tests, scans, markers etc

Hello all,
I am also a newbie, and RN, and understand much of the
medical 
terminology here.  In my journey,6/06 I found a sore lump
that went from 
a couple centimeters to about 3 inches long over a weekend. 
I saw my 
regular internist who promptly got me a mamogram which
showed nothing, 
and a ultrasound which showed a "structure" about
.9cm in a duct. at 
this point I had a small area at the site that was pink.  I
had a 
lumpectomy in 7/06 (it took that long to coordinate someone
to operate) 
which showed DCIS, plus some very disturbing
undifferentiated cells 
outside the ducts, which was felt to be IBC, and no clear
margins.  My 
surgeon (at the time who was very young) said, "it
can't be IBC, you 
don't have peu d'orange skin".  I took it upon myself
to call my 
favorite Oncologist I work with who said " You need
more surgery to try 
and get clear margins and a sentinal node for biopsy". 
 She called my 
surgeon and this we did in later  7/06, with the results of
still no 
clear margins, more ductal CA and definite diagnosis of IBC,
with 4 out 
of 12 nodes positive, 2 of which were grossly positive on
sight. 

My oncologist now ordered the scans, CT chest and abdomen(No
chalky 
drinks though all IV contrast), Brain scan, and Bone scan. 
All these 
came out negative for cancer hot spots thank God!  This was
8/06.  When 
she finally had all the results (waiting is indeed hell!)
she told me 
"this is a sh---y cancer but you are not doomed!" 
I did 4AC rounds over 
8 weeks, and 4 taxotere rounds over 12 weeks.  My last chemo
was 12/06 
just before Christmas.  I have had neulasta for white blood
cell boost, 
and am on Arinesp now every 3 wks for red blood cell boost.
I had a chemistry blood test in the beginning and Blood
counts  to check 
levels.  I have bilateral mastectomies coming in January,
with radiation 
to follow in February 07.

I have never had a PET scan, tumor markers, or any other
tests thus 
far.  Should I ask for them?

When I asked my onc about "How do we know it
worked?"  she said, " If 
the cancer doesn't come back, I'll take the credit."
 
She's given me 
the impression that scans are fine if you have problems to
look for.  If 
I asked for them she'd do them, however.  She is one who
usually 
presents at these conferences on Breast cancer, so I know
she's up to 
date with the latest.

Well, I just wanted to have my story told and show that
treatments vary 
with individuals and Oncologists.  I don't like hearing or
reading the 
stats because there are too many variables in this mix to
count on any 
numbers for our chances.  The idea for me is to keep
fighting with 
whatever is in my means, and live my life unshackeled from
the fear of 
doing the "wrong thing".
I plan on having  reconstruction in the fall of 07 (hey how
else could I 
get a boob job and a tummy tuck all at once?) and enjoying
each day I have.

Thanks for listening to my long missive!
Ruth


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Ruth,
Here comes the words so many of us dread saying but do so
because they are sincere - Welcome- newbie. Having the
diagnosis is not what anyone would indeed welcome. BUT you
have found a site of amazing support and knowledge.. From
your post you will see that IBC knows no intellectual or
professional boundaries.. There are doctors, nurses,
housewives,professionals, unemployed and even retired OTRs
like myself. So many of us thought we knew everything about
breast cancer, only to be blindsided by lack of awareness
and knowledge. of IBC! 
 
>From what you wrote, your surgeon hopefully has been
educated by now! It's hard for many to believe you don't
have to have lump to have breast cancer and now you've got a
Dr who thought you had to have the skin of an orange to have
IBC... Guess what - not the case.. 
 
Each case of IBC proves to be so individual and needs to be
viewed as such.. Yeah there is a similarity once you get to
the pathological aspect but the clinical presentation really
can throw them and us! Here's hoping that greater education
to our medical community finally takes shape and the
messaging of breast cancer includes all signs and symptoms
of all forms of breast cancer... Sorry you can see I can get
off on a tangent. Not only am I a hard core fighter of this
disease, I'm a hard core fighter for greater awareness and
research. 
 
Your treatment sounds like the standard of many myself
included. As for scans, some of us have had the PETs to
baseline during the initial treatment phase and then only
used in the case of progression post all the treatments. BUT
you don't have to think in that manner at this time... 

You sound like you have a solid head on and that will
help... Take it one day at a time and keep taking the
forward steps... Don't concentrate on the stats.. Remember
you are an individual. I told my family the day the floor
fell out on me with the diagnosis and what was to be, if the
odds were only one in a million which they are not - i have
the right to fight like you know what to be that one if need
be... And fight I will and have.
 
