New member,Any advice or positive support appreciated
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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.
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!
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/viewforum.php?id=31Good luck tomorrow, fingers are crossed, and please stay in touch.
Hugs,
MarionAlan,
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-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.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.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.
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 HoopesFirst 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
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,
MarionAlanC,
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.
DianneAlan 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 http://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-CathyChris, 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!
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!
ChrisHi, 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.
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