Topic: New member,Any advice or positive support appreciated

Hello All,

My dad is 69, and has been having some health issues, after about a month of tests. They found a 2 mm stricture on the distal end of his common bile duct. The biopsy came back inconclusive, and they are recommending the Whipple surgery, which is scheduled for this Saturday. My dad is freaking out and now is questioning the surgery, more scared of the surgery and recovery from it than the cancer itself.  We are all scared!

Could you offer any advice or support for us? We want him to be hopeful and fight.
He said he has been doing research and doesn't find many positive outcomes....  Any would be appreciated.   Thanks so much!! Chris

Re: New member,Any advice or positive support appreciated

Dear Chris,
Lainey and others will probably get to you soon. Lots of others have had it as well and here on this board we consider your Dad even "lucky" that its an option. I'm sure your Dad doesn't feel very lucky though and its understandable that he is having anxiety right now. This gets better as you gain confidence in the plan and meanwhile the Dr may prescribe an anti anxiety med like Ativan.
Hang in there!
Willow

Willow

Re: New member,Any advice or positive support appreciated

I meant to say Laineys husband had the surgery and it bought him 5 more years. lots have had the Whipple surgery too and many are back to normal life.

Willow

Re: New member,Any advice or positive support appreciated

Hello Chris,

I had whipple surgery 12/2009 and while the recovery was not a picnic, it was not anywhere near horrible.  Everyone is different, so I cannot predict how your father will recover.  My surgery was 6.5 hours long but I was only in the hospital for 6 days which is a record for my surgeon.  The hospital stay varies for everyone and in my humble opinion is dependent on the physical health of the person before surgery.  I was just shy of my 54th birthday and in pretty good physical health (no heart disease, no diabetes, average weight, exercised regularly).

Before my surgery I was concerned that I would never be the same person.  I can tell you that while I have some issues my stomach occasionally, I am very much the same person and do the same things.  I still run and exercise, eat right, I went back to work 6 weeks after my surgery to my (admittedly sedentary) desk job.

Tell your dad that mostly only people with horror stories post on websites about their experiences, so to take of it with a grain of salt.

I will not minimize the seriousness of this surgery, but it's the only potential cure for this cancer, I fell blessed to have been able to have it,  and I would do it again in a second.

Please feel free to email me (randi.barrell@gmail.com) if you would like any specific information about the whipple.

Best wishes,
-Randi-

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: New member,Any advice or positive support appreciated

Ok I'm Chris's dad and I posted earlier but not on the introduction board.
I don't think I am freaking out but I will admit I have lots going on in my mind especially since I still don't know anything for sure.  Anyway, here is the original post I made and thanks in advance for any responses I receive.
AlanC

Hi all.  New member here who is scheduled for a whipple 4/13 @ Brigham and Womens.  I am a 69 year young male who has been blessed to be married to my best friend Betty for 48 years.  We raised 6 great children and now are blessed with 16 grandchidren. 
I was on vacation in St Martin, my favorite island, and was fine at 8:30 am and felt lousy at 9 am.  Returned home on 3/2 and called my GI Doctor who got me in very quickly.   After hearing my symptoms he was convinced I had experienced a gallstone attack.  Ultra sound, cat scan, endoscopy and ERCP results prompted him to refer me to Brigham and Womens for 2nd opinion.
Scrapings from ERCP were suspicious but not definitive.   Other than having a pacemaker installed because of an electrical problem my health has been excellent.
Not sure what to expect will be found nor what the future holds at this point so I am somewhat of an emotional basket case at this time.   My intent is to put up the best fight I am able to but by the same token do not want any extra ordinary efforts made and do have a living will.  Hopefully I will be able to contribute to this forum in the future and provide insight and support to others. 
AlanC

