Topic: Newly Diagnosed

Hi,

My name is Mary.  A year and a half ago I was diagnosed with Adenocarcinoma - unknown primary.  My treatment consisted of chemo and radiation.  Surgery was not an option because my tumor was wrapped around celiac and hepatic arteries.  Back in May of 2012 another tumor popped up running along my portal vein which they called a regional spread.  But as of last week, they told me the tumor is in my bile duct.  They said I have Cholangiocarcinoma - stage III.  Since I still can't have surgery, they are going to try Stereotactic Body Radiation Therapy (SBRT).  I have to have a "spacer" put in to separate my stomach from my liver so the radiation hits only where it's suppose to.  When the surgeon puts in the "spacer" he will also put in the "gold seeds" for the SBRT.  I am meeting with the surgical oncologist on 3/18/13 and will get a surgery date at that time.  Overall, I am feeling well with some pain but manageable without pain medication.   A little overwhelmed by the new diagnosis.  I was starting to believe my body flushed out the primary site since it was a year and a half since my original diagnosis.  So  a little disappointed, to say the least, when they said I had Stage III Cholangiocarcinoma.  Am happy to have found this web site and look forward to hearing from others with similar stories.

Re: Newly Diagnosed

Hi Mary and welcome to our wonderful family and the best place to be for CC. I understand your disappointment and feeling of being overwhelmed however, the good news is you have options. At least it sounds good to me! My husband had the gold seeds for CyberKnife and I remember it really was a no brainer. We are glad you found us as well and please do keep us updated as we truly care!

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.

Re: Newly Diagnosed

Hi Mary,

Welcome to the site. Sorry that you had to find us all and I'm sorry to hear what you are going through right now. But I'm glad that you've joined us all as you've come to the best place for support and help, and I know you'll get tons of both from everyone here.

You sure have been through a lot these last couple of years and thanks for sharing with us all. No wonder you were overwhelmed with the latest diagnosis and disappointed as you say. I know that there are lots of posts on the site about these type of treatments and I am sure that many members will be along soon to share their experiences of them with you as well.

I do hope that you will keep coming back here, feel free to vent or ask questions if you want and we'll do our best to help. My fingers are crossed for the SBRT and I hope that you get good news from the surgical onc at your app. Please let us know how things go with everything and know as well that we are all here for you.

My best wishes to you,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Newly Diagnosed

Thank you Lainy and Gavin for your kinds words and encouragement.

Re: Newly Diagnosed

Mary, Welcome and like we say hear sorry you had to find us. I am sorry you had to go so long with out the right diagnose.
I am a CC survivor, almost 4 years cancer free. I have an amazing story to share, I keep it posted at www.catherinedunnagan.com under the telegraph link. I hope by sharing it gives HOPE to all my CC family.
Lots of prayers-Cathy

Re: Newly Diagnosed

Hi Cathy,

I read your story on your website.  Thanks so much for such an uplifting story!  I hope you continue to do well and enjoy life!  So far my liver seems to be good and I have ever been jaundiced.  So I guess that's a positive thing.  I am hoping that the SBRT will bring positive results.

Please stay in touch.

Mary

Re: Newly Diagnosed

Hi Mary,

I would also like to welcome you to this site, but I am sorry you had to find us.
I am hoping you have great success with the SBRT. You have been through so much and definitely deserve to hear some good news. Please keep us updated.

Hugs,
-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.

Re: Newly Diagnosed

Mary,
I have no experience with SBRT but want to say hello and we understsnd your feelings. Lisa Craine has had stereotactic rad several times on different tumors  has had good success with it. Hope you will contact her via this site to get some insight. Best to you and your health ! Willow

Willow

Re: Newly Diagnosed

Thanks Willow.  I reached out to Lisa and look forward to her reply.

Re: Newly Diagnosed

Mary,
I enjoyed our conversation tonight and I look forward to helping you in any way I can. Stay away from the Thin Mints or send me some since I know we bought them but I think my family is hiding them from me.
Hugs,
Lisa

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

Re: Newly Diagnosed

Hi Lisa,

Thank you so much for talking to me last night.  It really helped to feel more optimistic.  I'll be in touch next week after my meeting with the surgical oncologist. 

Good luck to you on Tuesday!

Mary