1 (edited by sdas Mon, 07 Feb 2011 22:42:13)

Topic: Close friend newly diagnosed

My very close friend was just diagnosed with distal CC. I know he is not a sibling or blood relative, but I really care about him as they are way too close to us.

Anyway he had been itchy for a month. Initial diagnosis showed mild jaundice, but Hepatitis tests turned out negative. The bilirubin level was 3 when he got tested. The doctor discovered a bile duct blockage. A metal stent was inserted and a biopsy performed less than two weeks ago. We were horrified when the biopsy results came back. He has been diagnosed with distal cholangiocarcinoma. His staging will be done this week at MSK.

Naturally, there are some things I do not know as I am uncomfortable asking him.

We are anxiously waiting for the staging. Because
(i) his only symptom was (rather severe) itching but no other symptoms,
(ii) as the initial CT scan showed a clean pancreas,
(iii) he is rather young (mid 40s),
(iv) the bilirubin was not all that high,
we're hoping that the cancer hasn't metastasized or lymph affected.

We're expecting that the Whipple procedure to be done later this month. What are we going to expect? Having read a lot of the literature on CC, I understand that he is in for a traumatic and painful experience.

I have not dealt with this kind of situation before. In what possible way can I help him (other than the usual household chores, car lifts, etc.)? Would he feel comfortable if I discussed his cancer? Or should I ignore all and act as if nothing happened, chat, watch movies, etc., to cheer him up? Any Do's and Don'ts?

Any suggestions, tips welcome.

Thanks in advance.

2 (edited by marions Tue, 08 Feb 2011 22:21:37)

Re: Close friend newly diagnosed

Hello sdas....and welcome to our site.  The questions you are asking are indicative of a caring friend. 
There are, who have undergone whipple surgeries and we have reports ranging anywhere from "feeling like being hit by a truck" to "it wasn't all that bad."  These surgeries are quite invasive to the body and generally the recuperation varies from a couple weeks to a few months.  Your friend is quite young therefore; he may have an easier time with the process of getting better.  The first few days are the most difficult, but every day thereafter things most likely will become easier.   
There is a universal feeling of feeling helpless when someone we love has cancer.  These are a few tips I have taken to heart:
Sometimes the best way to communicate with someone is to just listen.
This is a way of showing that you are there for them. It may be one of the most valuable things you can do. And it's important to be supportive to whatever your friend wants to say. 
Many things will evolve as you go.  Being there for your friend is the most valuable gift you can make to him. 
Others may soon come along and share some of their thoughts with you.
All my best wishes,
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: Close friend newly diagnosed

Hi Sdas,

Welcome to the site. Sorry that you had to find us all and I'm sorry to hear about your friend. As Marion said, you are indeed a very caring friend to look to find out more info about CC and I know how mich your friend will appreciate the support that you will give him from here. And the more information you find out the better informed you will be about everything, so please feel free to ask a ton of questions and we will al do what we can to help in answering them. But please remember that we are not doctors or anything that like so can only answer from a patients or carers perspective and from what we have learned along the way.

I have no experience of the Whipples procedure as my dad did not have surgery of any kind, his CC was deemed inoperable from diagnosis. But many of our members here have experience of the whipple and I know that they will share their thoughts and experiences with you. Also, we have a great search function here on the wbsite and if you use it and type in whipples then many discussions will come up from our members for you to read.

My dads CC did not show up at all until he had symptoms similar to your friend, his eyes and skin turned yello and he got the horrendous itching as well. He then spent over 3 weeks in the hospital getting all the tests before CC was diagnosed. He also had a metal stent inserted and this helped get his billirubin down and that also helped clear up the itching.

Like you, I had never dealt with this situation before my dad was diagnosed and also had never even heard of CC. The best thing that I could say to you in helping with your friend is just to be there for him. If he wants to talk then listen to him but I wouldn't push anything right now. No doubt this will have come as a massive shock to your friend and he will probably be struggling to deal with it right now. But once the shock of it all wears off then the fightback can begin once a treatment plan is in place and your friend will appreciate you being there beside him. That is great that you will be able to help out with chores, lifts etc, but what I would do right now is just be there for your friend and see how he wants to handle things right now.

And please feel free to come back here as much as you want.

