Topic: New to the board - Link to Lynch Syndrome

I am a 9 month survivor of Stage T2, NO, MX Intra-hepatic Cholangiocarcinoma (IHCC) as they found it just before it spread too far.  I have Lynch syndrome (which is hereditary) which I found out before I got my cancer.  Bile duct cancer is one of the cancers listed if you have Lynch Syndrome.  Some of the more common cancers linked to Lynch is colon and all the female cancers like ovarian, utteran. My family noticed a "family mortality rate" on my mothers side dying of "Lynch syndrome" cancers.  I also had a brother who died at 44 of colon cancer.  I went to Dana Farber for gene counciling which includes a blood test. It is this test that determined I had Lynch Syndrome. I immediately started getting colonoscopies and had a hysterectomy to be preventative...however a year later I was diagnosed with IHCC.   I would recommend an annual Catscan if you have a family history and/or diagnosed with Lynch syndrome. Blood tests do not detect IHCC.  It was by accident that they found my cancer, I had no symptoms, I went in for a UTI and my primary doctor ordered a Catscan on my kidneys and of course the scan caught my liver and that is when they saw the tumor. How scarey is that! So, if it will save your life, it is worth getting an annual Catscan especially if you have family history of these types of cancers.

I did not have chemo or radiation therapy after my surgery.  I am not sure if that is good or bad at this point.  I missed the 6-8 week window of radiation therapy due to a bad case of ascites that developed after my surgery.  It is now controlled with Lasix and hopefully I will be off the Lasix soon, but if this is the only problem, I can live with it.  I have been back to work for 4 months and I feel pretty good. 

I have been reading so many stories on this site, I think it is so helpful.  I didn't know about this cancer until 9 months ago.  And when they told me I had to look it up and I still didn't understand it.  When I returned to work, I changed my charity contributions to go towards this Cholangiocarcinoma foundation.  More studies are desparately needed to understand how to fight this cancer better.

I highly recommend Massachusetts General Hospital and the team Dr. Ken Tanabe (Surgeon), Dr. Zhu (Oncologist) and Dr. Hong (Radiation Oncologists).  Dr. Tanabe saved my life.  I feel so fortunate to be so close to major hospitals that deal with these rare cancers.

Thank you everyone for this site, I think its great.  Tina

2 (edited by marions Sun, 18 Oct 2015 18:37:41)

Re: New to the board - Link to Lynch Syndrome

Tina...welcome and thank you for the extensive report on Lynch Syndrome. Congratulations on your accidental discovery of this cancer, the successful surgery and the subsequent recovery.  What a story you have to tell, dear Tina!
Based on the numerous postings on this site, we have noticed that the majority of  early stage diagnoses is related to the accidental finding of this cancer - just as it happened with  you.
Although within the last few years we have witnessed an increase of Cholangiocarcinoma research, we still are a long way off from understanding the nature of this disease, why it happens in the first place and why we can't come closer to finding an early detection method. 
Thank you for your kind contributions to this foundation, dear Tina.  Know that your money will go toward accelerating research with the hope for a cure for all patients touched by Cholangiocarcinoma.
I am sure that others will follow real soon and welcome you to our site.


Re: New to the board - Link to Lynch Syndrome

Hi Tina,

Thank you for sharing your story. I hope you are well. I live in MA and am considering having genetic testing done for possible Lynch (or other) syndrome, and was wondering, would you recommend testing at Dana Farber or at Mass General?? My brother passed away recently at age 43 from CC, and my mother's side of the family has had endometrial, kidney, bladder, breast, and lung cancers.  Thank you so much for your help!


Mike, you will live on in our hearts and memories forever...

Re: New to the board - Link to Lynch Syndrome

Hi Tina, I am being tested for Lynch too. I was diagnosed with Perihilar Cholangiocarcinoma almost two years ago at the age of 47. I should have some genetic results on Lynch soon and will post them.