Topic: Just found out.

August 23 2013 My husband went into the Doctors because he was yellow. Jaundice turned into Cholangiocarcinoma Cancer. We have been very lucky so far as it seems each day we have been able to go to the next doctor and next appointment. As it sits right now we find out Monday if my husband will be a candidate for surgery.  To me the Doctor did not sound very optimistic but my husband feels he was.  I am holding onto my husbands optimism. We know the mass is around 4cm by 5cm.

2 (edited by PCL1029 Sat, 07 Sep 2013 13:03:55)

Re: Just found out.

Hi,
if the tumor is confine in the liver and no metastasis to lymph node or other parts of the body;then  the 4x5cm tumor can be removed and chemotherapy to follow.
Don't worry to much at this point ,let see what the doctor will say on  Monday.
knowledge for this disease and you can start on this link if you like.

http://www.cholangiocarcinoma.org/punbb … 480#p74480

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.

Re: Just found out.

Hello Dakotabeann, welcome to the best little club in the World that no one wishes to join. Actually I am from Milwaukee but have been out here 19 years.
I am so glad that everything was caught quite early, that is the best news.  Can you tell us what kind of CC, where it is located and who is treating your husband. If there are no METS anywhere surgery sounds good to me. We love that word. You will want to read up as much as you can, some of our previous posts are a good way to start. Knowledge is our best tool for fighting CC. At the top of this page is a Search engine. Just type in a word and many posts will appear on that subject. Another thing is that we are huge believers in 2nd and 3rd opinions. Most important is a good attitude and be very strong. Please keep us updated on his progress and if you can, tell us a little more about his Diagnosis, 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: Just found out.

Hi Dakotabeann,

welcome to the forum although imam sorry that your husband has cholangiocrcinoma and you have had to find us.

I really do hope you get the news on Monday that surgery is an option.

Clare

In the stars now . . . .

Re: Just found out.

Dear Daktoabeann - as everyone else has said, welcome to the family no one wants to be a part of. This is the best site to learn as much as you can about what it and what treatments are viable. It sounds kind of like you husband as hilar CC which is outside the liver but can grow into other structures like the liver. That is what my husband had. They took right at 60% of his liver and then had to resect out part of a vein. He did have a VERY long surgery at 14 hours but there were complications related to a previous surgery. He was lucky that only one localized lymph node came back positive. My husband had a surgery similar to a whipple called a Roux-en-y or hepaticojejunectomy procedure for his. He was ten days in the hospital after surgery but came home and has done well since. Tired as the liver regrew but we have just finished out second round of chemo and he wants to return to work soon. We got lucky that the group we were sent to deals with most all of this type of cancer in our area so we didn't really have the resources to travel long distance for second and third opinions but I felt very comfortable with what we got.
Hang in there and just keep asking questions. Write the questions down and ask the questions. Make the doctors answer in language you can understand (Sometime they forget we all don't have medical degrees.)
Keep us posted and Good Luck!

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: Just found out.

Dakotabeann, my husband was 73 when DX and we were visiting his and mine in Milwaukee August of 2005. He had been itching and Jaundiced so bad. I remembering saying to him, you know I don't like you in yellow! We went to my son's GP and within a week he had all the tests and we found out it was CC. 8 years ago there were only a couple of ONCs who treated CC. Boy did we luck out! Dr. Lyle Henry at Columbia/St Marys performed a Whipple. I want to say it is the largest surgery to the human body but NOT life threatening like heart surgery. We were much like you and your husband in Milwaukee and out here. Anyway our 2 week visit turned in to almost 3 months. It is kind of a long recovery and Teddy being an old Sicilian never complained about anything. He had clean margins and no lymph node involvement. The CC returned 3 years later where his Duodenum used to be. Also at that time if you had clean margins they did not follow up with Chemo. He had radiation to bring the CC down in size then had Cyber Knife. Everything was good for 2 more years and it again returned to the same place. He passed at 78. Our secret for surviving mentally was that we talked openly, a lot. We laughed a lot and near the end he had Home Hospice and would tell everyone we were on our honeymoon! Don't over question yourself  and listen to your gut feelings
that and this site got me through those 5 years. It is of utmost importance that you be seeing an ONC who has had quite a few patients with CC. I think you would be closer to Madison then Milwaukee. Most of all don't worry about a Whipple it sounds much worse than it is. I know easy for me to say, I never had one.   
Who to tell? I believe that the more it is talked about the better others accept it and you will also. You are so right, and I have always felt as well, that the more you try to hide the more people gossip. A suggestion would be to make an email list and update it nightly or so. I became exhausted by all the calls and repeating stuff over and over and wanted my time with Teddy. Everyone caught on and it made life so much calmer. Wishing you the best and please think about another opinion, it is sooo important. BTW many years ago, when I was married to Brand Ex, we went on a houseboat with the kids for a week up the Mississippi from Lacrosse!  Great trip.

