Thanks, all for asking.  This is first chance I  have had to read/get
to this group since aol dropped newsgroups.  For some reason, even
though aol uses google, I can't get to the google groups with aol from
my version on the mac.  My husband and I flew to the East Coast for a
wedding this weekend and my husband's cousin asked if I were interested
in checking anything on-line from the computer---so, I decided to say
'hi.'  I also want to thank Alex for emailing me and letting me know of
your thoughts--much appreciated.
It has been kind of a whirlwind for me--things are 'a hoppin.  I was
told last summer by the spine dr. that I had bone marrow mets in all
the vertebrae of my thoracic spine.  In January he said I had a soft
tissue met in my cervical spine.  The other spine dr.--in same dept
said I had bone mets in my lumbar spine.  All this was based on MRI's.
However, the onc. hasn't officially dx'd mets--so am in limbo.
The story is somewhat complicated--when has my situation not been <g>?
So, I have no idea if I do or don't have mets--for sure, but based on
my pathology and all that has been going on--the chances of having mets
are greater than not--for me, that is.  They--the dr's in our
hmo--including my onc, however, did try and get me to have the soft
tissue area biopsied--but the way they tried to get it done made me
refuse at the time until something else was taken care of first.  I
suppose I should write about it but it is a bit long and complicated--
so this is gonna be a long one.  It started 2.5+++ yrs ago when I had
my first PET scan--ordered after I suddenly went hypothyroid.
Initially my onc ordered it but when internist said I was
hypothyroid--the onc initially said to me--'are you SURE you're
hypothyroid.  I had no clue--but from way he said it, I thought he
suspected something else going on.  He then rescinded the PET scan and
sent me to an endorcrinologist.  My husband argued with him at my/our
bequest to get the PET done.  He tried to use rhetoric to argue against
it--saying we didn't have one for baseline--but relented and
re-ordered.  That was in 8/02.  It showed increased uptake in my lumbar
spine and in the submandibular lymph area.  Rept. recommended MRI for
lumbar if there were symptoms.  There were but no  MRI was done--at
THAT time and said submandibular was 'incidental.'  I won't go into all
that went on between that time until 9/04 when I had another PET done
by our HMO--results was that it was normal.  I called the dr. who read
it and asked if she had  compared it with first one.  She hadn't--said
she didn't have the films.  I brought her a copy.  She said she saw
something in the submandibular in new films but was not going to change
her report.  Okay...
Then in December I had new CT scan by HMO--and for very first time it
said there was no retroperitoneal involvment.  YAY!!!  I thought that
inferred that what I have been doing was working.  However, at same
time--one of the 2nd opinion onc's I have seen wanted me to have a full
body CT scan.  I thought that odd since they are not usually done if
one already has cancer.  However, he wanted me to have it done by
someone who knew about lobular b.c. since this radiologist was familar
with it.  I had it done less than 3 weeks after other CT scan.
We then went for a consultation with this radiologist.   The first
thing he asked was how long I had that tumor in my neck.  Um, WHAT
tumor in my neck.  He then said the one in the submandibular...OH  THAT
ONE!  Well, that showed up 2.5+ yrs ago on first PET and has been there
since.  He then told me that there was a nodule on my thyroid that
should be biopsied.  In addition he said that the CT scan report from
our HMO wa WRONG!  Not only was there still retroperitoneal node
involvement--that I now had between 30 and 40 positive nodes.  Great
(NOT)!.
We discussed course of action to be taken--first get thyroid biopsied,
then take care of submandibular and then retroperitoneal.
Coincidentally, I had an endocrinology appt. the following week.  I
told endocrinologist what had transpired.  She did in-office ultrasound
and biopsied node--FNA.  That night I went home and read book
co-authored by dr. who referred me for this CT scan and read chapter on
thyroid cancer that he co-authoried.  It said that if one had radiation
then a needle biopsy of thyroid should not be done.  I emailed this
dr.--he never responded to this.  I then called endocrinologist and
mentioned what book said--her response--she didn't know I had
radiation.  HUH???  I thought that was what caused the hypothyroidism
and she definately was aware of my hx when I had started seeing her.
She mumbled something about me seeing a head and nek surgeon, but still
have not gotten THAT referral.  The FNA biopsied said 'favored' benign
nodule.  She, dr. told me it was benign.  2 mos. later I went for 2nd
opinion about submandibular and head and neck oncologist told me that
biopsy report--as it was written did not mean it was benign.  Last
month we had pathology re-read and were told that the sample didn't
have enough cells to determine.  That was the thyroid.
