kaye301

I had mentioned in my other post about sharing an article about skin mets that
resembled shingles to my surgeon. I also sent it to the private dr. who has
co-authored a book on cancer that we saw for a second opinion. He had
originally been referred to me soon after dx by the head of the IBC
(inflammator breast cancer) email list group. He had told my husband that I
had the most complicated breast cancer he had seen (not very reassuring). He
wanted to work together with us as a team (which we appreciated but I had
thought he flaked on us--won't get into that). Anyway, yesterday I got an
email from him thanking me for the article and the other new ones I had sent in
the recent past re the different patterns/presentation of lobular. He told me
he was leaving for the June ASCO breast conference today in New Orleans and
planned to find out as much as he could re. what was 'new' re lobular.
I don't know if I had mentioned this here or not but we had taken my scans to
be read privately by a radiologist a couple of months ago who had published
findings about the different presentation of lobular. He also didn't make me
feel too secure when he told us (husband and I) that we knew more than 90% of
the professionals (re. lobular). That was not too reassuring. It was even
less reassuring when we shared a newly publised article with him that had a lot
of similarities to what was going on with me. He told us that was all new to
him and then referenced my situation and what he had known with that article.
Something is very wrong with this picture--that me, a lay person, is bringing
information to the physicians which include the "so-called 'experts' in their
field" who are treating me. I know there has been an explosion of information
that is readily available to all but it doesn't make me feel too good to learn
that the professionals out there are not that up to date on the second most
common type of breast cancer even if only 8 to 12% have it. There are more
cases of lobular breast cancer than there are of other cancers (such as ovarian
cancer, I think).

guesswho

A skin biopsy is very very easy to do, my husband has them all the time, the
dermatologist does it in the office.
That would solve your skin question.
I heard on the radio today that Mass General Hospital has a new test which
determines who will be successful with tamoxiphen ( I assume it would work
with all Hormone positive tumors).
I hear your frustation and understand being one of 11 out of millions.
The good news that very aggressive met disease is very easy to diagnose it
doesn't matter, ductal., lobular , or any infact any cancer


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