I desperately need input from others as to standard of care expected
around the country. The first week of December ('06) I had an
appointment with my oncologist to check my swollen lymph glands in my
left armpit. I had checked with my insurance and they would cover an
MRI since I had just completed 5 years since a breast cancer Dx on the
other breast. He completely blew me off, told me that "MRI 's are no
good, there is no one here to read them, the nearest place to get one
done was 2 hours away, Blah, Blah, Blah..." (not true- I am Toledo
Ohio, we have SEVEN hospitals, an medical college and numerous
facilities that do them and are and hour away from Cleveland where THE
experts could read them).

So in late February ('07) because he 'closed' my file, when I went to
schedule my mammograms (now annual) at Toledo Hospital, they would not
schedule them till the insurance kicked in and said it was an actual
year, add to that their usual busy bookings and I wasn't able to get
my mammograms till April. The radiologist finds something suspicious
on my left breast & does a whole bunch of close-ups, and tells me yes,
I'll need a biopsy. The next day my surgeon's office calls to schedule
a biopsy in his office the following week (he is away till then). It's
17 days now since the radiologist (& I ) saw something on the films,
he checks me in his office with an ultrasound (no biopsy?) and wants
me to have a Stereotactic Breast Biopsy back at Toledo Hospital, but
their 'machine is down' and it may be several weeks. Eventually they
call (I'm instructed that you can't call them) and now it's 30 days
after all those films with something circled on them, that I get the
Stereotactic Breast Biopsy but I have to wait 8 more days for the
pathology results & the appointment at the surgeon's office.

The day before that appointment his office calls and says "can you
come 40 minutes earlier for your appointment tomorrow, the doctor need
more time to discuss the results with you"...duh!! I guess I know the
news is bad! How unprofessional, I'm angry.

At the appointment he says he wants to do a lumpectomy & sentinel node
biopsy at the same time but there is a good chance the lymph nodes
will need to be removed, requiring overnight stay & six weeks
recuperation. I won't know till I wake up the extent of the lymph node
work done.

Here is where we have a major problem, I am the SOLE caregiver for my
tetraplegic husband on a ventilator with a trach, we have no relatives
or friends here or elsewhere, there is no respite care for someone
with a trach, my insurance will not pay for any of my husband's care
that I can not do because I am sick and his insurance (Primary-
Medicare) will not pay for any care that can not be done by me because
I am sick, since he is healthy. The only care available would be a
'nursing home' here and we have first hand experience with them here,
he literally could likely not survive a few weeks in the best one
here, plus Medicare again won't pay for his care on a temporary basis
while I 'recover', financially it would really kill us and it would
end up being much more taxing for me anyways, ....his last stint in a
nursing home here required me to drive 50 miles twice a day just to
make sure he was fed, because although we were charged about $250.00 a
day for the service of his being hand feed, most times, it just didn't
happen, I would arrive to find a tray of cold food sitting in front of
him. By the time I got him out of there, I was so exhausted, it took
me months to recover.

The surgeon knows all of this, I explained I can't just not come home
from the hospital, and then not use of my left arm for several weeks!
My husband needs to be transferred twice daily from bed to chair, etc,
2-3 days in bed results in skin break-down, a road you must avoid at
all costs, he has a trach, is on a vent and is unable to suction
himself which must be done all day long, that is a two handed job that
if not done results in drowning (short-term) or pneumonia (long-term).
I asked if he could help me find some part time help to hire, I don't
need a nurse, someone who 's been an nurse's aide, attendant, etc. is
fine. I can teach just about anyone what needs to be done. He said all
he could do is give me the hospital's number for social services which
uses agencies. I will not use agencies here, they are either way out
of our price range (they usually have minimum number of hours you must
pay them for) or our tiny house and our transfer setup doesn't meet
their criteria for them, They have caused me more stress than they are
worth.

I asked the surgeon why can't you do the lumpectomy now, (it's now 38
days since radiology findings) and let me work on make some
arrangements so that we could do the sentinel node biopsy ( & most
likely the axillary dissection) after I can make adequate arrangements
for both my husband and myself.

His answer is "they must be done together because---, because they
both require general anesthesia, because that's the way I do it,
because...." DO I NEED ANOTHER SURGEON???????