Topic: Klatskin

Hi everyone!  It is very helpful reading your stories.  My Mom recently had a Interventional Radiology appointment and the doctor is 90% sure she has Klatskin Cancer.  She started having pains in her chest and lower back and the pain was becoming more frequent at night and once in awhile she would vomit and feel better.  Needless to say she had an ultrasound, ct scan with contrast and ERCP, bile ducts dilated is what they said.  The ERCP was not successful, as the blockage was located at the pancreatic duct and common duct and the GI doc was unable to get in.  Then she had a MRCP which also was worthless other than YES, she has dilated bile ducts.  That is why we had to have the IR doc put in a drain and take a look around and biopsy if needed.  The results come in today or tomorrow.  She is in pain and is nausious.  She is hungry but when she eats the bile comes up and she looses her appetite.  I am worried and wonder what could be done.  I do work at a hospital and have a expert surgeon that specializes in the Whipple but honestly do not think she will want to do that.  She is 76 years old and in 2008 we lost Dad and I think she wants to be with him.  Does anyone have any ideas?  I am at a loss on what to do.  I have had the hospital fax over all her records for a second opinion and all the tests she has had has been inclusive.  Now we wait on the biopsy results.  I am praying for her every second.  After all she is not only my mother but my best friend.  Thank you for your support and advice!

Re: Klatskin

Maxnerna...welcome to our site.  (The one no one wants to belong to.)
We do not have a doctor on this site therefore, all information given is related to our very own experience, the knowledge shared by our members, and the subsequent training some of us have received.
It appears that the blockage is preventing food/and liquids from passing through the intestinal tract therefore, you might want to discuss with the physician alternate ways of providing pain relief and nutrition for your Mom.  Suppositories worked well for my husband as did patches (Fentanyl) for pain.  If necessary the physician will order IV for hydration and nutrition.
I think that you are wise in considering your Mom's emotional state by carefully considering options for treatment.  Please know thought that often times, when made comfortable, people change their attitude and opt for different types of interventions.
Within the next few days you should have a clearer picture of the extent of the disease.  In the meantime I would focus on achieving the most possible comfort for your Mom.
Other members on our site will chime in and share their thoughts with you also.
Stay strong, stay positive, and stay with us.  We care.
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: Klatskin

Dear MaxNErma, welcome to our remarkable family but sorry you had to join us. This waiting is the hardest part but honestly once a game plan is put in to place the fright turns to fight and the attitudes change for the better. My husband had a Whipple at 73  and while it is the biggest surgery to the body it is not life threatening. Comfort is the key word here and unfortunately we just have to wait for all the results to come in. Please keep us updated as 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: Klatskin

Thank you so much everyone.  Mom is on the patch and hydrocodine (SP?)and she feels very loopy and has very odd dreams when she sleeps.  She worries about being so loopy as she lives alone and wants to be independent.  All her kids have been staying with her until she is able to care for herself again.  She is a very strong person.  Just 2 weeks ago she was building a new paver sidewalk!
Yesterday she started taking anti nausia medication which seemed to help her eat better. 
I am praying for good results!

Re: Klatskin

It will help if Mom does not try to eat meals but rather graze during the day.  Suggestion is for Carnation Instant Breakfast that can take the place of each meal if need be. It is full of nutrients and Teddy used to like the Vanilla and I would blend in a banana. Your Mom indeed sounds like a very strong lady!

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.

