I haven't been posting as of late too much here but thought I'd update.  I will
be having a surgical consult real soon  re. the 'tumor' in my submandibular
node (gland?).   This morning, though, I am most concerned because the rash on
the non-malignant side which has been coming and going for the last month on
the chest are of non-malignant side is quite profuse.  (I had IBC along with 2
other types of bc at time of dx--and had bilateral mastectomy, chemo,
radiation, more chemo) but no radiation to non-malignant side.  I am a bit
worried about that.
Although I have not officially been dx'd with mets--I am sure that something
re. the b.c. has been going on all the time--based on results of first CT scan
done 1 week after original surgery, # of involved lymph nodes and other
particulars about patholoty report--including elevated tumor markers at time of
dx.
I have had 2 scan reports that have been wrong--actually sure there are
many--but won't get into that here.  I will just share results of 2 PET scans
and 2 CT scans.  In 8/02 I had first PET.  It showed some increased activity in
different areas--L4/L5 region of lower back and submandibular node.  In regard
to L4/L5 it said follow up MRI should be done if there were symptoms.  There
were but no follow up MRI was done--not until much later when pain progressed
to severe sciatic pain during night when lying down.  Cyst or mass was noted
but neither tested/confirmed/or ruled out.  However, getting back to original
report--I asked about submandibular and was told it was an 'incidental'
finding.  Nobody was concerned.  In fact I had another PET scan done in 9/04.
It was reported to be normal.  I called and asked if it had been compared with
first PET.  It had not been.  I was told they had no copy of it.  I brought in
copy of films and report and dr. told me she did see it but was not going to
change report and made it seem like it was nothing.
I then  had a regular CT scan done by health care facility and report came back
indicating things were better than ever.  No enlarged retroperitoneal nodes
were noted, per report, nor anything else of concern.  2 weeks later I have
full body CT scan which I was hesitant to do because I had just had other one
done.  It was recommended by private 2nd opinion onc--'cause radiologist who
did it had understanding about my type of b.c. (lobular) because of personal
involvement.
After full body CT one has consultation with radiologist.  The first thing he
asked me was how long I had the tumor in my neck.  Huh???  What tumor in my
neck???  He then pointed out the one in submandibular area that nobody had paid
attention to.  He then went on to tell me I had a nodule on my
thyroid--wonderful (NOT).  And, not only did I have enlarged retroperitoneal
nodes--there were now 30 to 40 and there was an enlarged mediastinal node.   So
maybe that's why the Cellsearch test was showing circulating tumor cells in my
blood) and that there really is/was evidence of something going on???  The
radiologist told me that the other CT scan report done 2 weeks earlier was
wrong.  (I had also brought in copy of films).
So--what to do.  I first had ultrasound and FNA biopsy of thyroid.  That was
supposedly negative but there were some follicular cells.  The night I had the
biopsy I read up on thyroid cancer and learned, GULP, that if one has had
radiation to that area that they shouldn't be doing a FNA but should remove the
node.  I read this in book co-authored by dr. on cancer who had referred me to
place to get special CT scan done.  He had told me to get it checked out but he
never mentioned that I shouldn't have FNA if I had radiation.  I am not sure
that it even crossed his mind that I had had it.  I didn't know I wasn't
supposed to have a FNA at time it was done.  I had no information about it
either way until AFTER it was done.  I later called the endocrinologist who did
it and she said she didn't know I had had radiation.  WONDERFUL  (NOT)!
I emailed the 2nd opinion onc and mentioned that I had read that if one had
radiation one should not have FNA.  He has never responded to that email.  I
did not say that he told me to have that done nor that he should have known
about it.  I am not going to do anything about it anyway.
As far as the submandibular tumor--we will  have surgery consult.  We did ask
about getting private PET/CT scan done and onc was willing to order but thought
we should take care  of surgery first--makes sense.  I could do FNA of this
area--but have been reading more and more that FNA can cause tumor seeding and
there is risk of false negative.  And, although I am guessing it could be
treated by radiation, it was suggested to us that it be removed and maintained
through special process to allow future chemo testing or vaccine to be made.
If the tumor is not bc-related it was then recommended that biopsy be done of
retroperitoneal nodes--not looking forward to that at all...ugh...Meanwhile, I
have been busy working full-time, staying out-of-trouble---kind of ;-)