Re: New member,Any advice or positive support appreciated

Dear Christine, welcome to our remarkable family, you have come to the best place to be. My husband, Teddy, had the Whipple in August of 2005. While the Whipple is a big surgery it is NOT life threatening like heart surgery. Teddy's surgery lasted 8 hours and the next morning he was sitting in a chair when I got to the hospital. Recovery takes time and one must be very patient. Like Randi said, you are among the blessed that Dad can even do this. Teddy was 73 at the time of his Whipple and 7 years ago they gave 'Whipplers a year' but we got another 5 1/2. Things have even improved since then, who knows what is round the corner. You all need to be tough and present Dad with a united front. I gave all notice that they must not be upset in front of Teddy. Teddy had told me that he was steeling his mind for had to be and my job was to tell others that crying or being upset was forbidden in front of him and that helped make him stronger. One suggestion I have, having had my own stomach surgery 3 years ago, I suggest asking for an epideral. I was already on the surgery  table when I thought of it. Sure helped for the next 2 days as I was pretty numb. No one wants surgery but on this Board we celebrate the word. May I ask where the surgery is being done? Feel free to ask me any questions by email, we are all here for you. I pray for God to come through the surgeons hands and please keep us updated on Dad's progress.

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.

7 (edited by PCL1029 Tue, 09 Apr 2013 15:27:45)

Re: New member,Any advice or positive support appreciated

Hi, Alan,
Some times messages did get lost in this discussion forum, sorry to miss your previous entry.
I am foremost a patient of this disease for 47 months, as a moderator for this board only for a couple years due to the fact that I do want to contribute something in return to this web site after my diagnosis. i am a medical professional have daily contacts with doctors,nurses and patients as well;but this did not easy my fear of uncertainty about this disease. This board provided me the comfort and understanding that   it is not the time but the deeds that define a person. And that is how I got involved with this forum among others.On the other side of the coin, sometimes life needs a detour from the ordinary in order to appreciate God 's Grace , blessing and calling.
I am a 64 years old male, compare to me ,you are very fortunate that you discovered this disease  so early enough to have the only possibility of cure for this disease.
ERCP is useful but most of the time cannot give you 100% indication of the corrected diagnosis.Only after they operate and get the pathology report on the tumor sample will they are for sure of anything.
Randi, another moderator from this web site, her personal experience will give you a better picture for you to make your final decision.
I am sure once your emotion settles down, you will be at easy knowing that you have made the best judgement that you can for yourself as well as for those ,like your daughter, who love you always.
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: New member,Any advice or positive support appreciated

Thank you so much Willow, Randi and Lainy,
Truly appreciate you getting back to me.. and your words!

My Dad is Alan C, he just joined today as well and posted on my reply...see above!

He is scheduled at Brigham and Woman's in Boston with Dr. Swanson, who is quite experienced with the Whipple...

Thanks again for any and all information, thoughts, prayers, ideas...everything!
We are just so afraid of the unknown!
Chris

Re: New member,Any advice or positive support appreciated

Chris, not to worry, we have all had the same fears when starting on this CC Journey! Sometimes I feel CC has a brain of it's own as it only seems to pick the best and the most courageous. I saw Dad's post after yours so I will use my post to you as well as a welcome to Dad. I had family in Newport R.I. is that anywhere near you? They have all left there but just curious. Shhhh  we can't discuss Dad now as he will see, HAHAHA.      You never know how strong you are until "strong" is the only choice you have!

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: New member,Any advice or positive support appreciated

Alan and Chris, Welcome and sorry you had to find us. I am a CC survivor thanks to a liver transplant, there is HOPE!!! I have an amazing story to share and I keep it posted at www.catherinedunnagan.com under the telegraph link.
I am curious if they have discussed transplant with you since your tumor is relatively small (the same as mine). My miracle worker is Dr. William Chapman at Barnes-Jewish Hospital, St. Louis MO. Liver transplants for CC patients is still new and many doctors don't discuss it, so my advice is to make sure it is ruled out as an option by a doctor who believes it is an option. I was diagnosed StageIV, inoperable and 6-8 months to live on July 31, 2008 and am in my 5th year of"6-8 months" to live. Dr. Chapman is an amazing man and doctor, he has changed a few of our CC family lives, saying yes when otheres said no!!!
I am alive because of God, 2 strangers and Dr. William Chapman. There is HOPE!!
Please contact me if I can help or you want to talk.
Lots of prayers and HOPE-Cathy

Re: New member,Any advice or positive support appreciated

AlanC,
I understand your concerns perfectly,and would have the same ones. I am a medical professional (CRNA) and will tell you that the most important thing is to have a very experienced surgeon which it sounds like you have.  This is very big surgery but you're lucky it's an option for you.  I pray all goes well with you and you have a quick and uneventful recovery.  God bless.
          Dianne

