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*sigh*

Semira's picture
Semira
Posts: 352
Joined: Mar 2012

*sigh* Had our appointment with the surgeons and are not happy with the outcome...
They (remark: the university of cologne!) were ill-prepared and had no idea why we were there, at first they had no records and no plan. What they told after reading up the stuff in the computer did not please us either so we will go for a second/third opinion.
At least they confirmed that they expect this to be a peritoneal met and want to do surgery directly, so no biopsy and no diagnostic laparascopy first. And they would cut it out, even if that means to sacrifice more colon without being sure it is malign.
And after all this, they would do only the old-fashioned surgical and systematic chemo approach an no modern things like HIPEC.
So no way we say "yes" without getting some more opinions especially of places who do HIPEC or PIPAC. We will get active now and look for alternatives here in Germany...
At the moment I am more angry than in panic. I guess that is a good thing...

greetings from germany

Petra

karguy's picture
karguy
Posts: 1024
Joined: Apr 2009

You should get a second opinion.You should get a biopsy,etc. first,before surgery.Good luck.

tanstaafl's picture
tanstaafl
Posts: 1134
Joined: Oct 2010

We carry all a copy of our records to important meetings and have a full historical spreadsheet for blood test results ready.  Depending on others records is begging for "huh?!"   Since we operate a la carte amongst hospitals, we're ready to take on new doctors at any time.  

 

abrub's picture
abrub
Posts: 1636
Joined: Mar 2010

My peritoneal mets were carefully removed and I had Intraperitoneal chemo with FUDR (a form of 5FU).  Many others have the HIPEC.  Find that expert and move forward.

Sending lots of good thoughts,

Alice

annalexandria's picture
annalexandria
Posts: 2572
Joined: Oct 2011

It's just crazy that a reputable facility would not be prepared for your visit!  Is there somewhere else you can go to get another opinion?  Preferably somewhere that offers things like HIPEC, so you can discuss all possibilities?  Keep us posted!

Hugs to you both~AA

PS  I should mention that I had several spots on the peritoneum that didn't require HIPEC, so surgery alone can be effective.  Just in case that ends up being the route you take...

hippiechicks's picture
hippiechicks
Posts: 509
Joined: Sep 2012

I agree,  sounds as though it is time for second, third or forth opinion!  I would find it difficult to have much faith in a doctor who was not prepared for my very important visit.  

Best of luck! Sending positive energy!!

marbleotis's picture
marbleotis
Posts: 627
Joined: Mar 2012

Get a 2nd, 3rd, or 4th opinion!

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