hi,
i have been following this site since my sister was dx. with
ibc stage 4 back in sept. 05. i kinda lost track of it for a
few months while she was getting chemo but now i am looking
for info that could help her.
she presented with swollen left breast,literally
overnight.sent for mammogram,negative. gyn dr. examined her
and sent her for ultrasound which showed up suspcious areas
in breast, immed. a guided biopsy in xray done which came
back mixed infiltrating and ductal carcinoma of high grade.
sent to gen surgeon who gave the above path report to us.
i had looked up breast cancer over the weekend and was
concerned about this possibly being ibc. so as dr. was
giving the options of lumpectomy verses mastectomy i kept
thinking about what i had read on this site. oh, by the way
my sister and i are both rn's and have worked in operating
room for over 16 years. finally i got the courage to ask dr.
if she could possibly have ibc. he said "no because
she did not have the classic symptoms of reddness, orange
peel skin. i then ask is it not true that ibc is often
misdiagnosed. he said yes that does happen. he went on to
tell her she had time to make her mind up on which surgery
she wanted.
i had this gut feeling that we needed to get a second
opinion because everything i had read about ibc stated you
DO NOT DO SURGERY FIRST, IT IS CHEMO, SURGERY AND THEN
RADIATION.well, she went ahead and scheduled surgery for
left simple mastectomy with sentinol node biopsy with
immediate reconstruction for the end of the week and was
sent over to a plastic surgeon for consult. when we got
outside of the surgeon's office i told my sister she had to
get a second opinion. we called a breast surgeon specialist
in town and made a appointment for the next morning.she went
ahead to the plastic surgeon who went over reconstruction
with us.i still had this bad feeling of what if it is ibc? i
even mentioned it to this dr. who looked at me and stated
after examing her "she does not have ibc".well,
he was wrong and the surgeon was wrong. we went the
following day to breast specialist who examed her and said
right away, we need to get another biopsy because she did
not like the way her
breast was swollen and she said what she had learned about
breast cancers is none are the same,she mentained ibc
without me saying anything. she did a punch biopsy right
there in the office. it came back the next day, ibc. of
course surgery was canceled. she was sent to oncologist. he
examined her and felt a supraclavicular node in addition to
her already noticed axilla node.he mentioned stage 4 because
of this sc node.she was then sent for all the scans,
petscan, brain scan which were neg. except nodes in axilla
and supraclavicular. that was good news.needless to say
everybody commended me for getting that second opinion after
the fact.she got port a cath put in and started chemo immed.
taxel and herceptin. she was er neg. then she got fec. i
cannot remember how long. but she continued getting
herceptin all along. i kept asking her when was she going to
be scanned again. she stated her onc. said it was not
neccessary because he would be able to tell if chemo was
working b
y whether the sc node went down. i did not like this answer
but he was the dr.after 5 and a half months of chemo onc.
said she was ready for surgery becauce her breast looked
normal and sc node down. still no scans before surgery. she
had left mrm with full axillary node dissection almost 3
weeks ago.12 out of 14 nodes positive and cancer in axilla
had spread out of lymph nodes. not good. whole family was
devistated. we thought chemo was working. had ct scan of
chest, abd., and pelvis. all neg except lower back. sent for
bone scan, something on both trocanter( hips) flat plate
ordered today.they think it is just arthritis. onc. has
talked about giving her navelbine after she finishes
radiation which is to start in one week.no brain scan done
yet. onc. stated since she has had no h/a not needed. i told
her i would get one anyway, since this type cancer is so
unpredictable. my question is SHOULD SHE STILL GO GET SECOND
OPINION SOMEWHERE ELSE, just to make sure we are on rig
ht track.i was wondering has anybody heard of giving
radiation along with navelbine.i just want to make sure she
is getting the best treatment there is. she is only 47 years
old. she has done great with chemo and surgery. she is an
amazing person. she went back to work after only less than 2
weeks postop. she is very strong willed and i know she can
beat this but only if she gets the right treatment regimen.
any help would be appreciated.this is the best sight for
info.on ibc. thanks.
concerned sister
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