• From: Columbia, SC
  • Registered: Thu, 10 May 2012
  • Posts: 60

Topic: We're Moving

My husband has been treated with chemotherapy for the past 6 months here in Columbia but we have sold our house and on Monday are moving to Pennsylvania.
Back to hometown where family (fantastic support system) is.  It is 2 hrs. from Pittsburgh.  This past week, I called UPMC liver cancer center to find a new doc.  After giving info. regarding Chris's diagnosis and treatment so far, the director told me that I had called a surgical oncology office and that she would give me the name of a medical oncologist.  I did some research and called a different one because going by the bio of that doc I couldn't see that he had any special interest in biliary cancers, the other one does.  We have an appt. with him on Friday.  My question is this--is the route to a surgical oncologist always through a medical oncologist?  Or is there a way around that?  Should we even want to?  I've read about some seriously aggressive surgery for cancer in Pgh. meaning resection, debulking of metastasis, and hyperthermic chemotherapy (intraperitoneal) during surgery.  I am finding it difficult to discover what kind of results they are achieving.
I find I am very conflicted about going "there".  Both my husband and I are nurses with ICU experience and have seen too much probably.  When there are complications, not only do you end up with a shorter life, but a hellish death to go with it.  He says the prospect of that terrifies him (terrifies me too)  Says he wants to spend his days fishing and enjoying things to the extent he can.
But I'm probably putting the cart before the horse, we've seen no doctor as yet that has said there was any surgical option at all. 
Another thing that gives me pause is that I have only seen one person post on this website that their family member was scheduled for this type of surgery for stage IV CC, but they never posted after that how it went and the outcome. I don't know, it's hard to know what to do sometimes.  It's like a minefield.

  • From: Uniontown, Ohio
  • Registered: Fri, 23 Sep 2011
  • Posts: 1,488

Re: We're Moving

Hi there,

If I am not mistaken, I believe our Susie from this site had a resection there and she was also an oncology nurse. I am sure she could recommend a great doctor, answer any questions you might have, and put your mind more at ease. I hope you will be able to talk to her and I wish you and your husband all the best.

-Pam

Hoping for a miracle for my daughter, Lauren.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Pamela's Website

  • Lainy
  • Lainy
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  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,213

Re: We're Moving

dmj4ctj, moving is good! Change of atmosphere, new beginnings and the loving old familiar faces! Good luck on relocating! On the ONC routing question in our case Teddy was referred to his Radiologist and ONC surgeon by his Medical ONC who sent us to the BEST. I think you have to look at all the DOCs as your team and BTW no matter who we visited I made sure all involved got copies of what ever they needed. About how far to go, that is a tough one. No one was tougher then my Teddy (good ol Sicilian tough) and in the beginning he had an aborted Whipple after a 4 hour surgery, a double ecoli infection, then the real deal 3 weeks later, then a hole opened at the incision site inside and he went in to rehab on nothing but an IV for 3 weeks which allowed the hole to heal on its own. Then after 3 years the CC returned where his duodenum used to be and he had radiation and Cyber Knife. On its return the tumor bent his right ureter and he had to have that stented every few months to keep it open. He was 73 when he started and this all bought him 4 1/2 years. The CC returned again and at 78 he decided enough was enough no more treatment and he lived for 6 months. Point is we bought almost 6 years by what he did do and when he said no more, I was relieved for him. This site is full of the most courageous people I have had the honor to know. When you come down to it, listen to your gut it willnot steer you wrong. Best of luck and keep us updated.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

4 Reply by PCL1029 (edited by PCL1029 Sat, 06 Oct 2012 12:36:04)

  • Registered: Fri, 15 Oct 2010
  • Posts: 1,735

Re: We're Moving

Hi,
From a medical professional to another.
I think the order of the speciality you mentioned  which to see first  is not that important in your case. For the type of cancer your husband and I had, the CCA,
I think ,if I were you, I will go to Dr. Kato to get his opinion about surgical opinion first . If the answer is no, then I will concentrate on finding interventional radiologist for the latest radiation treatments available in your area( since the advancement in radiation treatment is much faster than chemotherapy.). If the answer is still no, then medical oncologist . I am ,as you know, a patient of CCA,I truly understand your husband's " go fishing" feeling especially he has seen them all what had  happened in ICU over the years.Sometimes ,as your husband may agree,", too much may not be a good thing " after all.
Good luck and
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.
  • From: Columbia, SC
  • Registered: Thu, 10 May 2012
  • Posts: 60

Re: We're Moving

Thanks so much for your replies.  Moving has been very good for us. Has done wonders for his attitude. I don't know about pursuing any surgical option. Neither of us is very sold on that. Maybe if the next scan shows big improvement it might make us rethink it.  Will have to see what UPMC oncologist has to say on Friday.
               Dianne

  • Lainy
  • Lainy
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  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,213

Re: We're Moving

Dianne, I didn't realize you moved that fast! Good for you! See, you did the right thing. Please let us know how the meeting fors Fridy. Our best wishes are with you and Congratrs on the big move.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.
  • From: Akron, Ohio
  • Registered: Mon, 11 Apr 2011
  • Posts: 407

Re: We're Moving

Dianne,
I was diagnosed with Stage IV CC and have had two resections, one the summer of 2010 and another in the fall of 2011. Both were done by Dr. John Fung of The Cleveland Clinic Foundation. Dr. Fung was a liver surgeon at Pittsburgh for years. He is one of my Facebook friends, maybe you could connect with him for some advise about Pittsburgh.
Lisa

Everyday is a gift

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