So, ask your questions the gang is here. Many have tread the
waters you are in and know that many have treaded in the
water and swim to shore to live complete and full lives
without any keeping on the list. It's nice when they pop in
to keep the newbies and some us fighters in line with
support and encouragement.
 
And keep in mind if they don't offer the boob and tummy tuck
job as soon as you may wish.. Life will go on.
 
Not sure in what part of the country you are located, know
that there some areas that have support groups that actually
meet. In the Philadelphia area we are fortunate to have a
group that meets every other month and you should be hearing
more about that from our dear Rich who sends out the
messages for this.. Next one should be Feb. There was also a
group in Delaware and soon to be NJ from what I have
read....
 
Wishing you the best in the new year.
Barbara in NJ
 
 
 
 
 
 
-----Original Message-----
From: racoatesbtc-bci.com
To: ibcibcsupport.org
Sent: Sun, 31 Dec 2006 11:25 AM
Subject: [ibc] tests, scans, markers etc


Hello all,
I am also a newbie, and RN, and understand much of the
medical 
terminology here.  In my journey,6/06 I found a sore lump
that went from 
a couple centimeters to about 3 inches long over a weekend. 
I saw my 
regular internist who promptly got me a mamogram which
showed nothing, 
and a ultrasound which showed a "structure" about
.9cm in a duct. at 
this point I had a small area at the site that was pink.  I
had a 
lumpectomy in 7/06 (it took that long to coordinate someone
to operate) 
which showed DCIS, plus some very disturbing
undifferentiated cells 
outside the ducts, which was felt to be IBC, and no clear
margins.  My 
surgeon (at the time who was very young) said, "it
can't be IBC, you 
don't have peu d'orange skin".  I took it upon myself
to call my 
favorite Oncologist I work with who said " You need
more surgery to try 
and get clear margins and a sentinal node for biopsy". 
 She called my 
surgeon and this we did in later  7/06, with the results of
still no 
clear margins, more ductal CA and definite diagnosis of IBC,
with 4 out 
of 12 nodes positive, 2 of which were grossly positive on
sight. 

My oncologist now ordered the scans, CT chest and abdomen(No
chalky 
drinks though all IV contrast), Brain scan, and Bone scan. 
All these 
came out negative for cancer hot spots thank God!  This was
8/06.  When 
she finally had all the results (waiting is indeed hell!)
she told me 
"this is a sh---y cancer but you are not doomed!" 
I did 4AC rounds over 
8 weeks, and 4 taxotere rounds over 12 weeks.  My last chemo
was 12/06 
just before Christmas.  I have had neulasta for white blood
cell boost, 
and am on Arinesp now every 3 wks for red blood cell boost.
I had a chemistry blood test in the beginning and Blood
counts  to check 
levels.  I have bilateral mastectomies coming in January,
with radiation 
to follow in February 07.

I have never had a PET scan, tumor markers, or any other
tests thus 
far.  Should I ask for them?

When I asked my onc about "How do we know it
worked?"  she said, " If 
the cancer doesn't come back, I'll take the credit."
 
She's given me 
the impression that scans are fine if you have problems to
look for.  If 
I asked for them she'd do them, however.  She is one who
usually 
presents at these conferences on Breast cancer, so I know
she's up to 
date with the latest.

Well, I just wanted to have my story told and show that
treatments vary 
with individuals and Oncologists.  I don't like hearing or
reading the 
stats because there are too many variables in this mix to
count on any 
numbers for our chances.  The idea for me is to keep
fighting with 
whatever is in my means, and live my life unshackeled from
the fear of 
doing the "wrong thing".
I plan on having  reconstruction in the fall of 07 (hey how
else could I 
get a boob job and a tummy tuck all at once?) and enjoying
each day I have.

Thanks for listening to my long missive!
Ruth


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Barb,
Thanks for the encouraging words.  That surgeon is certainly
a little 
more educated, and I have switched to one who better listens
to my 
needs.  The first one would never consider removing the
other breast as 
it is "good tissue".  Thats his attitude, he's
welcome to it, but I 
don't want to have to do this again if I can help it.
Of course that's not to say this journey is always a
one-time deal 
either, but I keep positive!
About reconstruction, I know it will happen eventually
whenever that may 
be.  I have always been the big busted sister in my family,
so it would 
be interesting to see how the other half lives...
I live in Michigan in a town called Paw Paw, in the
southwest part of 
the state, out in the country.  My husband and I make
pottery on the 
side to keep our sanity!  Roger is a
great support to me and keeps us 
all (We have 2 teen boys) corralled and going in the right
direction!

