Topic: Tell me your story about your diagnosis

My boyfriend was diagnosed with primary schlerosing cholangitis (PSC) 3 years ago.  He has been under supervision since then.  Ultrasounds to screen for cancer.  This August, he got an MRI to follow the PSC.   They found he had cholangiocarcinoma (CCA) that went undetected by all the ultrasounds.  The day he got that phone call was the day our worlds changed forever.  Now everyday is defined by cancer.  It's inoperable.  I'm sick about it.  I'm a physician and thought I did everything I could to prevent this.  I am reading all these stories of people with CCA.  I thought it was mostly PSC patients that got this disease?  How did you get diagnosed?  How is it possible that we can catch this disease earlier so people can beat this?

Re: Tell me your story about your diagnosis

Hi lostandscared,

I am very sorry to hear about your boyfriend, but happy you found this site. To answer your question, my daughter, Lauren was the one diagnosed with CC. She is only 26 years old, 25 when diagnosed. She started out having pain in her upper right side. We figured it was gall bladder problems. She had an ultrasound and bloodwork. The doctor never called about the ultrasound so we figured everything was fine. The nurse did call and say her liver enzymes were high, but he wasn't worried about it. We had no clue what he was even talking about at that time and just forgot about it. About three months later the pain was more constant, she could only eat small amounts of food and would get full really fast, her back hurt, and she lost 40 pounds. She asked me to call and get her in to the doctor because she had a feeling something was really wrong. Luckily, the first doctor she went to was on vacation and she was sent to a different facility to see a young, wonderful doctor who ordered a CT scan immediately. It showed masses in her liver. He sent her to a GI doctor that wanted her to see a specialist because he didn't know what it was. We went to the University of Michigan and saw a liver surgeon. He ordered a CT, MRI, and PET scan. She also had a liver biopsy. It came back that she had advanced CC. Her largest tumor was 19cm. and various small ones. Had I known what I do now, I would have demanded the ultrasound report from the first doctor and questioned the elevated liver enzymes. But at the time, we had no clue it could be serious and had never heard of CC. It was the last thing we would have thought was wrong. I don't really know if there is any way to detect it early. That is why so many people are diagnosed late stage. I wouldn't beat yourself up over this. Your boyfriend had routine ultrasounds. You did everything you were supposed to. It is just a rotten cancer that sneaks up on people without much warning. I am very sorry and I hope your boyfriend finds a treatment that will shrink his tumors and perhaps a transplant or resection can be done. Please let us know how he is doing. All the best.

-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.

3 (edited by PCL1029 Mon, 19 Nov 2012 18:41:32)

Re: Tell me your story about your diagnosis

Hi,
I am sorry for the situation you are in right now. I am not a doctor so I cannot answer all the questions to your satisfaction. All I know is that ultrasound results are highly depended on the human skill factor to get the best result possible.
CAT scan ,MRI are the choices for surgeons to make surgical decisions and PET scan is for oncologists to see whether the cancer is metastasized or not. But even so,diagnosis of cholangiocarcinoma can be challenging, particularly in patient with PSC since patients often do not develop significant intrahepatic biliary dilation and it is difficult to detect extra hepatic CCA especially if it grows along side with the bile duct instead of growing inside to obstruct the bile duct and cause warning signs of jaundice. What I am trying to say is that ,it is not you fault not to do enough to prevent it from happening .
I discovered my CCA thru CAT scan by chance, I just asked my friend to write me a Rx for CAT scan and the rest is history. It is God's grace that I am still around for 43 months now and still running around working and volunteering.
PSC is the most frequent risk factor to develop CCA but not exclusively . I am the one that belongs to the 10% minority of having intrahepatic CCA.
As you know, by the time we discover we had CCA , most of the time is too late for resection. But it does not mean that you have to given up hope on that.
If I may,  i will still  suggest getting a second opinion from liver specialist like Dr Gore at Mayo Clinic or Dr . Chaplin at St.Louise Washington university or the one and only Dr.Kato in New York Pres. Hospital.  For they are the best among others.If confirm that your boy friend is not resectable ,then get interventional radiologist opinion on RFA,Chemoembo, RADIOEMBO at northwestern or standard hospital if it is intrahepatic CCA ; nano knife,IBRT or PDT for extra hepatic CCA. And finally medical oncologist consult to cover all the bases in planning the future treatment. I am sure you have already planned ahead for treatment options, but I hope the above suggestion from a patient who have been through the situation before will give you encouragement and hope .
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: Tell me your story about your diagnosis

Hello Lost and Scared, welcome to our elite club that no one wishes to join. I am very sorry to read about your boyfriend and if I had the knowledge of our Dear Percy I would tell you the same things he did but he is much more eloquent than I am. When my husband was DX 7 years ago most Physicians had never even heard of CC. Even as a Physician the best you can do is to be there for him, read up as much as you can as knowledge is a great tool for fighting CC and never be afraid to get 2nd and 3rd opinions! Make sure they are with ONCS and Hospitals who are experienced in treating CC. You have come to the right place and feel free to vent, advise, or ask away. Be Strong!

