• From: Kalmar, Sweden
  • Registered: Sun, 20 May 2007
  • Posts: 1,951

Topic: doctor section

While in the shower thinking about cc (doesnt everyone?), I thought of all the hurdles we face. One of the biggest is its rarity and that many doctors dont have experience with it. That people who do have experience, might only have a couple of patients and not really enough "research" to write a paper for the big journals, but good and bad experiences that add to the general knowledge. Wouldnt it be great if this board had a section for doctors only (password protected so we patients couldnt see) where doctors could ask each other questions and share experiences that would help others. perhaps there is already a community for them? I dont know, but if not, I think there needs to be one.

I know this site focuses on patients and carers, but we all need knowledgable doctors. I think it would be great if they had a place where they could interact and throw ideas off of each other. Just a thought....

Cancer is a word, not a sentence.

36 year old patient with buckets of hope
  • JeffG
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  • From: Kansas
  • Registered: Mon, 16 Oct 2006
  • Posts: 1,242

Re: doctor section

Hi Kris .... Just a great thought.  Something to consider for sure.  It just happens I was discussing websites and the convention in chicago with my Oncologist a few weeks ago and I mentioned a new drug use for chemo  and he said yea I know I was there and then he mentioned most doctors have alumni websites for their specialty.  He mentioned his was kappa papap something through Sloan Ketting Memorial Residency.  I haven't tried getting in to yet.  Most of them are protected or divided patient only /doctor only.  But if that was something we could do and possibally invite all oncologist,gastro,etc. to use would be great.  I won't say where I do my brainstorming Ha!  Hope your doing well in swedon?
Bless ya ,
jeff G.

Take it to the Limit,One More Time! (Eagles)
  • Lainy
  • Lainy
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  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,199

Re: doctor section

I so needed a good laugh today...and you did it!  To think that we all think best in the same room in the house is hilarious.
I also feel the suggestion is a great one, IF they will communicate with each other. I told Teddy's ONC last week that I go to this web site and he wrote it down saying, I only have one other CC patient. What a rare breed we are in every which way!!

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.
  • Sara
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  • From: Houston, Texas, USA
  • Registered: Thu, 12 Jan 2006
  • Posts: 285

Re: doctor section

Kris,

Marion alerted me that you posted this topic today.  That is a wonderful suggestion!  I'm kicking it around in my head a bit, trying to figure out a good means of verifying that the users are doctors.  Additionally, we'll likely forward this to the Medical Advisory Council to get their input.  Doctors generally shy away from open message boards out of liability concerns, but perhaps they would be more open to a message board only populated by doctors... 

It's definitely a great means of reaching out to your average clinicians, who only see one cholangio patient in their career.  The Foundation cannot educate these doctors to the level they need, but perhaps the experts in the field can help with this element.  Great food for thought. 

The shower is a great place for ideas!

30-something caregiver
  • From: New Jersey
  • Registered: Tue, 20 Nov 2007
  • Posts: 306

Re: doctor section

Sara,
Just some input...at the CyberKnife

Wishing all God's blessings!
  • Sara
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  • From: Houston, Texas, USA
  • Registered: Thu, 12 Jan 2006
  • Posts: 285

Re: doctor section

Karen,

This is great precedence to show to some of our medical contacts.  I've been striking out just asking them to host a chat due to liability issues, but perhaps I can approach from another direction...

Thanks for sharing!  It definitely opened my mind to another approach.

-s

30-something caregiver
  • RANK
  • Senior Member
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  • Registered: Mon, 02 Jun 2008
  • Posts: 93

Re: doctor section

I think this is a great idea.  I would love to see a section for patients and caregivers with a list of Drs we are all using that are treating cc.  At last we'd know which Drs to contact with some experience treating cc.

  • JeffG
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  • From: Kansas
  • Registered: Mon, 16 Oct 2006
  • Posts: 1,242

Re: doctor section

I just wanted to pop in and say ... This entire site is about patients and caregivers who freely provide information of personal experiences, treatments, Hospitals, Centers, and Doctors.  This site itself is designed and provides contact information for the major leading Cancer centers that we have found to have professional expertise.  I believe and Kris you correct me .. your suggestion was for doctors to be able to come to Cholangiocarcinoma site and have a password protected section for them to be able to share experiences / knowledge to increase the knowledge of all doctors.  Then their inter-action may bring about better ways or new ideas in treating CC.  We the patients no see I agree, but allowed access by the medical advisory council who could then evaluate if any information provided could be shared with us,  with out violating the forum/ Doctors confidentiality.  I just wanted to make clear in my mind that is what the original suggestion was; as this new and continually growing site is marvelous just the way it is set up.  It already provides us the tools to interact and find great treatment centers and professional doctors. All we have to do is take some time and point, click, and read to gain knowledge.   Again ,great idea Kris!
Jeff G

Take it to the Limit,One More Time! (Eagles)
  • Registered: Fri, 06 Jan 2006
  • Posts: 258

Re: doctor section

These are great suggestions.  This is one of the reasons we attend the conferences so that we can listen to the latest presentations and talk with these Dr's.  This is also one of the reasons the Dr's attend the various  conferences during the year so that they can talk and share ideas and concepts.  It would be wonderful if we could find a way for them to discuss cholangiocarcinoma in a forum they could feel comfortable with.  Sara is correct.  This is something we need to pass by the Medical Advisory Committee. 

I also want to say that we may lack acknowledgment, huge funding and an abundance of information, but creativity is not one of the things cholangiocarcinoma patients are lacking.  This is one of our great strengths.  If you have an idea put it out, let's see what we can generate. 

Margaret Mead said "Never think that a small group of individuals can't make a difference... Indeed it is the only thing that ever has! 

I love this quote because it reminds me of all of you.  Because we are small does not mean we are insignificant or weak,  it means we have to work differently.  We have to think smart and creatively and those are things we absolutely can do.   

Stacie