6 (edited by PCL1029 Tue, 11 Sep 2012 12:58:51)

Re: Klatskin

Hi,
May I ask the name of the surgeon that you mentioned ? Is he practice at Northwest hospital near rolling Medows .
The treatment triangle  is always consists of surgery,radiation and oncology treatment.
Unless your mom at 73 has pre- existed condition or the current health condition complicated the situation, otherwise  if there is no metastasis to other part of the body, surgery may provide the best option.
The best surgeon that near you is Dr. Berms at Elgin ,Illinois ,about 15-20 min. Northwest of Rolling Medows down I 90. He is specialized in pancreatic and biliary GI  and liver transplant. A 2nd consultation is recommended if you go for it. He is at Sherman hospital at Elgin.
I am only a patient for 39 months now, as a patient , I think your mother should have the final say of wanted to be treated or not if her cancer metasized . But if she is healthy and do not want surgery ( the only possible cure) , you have to tell her that too.
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: Klatskin

Yes, Northwest Community Hospital in Arlington Heights, IL and the name of the Surgeon is Malcolm Bilimoria, MD.  You can google his name.  I also have Dr. Willis Parson's reviewing my mothers case and he is specializes in GI.
My mother is 76 and has had no major illness in her lifetime.  No surgeries no health conditions, nadda!  I think sometimes she avoids the doctor.  I know why now.  All those tests she had and no results and now she is worse than she was a week ago!  Doesn't make sense other than they poked around so much they made her condition worse than before.
We are still waiting for the biopsy results.  I hate this waiting game.  You really wonder if the doctors are here for us!

Re: Klatskin

Hi Max,

Welcome to the site. Sorry that you had to find us all and I am sorry also to hear about your mum. But I'm glad that you've joined us all here as you have come to the right place for support and help, and you will get loads of both from everyone here.

Yes the waiting game, grrrr..... I went through that as well with my dad and unfortunately, it is something that we go through. We wish that we didn't have to do it but we do, and it took my dads team over 3 weeks before he was diagnosed with inoperable CC. It is so frustrating I know and we know what you are going through right now. But you have done the right thing here in seeking further information about all of this and the better informed you are then the better you will be in helping your mum.

I know that this is such a tough situation for you and your mum to be in and none of us wants to be in it. But please know that we are all here for you. We know what you are going through right now and we care. Keep coming back here and let us all know how things go for your mum.

Best wishes to you and your mum,

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: Klatskin

The PA called my Mom yesterday and told her she has Carcinoma in all her bile ducts and has an appointment today with the Oncologist.  He mentioned Chemo but that's all.  Nothing like dropping a bomb and not telling you anymore information.  I am getting a second opinion and hopefully get some better information before she goes to the Oncologist.

Re: Klatskin

WOW! The PA called? You have learned very quickly to follow your gut feeling! I used to feel that I graduated from GUT 101. Good thinking about the 2nd opinion. Even if you see her ONC today you can hold on the chemo a few days until you get that opinion IF you are not comfortable with your answers today. Be sure to ask for copies of all tests and LABS to to keep with you. Best of luck and please keep us updated, you are NOT alone in this.

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: Klatskin

Hi,
2n d opinion with dr. Brems at Sherman for whether your mom can have surgery for curative treatment is a must before oncologist visit unless they tell you straight that your mum is inoperable.
Why did the GI specialist don't call you himself ;can you ask him whrther surgery can be done and if not, why not? before you will have a 2nd opinion by Dr. Brems. I had 2 liver resection done by him; he is good.
keep in touch and
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: Klatskin

Mom is with the Oncologist now and I got my second opinion.  The results that were faxed were not conclusive enough.  I requested CD of her images and the doctors want her to come here and have a CAT Scan and the surgeon will meet with us to discuss options, in the meantime my Mom can have the GI specialist insert a stent to get rid of the drain and pain.  That drain is really painful for my mom.  The biopsy results only said adenocarcinoma, no stage.  Per the doctor here they said the only real way you can stage this type of cancer is surgery.  So now, I wait to hear from my Mom and tell her this news.  I am dying to hear what the Oncologist told her.

