Pls help answer my questions

Hello,  I wrote a couple of wks ago about suspecting that my
former DCIS cancer (2 yrs ago at age 38 and while pregnant,
presented only as nipple bleeding and swelling) has recurred
in the form of IBC. I've had both breasts removed (cancer
was in left breast) and have not reconstructed. In the past
month though, I've developed an area on each breast, near
my armpit on each side, that persistently itches and both
sides show tissue/skin thickening. My surgeon is more
concerned that I have a regular recurrence on my left side,
thinks virtually nothing of the right side concerns, and he
is totally dismissive that IBC could be any part of this. I
had a CAT scan on Tuesday which came back normal (hooray)
but we've decided to biopsy anyway since my first cancer
didn't show on films either. 
 
Questions: 
1. My surgeon says you can't get IBC if you don't have
your breasts anymore. Has anyone been diagnosed with IBC (as
a recurrence or as a new cancer) in a breast that was
previously removed? 
2. Has anyone had their IBC show up on a CAT scan? Has
anyone not had it show up on a CAT scan?
3. I know that IBC can present in several different ways -
that no one factor is always there. For those of you who
presented without the 'orange peel' skin effect, please
let me know how you presented so I can show this to my
doctor to educate him (he also thinks the orange-peel effect
is always present when dealing with IBC).  
 
I know this sounds awful of my surgeon but he really is a
great person and dr - he just needs to be better educated.
And I know I'm asking a lot but your answers could really
help me. My biopsy will be sometime early next week so a
response over the weekend would be great.  Sorry this is so
long. I've followed your emails for 2 wks now and have to
tell you how tremendously impressed I am with you all.  You
are such spirited, smart, strong and caring women - I wish
you all the bounty of health you so rightfully deserve! 
Love and support to you, Kathy

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I had DCIS and bilateral mastectomies in 1999.  In 2003, I
had a  
recurrence as IBC.  I have never had the orange peel skin. 
Ibc  
showed in my lymph nodes during my CT/PET scans but never
shows in   
the skin.
Hope this helps.






Mary in Santa Barbara, CA.
Dx  1999 with DCIS, Bilateral mastectomies. Negative
sentinal node-- 
no  other treatment recommended.
Aug. 03 dx IBC at age 55. Stage IV due to submandibular and
neck  
lymph node involvment.
same pathology as original DCIS
ER-,PR-. Her2+++
  using 2 monoclonal antibodies--herceptin and avastin.



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Kathy,

You said your doc stated: "he also thinks the
orange-peel effect is  
always present when dealing with IBC)."

You might want to show him actual stats that this is not
always the  
case.  If you need I am sure many on this list can give you
more info  
on this.

Bless

Patti




On 28/07/2006, at 6:18 PM, Kathy Finger wrote:

Hello,  I wrote a couple of wks ago about suspecting that my
former  
DCIS cancer (2 yrs ago at age 38 and while pregnant,
presented only  
as nipple bleeding and swelling) has recurred in the form of
IBC.  
I've had both breasts removed (cancer was in left breast)
and have  
not reconstructed. In the past month though, I've developed
an area  
on each breast, near my armpit on each side, that
persistently itches  
and both sides show tissue/skin thickening. My surgeon is
more  
concerned that I have a regular recurrence on my left side,
thinks  
virtually nothing of the right side concerns, and he is
totally  
dismissive that IBC could be any part of this. I had a CAT
scan on  
Tuesday which came back normal (hooray) but we've decided
to biopsy  
anyway since my first cancer didn't show on films either.

Questions:
1. My surgeon says you can't get IBC if you don't have
your breasts  
anymore. Has anyone been diagnosed with IBC (as a recurrence
or as a  
new cancer) in a breast that was previously removed?
2. Has anyone had their IBC show up on a CAT scan? Has
anyone not had  
it show up on a CAT scan?
3. I know that IBC can present in several different ways -
that no  
one factor is always there. For those of you who presented
without  
the 'orange peel' skin effect, please let me know how you
presented  
so I can show this to my doctor to educate him (he also
thinks the  
orange-peel effect is always present when dealing with IBC).