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: Tell me your story about your diagnosis

Hi lostandscared,

I'm in Ottawa.

My wife got diagnosed with extrahepatic cholangiocarcinoma in April 2011 at the age of 44. She had Whipple surgery in July 2011, followed by 2 months of 5FU chemo-radiation and 4 months of Gemcitabine/Cisplatin chemo. She is currently in remission. She received all her treatments at The Ottawa Hospital.

Here's how she got diagnosed:

She went to ER with unbearable abdominal pain in the upper right quadrant. She wasn't visibly jaundiced. Ultrasound showed dilatation of the common bile duct. ERCP found a tight stricture in the intra-pancreatic portion of the CBD. The brushing biopsy came back as suspicious for adenocarcinoma. CT and MRI ruled out pancreatic cancer. EUS was the final test that led to surgery; EUS was highly suggestive of cholangiocarcinoma. The final pathology report done after Whipple confirmed the dx. Extrahepatic CC, stage IIB (T3/N1/M0), 2 positive nodes out of 15, microscopically positive margins.

Medical history prior to cancer:

My wife had recurrent, intermittent digestive issues for as long as I remember (20 years). She had trouble digesting fatty foods, raw fruits and veggies. I know she mentioned her digestive issues to our family doctor on a few occasions. The GP never ordered any tests or investigations. To be fair, I don't think my wife was persistent enough in her complaints (she is not the type who complains about minor irritants). Our surgeon told us that digestive issues are very common in the general population; the fact my wife had them doesn't mean they caused her cancer.

Lostandscared, I'm very sorry you had to find us. The best tip I can give you is to live one day at a time and not look too far ahead.

My best wishes to you and your boyfriend.

Re: Tell me your story about your diagnosis

Hi,
I just noticed you are from Toronto, if that is the case, Princess Margaret Hospital will be the one stop hospital for most of your needs for your boyfriend.
Dr. J Knox is the oncologist who you should consult with. She has done a lot of research for CCA and at the top of the game.
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.

7 (edited by marions Mon, 19 Nov 2012 23:04:34)

Re: Tell me your story about your diagnosis

lostandscared....I would like to also welcome you to the site no one wants to belong to (but is glad to have found.)
I don't know whom you have consulted with however; these three physicians are very familiar with this cancer and are worth speaking to. 

Dr. Jennifer Knox
Address:
Department of Medical Oncology
Princess Margaret Hospital
610 University Avenue 5-210
Toronto
Ontario
M5G 2M9

Phone: (416) 946-2399
Fax: (416) 946-6546

Dr. Laura Dawson, MD FRCPC
Associate professor,
Dept. of Radiation Oncology,
Princess Margaret Hospital
University of Toronto
Toronto, Ontario
phone 416-946-2125
fax 416-946-6566

You might also want to consult with Dr. Sean Cleary (surgeon) at Princess Margaret Hospital.  He has operated on numerous CC patients.

Please correct me if I am wrong however; I believe that liver transplantations on CC patients are not performed in Canada.  It is something you might want to check out though and if necessary connect with an American Institution.
Please don't give up the fight and try to stay hopeful.   
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: Tell me your story about your diagnosis

Hi Lost,

Welcome to the site and I am glad that you have posted on here now. Of course I am sorry that you are here and sorry also to hear about your boyfriend, but I'm glad that you've posted on here now as I know that you will get so much support and help from everyone here.

I can so understand how you are sick about all of this and I felt the same when I heard my dads cc was inoperable. I know that you are a doctor and we are not, and I know that you did everything you could to prevent this happening to your boyfriend. But please, do not beat yourself up about this. My dad's CC came out of nowhere, he never had PSC and was very healthy for a man in his early 60's and had no visible symptoms. Worked hard all his life, never smoked, drank and was quite fit and all of a sudden his jaundice came on. Into hospital, had all of the tests and we too then heard the inoperable news. 

Please keep coming back here. We do know how you feel and what you are going through. Should you feel like shouting or screaming then go ahead and do so here, we know that feeling well and it can help. Please let us know how things go and know also that we care.

Best wishes to you and your boyfriend,

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 AmyMeneses Wed, 21 Nov 2012 10:26:17)

Re: Tell me your story about your diagnosis

Hello lostandscared. So sorry about the news. You're probably like me wishing there was something you could have done to find it but how could you have known. There is little to no awareness of this cancer from what I've seen. Either you know it because someone you know has CC or you don't. This site is amazing and I've used it since my mother was diagnosed earlier this year. Definitely has way more information than any other source I've found.

With my Mom she developed uncontrollable blood clotting which is how we found it. So she has numerous clots that still haven't dissolved on top of the cancer. I don't recall her ever complaining about her side or anything else other than having a sensitive stomach and occasional heart burn before then and her mass was the size of a baseball when they discovered it. Now we are just working on chemo and luckily she's responding well. We were told operation was possible but now learned it spread just outside her liver on her diaphragm. Not sure if that surgery will ever be an option but wishing for the best. I'd defiantly get a few opinions about surgery before you go on one opinion or give up on it.

Wishing the best for you and your boyfriend.