Re: Klatskin

Hi,
If your 2nd opinionof surgery  is within next week. I will suggest to have the CT scan done this week and see the surgeon within next week. .Sometimes, unless it is urgently needed, most surgeon prefer not to have the stent in place so they can evaluate the cancer situation better;they can see the dilated bile ducts much better when there are nothing like a stents to block their views when they evaluate the situation.
This cancer needs experienced surgeons who have performed hundreds if not thousands surgeries on the pancreatic , biliary systems and liver. It is a specialty within  GI specialty.
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: Klatskin

Hello everyone, sad news today from the Oncologist, they gave my mom weeks to possibly a few months of life left.  Stent is not a possibility as the tumor is at the common bile duct and pancreatic duct, it is very large and they would not be able to get in to insert the stent.  They only could offer Chemo to give her some extra months or the Whipple which she doesn't want either of them.  She is at peace and accepted the diagnosis.  I myself cannot accept it and having a very hard time with this.  The doctors where I work want to view the images that she has had, Ultrasound, CT with contrast and MRCP plus the recent IR procedure where the inserted the drain and did the biopsy, those images are critical for my doctors to give a diagnosis.  I cant imagine them being able to do anything to help her.  She doesn't want to go through anymore tests to get to the same result.  I dont blame her one bit.  I want her to be happy and live the rest of her life pain free.  Just to think 2 weeks ago she was putting in a paver sidewalk on her own and running a 40 acre farm to not being able to walk the beautiful woods on her land that she did everyday.  She is such a strong person.  I love her so much and only want the best for her.  I will be leaving to stay with her until her last day on earth, I need to be with her.  Thank you all so much for your support and advice even though my time on this board was very short, you advice, guidance and support really lifted my spirits and gave me and my mother lots of hope.  Yesterday she was ready for the fight but today she is ready to be with my dad.  If anything that gives me some peace of mind.  Take care and god bless!

Re: Klatskin

Dear Erma's Daughter, you have to do what is right for Mom and if that is what she wishes, so be it. She sounds strong and is not afraid, so you have to be strong for her and her wishes as well. Her tumor is located just about where my Husband's was and he had the Whipple. It did buy him 5 1/2 years and he was 73 at the time. I am curious if they mentioned how large the tumor is? If your decisions are to have quality of life that is understandable but please stay on Board with us as we can help you through this journey as we have many others.

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: Klatskin

Hello everyone-
Mom passed away on Wednesday Sept 26.  All of her kids were with her at her home when she took her last breath.  She was very tired and weak the last week and still had hope and wanted to fight.  We had scheduled radiation on Tuesday Sept 25 and that Monday is when she started to slur her words and hallunicating.  We knew something was terribly wrong.  We took her to the doctor to run a blood test to see if she was in liver failure and when we got her to the doctor they could not get a blood pressure and they knew she was passing.  They told us that Radiation was not an option and to get her home and comfortable.  Once that was said my Mom's head fell and her body became listless.  She knew and wanted to leave.  Once we got her home and in bed she and I had a long conversation and she was ready to go to my dad.  She lasted 2 more days and passed. I am numb and still feel this is a dream.  she was the most vibrant woman, full of life and then to watch it all sucked from her was hard to see, but she was comfortable and with no pain.  All her kids were with her and she knew it.  WE all made our peace and the love was abundunt.  I will miss my best friend so much and will carry her with me forever.  God bless you all and I pray for each of you everyday.

Re: Klatskin

So sorry for your loss. May God give you and your family strength during this difficult time.

Re: Klatskin

My deepest sympathies.  I lost my Dad in 2007 and my mom was diagnosed with CC in June.  I feel your pain.

Re: Klatskin

To Erma's Family, I am very sorry about your Mom's passing but not only is she at Peace now she is with your Dad.


Those we love must someday pass beyond our present sight…
They leave us and the world we know without their radiant light.
But we know that like a candle their lovely light will shine
To brighten up another place more perfect…more divine.
And in the realm of Heaven where they shine so warm and bright,
Our loved ones live forevermore in God’s eternal light.

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: Klatskin

Dear MaxNErma,

I am very sorry indeed to hear of the passing of your mum. I know how tough a time this must be for you and please know that we are here for you too. Please accept my sincere condolences and know that my thoughts are with 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.