Tim wrote: << You have already covered the obvious.  Now you
are looking for a firm diagnosis in the face uncertainty.

I think "something going on" is a lovely phrase for failure to produce a
diagnosis. >>

I guess there were some factors  that I haven't included.  Before my b.c. dx,
in addition to having a few other things going on that were a bit atypical
(i.e. M.S. for 29 yrs before--when it was dx'd I had never heard of it and the
same goes for otosclerosis (supposedly genetic-based conductive hearing loss
for which I have had both surgery (jmplant) and have worn bilateral hearing
aids for past 17 or 18 years.  Anything else unusual--am left-handed along with
5 out of 8 of paternal cousins...um where was I...
Oh, okay, for about 4 to 5 years before the breast cancer was dx'd I had
unexplained swelling of my lower legs.  Not just slight swelling -- but enough
to cause me embarrassment because my lower legs look like tree trunks.  (I have
thin wrists).  In addition my abdomonal area was on the larger size such that I
looked 10 months pregnant.   Diets didn't seem to be helping either.  One time
I took my daughter into a podiatrist (she was referred by pediatrician because
of repeated ingrown nail problem).  While there I asked if he could take a look
at a bunion on just one of my feet--was wondering what I could do  about it.
Anyway, I made no menton of my legs, but he commented on his own that they
looked like those of  a 70 year-old woman.  I was either 47 or 48 at the time.
He sent me to have a venogram--which I was told was normal.  He thought further
evaluation needed to be done.  I told him that I had been doing that for the
past few years but was wondering if all the 'right' tests had beend done. Oh, I
forgot to mention I was also anemic and was told to take iron pills which did
absolutely nothing.  (My oncologist told me not to continue with the iron which
had been bothering my stomach-said it wasn't necessary>
I did see my ob-gyn who had ordered ultrasounds because of excess abdominal
swelling.  I guess he was looking for signs of problem in my ovaries.  I was a
little concerned about possibility of ovarian cancer--since that is one way it
presents--unexplained abdominal and lower leg swelling.  One of our good
friends had that and had been urging me to get further evaluation.   Again, my
legs were and still are quite swollen--go down in morning a bit, although not
completely.  The cause has not yet been determined.  
Then I am dx'd with breast cancer about 4 or 5 years later.  I am still anemic
at the time.  I then have the core biopsy--5 areas done on my breast.  I am of
course scared.  I again try and change diet--cut out sugar and processed foods.
I don't go hungry.  In 23 days I suddenly lose 17.5 lbs.  I was not obese but
about 25 to 30 lbs more than I should be.  The  amount of weight loss was
extremely unusual. I did increase my activity level but not by that much!
Initially, I thought it was due to what I was doing.  Now, I am not so sure.
Remember, the main tumor I had was invasive lobular.  Breast cancer is slowly
growing and I was told that it had been there for the last 5 to 10 years.
Something may have triggered it to become aggressive--or even the sheer fact
that it had been there for so long.  Lobular grows in sheets and is undetected
by mammograms until at a much more advanced state.  
Lobular (only about 8 to 12% of  breast cancers) also has the propensity to
metastasize differently than ductal (which 85% of breast cancers are).  A few
days ago I found an interesting article which states: "ILC (invasive lobular
carcinoma) can result in diffuse infiltration of the gastrointestinal system,
gynecologic organs, peritoneum, retroperitoneum, adrenal glands, and bone
marrow, whereas invasive ductal carcinoma has a greater propensity to
metastasize to the lung and pleura."  This was from an article entitled
"Metastatic Lobular Breast Cancer Presenting with Malignant Ascites."  The
patient, although older (78) presented "with 2-month history of painlessly
increasing abdominal girth."  Bingo.  That's me along with lower leg swelling.
At time of dx I had several enlarged retroperitoneal nodes as well as enlarged
aortocaval node.  In looking up leg swelling,  I found that can be related to
the retroperitoneal and aortocaval node.  It may also indicate rectal or colon
cancer or metastases, another area where lobular has greater tendency to
spread.
Interestingly, 2 days before surgery, I developed unusual rectal bleeding--no
pain--no signs of hemmrhoids--but red blood would pour out when I went to
bathroom (with or without needing to have bowel movement).
The rectal bleeding continued until I was just about finished with the AC
chemo.  Oh, and I forgot to mention that there was a weird change in the shape
of my b.m.'s 3 months before I was dx'd with breast cancer.  I was embarrassed
about making an appt. for that but used sign of possible infection to make
appt. with ob-gyn to ask about breast and this weird change.   I saw a
different ob-gyn and he just told me to see my regular dr.  I can't recall if I
had him check the breast mass--it was a same day appt. and I kind of knew
him--our kids were in the same class and had been in activities together and
was uneasy enough seeing him for this.
Anyway, my thoughts--since I did  have extensive lymphovascular invasion at
time of mastectomy, unusual abdominal swelling, was anemic for past 4 or 5
years, also had unexplained lower leg swelling for past 4  or 5 years (which I
still have) in addition to swollen retroperitonal nodes and aortocaval node,
and the weird rectal bleeding which stopped towards end of AC chemo--that at
time of dx, there was something going on and still is in the retroperitoneal
area.  I am also wondering if there may be something in the adrenals or was--or
was--with elevated testosterone that supposedly went as high as 6 times normal
for awhile (but returned to double normal after starting thyroid medication and
then normal.  In addition, the PET scans also showed increased activity in one
of the submandibular lymph nodes.
One can have a metastatic process going on, particularly with lobular, that
doesn't show up as solid tumor but is in the lymph nodes and bone marrow,
particularly if there was vascular involvement.  Since I had extensive
lympho-vascular involvement the likelihood of such is greater.  And I was told
that breast cancer can metastasize anywhere and one is more likely to find it
in unusual places if there was vascular involvement.   Since at time of dx the
b.c. was as advanced as it was locally, I wouldn't be surprised if this was
possible.

Kaye,
It doesn't sound like any of your doctors have told you that you have
Mets...and you have had many tests that have found tumors, cysts and
abnormaliites...many of them not producing any symptoms and would  not
have been found if you didn't have these imaging exams. The usual
presentation of mets is clinical symptoms, lab tests and imaging. One
can have an abnormal lab test or imaging test and not have
mets.....this in the reason why they don't recommend routine tests
since many people have incidental findings that cause people to stress
out about it. In fact many times women who have a confirmed diagnosis
of mets are not given any therapy since they are asymtomatic.  I can
understand your concern to find and treat mets early but no study has
confirmed early detection of mets provides a better quality of life
and/or survival.
I can also understand your concern and respect your belief that
finding any active disease with result in a better outcome but at some
point ...and only you can determine what this threshold is you need to
live your life and hope for the best. I try to limit my time going to
and waiting for appoitments.
You can go to 3 different doctors and get three different opinions,
but it seems like the concense from your health care team is that
there is nothing active going on otherwise they would biopsy or
operate to determine what is going on. From your postings here I can
see you that you spend an incredible energy to find the one test that
will proclaim you cured...and unfortunately there isn't one.  And when
you find the test ...please sign me up for one!
And yes one can have mets and not know but usually it is because the
person has not been closely followed by their health care team.
It sounds like you are doing all the right things but at some point
you need to stop worrying ( easier to give this advice than live it!).
Alex