My best wishes to you and your friend,

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: Close friend newly diagnosed

Dear SDAS I wish to welcome you and your friend to our wonderful family. My husband had a Whipple 5 1/2 years ago. It is the largest surgery to the body but not life threatening. You can find out about the actual surgery by Googling Whipple. The recovery can take a month to months. My husband was sitting up the night of the day he had surgery and in the beginning he was sleeping a lot. Teddy's only symptom for 2 weeks was itching that kept getting worse and then he also jaundiced. That week he was tested and the next week he was scheduled for surgery. His Pancreas was not involved however, the head of the Pancreas had to be removed to get to where the CC was. Teddy was 73 then and he also had clean margins. As to talking about it, some people like to talk as we did, it relieved a lot of stress for us. You might just ask your friend if he wants to talk and if he says no at least you have opened the door and when he is ready he will talk. All you can really do is to be there for him and when he is ready perhaps some grocery shopping and some meals. Will he have anyone helping him? Good luck and please keep us posted.

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: Close friend newly diagnosed

Dear SDAS-Sorry you had to find this site, but it will be  well of information and support for you. I am a cc survivor and like most cc patients I was very healthy and only 52 when I became very itchy. My diagnose was sooo unexpected. I was very lucky because I just happenned to end up in the care of a knowledgable doctor. I was immediately put in a clinical trial involving a liver transplant.
You need to ask lots of questions (even if you think they are redundant), take lots of notes and get second-third opinions until you find one you are comfortable with. Please use this site there is so much expierence and love here, we are always here to help and vent.
Sending lots of prayers_Cathy

Re: Close friend newly diagnosed

Hi Sdas
I would also like to welcome you to this wonderful site, were members share their experiences freely for the benefiit of all.  I had a whipples in May 2010 - I spent 3 weeks in hospital following the operation and 3 months at home recovering before returning to work in August.  I feel completely normal.  A whipples is a serious operation but your friend is quite young at 40 (I'm 50) and hopefully will recover quickly.     
 
People react differently when they hear the diagnosis but I believe you will soon know from your friend's reaction how best to approach the situation.  I absolutely hated people having pity for me or pretending there was nothing wrong.  Where possible I encouraged open dialogue.
       
Please come back often and tell us how things are going for you.

Take care.................Gerry

Re: Close friend newly diagnosed

Dear Sdas - All I can add is to take things one day at a time.  Wait and see if your friend is a candidate for Whipple....and if yes, then help research the procedure so that you are well informed.  I'm not sure from your message whether you will be the support person for your friend.  If so, attend doctor's visits and take notes (lots of them).  Help track things for your friend (such as dates of visits, procedures, medications, etc.).  This can be overwhelming to the patient.  Help with all the little chores.  Ask questions -- definitely -- about how he is feeling, what he is feeling, fears, etc. , but also know when to be quiet and just be there and watch a movie or listen to music.  This is the tricky part.  Knowing when to talk about the illness and when to be quiet.  My son's biggest gripe with some of his friends was that they would walk in and just start talking as if nothing was wrong.  One of his good friends was a priest.  He knew just what to do:  he would come in, ask John how he was feeling, what his latest treatment was, whether he was scared....and John would answer.  Then, he would change the subject to something like:  have you read any good books lately, or - what are you doing with your time - or - he would bring up a good movie he had watched and tell John all about it.  He would then spend time talking about himself, to distract John from everything.  He was wonderful.  He could write a book on how to deal with "CC" patients. 

This may all be overwhelming for you right now.  But, I am sure, you are a wonderful friend and everything you do will be appreciated.  One other suggestion:  don't ask, "what can I do"...just do what you see needs to be done.  I hope all this helps and makes sense.

Hugs - Nancy

Mother of John who lost his battle on Oct. 9, 2009 at age 30....

Re: Close friend newly diagnosed

Hi SDAS,   regarding your question about how to approach your friend  I can only tell you that my husbands friends have reached out to us offering whatever help and support they can.  The outpouring of support  has meant the world to both of us.   His friends, many who I don't know,  have provided me with their contact information offering to change a lightbulb if I need it done!  So...I would let your friend know right off the bat that you are there for him in whatever capacity he needs.  To run errands, provide rides and just listen.  I think that's all one needs to hear, is that they can count on their friends in times of need.   
Good luck and best wishes for your and your friend.

Penny

Re: Close friend newly diagnosed

I think you have great advice on how to help your friend. I personally have been touched by the out pour of friends who have expressed their prayers and help in any way. I have been blessed with the friends who have come from my past and present to offer rides, care, food, errands and even help me at work. I am touched and blessed every day.

Someone with any disease either clams up or wants to talk about it. (I am a talker) It is something that I think about 7/24 every minute of every day. Having cc will change your life forever. (and you hope the forever is a very long time! lol) Open the door with your friend, start asking questions and see where it goes. You are a good friend and whether he wants to talk or not, do not give up.