Amy

Re: Tell me your story about your diagnosis

Thank you all for your stories.  It has been an awful year. 
Amy,Lainy,Gavin, Eli.  Thank you for your stories.  It is so nice to know I'm not alone.  It is not a site any of us wish to find ourselves on.  Yet it is good we give this disease a voice.  It's rare but can't be ignored.

Pamela, it is exceptionally confusing when this happens in our children.  Horror.  I've been working for 21 years in the medical field and am just now learning never to ignore (mildly) abnormal liver functions.  If nothing is found.  Check another way or in a few months.....  You are all right, we can't beat ourselves up over this.  We must forgive not hold bad feelings in our hearts.

Marion, We did see Dr. Cleary and Dr. Knox and the great minds here in Toronto.  Unfortunately nothing could be done and chemo wasn't an option because of low platelet counts.  He passed 2 weeks ago.  He was quite well up until the last two weeks.  I hate this disease.

Then I had my own liver resection 4 weeks ago for what was thought to be cholangio (Dr Ian MacGillvray - TGH) and actually was Intraductal Carcinoma in Situ.  What a crazy year.  But I am recovering and off work for 3 months.  Now I have a real interest in this disease. 

Thank you for maintaining this board all.  I will be donating to this research and handing out wrist bands by the dozens.  At least for now we have each other.

God bless you all and please continue the fight or supporting your loved one in this fight.  Love hard, Fight hard, give hard.  Forgive.   And ask lots of questions. 
B

Re: Tell me your story about your diagnosis

I'm so sorry to hear of your loss.  It is such a terrible disease. I'm glad to hear he was well until the last two weeks.
I am 33 now and has diagnosed at 31.  I was fortunate enough to have a resection at that time.
You asked previously how people got diagnosed.  I present to the ER with abdominal pain after eating pizza.  Assumed it was my gall bladder it was not.  I had a liver mass which was eventually removed and found to be CC.  I had normal liver enzymes and my Ca 19-9 was 2 points above normal at the time of diagnosis.
So, now you had a resection?  I thought Intraductal carcinoma was breast cancer?  Either way, I wish you the best with your recovery.  The liver resection was not as bad as I thought it would be, so I hope it is not too tough on you either. 3 months off work is great.  You will be feeling so much better by then.

Take care,

Susie

Re: Tell me your story about your diagnosis

Dear B, I am so very sorry to read about your Boyfriend's Passing. As if that is not enough you have your own to contend with as well. I had that happen to me 1 year before Teddy passed (it was another very rare stomach cancer). I got through it beautifully as I was too busy thinking about Teddy and what he had to go through then to worry about myself. I promise you that eventually your good Memories will shove all the bad ones to the side. Take care of yourself now and wishing you the best!

Do not stand at my grave and weep;
I am not there. I do not sleep.
I am a thousand winds that blow.
I am the diamond glints on snow.
I am the sunlight on ripened grain.
I am the gentle autumn's rain,
When you awaken in the morning's hush,
I am the swift uplifting rush
Of quiet birds in circled flight.
I am the soft stars that shine at night.
Do not stand at my grave and cry;
I am not there. I did not die.                   By Mary Elizabeth Frye
For everything beautiful that you see
will bring a memory of me.

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: Tell me your story about your diagnosis

Dear Lost,

I am so very sorry indeed to hear of the passing of your boyfriend. Please accept my sincere condolences. I'm glad though that your boyfriend was quite well until a fortnight until his passing and I hope that you were both able to spend lots of quality time with each other making life time lasting memories. Yes it has been a horrible year for you to say the least and I hope that you make a swift and full recovery from your own resection as well. Please know that we are here for you always. I too hate this disease like you do as well. My thoughts are with you right now.

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.

Re: Tell me your story about your diagnosis

Lostandscared…..I too am sad to hear of your boyfriend’s passing.  And, then you personally are touched by a variation of this cancer too; impossible but yet so real.  Fortunately your prognoses presents a significantly, better outlook than that of your poor boyfriend.  I wish for a speedy recovery physically and emotionally. 
We are gaining some ground with this cancer.  Research is increasing and general awareness has increased dramatically however; in comparison to other diseases we continue to be underfunded.  We hope to change that within the near future.
Dr. Knox and Dr. Lawson are on our scientific review board and several other physicians have joined in also.  It will be reflected on the website real soon.  With their help and the conviction and passion of this organization and the incredible members of this site, we are assured to support research in the quest of finding the desperately needed answers to this disease. 
Thank you for your commitment to help us in our cause.  We have had several requests for support of a foundation in your country and we gladly guide anyone interested in doing so.   Get well real soon, dear lostandscared and please keep us posted.  We are in this together. 
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: Tell me your story about your diagnosis

Dear B,
I'm so sorry to hear of your boyfriend's passing.  It's such a tough time and to have to recover from major surgery at the same time! I'm in awe of you handling all that stress at once. Thank God your surgery went well and the prognosis is good. Hope your recovery is quick and uneventful. My heart really goes out to you. You've really had a lot to contend with in such a short period of time.  I hope you have a really good support from family and friends. You certainly have your friends here pulling for you.
Dianne