptin of which I have had 8 out of 18 doses so far, and 5 years of Taxoxifen, although 2 different oncs have suggested 2 different drugs One is Tamoxifen and the other one begins with an L and at the moment the name escapes me(Do we ever recover from chemo brain). I hope I can continue life without becoming too paranoid about secondaries. My oncologist comments try not to worry too much, Let us do the worrying for you.Some Hope!
This site sometimes reassures me and sometimes frightens the life out of me. It depends which threads I read and my frame of mind at the time.I have not come across anyone else at my hospital with this type of BC so the contact here with other IBC ladies is invaluable.
Thanks everyone for your support
Andie
Must admit this section is alot quieter than most on here as there are so few of us…