Cathy
"Life is 10% of what happens to us and 90% of how we respond to it"

Re: Close friend newly diagnosed

good morning,
my mother had the whipple at johns hopkins with dr. richard schulick. although a very meticulous and challanging surgery she also had a portal vein recontruction. recovery was slow, but she is doing well, and starts chemo and radiation today. sending love, thoughts and prayers to you.
regards,
ronidinkes@yahoo.com

Re: Close friend newly diagnosed

I had a whipple op at Leeds UK in Jan 2010 following cc diagnosis after jaundice. What do I remember? All the medical things certainly but oh my goodness does it not half hurt if you have to sneeze or cough! I remember thinking perhaps I had had my last meal of fish and chips - I hadn't or that I wouldn' see my yet to be born first grandson - I have.
The effects of diagnosis can be more difficult for friends like you or blood relatives often than the patient who has to go with medical experts.
If your friend would like direct contact with a whipple graduate in the future just ask.
Malc

Re: Close friend newly diagnosed

Hello Malc....and welcome to our site.  Thank you for sharing your experience.  The pain caused by coughing and sneezing can be somewhat eliminated by holding a pillow closed to the abdomen.  How are you doing now?  Do you feel that you have recovered?  And, congratulations on the birth of your grandson; the best present yet. 
All my best wishes,
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: Close friend newly diagnosed

Hi Malc,

Welcome to the site, and thank you very much for sharing your experiences with your whipple op at Leeds, I know that your experiences will be useful to many of our members here. We have quite a few members here in the UK, and I am in Scotland and my dad was treated at Ninewells here in Dundee with PDT.

I hope that you will keep coming back here and sharing with everyone and I do look forward to reading more of your posts.

Best wishes,

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: Close friend newly diagnosed

Thank you - the site has been invaluable especially for my daughter 'Katja' who translates the positives on here for us all.
Yes indeed that was the advice that I remember so well - grab a cushion and "love your cut".
Recovered? Well I am just about to take part in some fundraising activities for AMMF here in UK. Going up a famous hike in Yorkshire - and taking said grandson along although at 9months he doesn't know it yet. Certainly feel recovered from the whipple - back swimming regularly. CC different of course - scan at the end of the month.

Re: Close friend newly diagnosed

We know Katja very well.  How nice it is for you to introduce yourself to us also.  Have fun at the upcoming AMMF fundraiser.  It is such a noble event.  Hopefully you will meet up with some of the other members from our site. 
Your grandson will love it especially when looking at the pictures a few years from now.
All my best wishes,
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: Close friend newly diagnosed

Hello Katja's dad and welcome to our family. Your daughter has done a tremendous job here. I am so very glad to hear of your progress. Keep it going!
Now that you made the plunge so to speak, don't be a stranger to us.

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: Close friend newly diagnosed

Hi everyone,

Thank you all for your warmth - Gerry, Marion, Cathy, Gavin, Ron, Malc, Penny and everyone else. Your advice is indeed very helpful. It is difficult to be cheerful, but my friend is really taking it well. In fact his demeanor has been amazing. As you have suggested, Penny, Cathy & Gerry, Nancy, I will try to be more of a listener. I don't offer sympathy to him as I know he would not like it. My friend wants to talk about this ugly disease, but his wife (she's quite delicate) gets so gloomy when the subject is broached that it is rather difficult to balance the conversation.

Malc, thanks for the offer of contacting another person, but as my friend's prognosis is highly encouraging (see below), I'd rather he not hear about the gloomier possibility. Perhaps later....

Here is some really good news from my end:

Earlier this month, at MSK, my friend did not have to undergo the formal TNM staging process. (It is my understanding that at MSK, they do not use the TNM process anyway for staging.) But based on his CT scan, the surgeon was quite certain that the carcinoma has not metastasized yet (M0), that the lymph nodes are unaffected (N0) and that his pancreas is intact.

I'm not trained in medical sciences at all but I read through some literature. I am guessing that is possibly a early stage tumor (between T0 [in situ] and T2). Therefore my friend's carcinoma is in only about stage-1 and fully curable! I really really hope that I am right.

The surgeon's also said that my friend would probably not even need adjuvant chemotherapy/radiation therapy after the Whipple.

At this point, we have reason to speculate that my friend will enjoy a quite normal life after all, after this ordeal. Of course things will become clearer after his Whipple, scheduled later this week. Only time will tell, but there is a lot of hope for us.

I will keep you posted. Meanwhile, my thoughts are with you all.