Do you know, my sister forwarded me an info sheet on IBC
when I told her 
about the lump back in June.  She got from a friend who
asked if she had 
ever heard of it before.  I met most of the symptoms except
the orange 
peal thing.  So I went to the Dr. with the idea already in
the back of 
my mind.  Good thing!
Ruth

bhartotraol.com wrote:

> Ruth,
> Here comes the words so many of us dread saying but do
so because they 
> are sincere - Welcome- newbie. Having the diagnosis is
not what anyone 
> would indeed welcome. BUT you have found a site of
amazing support and 
> knowledge.. From your post you will see that IBC knows 
> no intellectual or professional boundaries.. There are
doctors, 
> nurses, housewives,professionals, unemployed and even
retired 
> OTRs like myself. So many of us thought we knew
everything about 
> breast cancer, only to be blindsided by lack of
awareness and 
> knowledge. of IBC!
>  
> From what you wrote, your surgeon hopefully has been
educated by 
> now! It's hard for many to believe you don't have to
have lump to have 
> breast cancer and now you've got a Dr who thought you
had to have the 
> skin of an orange to have IBC... Guess what - not the
case.. 
>  
> Each case of IBC proves to be so individual and needs
to be viewed as 
> such.. Yeah there is a similarity once you get to the
pathological 
> aspect but the clinical presentation really can throw
them and us! 
> Here's hoping that greater education to our medical
community finally 
> takes shape and the messaging of breast cancer includes
all signs and 
> symptoms of all forms of breast cancer... Sorry you can
see I can get 
> off on a tangent. Not only am I a hard core fighter of
this disease, 
> I'm a hard core fighter for greater awareness and
research. 
>  
> Your treatment sounds like the standard of many myself
included. As 
> for scans, some of us have had the PETs to baseline
during the initial 
> treatment phase and then only used in the case of
progression post all 
> the treatments. BUT you don't have to think in that
manner at this 
> time...
>
> You sound like you have a solid head on and that will
help... Take it 
> one day at a time and keep taking the forward steps...
Don't 
> concentrate on the stats.. Remember you are an
individual. I told my 
> family the day the floor fell out on me with the
diagnosis and what 
> was to be, if the odds were only one in a million which
they are not - 
> i have the right to fight like you know what to be that
one if need 
> be... And fight I will and have.
>  
> So, ask your questions the gang is here. Many have
tread the 
> waters you are in and know that many have treaded in
the water and 
> swim to shore to live complete and full lives without
any keeping on 
> the list. It's nice when they pop in to keep the
newbies and some us 
> fighters in line with support and encouragement.
>  
> And keep in mind if they don't offer the boob and tummy
tuck job as 
> soon as you may wish.. Life will go on.
>  
> Not sure in what part of the country you are located,
know that there 
> some areas that have support groups that actually meet.
In the 
> Philadelphia area we are fortunate to have a group that
meets every 
> other month and you should be hearing more about that
from our dear 
> Rich who sends out the messages for this.. Next one
should be Feb. 
> There was also a group in Delaware and soon to be NJ
from what I have 
> read....
>  
> Wishing you the best in the new year.
> Barbara in NJ
>  
>  
>  
>  
>  
>  
> -----Original Message-----
> From: racoatesbtc-bci.com
> To: ibcibcsupport.org
> Sent: Sun, 31 Dec 2006 11:25 AM
> Subject: [ibc] tests, scans, markers etc
>
>Hello all,
>I am also a newbie, and RN, and understand much of the
medical 
>terminology here.  In my journey,6/06 I found a sore
lump that went from 
>a couple centimeters to about 3 inches long over a
weekend.  I saw my 
>regular internist who promptly got me a mamogram which
showed nothing, 
>and a ultrasound which showed a "structure"
about .9cm in a duct. at 
>this point I had a small area at the site that was pink.
 I had a 
>lumpectomy in 7/06 (it took that long to coordinate
someone to operate) 
>which showed DCIS, plus some very disturbing
undifferentiated cells 
>outside the ducts, which was felt to be IBC, and no
clear margins.  My 
>surgeon (at the time who was very young) said, "it
can't be IBC, you 
>don't have peu d'orange skin".  I took it upon
myself to call my 
>favorite Oncologist I work with who said " You need
more surgery to try 
>and get clear margins and a sentinal node for
biopsy".   She called my 
