*sigh*

Semira
Semira Member Posts: 381 Member

*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

Comments

  • karguy
    karguy Member Posts: 1,020 Member
    Yes

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

  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    self reliance

    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
    abrub Member Posts: 2,174 Member
    My peritoneal mets were

    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
    annalexandria Member Posts: 2,571 Member
    I'm sorry you had that experience, Petra.

    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
    hippiechicks Member Posts: 509 Member
    I agree,  sounds as though it

    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
    marbleotis Member Posts: 720 Member
    Do Not Accept That

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