Warmly,

SDas

Re: Close friend newly diagnosed

Glad your friend is getting the whipple right away - no waiting.  We will be cheering him on all the way! Sound like Gerry (above) is doing very wll after
Whipple sugery. That's what we like to hear. Take care.
Nancy J

Loving my husband from afar.

Re: Close friend newly diagnosed

SDas
That's good news - your friend is eligible for surgery and the operation will take place now - no waiting about, and for the moment no adjuvant chemotherapy is on the cards.  There is a lot to be thankful for in that prognosis. 

Come back and tell us how the operation goes.

Good luck..........Gerry

Re: Close friend newly diagnosed

I hope this isn't out of line, but I am curious why a whipple if the tumor is contained and the doctor thinks no lymph node involvement nor involvement of the pancreas.  A whipple is such an invasive surgery. Would a liver resection do?  (Also invasive and a bit of a recovery period from first hand experience.)  I guess different doctors do things differently, but it sounds like your friend is at the same stage I was.  I had 2/3 of the liver removed, gallbladder and reconstruction of bile ducts, but not a whipple.  This was done at Johns Hopkins.

As others have said, everyone is different in the way they deal with the diagnosis.  I'm the type that likes to talk and likes to be asked about it although not dwell on it.  A friend, though, does not want to mention the C word or have people ask her or talk about it.  She thinks that will define her.  I have noticed that people seem to look at me trying to assess my current status as though I have a big scarlet C stamped on my forehead, but that's okay because I really know they care.  I'm sure your friend will lead the way in letting you know how to deal with him.

Wishing him all the best and a speedy recovery..sounds like he's in the best possible position for an otherwise scary diagnosis.
Good luck to him..
Kathy

Re: Close friend newly diagnosed

chezWright@aol.com wrote:

As others have said, everyone is different in the way they deal with the diagnosis.  I'm the type that likes to talk and likes to be asked about it although not dwell on it.  A friend, though, does not want to mention the C word or have people ask her or talk about it.  She thinks that will define her.  I have noticed that people seem to look at me trying to assess my current status as though I have a big scarlet C stamped on my forehead, but that's okay because I really know they care.  I'm sure your friend will lead the way in letting you know how to deal with him.


Kathy

But her CC does define her at this point. It sounds as if she's terribly afraid and so denying what is happening to her. On the other hand, I get the best chair in the house when I'm at friends houses. *g*

Re: Close friend newly diagnosed

Kathy...from what sdas is describing it appears that his friend has distal bile duct cancer.  The location of the tumor dictates which surgery is performed.
Distal bile duct cancers (those near the ampulla of Vater) are treated with a Whipple resection, which is a resection of the proximal duodenum (first portion of the small intestine), head of the pancreas, common bile duct, and gallbladder. The Whipple procedure is the same operation performed as for cancers of the head of the pancreas.
All my best wishes,
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: Close friend newly diagnosed

Yes Kathy, Marion is quite correct. My friend's CC is quite close to the pancreas and away from the liver. (Klatskin's / Hilar is the one that is closer to the liver but still extrahepatic).

In fact, in my friend's whipple procedure, no part of the liver is expected to be resected (not sure about the pancreas). It is scheduled in 2 days, and hopefully we'll all be breathing a sigh of relief.

Warmly,

SDas

Re: Close friend newly diagnosed

Hi SDas,

Glad to hear things sounds so positive in your friend's diagnosis (whilst still remembering that your friend needs to recover from massive surgery).  My dad (Malc2073) had the same diagnosis and a very successful surgery - although they did find that some lymph nodes had been infected microscopically.  They can never know this until after the histological reports.

The whipple always takes the head of the pancreas - there was apparently some research which found that bile duct resections were not as favourable as whipple (pancreaticodudenectomy).  Do be prepared for a scary few days after the operation but do trust in your surgeons - ours were amazing.

I'm sure my dad would be happy to relate the positives to your friend - when he's not busy swimming, walking or taking my increasingly active baby off my hands.

Kate

25 (edited by sdas Fri, 25 Feb 2011 11:38:28)

Re: Close friend newly diagnosed

Kate,

Thanks and I am glad to hear that your dad is doing great. As for my friend, we just heard terrible news that the tumor has spread all over and unresectable. He went to surgery earlier this morning, but the whipple was NOT performed. He'll be on chemo. The initial assessment based on the CT scan was inaccurate. I don't know if I'll be able to continue here.... We'll try our best to handle this ordeal. We are so attached to them, they're practically family. Right now I badly need to be alone.

Warmly,

SDas