Then there was the submandibular.  First, though, will mention--we
haven't dealt with retroperitoneal yet.  After thyroid business I gave
report from CT scan to my onc.  He said he would refer me to head and
neck for submandibular.  It took almost 4 wks between time I gave him
rept and when I finally saw a dr.  In addition--in January Ihad new CT
scan done which showed activity in submandibular.  I also saw spine dr.
who saw something new in cervical spine--soft tissue area which he said
was mets based on MRI.  He said it wasn't in an area that would cause
damage but when I asked what could be done he made referral to rad.
onc. and neurosurgeon.  In the mean time we finally got to see head and
neck dr. re submandibular.  We brought him the CD which showed the
tumor.  He ordered new CT.  It took a couple of weeks to get report and
this was carefully orchestrated to coincide with times that my onc and
he would be on vacation--that's the HMO way.  In addition I saw the rad
onc--who negated what spine dr. said--that it wasn't a met---he had
never seen one there.  He also bullied and chastised me--challenging me
for what I reported that other dr(s) had said--and said he was going to
'talk' to them--but didn't think anything was there that needed
anything done.  10 days after I saw the rad onc. the head and neck dr.
got back to us-negating what the private rad./CD had shown--and he was
leaving on vacation the following day--but said if there was anything
there it could be removed without delay--but report appeared to
indicate nothing.  Then, the following day, I got a call from the rad.
onc's office--actually from his fellow student--saying that they made
arrangements for me to come in for a special procedure right away.  Um,
what procedure--they wanted to biopsy the soft tissue area--that he
assured me was of no concern and that he was almost 100% sure was not a
metastasis.
My husband called him back and asked where he was coming from--and told
him we weren't doing anything until submandibular was taken care of.
We also talked to my onc about it and assured my husband that nothing
was 'set in stone.'  I told my husband that meant they didn't want to
do the surgery.  He thought it meant they would do both--turned out I
was right on that one.
5 days later we saw the 2nd spine dr. who is now telling me I have mets
to the lumbar area and then we met with the onc--who said that he now
recommended biopsy of soft tissue area.  And he talked about that being
positive and starting me back on chemo.  I asked if it were positive
would they still do surgery on submandibular--he said no--that I'd be
stage IV and would only get palliative care.  I said I wasn't having
biopsy until submandibular was done.  He was going on vacation but I
should let him know if I changed my mind.  They were now making it seem
like I was one doing delay.
I forgot to mention that private dr. had recommended getting
submandibular tested for chemo assays and also if possible to preserve
tumor for vaccine.  We did find a lab that would do assay analysis but
only place we could find to preserve tumor was in Bahamas--would have
made for a nice vacation but didn't know if it would be 'right.'
I then saw a private head and neck dr--who referred us to university
oncological head and neck dr.  While in waiting room of univ dr. I
rec'd call on cell phone from hmo head and neck dr--wanting to know
what to do with  CD of CT from private dr--didn't know what to say--so
off top of my head said I wanted 2nd opinion from them.  He said I
would have to see head of dept.  This was end of March--rec'd call from
them next day and was told they had no appt until May--told them that
was unacceptable--got an appt. for following Monday.
Meanwhile university head and neck onc surgeon said at the least a
needle biopsy should be done of submandibular and he told us that hmo
report of benign thyroid nodule was actually inconclusive.
The next week we saw hmo head of dept--this was after other hmo head
and neck surgeon wrote up report that had nothing to do with visit that
I had with him.  This  dr. offered to go ahead and remove gland.  I
liked this dr. and decided to go ahead.  He agreed to have gland sent
for chemo analysis, too.
That was on Monday and surgery was scheduled for Thursday.  The day
before I checked with 2 labs that did chemo analysis--one used frozen
tissue and faxed directions--3 or 4 different ways to do it; other lab
had a kit--but was more expensive and offered to fed ex it.  They would
have it there on time--but I figured there was nobody in charge to get
monitor receipt and we had no idea of where it needed to go.  I took
off work and drove to pick it up and brought it in at time of surgery.
Surgery went well--same day--very little discomfort and could have gone
back to work next day--but since it was Friday--decided to take that
time off.  After surgery, the dr. showed my husband--said he removed
entire gland plus more tissue.  He walked it over to pathology himself
along with kit to be sent out with tissue for the assay--which was
done.
The place that did the analysis tests tissue sent for different chemo
combinations.  If they don't have enough malignant cells they can't do
the analysis.  They know that after 3 days and refund all money except
for 10% processing fee.  We didn't hear back from them and got report
about 8 or 9 days later--they tested 7 idfferent chemo combo's and
showed which was most effective.
Meanwhile the biopsy report of gland came back negative.  I went for my
post op visit and drl gave me copy of his surgical report and pathology
report.  Surgical rept said he removed entire gland.  Pathology report
stated that what was received was a "segment" of the gland.  I noticed
that and asked the surgeon if he removed the entire gland why did the
path. report state that they received a 'segment.'  His whole demeanor
changed.  He acted VERY uncomfortable--and said he didn't know.  I
since read a report written by a former dr. who worked for our hmo--and
talked about how they manipulated test results and biopsies--especially
those involving cancer.
So, I have no clue if results were completely benign--or at least part
tested by pathology.  We contacted the lab that did the chemo assay.
They had no answer and gave us full refund.  That is not what we
wanted.  What was wanted was a truthful report.  Our concern---if
submandibular was positive--was it breast cancer metastasis or could it
have been possible thyroid metastasis?  There are no answers.
I  would love to believe it is/was benign.  Last October I had new
blood test---CTC circulating tumor cell test.  Result of >5 means that
prognosis of chemotherapy is not very good.   Normal control--someone
who doesn't have cancer should have level of "0."  a level >2 is
considered significant.  My level at that time was 4.  I had the test
re-done 3 weeks after the surgery.  My level was then "0."  So....when
someone asks how I am, I have no clue--as far as the cancer is
concerned.  I do think something may very well be going on with my
spine...but who knows...Please excuse the length of this post...