• Registered: Sun, 03 Oct 2010
  • Posts: 30

Topic: Doing well after 2 years!

It's been quite a while since I've posted...I almost feel guilty doing so because I'm doing so well while others are not.  But I decided to post a comment to show that there is hope!  I had surgery at Mayo in Rochester, MN on 1/5/10 to resect my tumor, which by the way had clean margins.  I did not have chemo or radiation because my surgeon felt it would not benefit me and could cause harm.  I've gone back to Mayo every 3 to 6 months, and have had a few bumps along the way, but am now mostly feeling like my "old self."  I had not seen an oncologist at Mayo, but I requested a referral to Dr. Alberts and saw him 12/11.  He assured me that  my treatment would not have been different if I'd seen him earlier. I still worry a bit about recurrence, especially before returning to Mayo for my scans and blood work, but I do not let it get in the way of living life.  My very best wishes to all of you fighting this horrible illness for yourselves or for loved ones.

  • Lainy
  • Lainy
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  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,315

Re: Doing well after 2 years!

Dianne, it is so very good to hear from you and to read such a wonderful positive post. Good for you. Neverfeel guilty that you are doing well as that is what gives others the hope they need to fight this dreadful CC. I hope for you to continue on your path of Cancer free! Please drop by now and then, we love to hear the good news.

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.
  • Registered: Mon, 27 Jun 2011
  • Posts: 440

Re: Doing well after 2 years!

Dianne,

Congratulations!  I'm glad you're doing do well!!

Susie

  • From: Hilton, New York
  • Registered: Fri, 15 Jan 2010
  • Posts: 738

Re: Doing well after 2 years!

So Dianne,

I took a tour down memory lane and looked at some of your posts from the past because your course sounds so much like mine. Well of course we've traded comments before!  So glad to hear from you again.  Again we are on the same course...I have a scan on Feb 7th.  We are 2-year survivors you and me!  Yippee.

Feel free to email me directly if you ever want to compare notes.  randi.barrell@gmail.com. 

happy to hear you are doing so well.  I think this board needs it's share of good stories, so keep that good news coming!

Hugs.
-Randi-

Survivor of breast cancer (1994), thyroid cancer (1999), cholangiocarcinoma (2009).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.
  • From: Willow Grove, PA
  • Registered: Wed, 06 Apr 2011
  • Posts: 809

Re: Doing well after 2 years!

Both Dianne and Randi:
It's so good to hear numbers before the words cancer free. It really does give us hope. It's such a terrible disease that I for one really appreciate hearing that people have been able to beat it for over a year. I'm hoping that after my surgery in the next month or two (this is my 2nd surgery, where they are going to do the resection) I will hear the words clean margins and that 2 years from now I can post the same thing as you!
Actually, I hope in 5 years I can put a 5 in front of the words cancer free!!
Keep it up and post again, especially next year!!
Kris

Kris

Don't just have minutes in the day; have moments in time.
  • Registered: Fri, 12 May 2006
  • Posts: 8,312

Re: Doing well after 2 years!

Dianne....thanks so much for checking in with us, sharing your wonderful story and thereby giving hope to us all.
Congratulations, Dianne, and please, keep the good news coming our way.
All my best wishes,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER
  • From: Ireland
  • Registered: Thu, 15 Oct 2009
  • Posts: 260

Re: Doing well after 2 years!

Dianne
I just wish to echo what everyone else has said - 2 years cancer-free is great news. 

Gerry

  • Gavin
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  • From: Scotland - Dundee
  • Registered: Tue, 23 Sep 2008
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Re: Doing well after 2 years!

Hi Dianne,

Thanks for dropping by and sharing your good news with us all, and it is great news indeed that you have for us all!! Hopefully the good news will continue for you and I look forward to hearing more from you.

Best wishes,

Gavin

  • From: Revelstoke BC
  • Registered: Sat, 01 Jan 2011
  • Posts: 552

Re: Doing well after 2 years!

Love hearing good news stories! Here's to hearing more! Hugs. Nancy

Loving my husband from afar.
  • Registered: Sun, 03 Oct 2010
  • Posts: 30

Re: Doing well after 2 years!

Thanks to you all for your messages!
Kris...my very best wishes to you for a good outcome from your upcoming surgery....and may you be in that 5 year survivor group!  I'm planning on being there too!   smile

  • From: Uniontown, Ohio
  • Registered: Fri, 23 Sep 2011
  • Posts: 1,500

Re: Doing well after 2 years!

Dear Dianne,

It is so wonderful to hear a success story! That gives us so much hope. That is the one thing that can never be taken away from us- HOPE. Thanks for sharing and hope to hear more from you in the future. Take care and I wish you continued good health.

Love, -Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

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

  • Registered: Thu, 09 Sep 2010
  • Posts: 539

Re: Doing well after 2 years!

