Thank you so much for sharing this very important, and potentially lifesaving,
information, Edie. I have never heard of this before, and like you, I would
have put off having it checked out and just waited to see if it went away. You
can bet I won't wait if I ever see something like that now! I hope that the
guys will also read this and educate their wives!!!
Pat
Edith Millet <edie@...
Thanks for asking Lizanne, as I said, I love to educate people about
this,
and thanks for clicking on the link. Us IBCers hope that educating one,
educates many, please pass on this info to every woman you know. Also, you
can go to http://www.komotv.com/ibc and watch video's on ibc, they have
really embraced this cause. The video on this link has had over 10 million
hits.
Anyways, this cancer is a very sneaky bugger, in January 04 (like around the
25th) when I woke up I saw a redness about the size of a stick of gum on my
breast, I thought, that's weird, I must have slept funny, the next morning
it was back. I think it was only in the AM, I did not notice it later in
the day, not that I was checking or anything. The next 3 days, nothing, no
problems. The 4th day my nipple was bruised, now I was a bit concerned and
called my OB/Gyn, I was in with her within a couple of days. By the time I
saw her I could also feel thickening of my skin (on the breast). My Dr.
could not feel the thickening but could definitely see the bruise. She told
me to have a mammo (my last mammo was 5 mo's previous). I was leaving for
vaca 4 days later and did not make the apt. when I came back from my vaca I
called to sch. the mammo they could not get me in until right before my
period, I wanted to wait until after my period so I sch for a few weeks
later. In February there were no more changes, just the bruised
nipple. March started out with a rash developing on my hands (no thinks it
was related, I do), a few days later my breast looked pink and was itchy,
and warm and next to my nipple the skin became discolored, it looked like my
nipple leaked onto my skin. By the time I had my mammo around March
15th the above symptoms were there and now my breast was about a cup size
larger than the other one. At the mammo they took around 8 films of my
breast and 4 of just my nipple (man did that hurt!!!) and an ultra
sound. During this time I was also going to the dermatologist because of the
rash on my hands and showed them my breast too. The PA I saw said he had
never seen anything like that, and to use the cream on my hands and breast
and if after a week or so if it wasn't better come in and the Dr. would
biopsy it. My OB/Gyn called around that time to tell me that my mammogram
report showed thickening, no mass, no other problems, but they wanted a
biopsy anyway. I told her I was seeing a derm. about my rash and the PA
told me to come back, could they do the biopsy? She said yes, but she
wanted me to see a breast surgeon too. Well in the middle of all of this
were were going on another vacation. So I had a biopsy done by my derm as
soon as I got back, she took the discolored skin, and did cultures too, she
though I had an infection. The cultures came back negative, but the
skin came back as metastatic cancer, the cancer had leaked from my in my
breast onto my skin, that's what she took off. So the day I saw the breast
specialist, her office called the lab where the derm's biopsy was sent and
they faxed her a copy, and as they say that was that. My life changed
forever.
I was staged 3b, and had a 30% chance to live 2 years, 40% to live 5. (IBC
is only staged at 3b or 4, 4 is what they call metastatic, or throughout
your body). I was one of the lucky ones.
With IBC you go through chemo first, then mastectomy, then radiation. It
was a grueling year of my life, but in the end that is what I got LIFE :o)
Oh as a side note, we have absolutely no cancer in my family history, and I
was 41 when I was diagnosed.
Please learn as much as you can about this cancer, it is misdiagnosed
frequently, they usually believe patients have mastitis. 75% of physician
in private practice will never see this in their career. If a friend says
man my breast is acting weird, it's itchy, hot, my nipple is flattened, or
inverted, I'd say get to the Dr. go on the antibiotics (make them happy),
then insist on a biopsy. It is the only way to get a definite answer. I
have read many stories from other women who went to Dr. after Dr. been put
on antibiotics numerous times, and when they are finally diagnosed they are
stage 4. This is your body, fight for it.
Thanks for listening. Ask any question you want. And remember "you don't
have to have a lump to have breast cancer"
Thanks for letting me share.
Edie