I know this sounds awful of my surgeon but he really is a
great  
person and dr - he just needs to be better educated. And I
know I'm  
asking a lot but your answers could really help me. My
biopsy will be  
sometime early next week so a response over the weekend
would be  
great.  Sorry this is so long. I've followed your emails
for 2 wks  
now and have to tell you how tremendously impressed I am
with you  
all.  You are such spirited, smart, strong and caring women
- I wish  
you all the bounty of health you so rightfully deserve! 
Love and  
support to you, Kathy

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patti bradfield
Redmond, WA
www.phbservices.com




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Hi Kathy,
   
  Congratulations on the superb way you are going about
advocating for yourself!  Good for you!
   
  The only question I can address is the peau d orang (I
swear, I never can remember how to spell that), maybe
because I never had that symptom.
   
  I presented with a red, swollen, warm to the touch breast.
 No rash.  If your surgeon is reading this:  "Hi Doc,
put that in your pipe and smoke it".  Please don't
make the mistake of basing a diagnosis on the lack of the
rash.  
   
  I was diagnosed almost 7 years ago.  Wonder if I'd still
be here if my doctor insisted I didn't have ibc because I
didn't have the rash???
   
  Kathy - Way to go girl!!!!!
   
  Mary Ann


Diagnosed with Inflammatory Breast Cancer (Stage IIIB) at
age 52 - 8/16/99 
Treatment began 8/17/99 - 5 days after noticing symptoms 
4 rounds Adriamyacin & Taxotere 
Bilateral mastectomies 
Taxol every 3 weeks for 4 months 
36 rounds radiation 
6 months weekly herceptin 
NED - and praying that each of you will be, too. 
 
Happily married for 29 years
Two beautiful daughters (now grown - sort of)
Also have 4 adorable cats

Now designing/sewing and Selling (God willing) chemo hats,
check me out at: 
http://www.cjhats.com
 
OR, If you prefer eBay:
http://stores.ebay.com/
cjhats
 
I also sell  Comfort Pockets - for post surgical drains
 






 		
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Questions: 
1. My surgeon says you can't get IBC if you don't have
your breasts anymore. Has anyone been diagnosed with IBC (as
a recurrence or as a new cancer) in a breast that was
previously removed? 
  I have locally advanced IBC.  Left mastecomy with
recurrence in the same breast almost immediately.  Spread to
my right breast.
  
2. Has anyone had their IBC show up on a CAT scan? Has
anyone not had it show up on a CAT scan?
  I very recently had a CAT scan to help plan radiation. 
Even thought my cancer is considered advanced, it didn't
show up on the CAT scan.  Didn't show up on the PET scan,
breast MRI, or ultrasound either!  This is a tough beast to
detect.  It is easy to see how it is misdiagnosed so often.
  
 


 


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Hi, Kathy(s) -

First,  Kathy H's surgeon is wrong.  NO surgeon, according
to my surgeon 
who's done on the order of 14,000 mastectomies of various
sorts in his 
very long career, can get all of the breast tissue out
simply because a 
lot of it looks NO different from the tissue (usually
muscle) to/in 
which it is connected, embedded, hidden, etc.

Second, remember that when a surgeon says "We got it
all" truly means "I 
looked as hard and as far as I could and we got everything I
could 
identify".  The times when a surgeon has come into a
patient's room and 
said "We got it all" are too numerous to count. 
The correction I've 
made to that statement to all of them has been acknowledged
by nearly 
all of them.  As best I can recall, only three have said
something on 
the order of "You're nuts and don't have a clue what
you're talking 
about". 

Of interest may b a teen-age girl's situation with
osteosarcoma of the 
right leg who'd just had an amputation.  Her surgeon agreed
with my 
correction and said that's the way he'd word it in the
future!  YES!!!!  
I have no way to know whether he followed up on that
promise.

Important points about whether a cancer, not just IBC, show
up on any 
form of scan are the following:

1.  The cancer must have enough tumor cells in it to be
"resolvable" on 
the particular form of scan.  As an example, thing of
something the size 
of a "full-grown" green pea will have several
billion cells.  A cancer 
that size should be seen on most forms of scan.  A tumor of
several 
million cells won't be that big and very possibly won't be
visible on 
any form of scan.  Then there are the "tweeners"
that show up depending 
on the angle of the scan device.  If you're curious about
tumor size, 
take a look at

http://www.yana.
org/doublingtime.htm

2.  My term "resolvable" means that the scanning
modality can pick up 
something of a particular size.  Each scanning modality
picks up 
somewhat differently size "thing".  If you think
of a normal film 
camera, imagine taking a picture of a kid standing in front
of a tree in 
your back yard.  You won't see the individual blades of
grass in the 
picture, but you will see enough green (or brown) stuff to
know there's 
grass there.  Same for the leaves or needles on the tree. 
The 
individual blades, leaves, or needles aren't resolvable,
given the 
resolution of the film and, likely, the distance from which
you see the 
grass and trees.  But, you will see the kid's eyes though
probably not 
the individual eye lashes or individual eyebrow hairs in the
picture.  
If you get really close to the kid and take a professional
picture, you 
probably will see the lashes and hairs as well as individual
hairs from 
the scalp.

3.  Additionally, each scanning modality picks up whatever
it finds 
according to the "behavior" of the object with
respect to the technology 
of the modality.  For example, a CAT or CT scan is
essentially an X-ray 
technology.  So, if something is not visible on a normal
diagnostic 
mammogram, it wouldn't be very likely to show up in a CT
scan.  

By contrast, an MRI depends on the orientation of atoms in
the molecules 
that make up the tumor.  Imagine a small bag of popsicle
sticks dumped 
out on a tabletop; they'll be in a lumpy, bumpy pile. 
Then, take the 
popsicle sticks and order them so that you have rows and
rows of them 
flat on the table.  That's a little like what all the
thumping and 
bumping of the MRI equipment does to the atoms in all the
cells of your 
body (except it doesn't flatten you out!  .  So,
it's more likely to 
pick up things that wouldn't show up on a CT scan, provided
that the 
reason they didn't show in the CT scan is because they
simply weren't 
identifible in the CT modality.

Then, a PET scan depends on the metabolism of cells.  The
contrast 
medium used in PETs is normally a glucose molecule with an
ion of 
fluorine attached to it.  If a molecule of this special
glucose is 
metabolized by any cell, it releases (emits (that's the E
in PET)) 
what's called a positron (that's the P in PET).  The
positrons are 
registered by tomographic (that's the T in PET) device and
reorganized 
by a computer into the pictures you see the techs and docs
looking at.  
Something that's metabolizing glucose fast will emit more
positrons than 
something that's running slower.  Your heart (DON'T PANIC)
will likely 
show up because it's just sitting there doing its normal
thing and it 
runs faster than most other parts of your body.  Also, just
because your 
bladder collects urine on its way out doesn't mean that the
liquid that 
collects in there while you're in the PET scanner is
indicative of cancer.

4.  Finally, any scanning modality depends on identifying
the "edges" of 
tumors.  So, if a person has a tumor the size and
approximate shape of a 
green pea, the little round thing would probably be
identifiable because 
of the contrast with the tissue around it.  Typically,
tumors are more 
dense than the surrounding tissue.

But, in the case of IBC, it is quite possible for it to
occur in 
"sheets" rather than as lumps or bumps
(regardless of size).  Even if 
the radtech does see the edge of a sheet in a squishogram,
it could well 
be mistaken for a normal breast structure because we all
have (or had) 
different shapes of things in normal breasts.