Re: New member,Any advice or positive support appreciated

Alan and Chris....already you have received many welcomes, but I wanted to also chime in and say hello.
Alan, those that are fortunate to have surgery (resection) have the greatest odds of surviving this cancer.  Having said that and as Cathy has mentioned, some have done well with liver transplantations. 
In order to help reduce some of your anxiety please, try to reach out to those having undergone Whipple surgery, as nothing beats the first hand experience of another person. 
Stay with us - 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: New member,Any advice or positive support appreciated

First I would like to thank all that responded to my daughter Christine's and my posts.  I am headed to Boston today for pre-op and will have the whipple surgery Saturday morning performed by Dr. Richard Swanson at Brigham and Womens.
I am hoping that others will not make a mistake that I did.  Being newly diagnosed with cc I rushed to the internet to learn all that I could about this horrible disease.  After a fairly significant amount of reading I began drawing conclusions that were not necessarily true about the  length of survival and what I would be exposed to during the process.  I then began to question whether I should put myself and my family through this process if I was only going to extend my life by a few months.  Thankfully I decided to question my surgeon on the pros and cons.  He quickly pointed out to me that each and every case was different and that I should not assume that my case was the same as anyone elses.  He also told me that some posts were no doubt written by folks who were angry at the time they wrote it.  Last but not least, he told me that while he couldn't tell me how long I would live after having this surgery, he could tell me I would be dead in less than two years if I didn't have it.  He also said he had one patient who was still alive  15 years after surgery.  Needless to say I am going to have the surgery and will put up the best fight I am capable of as I have a remarkable family who are providing incredible support  and I hope to be a part of their future.  One of those family members is grandaugter Caroline age 10 who is a 5 year cancer survivor and is now considered cured.  She wrote this beautiful poem for me and I would like to share it, it is titled Hope!

Hope

Everybody has it deep down in there heart
it takes away stress and gives you a brand new start
hope makes you say the "I will's" and "I can's"
it gives you a chance to sit in God's hands
although it is odd to feel this way
god is with you every step of the way!

Love, Caroline And the O"Neil's

That is exactly the way it was written (no corrections) by a 10 year old who has walked the walk though her cancer was Rhabdomyosarcoma.

The one other thing I would like to share for those that may not know about it is a site called Caring Bridge where a website can be created to keep folks informed.  This is especially helpful in letting friends and family know how you are doing as emails are sent automatically to those who are registered when updates occur.  This site was recently created for me by my daughter Peggy for me:     http://www.caringbridge.org/visit/alancameron1

Re: New member,Any advice or positive support appreciated

Dear Alan, I am still tearing from the Poem your Granddaughter wrote, and how proud you must be. Of course I looked up the type of Cancer but I tell you Alan, when you are feeling anxious think of the little brave Munchkin!
I wish I could take some of you fear away. Remember this, there is a much better chance of beating the monster CC with Surgery. You will be more comfortable those first 2 days after if you ask for an epideral. They really don't hurt, they sound worse than they are and your first 2 days will be so much better. I wish my Teddy could talk to you, he was 73 when he had his, actually had a double as the first was aborted after 4 hours from dye that leaked from the Endoscopy on to the Pancreas and destroyed it so the Surgeon could not cut in to it. 3 weeks later he had the real deal.
He totally steeled his mind for the first one and for the 2nd he was fine. This bought him 5 1/2 years. When we got the final prognosis at the end of the 5 years we went to Milwaukee to visit family for 2 weeks and Teddy wanted to thank Dr, Henry. The first thing the Surgeon said was, Teddy I never thought you would make it a year.
BUT he never told us that before. See, we were not born with expiration dates on the bottom of our feet! Ya just can't believe all that you read and we don't listen to statistics for CC as they are not proven yet. I am praying for God to come through the Surgeon's hands.


                     God gave me difficulties to make me strong.
                                         I asked for wisdom.
                              God gave me problems to solve.
                                        I asked for prosperity.
                         God gave me brawn and brain to work.
                                         I asked for courage.
                           God gave me dangers to overcome.
                                         I asked for patience.
            God placed me in situations where I was forced to wait.
                                         I asked for love.
                     God gave me troubled people to help.
                                         I asked for favors.
                               God gave me opportunities.
                               I received nothing I wanted.
                             I received everything I needed. By Aaron Hoopes

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: New member,Any advice or positive support appreciated

Alan I want I wish you the very best for your surgery and for a speedy recovery back to better health in the days after. 