>surgeon and this we did in later  7/06, with the results
of still no 
>clear margins, more ductal CA and definite diagnosis of
IBC, with 4 out 
>of 12 nodes positive, 2 of which were grossly positive
on sight. 
>
>My oncologist now ordered the scans, CT chest and
abdomen(No chalky 
>drinks though all IV contrast), Brain scan, and Bone
scan.  All these 
>came out negative for cancer hot spots thank God!  This
was 8/06.  When 
>she finally had all the results (waiting is indeed
hell!) she told me 
>"this is a sh---y cancer but you are not
doomed!"  I did 4AC rounds over 
>8 weeks, and 4 taxotere rounds over 12 weeks.  My last
chemo was 12/06 
>just before Christmas.  I have had neulasta for white
blood cell boost, 
>and am on Arinesp now every 3 wks for red blood cell
boost.
>I had a chemistry blood test in the beginning and Blood
counts  to check 
>levels.  I have bilateral mastectomies coming in
January, with radiation 
>to follow in February 07.
>
>I have never had a PET scan, tumor markers, or any other
tests thus 
>far.  Should I ask for them?
>
>When I asked my onc about "How do we know it
worked?"  she said, " If 
>the cancer doesn't come back, I'll take the
credit."   She's
given me 
>the impression that scans are fine if you have problems
to look for.  If 
>I asked for them she'd do them, however.  She is one who
usually 
>presents at these conferences on Breast cancer, so I
know she's up to 
>date with the latest.
>
>Well, I just wanted to have my story told and show that
treatments vary 
>with individuals and Oncologists.  I don't like hearing
or reading the 
>stats because there are too many variables in this mix
to count on any 
>numbers for our chances.  The idea for me is to keep
fighting with 
>whatever is in my means, and live my life unshackeled
from the fear of 
>doing the "wrong thing".
>I plan on having  reconstruction in the fall of 07 (hey
how else could I 
>get a boob job and a tummy tuck all at once?) and
enjoying each day I have.
>
>Thanks for listening to my long missive!
>Ruth
>
>
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Ruth,
  I was also diagnosed in June '06, but went directly to
chemo 4 rounds A/C every 2 weeks and then 4 rounds Taxol
every 2 weeks.  I then had mastectomy with 9 out of 24 nodes
positive.  A week after mastectomy I started Femara and now
am halfway through radiation.  My oncologist also doesn't do
tumor markers, PET scans and such.  He tells me that tumor
markers are very inaccurate and therefore misleading.  He
says that he is more interested in how I feel.  I asked
about bone scans and he said they also don't show anything
until it is too late. ( Too late meaning incurable, but
treatable).  It still bothers me not to have scans though. 
I had scans at the beginning of my cancer, and only when I
complain about a pain..(I had chronic.chest pains for
while...turned out to be stress, go figure!).  I think the
oncologists are divided on this issue.  I have heard other
doctors feeling this way also, but it seems to me that the
big cancer centers seem to do many more tests.  My
 girlfriend left her oncologist and went to Sloan because
her's wasn't planning on  doing mega testing.  She's 5 years
clear, but she would have been either way, right!!??  I
think I am going to talk to my oncologist about simple
mental health!!  A clean scan would just make me feel happy,
even if it isn't necessarily accurate!
  Sue
  NY
Ruth Coates <racoatesbtc-bci.com> wrote:
  Hello all,
I am also a newbie, and RN, and understand much of the
medical 
terminology here. In my journey,6/06 I found a sore lump
that went from 
a couple centimeters to about 3 inches long over a weekend.
I saw my 
regular internist who promptly got me a mamogram which
showed nothing, 
and a ultrasound which showed a "structure" about
.9cm in a duct. at 
this point I had a small area at the site that was pink. I
had a 
lumpectomy in 7/06 (it took that long to coordinate someone
to operate) 
which showed DCIS, plus some very disturbing
undifferentiated cells 
outside the ducts, which was felt to be IBC, and no clear
margins. My 
surgeon (at the time who was very young) said, "it
can't be IBC, you 
don't have peu d'orange skin". I took it upon myself to
call my 
favorite Oncologist I work with who said " You need
more surgery to try 
and get clear margins and a sentinal node for biopsy".
She called my 
surgeon and this we did in later 7/06, with the results of
still no 
clear margins, more ductal CA and definite diagnosis of IBC,
with 4 out 
of 12 nodes positive, 2 of which were grossly positive on
sight. 

