Topic: Spouse recently diagnosed

Hi, my name is Kris and my husband was recently diagnosed with hilar CC (Klatskin's tumor). We were very lucky in that it was only about 6 weeks from first acute symptoms (thought it was his gall bladder) to his surgery June 4th. We were blessed both with some accidents (back pain with no cause that us landed us in the ER and a CT scan) and some heads-up doctors that sent us onto the surgeons. He had a 14 hour surgery to re-sect out the tumor along with just a little less than half of his liver (Roux-en-y procedure). His lengthy surgery was related to a previous exploratory laparotomy and splenectomy years ago as a teenage for Hodgkin's lymphoma. Out docs have been very positive and have never talked about prognosis (which I appreciate since it makes no difference to me as every cancer is unique to the person). It was a moderately differentiated adenocarcinoma with one out of seven lymph nodes positive and per the surgeon clean wound margins after re-secting out the tumor

He is now fairly well healed and starting chemo in a little over a week. We had a little set back due to a Klebsiella sepsis a couple of weeks ago and we are just waiting for blood work to come back clean. Chemo will be every two weeks of cisplatin and gemcitabine which the oncologist says they are having very good luck with.

It has been wonderful to find this site and have people who understand what you are going through. This is such a rare cancer that you spend so much time explaining to people what it is that it almost drives me nuts. Most people seem to think it's some sort of liver cancer. And I am a nurse which means I always seem to know a little too much so it makes it harder to deal with sometimes. (One of the docs said we were lucky I was a nurse but sometimes I wonder about that).

And just to add a little bit more stress to my life (if this isn't enough) my twenty year old son was diagnosed with thyroid cancer within days of my husband's diagnosis. We are not three weeks out on his surgery.

Thanks for letting me share my story and fall everyone that shared theirs. It is so good to not feel so alone.

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: Spouse recently diagnosed

Wow, Kris, you definitely have been on a crazy journey though it sounds like things have gone fairly well for your husband so far (aside from the infection). That really is a lot to deal with your sons cancer at the same time. There is hope and as a nurse, you know at the very least that most thyroid cancers are curable. Still, till one walks in your shies, there's no way to know what your family is dealing with emotionally as well as physically and let's face it, logistically.  Hang in there.
Willow

Willow

Re: Spouse recently diagnosed

Hi Kris,

Welcome to the site. Sorry that you had to find us all here and I am sorry to hear what you all are going through right now. But I am very glad hat you've joined us here as you are so in the best place for support and help and I know that you will get a ton of both from everyone here. And thanks for sharing your husbands story with us all. Can I ask where he was diagnosed and where he had his surgery?

That is brilliant news to hear that your husband was able to have the surgery so quickly and indeed that he was able to have surgery. I hope that it went well and also that he makes a speedy recovery. So many people only show symptoms of CC at an advanced stage and that rules out surgery completely, and that happened to my dad. The docs at the ER and the surgeon seem to have been very on the ball here and that is great to hear.

I hope that the blood work comes back clean very quickly so that your husband can move onto his chemo treatments asap. Gem/Cis is a very popular chemo combo for CC and there are a ton of posts here on the site regarding that from the members here. Here is a link to the chemo board we have here -

http://www.cholangiocarcinoma.org/punbb … .php?id=16

I know that you have so much to deal with right now and i am sorry to hear about your sons diagnosis as well, but please do not give up hope. I know that this is such a stressful time for you as well to say the least as well. Please keep coming back here and know that we are here for you as well. And should you ever feel like venting, screaming or shouting then come here and do that as well if it helps as we so know what that feel like as well. We are here for you and we care.

My best wishes to you and your family,

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: Spouse recently diagnosed

Dear Kris, welcome to our extraordinary family but sorry you had to join us. As if CC is not enough your son gets Thyroid Cancer. I would say your plate is way overloaded but the bottom line is that your Men are coming along nicely! That Sepsis is nasty stuff and I hope everything is clean and green for the first Chemo. All the bumps you have had to go through are why we call CC a Roller Coaster Ride. I think it is so commendable and a great thing that you are a Nurse but also know that you have come here to the best little club in the world that no one wishes to join! Please keep us posted and you are most certainly NOT alone as you will have family now from all over the World.

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: Spouse recently diagnosed

Hi Kris,

Welcome to the forum.  You will get no end of support here.  To go through cancer with your husband and son must be incredibly hard so please tap into all the support you want here.  I too am a nurse and found it enabled me to be a step ahead with my sister and her illness.  I do completely get though when you say it can be hard - and lonely at times. I would say use your nursing to your full advantage as knowledge is power and you might just want to be ahead of the game here.

Clare

In the stars now . . . .

Re: Spouse recently diagnosed

Thank you all for your support and thoughts. It's very nice to be with people who understand this so well.

We had our surgery at Virginia Mason Medical Center in Seattle, Wa with the most wonderful group of doctors. The lead surgeon was Dr. Flavio Rocha and he has been absolutely wonderful through all of this. We really did not get the final diagnosis until after surgery since they did not biopsy prior to surgery. They were basing it all on the imaging - MRCP and CT scans so no one would say absolutely until after surgery. The surgeon was pretty blunt about what he thought it was however plus risks, benefits and survival rates.
As far as the initial possible diagnosis, it was done by an ER physician at Providence St Peter Hospital in Olympia, Wa and he really needed a better bedside manner. My husband had a CT scan for left mid back pain that I thought was a kidney stone (we still thought the RUQ pain was gallbladder). He handed me the CT scan report and said....Mark has dilated bile ducts, that is indicative of bile duct cancer so you need to follow up with your PCP. Oh and he doesn't have a kidney stone. The doc then fled the room leaving us in shock. We thankfully followed up that week with an Olympia surgeon and GI doc who were on the ball. The GI doc finally said the words cancer and then explained what and why he was worried. He then referred us the next day to Seattle. I still say we were lucky that it moved that fast.

And yes, it has been a crazy couple of months with both having cancer....Feel blessed that my son's is 'just' thyroid cancer which has an excellent survival rate. We are just waiting to schedule the radioactive iodine treatment in the next couple of weeks.

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: Spouse recently diagnosed

Kris,
So sorry for all your going through.  You and your family are in my prayers!  I am 30 yrs old and have intra hepatic cc.  I knew a girl years ago with thyroid cancer and it took a long time and some intense radiation but she got through it great!  Take care, it will all be ok

Danna

Re: Spouse recently diagnosed

Kris,
So sorry for all your going through.  You and your family are in my prayers!  I am 30 yrs old and have intra hepatic cc.  I knew a girl years ago with thyroid cancer and it took a long time and some intense radiation but she got through it great!  Take care, it will all be ok

Danna

Re: Spouse recently diagnosed

Kris...It is good to know that your experience with Virginia Madson was good. BTW: Dr. Rocha was one of the Cholangiocarcinoma Young Investigator Grant Awardees. He presented his findings on our website:
CEACAM6 as a Biological Marker and Prognostic Factor for Biliary Malignancy
http://www.cholangiocarcinoma.org/media.htm
My friend had been diagnosed with the same cancer as your son.  She was stage III and has undergone the iodine treatment. One year later, she is doing extremely well.  Your son's age definitely works in his favor and like you; I believe that this cancer will be conquered by him. 
Please continue to share with us.  We care and we understand.
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