Your grand-daughters poem - wow!  Just beautiful.

Clare

In the stars now . . . .

Re: New member,Any advice or positive support appreciated

My rollercoaster ride continues as today I went to Boston for my pre op testing and met with Dr. Banks the physician overseeing my case.  He had just finished speaking with the surgeon and they had decided to postpone my whipple surgery which was scheduled for day after tomorrow.
Instead, I am to report to the hospital pre-op and another ERCP is scheduled for tomorrow.
The reason given was that their pathologists had come to the same conclusion as the previous pathologists report that my slides were "suspicious" but not definitive.  Tomorrow a number of biopsies will be done in various locations and I will have to wait until the results come back before surgery is rescheduled.  Dr. Banks indicated that while he did not want to give me any false hope he did not want me to go through this surgery without a definitive diagnosis.   So things are on hold for the moment and while I had geared myself up for the surgery who knows what is next?  I will keep you posted when I know more.  In the meantime thanks for all of your thoughts and good wishes.

Re: New member,Any advice or positive support appreciated

Alan, and again the roller coaster is off and running!
WHAT A GOOD TEAM YOU HAVE on your side. No room for errors with CC. OK, we shall wait with you and please 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: New member,Any advice or positive support appreciated

Alan,

While I am sure it is disappointing and at this point you just wanted to get the surgery over with, it sounds like you have a cracker jack team that wants to do things right.  How bad can that be?

Good luck with all of your tests and keep us posted.

Best wishes,
-Randi-

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: New member,Any advice or positive support appreciated

Alan.....definitely, you would not undergo a surgery of this kind for the wrong reasons.  Your physician is ruling in your favor by eliminating any doubts - he is on your side.

Also, I would like to mention that we have a blog section.  It provides a great place to place your caringbridge address. 
http://www.cholangiocarcinoma.org/punbb … .php?id=31

Good luck tomorrow, fingers are crossed, and please stay in touch.
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: New member,Any advice or positive support appreciated

Hi Alan,

I know how frustrating the ups and downs of the medical decisions can be.  I've been through a few myself but as your doctor said - they want to be sure before putting you through surgery.  That tells you how intently they are looking at your case and making sure the best decisions are being made. Kudos to your doctors!

Your post was very inspiring to me AND your granddaughter's poem was beyond her years!!!  What an insightful, beautiful girl at such a young age.  That alone has to give you so much hope.  I lost my son to Rhabdomyosarcoma back in 1989.  It's so good to see all the advances that have been made since then.  I was so happy to hear that your granddaughter is a survivor!!!

Thanks again for your post.  I'll try and stay away from reading all the stuff on the internet and driving myself crazy! 

Re: New member,Any advice or positive support appreciated

A quick update.  Another ERCP completed yesterday.  Heard that my surgery was postponed after a case conference was held since my test results are so unusual and are not conclusive.  Test went well with several samples obtained for pathology to review including the stent which had been inserted 3/26 and was filled to the point of almost being closed by sludge.  A small stone was also removed and last night was the first night I have slept pain free in some time.  Whipple surgery scheduled for Friday 4/19 depending on what test results show.

Re: New member,Any advice or positive support appreciated

Meant to include this in my update for mcwgoat especially and any other folks who might be interested in Caroline's site: http://www.caringbridge.org/visit/carolineoneil

Re: New member,Any advice or positive support appreciated

Thanks Alan.  Caroline is one special little girl!!!  her inspiring story brings tears of joy to my eyes.  We can all take a lesson from her.  I can imagine she will be your inspiration in the days to come. 

I have a large family also and it means a lot to have them around and ready to encourage me on the down days.  Sounds like your family will get you through this.  Stay strong!

I will keep you in my thoughts and prayers.

Mary

Re: New member,Any advice or positive support appreciated

Alan...a good night sleep you well deserved - wishing for the absolute best outcome with the pathology report.
Fingers are crossed and tons of good wishes are heading your way.
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: New member,Any advice or positive support appreciated

Dear Alan, whew, glad that's over. April 19th will be a remarkable day with great results. So glad you are feeling much better! I will be praying for God to come through the Surgeon's hands.

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.