My oncologist now ordered the scans, CT chest and abdomen(No
chalky 
drinks though all IV contrast), Brain scan, and Bone scan.
All these 
came out negative for cancer hot spots thank God! This was
8/06. When 
she finally had all the results (waiting is indeed hell!)
she told me 
"this is a sh---y cancer but you are not doomed!"
I did 4AC rounds over 
8 weeks, and 4 taxotere rounds over 12 weeks. My last chemo
was 12/06 
just before Christmas. I have had neulasta for white blood
cell boost, 
and am on Arinesp now every 3 wks for red blood cell boost.
I had a chemistry blood test in the beginning and Blood
counts to check 
levels. I have bilateral mastectomies coming in January,
with radiation 
to follow in February 07.

I have never had a PET scan, tumor markers, or any other
tests thus 
far. Should I ask for them?

When I asked my onc about "How do we know it
worked?" she said, " If 
the cancer doesn't come back, I'll take the credit."
 She's
given me 
the impression that scans are fine if you have problems to
look for. If 
I asked for them she'd do them, however. She is one who
usually 
presents at these conferences on Breast cancer, so I know
she's up to 
date with the latest.

Well, I just wanted to have my story told and show that
treatments vary 
with individuals and Oncologists. I don't like hearing or
reading the 
stats because there are too many variables in this mix to
count on any 
numbers for our chances. The idea for me is to keep fighting
with 
whatever is in my means, and live my life unshackeled from
the fear of 
doing the "wrong thing".
I plan on having reconstruction in the fall of 07 (hey how
else could I 
get a boob job and a tummy tuck all at once?) and enjoying
each day I have.

Thanks for listening to my long missive!
Ruth


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Dear SUSAN,
	Having tests, scans, markers, etc. is a CHOICE.  But I do
NOT trust how I 
feel.  I felt just fine and appeared to have NO medical
problems, when I 
was in the very late stages of IBC with 14 positive lymph
nodes.  I went to 
5 breast specialists and they all gave me a CLEAN BILL OF
HEALTH.  Without 
a breast biopsy, I would have died in a few months.  I am
glad my 
Oncologist believes in tests, scans, and markers.  Breast
Cancer TUMOR 
MARKERS can be a big help.  There are rarely false
positives, but can have 
false negatives.  This means if your tumor markers are
climbing, it would 
be best to have scans and tests to check out WHY!
	One's MENTAL HEALTH is always very important.  I have a lot
less stress, 
because I have had 3 CT and 2 Bone scans this year to check
WHY my CA 27-29 
markers are climbing - now at 120 (normal range 0 -38).
	Best wishes.   MARYL, ibc, Cincinnati	


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Hi, Maryl - Actually, the incidence of false positives and
false 
negatives from tumor marker tests depends on the particular
tumor marker 
being used. 

And, external factors can screw up the results.  For
example, if a 
person smokes or is exposed to second-hand smoke, she may
get an 
unusually high numerical value for the CEA test. 

Another strange situation is a friend who had an elevated
CEA result for 
14 months with NOTHING showing on any kind of scan or other
blood test.  
Then, it went to less than 3 (normal) and has been there for
the past 11 
years.  It's a DUH! 

My oncdoc says the most important thing is to look when the
results are 
out of range and NOT to take them as indicators of anything
but the need 
to look.

HTH.

v

--
 /     Virginia R. Hetrick, here in sunny California
 0      Email:  drjuicegte.net
 Oo     "There is always hope."
My fave:  http:
//www.washington.edu/cambots/camera1_l.gif

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Dear VIRGINIA,
	Thanks for this information.  I greatly appreciate it.  I
agree with your 
ONC.  Also for some individuals CT and Bones Scan raise
their stress levels 
and some have a difficult time taking these scans.  I have
been lucky so 
far, my body handles these scans well.  I do not mine
devoting a full day 
at the hospital to get a CT and Bone scan.  Also my medical
insurance paid 
80% of my first CT and Bone Scans this year (cost over $
6,000) and then 
cover 100% of the 2nd Bone Scan and 2nd & 3rd CT Scans. 
It is a complex 
matter, since lots of factors enter into getting the tests
and scans.  I 
feel very lucky with my insurance to date.  MARYL, ibc,
Cincinnati


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