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: Just found out.

Something that Lainy brought up I would have to agree with.....dealing with all the phone calls and updates as this journey progresses. I would suggest in the very beginning setting up either a spokesperson who you cane give info to and that person can relay it out to everyone. The other option is like a phone tree where you have a list of 4-5 people that you update then they forward the updates on. I was literally going out of my mind trying to keep everyone updated on what was going on. There were people that thought I was purposely leaving them out of the story and not telling everything. I was tired, stressed and not thinking clearly. I think if you set this up early and stick with it everyone will understand.....and if they don't the drop them out of the loop. I finally set up a tree and had a couple people try to go around it and they stopped getting updates. It might have seemed mean but I was more worried about my stress and my husband's health. Works with texts, phone calls and emails.

KrisV

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: Just found out.

Hi Dakotabean,

Welcome to the site. Sorry that you had to find us all and I'm sorry to hear what your husband is going through right now. But I am glad that you've joined us here as you're in te best place for support and help and you'll get loads of each from everyone here. Thanks for sharing everything that is going on right now. My dad too had the jaundice as his first sign that things were not right and he was diagnosed a few weeks later after that with his CC.

I know that you heads will be spinning right now with everything that has been happening and everything will have been coming at you so fast as well. We went through that too and everyone does. But I know that you'll start to feel a bit better once a treatment plan is in place and you can start fighting back. A positive attitude is great and will help much through all of this. Learning as much as you can too will definitely help as well as the better informed you are the better equipped you will be when it comes to making decisions about things.

I so hope that you get some good news on Monday at the meeting about surgery. My fingers are crossed for you and please let us know how everything goes with that. As to who to tell and all that, first off I would say wait and see what comes up on Monday and then take it from there. My dad was very open about things and didn't mind telling people etc and we found that having things out in the open and talking about everything was easier and so worked for us.

I hope that you will keep on coming back here and keep us updated on everything. We know what you are going through right now and we care. We are here for you.

My best wishes to you and your husband,

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.

9 (edited by jathy1125 Sun, 08 Sep 2013 17:18:43)

Re: Just found out.

Dakotabean-Welcome and sorry you had to find us. I am a CC survivor of almost 5 years, my CC was inopearable and told I had 6-8 months to live, my only HOPE was a transplant. I had 2, I am alive because of God, 2 strangers, and Dr. William Chapman at Barnes-Jewish Hospital in St. Louis MO. I have an amazing story to share and keep it posted at www.catherinedunnagan.com
Most people on this site know I am over the moon about Dr. Chapman but he is the most kind, talented and versed man in our cancer. When ever I think I can't be more in awe of him he does something else. I just was so blessed to meet the most remarkable women and her family who found Dr. Chapman through mine and Wayne Parson's post. She was from the east coast, diagnosed at a major cancer center and told no options, one phone call to Dr. Chapman and her diagnosed changed. She came for a consulation and more test and 38 days later she went home with no tumor and HOPE!! My best advice is make sure your doctor is at the top of his game, thinks transplant and resections are options and get second, third opinions till you are comfortable with your decisions.
There is wonderful site called caring bridge that most people use to keep people up to date and informed, leaving you to just focus on winning the fight. You are obviously very active in your community and using caring bridge will help people help. I also believe the more that new the more prayers for me and the more kindness and love for my family.
Please call me (618-567-3247) or email me (jrdunnagan@gmail.com)if I can help at al or just want to talk.
Lots of prayers and HOPE-Cathy

Re: Just found out.

Hi Dakotabeann,

I just wanted to welcome you to this site and to tell you to never give up hope about the surgery. Your husband might have to do chemo first to shrink the tumor, but even if the doctor says no right now, that doesn't mean it will never happen. As for getting the word out with what is happening with your husband, I found Caringbridge to be a little restricted for my taste, because I like to post a lot of pictures. So I started a blog for my daughter, Lauren on my own. I find blogging to be very helpful in getting my feelings out. Sadly, my daughter passed away three months ago tomorrow at the young age of 27. She always had hope in her heart. Take care and I wish you and your husband all the best.

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.

Re: Just found out.

Welcome,
I am so sorry you and your husband are going through this but never give up Hope. My husband uses Caring Bridge to keep family and friends updated and also created a group on his cell phone for for text messages. If you would like to talk to so some please give me a call. 330-903-6868.
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: Just found out.