Dianne-Glad to hear positive outcome stories. I am 2 years cancer free and also feel some what bad when posting my story, but until there is more than just one handful of success stories on this site we need to keep telling our CC family there is HOPE!
Dianne-I see either my transplant/liver doctors and oncologist every 3 months, they like that I see a doctor every 3 months. I aslo do blood draws every month and scans every 6 months. I have my next scans Feb 2 2012.
I am curious how many cancer free CC members there are. I know of Jim Wilde,  and Randi. ??
Keep posting and giving HOPE!!
Lots of prayers-Cathy

  • Registered: Sun, 03 Oct 2010
  • Posts: 30

Re: Doing well after 2 years!

Hi Cathy,
Have you read any posts from 32coupe who was diagnosed in 1996 I think.... an amazing story. (Hi bob if you read this.) Otherwise I'm not sure about CC free members.  It would be nice if there was a site to write those success stories.
I will be thinking of you next week and will be hoping for good scan results for you.  It's always scary getting those results!
Best Wishes!

  • From: Uniontown, Ohio
  • Registered: Fri, 23 Sep 2011
  • Posts: 1,500

Re: Doing well after 2 years!

Cathy- Don't ever feel bad about posting your story. Please, all of you out there that are lucky enough to be CC free, DO NOT feel bad about it. Be happy and proud that you beat the evil monster. I, for one can say I am so happy for you. You give me hope that someday my daughter and everyone else suffering with CC might end up like you!! Don't ever feel guilty or bad about being one of the lucky ones. Spread the word and help us beat CC. Love you all.

-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

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

  • From: San Francisco Bay Area
  • Registered: Mon, 07 Jun 2010
  • Posts: 63

Re: Doing well after 2 years!

I also just celebrated my two year surgery date ( 1/19/2010) !   

I celebrated it by "manning" the Cholangiocarcinoma Booth at the ASCO 2012
GastroIntestinal Symposium in SF.

I plan to do it every year.

Lesley

Snezzie's Website

  • Registered: Fri, 12 May 2006
  • Posts: 8,312

Re: Doing well after 2 years!

Lesley...I am counting on you. Can't do it without your help. 
Hugs
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER
  • Registered: Fri, 12 May 2006
  • Posts: 8,312

Re: Doing well after 2 years!

Survivor stories:  we had started to collect survivor stories some time back and then (for numerous reasons) we shelved the idea.
What do you think?  Should we start compiling again and where would you like to see the stories displayed?
Thanks a bunch,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER
  • From: United States
  • Registered: Wed, 02 Nov 2011
  • Posts: 69

Re: Doing well after 2 years!

Your story brings me hope for my dad. Congratulations on reaching such an amazing milestone

  • Registered: Sun, 03 Oct 2010
  • Posts: 30

Re: Doing well after 2 years!

Hi Marion, I would be very interested in a section on survivor stories....it could give us all hope, eventhough I suppose it might also be a little discouraging?  I think it could help people when they are trying to decide treatment options given them by their doctors.  I may have decided to have chemo after my resection if I'd gone to such a site... I am now kind of regretting not having done so.  Could it be a new heading under General Forums?

  • From: Willow Grove, PA
  • Registered: Wed, 06 Apr 2011
  • Posts: 809

Re: Doing well after 2 years!

I would love to have an entire section for "survivor stories". I for one can't wait for 6 months so I can post on it. I think the stories that say how long you are a survivor and basic information are great to read. They give me hope. But they are hard to find sometimes, so I vote YES for a new section for these stories.

Kris

Don't just have minutes in the day; have moments in time.
  • Registered: Fri, 12 May 2006
  • Posts: 8,312

Re: Doing well after 2 years!

Your ideas are great.  But, before we represent this to Rick we should work out the details.  At what point does a patient become a survivor?

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER
  • From: Hilton, New York
  • Registered: Fri, 15 Jan 2010
  • Posts: 738

Re: Doing well after 2 years!

Just what I was thinking Marion.  We are all survivors who live a day beyond a CC diagnosis whether it's our diagnosis or the diagnosis of a loved one.

Survivor of breast cancer (1994), thyroid cancer (1999), cholangiocarcinoma (2009).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.
  • Registered: Fri, 12 May 2006
  • Posts: 8,312

Re: Doing well after 2 years!

Yes, Randi, all of us are survivors.  Then we should think of a concept as to how we like to proceed with the survivor stories. 
Some of the best ideas have come from the members of this site.  We can make this happen.  Any thoughts?

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER
  • From: Willow Grove, PA
  • Registered: Wed, 06 Apr 2011
  • Posts: 809

Re: Doing well after 2 years!

While I agree that all of us living with this diagnosis can consider ourselves survivors, I think we should maybe start at the point where chemo, radiation, surgery or some other treatment has "eliminated" the cancer for at least a given amount of time. Maybe 6 months? Or a year? That, to me, would be a "REAL" survivor story. I don't consider myself a survivor yet: I am a cancer patient who hopes to be a survivor soon.

Kris

Don't just have minutes in the day; have moments in time.
  • Registered: Fri, 12 May 2006
  • Posts: 8,312

Re: Doing well after 2 years!

Good point, Kris...so how do we go about it?  Do we ask those people, post treatment, with a 3 months follow-up to submit their stories.

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER