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Thread: Letter a repeat re: surgery vs: not surgery NEED HELP PLEASE




Letter a repeat re: surgery vs: not surgery NEED HELP PLEASE
user name
2006-12-24 04:19:04
Everybody,
 
Happy Holidays!!!  Still trying to figure out the surgery
vs. no  surgery 
debate.  I personally, did not receive a clinical response
to  taxotere, 
carboplatin, and herceptin.  Did receive a pathological
response  in light of tumor 
marker going down from 770 to 225,
 
When on the A/C the breast regressed.  I had 3 palpable
lymph nodes  which 
also showed "3 hypermetabolic lymph nodes".  No
pathological response  on 
A/C...tumor marker only went down from 225 to 199.  Then on
herceptin  alone tumor 
marker went down to 86.  It did not go down to 26 until one 
year of aromasin 
was completed.
 
I was evaluatated for surgery in May of 04 to be done 07-04.
  Authorization 
obtained 08-06 and tumor marker up to 168.  Tried gemzar 
and herceptin with 
nothing really happening.  The arimidex I was on for 26 
months put me into a 
complete pathological and clinical remmission.  Tumor 
marker slightly 
increased and change to aromasin
.
Tumor marker down.  I did not respond to chemo, though did
to  hormonals
 
I can still have surgery as I have only local disease; no
evidence of  
metastatic disease in over 3 years.  If I have surgery, my
chances of  geting a 
response to chemo is not any better since did not 
neoadjuvently.  How can I have 
surgery without any chemo adjuvently that  will work.?
 
My doctor feels that I do not have IBC anymore though she
charted last  week, 
"inferior aspect of breast has skin thickening and
induration  (hardness).  
No palpable lymph nodes.  Left breast looks normal though 
is still larger than 
right."  MRI showed "skin thickening" over
entire  breast.  
 
My doctor states that surgery is still an option since the
disease is  local. 
 She is sending me to UCLA to see about avastin and Tykerb. 
 This is to get 
hooked in with UCLA before I am in a crisis state and the
next  generation of 
hormore therapy does not work.
 
My gut tells me not to have surgery.  My family and friend's
do not  support 
surgery because I look very healthy and have beat the odds
following a  very 
grim prognosis at Dx over 3 years ago.  Even with the
original  treatment plan 
of 6 months neoadjuvent chemo, bilateral mastectomies, 2
MONTHS  of radiation 
and 4- 6 months adjuvent chemo.  Also adjuvent arimidex or 
femara or 
tamoxifen the surgeon told my friends that my prognosis was
very  poor.  The 
oncologist (picked up chart) had me on every chemo there was
 after surgery until I 
died.  He told me that my first PET would  probably be
normal and that we would 
not see mets until after surgery and would  treat it with
radiation.  Changed 
oncologists almost 3 years  ago.   
 
The former oncologist told me..".no more chemo, no
chemo will work;we have  
to procede locally".  I changed oncologist who told me
that it would have  been 
a "toilet mastectomy".  I have baffled all of the
doctors by my  disease not 
progressing.
 
My Dr. is willing to treat me systemically.  Surgery is not
a  solution, I 
think.  With no response to chemo and obvious slin 
involvment...does anybody 
have any advise?
 
I know I have written about this before.  My oncologist's
last  charting 
stated, "The decision will ultimately be the
patients."  Any  ideas???
 
Thank you,
Peace to all this Holiday Season,
 
Susan Anne in Ventura, California 

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