Hi - I'm new and I may have posted my introduction in the wrong place but I'll get the hang of this.  Just found out I have cholangiocarcinoma but luckily PET scan came back negative for any spread at this point.  All my blood work is "ok."  This was caught by accident due to a CT scan that was done for another issue.  It's taken 3 months to get to the point of finding an oncologist so it's been nerve-racking for me and my family - especially the waiting!  My tumor has increased in size from 1.9 cm on June 7th to 4.5 cm on Sept. 4th.  I'm told a liver resection is the best thing to do but now I have to wait for that to be scheduled.  I wrote this question in another area (sorry, I don't mean to be duplicative, but I'm brand new to this site).  I'm wondering if it's your experience that these tumors are fast growing.  My husband passed away last March (from cancer) and my family and I are still dealing with his loss and now we've got my diagnosis to deal with.  I'm doing my best to keep myself calm on behalf of myself but also my children and grandchildren but it's very hard.  Thanks much for any input you can provide me with.  Best wishes to all of you!

Re: Just found out.

Welcome Satchie, but sorry you had a reason to join us.  You have sure been through a lot.

It may be better for you to post this as your own topic in the Introductions section to get more replies.  Go to the discussion Board main page  and click on Introductions.  Click "post new topic" and put your entry there (You can copy and paste it from here).  that way you can name your own topic and people will respond.

It sounds like you are eligible for a resection which is fabulous news on this site!  Have you gotten a second opinion?  Where are you being treated and by whom?  Is there a reason that they are waiting to do the surgery? 

Hope you don't mind all of the questions smile

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

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: Just found out.

Sounds like good news to me. WooHoo! Not hopefully your insurance approves the second opinion but it does sound like you have a good plan in place. I know we went right to surgery and are doing chemo afterwards. I know that surgery....or talking about surgery....is always the best. Keep us posted and keeping you in our thoughts and prayers.

KrisV

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: Just found out.

My mom just came back from St. Louis where Dr. Chapman did a liver resection on her. We were told by 4 local doctors and 1 from Dana Farber that she was inoperable. It easy to see if they can help...actually the whole process was so easy that I was nervous that it was all too good to be true. Just call Dr. Chapmans office and speak to Heather. They will have you fed x all your scans etc. there and then their team of surgeons will review them. They never took any insurance info or money to do any off that!!! So you have nothing to loose. We just had our miracle and I hope you will have your too. My parents were there for 38 days and our new friend Cathy was will us every step of the way. Please contact her or myself for more on Dr. Chapman.

Re: Just found out.

Hi Dakotabeann,

Great news that surgerynismstill an option.  My sister had portal vein embolisation prior to her surgery.  Enjoy your few days away together over the weekend.

Clare

In the stars now . . . .

Re: Just found out.

Hi Dakotabean,

Thanks for your update and for sharing your news with us all. IMO that is good news that the cancer has not spread to the pancreas leaving the option of surgery still open for your husband. I know you say that for every 2 steps forward it means one back, but sometimes that happens and is necessary and at least you are still moving forwards.

Your medical team sound like they have a good plan in place and my fingers are crossed that it will work out as planned and lead to a successful surgery for your husband. Sounds to me as well that they are well trained with some good experience even if they are perhaps a bit younger. Stay strong and keep us updated on how everything goes for you both.

My best wishes to you both,

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: Just found out.

Great news, Dakotabeann, we love the word surgery. I am so excited for you and Ron. Do you know where the surgery would be? Wow! I love to start the day with this kind of good news. GO PACK GO! I am from Milwaukee we were almost neighbors. Have an awesome weekend.

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: Just found out.

Dear Dakotabeann, waiting is the worst isn't it? The good news is they are doing something. To me the longer it takes the better it is as, if they found something more they would probably stop. Be strong as you will know soon. I know you will let us know!

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: Just found out.

Dakotabeann....tons of good wishes are heading your way.  I just know how stressful this time can be for the loved ones awaiting an answer.  Hang in there.  Best of all 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

Re: Just found out.

Good report Dakotabeann and I am very happy for you guys. Have a great weekend yourself! Stable is so good!

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: Just found out.

Dakota....a well deserved and good weekend to you.
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

Re: Just found out.

I've got everything crossed that the embolisation does it's thing and your husbands liver grow, grow, grows.

Clare

In the stars now . . . .

Re: Just found out.

Dakota....I love the good news and the fact that his tumor continues to stay stable.  Here is to no growth in tumor and tons of growth in liver.
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

Re: Just found out.

Hi Dakota,

Thanks for the update on Ron, my dad was called Ron too! I too see lots of good news in your update and no tumour growth, we love hearing that round here! And the walking with the kids is great on many fronts. Not only has it helped with the drop in pant sizes and led to a reduction in his diabetes meds, it is a great way to get both exercise and spending good time with the kids too. Exercise is good for all and what a great way to get it!

Hopefully the liver will start to grow again soon and it is great to hear as well that surgery has not been ruled out either. And the jaundice gone too, more excellent news as well. Hopefully you will have more good news to share after the Nov visit, fingers are crossed for that!

Hugs,

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.