• From: monmouth junction, nj
  • Registered: Sat, 05 May 2012
  • Posts: 51

Topic: Husband dx w/ CC

Hi--I've really appreciated this board since 4/9/12, when my husband was diagnosed with CC. He's 55, and started having indigestion and some pains at the end of dec 2011. we just assumed it was ulcers, but then quickly found out that he had a 5cm tumor on the left lobe of his liver.

On 5/1/2012 he was operated on by Yuman Fong at Sloan. (BTW they gave us a surgery date of 5/15/2012 initially, but i called the office begging for an earlier date and they came up with one!) After the surgery Fong said "It's a very bad cancer--we couldn't get all of it.That was a blow. Apparently the cancer had started growing in places that would be too risky to try to remove. Fong also said he removed several lymph nodes.  But then the asst surgeon later said they got 99% of it and hope to deal with the remainder with chemo/radiation. We're also awaiting the final pathology report.

Anyway, with an eye toward the next phase, I emailed Kim from these boards to ask about an oncologist recommendation, and she recommended Abby Seigel from Columbia Pres. The touchy thing is that Fong recommended an onc named Peter Yi from where we live in Central Jersey, but I've heard mixed reviews on him. Plus, from what I understand, few oncologists have experience with CC and Abby Seigal is one of the few who do.

Anyway, thanks for "listening" and I'm deeply moved by all of your situations and am praying for all of you!

Audrey (wife of CC patient)

  • Gavin
  • Gavin
  • Moderator
  • Offline
  • From: Scotland - Dundee
  • Registered: Tue, 23 Sep 2008
  • Posts: 4,832

Re: Husband dx w/ CC

Hi Audrey,

Welcome to the site. Sorry that you had to find us all and I'm sorry to hear about your husband, but am glad that you've joined us here as you will get a ton of support and help from us all. And I'm glad also that the board and everyone has been able to help you since your husbands diagnosis. I came here after my dad was diagnosed back in 2008 and at the time, it was the best thing that I could have done. Everyone helped me so much, and I know that they will do the same for you.

In my dads case, his tumour was also too close to the portal artery so that ruled out surgery for him and that is quite common for this cancer. Thats great that your husband was able to have the surgery and of course we wish that they had got it all, and I will certainly be keeping my fingers crossed that the chemo and radiation will take care of what was left.

I know that the members will be along soon to offer their thoughts and some recommondations regarding an onc. And also, we have a chemo board here on the site, have you checked it out? Yes you are right in that there are doctors, onc's etc that may have no experience of dealing with this cancer and personally, I would rather go with someone who has experince of this cancer and treating patients with this cancer. Just my thoughts and I'm sure that others will chime in soon with their thoughts on this issue.

I hope that you'll keep coming back here and please keep us updated on everything. And if you have questions then ask away and we'll do what we can to help in answering them. We know what you are going through and we care.

My best wishes to you and your husband,

Gavin

3 Reply by marions (edited by marions Mon, 28 May 2012 10:51:12)

  • Registered: Fri, 12 May 2006
  • Posts: 8,174

Re: Husband dx w/ CC

Audrey...Congratulations on the successful surgery.  Dr. Fong has extensive experience with this cancer - your husband has been in good hands.
In re: to oncology care: Why don't you interview both oncologists so that you can have a feel of who you feel most comfortable with?  I don't know Dr. Yi, but I do know Dr. Seigel and know that she has vast experience with the disease of  Cholangiocarcinoma.

We have an ongoing member established list of physicians.  It is rather lengthy, but I will enclose the link anyway.
http://www.cholangiocarcinoma.org/punbb … hp?id=3126
I am glad that you have found us and I am sure for others to chime in real soon.
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, 15 Oct 2010
  • Posts: 1,739

Re: Husband dx w/ CC

Hi,
If I may, I will suggest you to get a radiation oncology consult in addition to the medical oncology consult if the tumor is only confined in the liver.If it had metastasized to other parts of the body(aside from those lymph nodes just resected), then it will be a different story. Positive margin in liver resection are not uncommon and systemic chemotherapy is the general approach. But lately radioembolization can be considered if the tumors are confined in the liver. The procedure seems to be easier on the patient with regard to the duration of treatment and side effects.
A few of our members are on that procedure now and you can read about their messages under the experience forum " Radiation  treatment and option" on this site.
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: monmouth junction, nj
  • Registered: Sat, 05 May 2012
  • Posts: 51

Re: Husband dx w/ CC

thank you, PCL1029--i will look into that ASAP! Also, a friend of a friend who is a GI oncologist suggested that the tumor DNA should be analyzed for mutations that may lead to personalized chemo approaches. There's apparently someone at Sloan who does this. Have you ever heard of this?

  • Registered: Fri, 12 May 2006
  • Posts: 8,174

Re: Husband dx w/ CC

betzeegirl....You may contact:

Nabeel Bardeesy, PhD
Assistant Professor, Harvard Medical School
Massachusetts General Hospital Cancer Center

Administrative assistant: Jenna L. Norton
Ph: 617.643.3793   Fax: 617.724.2662
Norton.Jenna@mgh.harvard.edu

Good luck,
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

7 Reply by PCL1029 (edited by PCL1029 Mon, 07 May 2012 14:14:29)

  • Registered: Fri, 15 Oct 2010
  • Posts: 1,739

Re: Husband dx w/ CC

Hi,
Mass General and MD Anderson will automatically do biomarkers tests for patients who have cancer as far as I know in most cases.
According to the ASCO statement not long ago, they do not recommend biomarkers test as a way of determining the choice of drugs for personalized treatment plans at this point; but i did the tumor DNA analysis biomarkers test when I had my second resection before the ASCO recommendation to see just what it is and what is in it; and how useful and what are the infomation or resources they used to make such recommendation for selection of the chemotherapy treatment.

In short, I am not satisfy with the process.and my oncologist did not use the result to the fullest to treat my cancer.

But if you are interested, I use the" Caris Life Science" for the service,you can google their web site to learn more. It cost about 10,000. dollars.

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.
  • Registered: Fri, 12 May 2006
  • Posts: 8,174

Re: Husband dx w/ CC

beetsygirls...I agree with Percy.  We are still a long way off before personalized medicine will become state of the art.
I had mentioned Dr. Nabeel Bardeesy - Harward because, he has received a grant for the study of Cholangiocarcinoma.  As soon as I receive more information, I will post it here.
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