<<  ipscabible was a nickname that
i used to call my kitty... >>

My grandmother and also my mom used to call me 'ishkabibble' after they washed
my hair and it was all sticking up at the ends.  I thought it had to do with a
cartoon character.
L'shana Tovah to all!  Hope all who celebrated had a great New Year.  Ours was
low key.  My youngest, the only one who stayed in state to go to college came
home from the university she attends.  We all went to religious services.  This
morning, my husband and daughter went alone while I went for a 10 mile power
walk (in training for the Susan G. Komen 3-day walk).  We met at 6:15 and were
done a little after 10:00.  I got home in time to meet my husband--he dropped
my daughter off and I went back to services with him until the end.  
Emotionally, I found the services a bit tough--message conveyed that on New
Year's we are judged and on Yom Kippur our fate for the following year is
sealed.  I am not sure how much, if any of that I 'literally' believe but the
message alone was something I hadn't wanted to hear.  However, today, at
services I felt alot better about everything.  Maybe it was the walk this
morning (and last night -- my husband and I walked 7 miles) got the endorphins
going.
I am a bit punchy now from only 3.5 hours sleep--and probably should change or
add something to the subject title of this thread, but am not going to bother.
I only slept 3 hours 'cause I woke in severe pain in my leg and buttocks from
the synovial cyst or mass that's there.
I sure hope it's only a cyst but can't dismiss the idea that I have spinal
mets--especially now that my shoulder and upper arm have hurt daily since
August 7.      I had an x-raty which showed a 'bone spur' on my shoulder.  I
then had a PET scan which shows several areas of uptake--including the L4/L5
region of my spine.  It showed 'degenerative' changes in my shoulders--much
greater on the side that hurts.  However, the PET/CT scan, which was done at a
major university hospital was done by a fellow student.  He analyzed it (I'm
sure) and the head dr.'s reviewed it with him and then signed the report.  I
got the reprt. the next day.
Initially, I felt great about it all--until I read the clinical history.  It
stated 'patient MAY have lymphedema in her left arm.'  My reaction--WHOT!!!  I
have definate lymphedema in my RIGHT arm--had a custom sleeve on at the time of
the scan (wear sleeves 24/7--including custom Reid sleeve to sleep in at
night).  And, I had told him that I was experiencing pain in my LEFT shoulder
and LEFT upper arm at that time for one month--daily.  Remembering Tim's story
about how bone (or was it spinal?) mets were discovered after his wife had
moved furniture--has me wondering.
In my reading I found info about shoulder mets--18% of all with b.c. are
eventually dx'd with mets to the shoulder supposedly.  
Well, I am at extremely high risk for recurrence, so I wouldn't at all be
surprised.  However, I was very  concerned about the validity of the reported
results of the PET scan after I read the misinformation.
I called the facility and left a message.  I then wrote up my concerns and
requested re-analysis of the PET/CT scan based on corrected clinical info.  I
rec'd  a call from one of the head radiologists who apologized and offered to
look again at my scans.  He was willing to amend the clinical hx but said he
wasn't going to change the report.  He then offered me a free scan in 3 months.
I learned from dr. in medical school that they are not allowed to change the
report.  However, we paid for this evaluation out-of-pocket.   (OUCH!).  My
concern, if I send this to our HMO--we had asked for a PET scan from them and
even had a letter from a private dr. requesting it--and they refused.  If I
send them a report that was invalid--they are even less responsible if there
has been any neglect on their part.
I can't say I am any further disillusioned.  I guess I am at the point where I
am no longer surprised by things like this. As far as misinformation in a
clinical hx--well I have been reviewing students' records in education for ovr
25+ years.  I was very surprised when I noted inconsistencies in their medical
histories, initially, but as records became more complicated, I found it to be
more than norm than otherwise.  Sad...
However, when it's your own case--and nobody is listening to you--it is a bit
unnerving.  AACK.  The reason we decided to go ahead with the PET/CT scan, even
though we had to pay for it, was because of the daily arm/shoulder pain since
the beginning of August (which was first noted last October--but never written
in my chart).  
In the case of spinal mets (which I still hope is NOT happening) early
intervention is critical.  However, some of you may recall--that when I asked
my onc. previously how one differentiated bone mets from 'arthritic' activity,
he did not answer my ?.  Instead he said that it didn't matter in terms of long
term survival if one was treated for 3 years or if it were held off for a year
and they were treated for 2 years.  His response made me suspect that he
definately was aware of what was taking place.
Interestingly, I met a gal who was dx'd with stage IIIb b.c.  Her treatment was
6 cycles of TCH (Taxotere+Carboplatin+Herceptin).  Initially, she had to pay
for it.  Her HMO insurance didn't cover it because it is a new regimen that is
not yet considered standard.  However, she switched to a PPO provider and it
was then covered.  She is being treated by one of the top oncologists--one of
the developers of Herceptin--who initially said she'd get it for one year--when
she was on the HMO.  And, now with the PPO, she was told she'd be allowed to
have it for the rest of her life.
Now I understand where they were coming from when we went to this university
cancer center for a 2nd opinion.  The onc we saw said he didn't disagree with
the chemo regime that I was given through our non-profit HMO.  AT the same time
he said it wasn't necessarily the one he would have used. However, he would not
tell us what he would have given.  Frustrating...  In some situations there is
no way to get an honest 2nd opinion...sigh...

Harriet wrote <<  i think i will go get my
xrays and go to even ANOTHER radiologist for another set of eyes (not back to
the one who thinks he's god).. >>

If there is any concern it is good to get a 2nd opinion--and possibly one at a
specialized breast center if at all possible.

<< a petscan or mri seems
like it would be a real hassle in getting approval, because there was no target
area for my core biopsy (and THAT was a HUGE fight getting that approved due to
the fact that i went with my second opinion dr. of having the biopsy done and
not my radiologist's who wanted me to wait six months) and nothing on the
ultrasound...i know the ultrasound isn't perfect, but it was a decent good
sign... >>

It is  a good sign that the ultrasound was normal.  Hopefully, there will be
nothing of further concern.  In my case, I had a very bad family hx for b.c.
and my ob-gyn knew that; yet, he downplayed my concerns and symptoms in the
direction of what the norm tends to be--which turned out to be a near-disaster
for me.