So, in conclusion, it is quite possible for IBC and other
cancers, 
"regular" breast cancer as well as cancers found
in other anatomical 
locations, not to show up on ANY scanning modality.

My notion is that we do as much as we can to get an accurate
diagnosis.  
But, NO doc -- good or otherwise -- can go beyond the
capabilities of 
his/her knowledge and available technology.  Even if we're
vocal 
advocates, if the doc won't do something when we raise an
issue, our 
vocal behavior will have virtually no impact.  That's why
it's so 
important to have an aggressive doc who will advocate for
her/his 
patients, even if it's necessary to tick him (lady docs
seem to get our 
pushing for particular things) off to get the test or scan.

HTH.

virginia
--

\ /     Virginia R. Hetrick, here in sunny California
 0      Voicemail:  310.471.1766  Email:  drjuicegte.net
 Oo     "There is always hope."
My fave:  http:
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Kathy,

While my original diagnosis (once they got it right after
the nine months of
mastitis BS) was IBC, I never had the orange peel skin, so
you can have IBC
without it. I just had a pink area that looked like a mild
sunburn,
swelling, and breast pain. By the time I was diagnosed, my
breast was hard
like a tennis ball, but I still didn't have the orange peel
skin.

The same breast had an invasive ductal carcinoma. My doctors
have given me
conflicting opinions on whether I had two separate cancers
or whether the
IBC was a locally advanced stage of the tumor. As yours was
in situ, it
would be strange for it to have metastised, but I guess
it's conceivable
that if you still had breast skin left and the genes for IBC
that you could
possibly get IBC in the skin, but I don't know. I know that
since my
mastectomy I have had recurrences in the skin, but I had IBC
to start with.

I don't think I answered your question.

Susan

-----Original Message-----
From: ibc-bouncesibcsupport.org [mailto:ibc-bouncesibcsupport.org] On
Behalf Of Kathy Finger
Sent: Friday, July 28, 2006 9:19 PM
To: ibcibcsupport.org
Subject: [ibc] Pls help answer my questions

Hello,  I wrote a couple of wks ago about suspecting that my
former DCIS
cancer (2 yrs ago at age 38 and while pregnant, presented
only as nipple
bleeding and swelling) has recurred in the form of IBC.
I've had both
breasts removed (cancer was in left breast) and have not
reconstructed. In
the past month though, I've developed an area on each
breast, near my armpit
on each side, that persistently itches and both sides show
tissue/skin
thickening. My surgeon is more concerned that I have a
regular recurrence on
my left side, thinks virtually nothing of the right side
concerns, and he is
totally dismissive that IBC could be any part of this. I had
a CAT scan on
Tuesday which came back normal (hooray) but we've decided
to biopsy anyway
since my first cancer didn't show on films either. 
 
Questions: 
1. My surgeon says you can't get IBC if you don't have
your breasts anymore.
Has anyone been diagnosed with IBC (as a recurrence or as a
new cancer) in a
breast that was previously removed? 
2. Has anyone had their IBC show up on a CAT scan? Has
anyone not had it
show up on a CAT scan?
3. I know that IBC can present in several different ways -
that no one
factor is always there. For those of you who presented
without the 'orange
peel' skin effect, please let me know how you presented so
I can show this
to my doctor to educate him (he also thinks the orange-peel
effect is always
present when dealing with IBC).  
 
I know this sounds awful of my surgeon but he really is a
great person and
dr - he just needs to be better educated. And I know I'm
asking a lot but
your answers could really help me. My biopsy will be
sometime early next
week so a response over the weekend would be great.  Sorry
this is so long.
I've followed your emails for 2 wks now and have to tell
you how
tremendously impressed I am with you all.  You are such
spirited, smart,
strong and caring women - I wish you all the bounty of
health you so
rightfully deserve!  Love and support to you, Kathy

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