1 (edited by smodo2 Wed, 11 Jul 2012 14:47:08)

Topic: Inconclusive biopsy, but surgery scheduled

Hello, everyone! Sorry that I found it necessary to discover this sight, but thankful to find others from whom we can gain valuable information . My dear husband, age 78, has been told by the doctors they think he has bile-duct cancer. I am not as knowledgeable as many of you, so I can't share much about the statistics. He presented with jaundice on April 28, and since then has had 2 ERCP's and 2 EUS's, but they still do not find definite malignancy.  They find atypical cells that are suspicious, but nothing definite. The stent resolved his jaundice and he feels better than he has in months. No health problems, and he takes no medications - he is very active and people don't ever think he is over 70.

The doctors have recommended the Whipple surgery, scheduled for Aug 1 at the Medical University of SC in Charleston. We realize that IF it is cancer, then surgery is his only chance of completely removing it, but they are not sure. He is reluctant to undergo such extensive and dangerous surgery without a definite diagnosis. Do any of you have any recommendations on any other possible solutions? Did anyone proceed with surgery without knowing for sure they had cancer?

They have told us the suspicious area is at the head of the pancreas, in the distal region, and the plan is to remove half the pancreas, the bile duct, the duodenum and the upper part of the colon. He does not tolerate IV pain medication at all - it causes horrible hallucinations, which we learned after his gallbladder surgery 4 years ago, and he is very anxious about how long he will have to be on the pain medications.

He refused the surgery at first, but our research indicates that the cancer side effects will be much worse that recovering from surgery. Do you agree with this? After much prayer and discussion, he decided to go ahead and have them schedule the surgery, but I am not sure he will go through with it. I have not had time to look much at this forum, so if this has been addressed previously, I apologize.

God bless all of you - I realize that all of you here are suffering through the same things we are only beginning to experience. Thank you!
Patti

Re: Inconclusive biopsy, but surgery scheduled

Hello Patty….I am glad that you have found us.  I am sure that others will chime in real soon, but thought to answer some of your questions.

Patty, this disease is difficult to diagnose therefore, often times, based on the on the results of blood tests, scans, and patient symptoms surgery is recommended.  (The true extent of the disease only can be determined via open surgery.)

Due to the relatively low occurrence rate of this cancer, it is important to inquire a second opinion from a physician familiar with this type of cancer.  Generally, you will find this in the larger cancer centers.  Our members have established a listing of doctors and although quite lengthy, it may still be of help to you.  I am enclosing the link:

http://www.cholangiocarcinoma.org/punbb … hp?id=3126

Your husband’s age should be less a factor rather, the overall health will allow the physician to determine whether your husband is a good candidate for this type of invasive surgery.

Your husband will require medication for pain; that is something of importance to discuss. 

Again, I am glad that you have found us.  I am sure for many others to welcome you and share their knowledge.

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

3 (edited by PCL1029 Wed, 11 Jul 2012 16:39:02)

Re: Inconclusive biopsy, but surgery scheduled

Hi,

Age is not a risk factor for having the Whipple procedure if you husband is healthy and no other health issues.
Gallbladder surgery 4 years ago and involvement of distal portion and head of pancrease plus jaundice now  are strong possibilities  that your surgeon's decision to have Whipple is correct even there is no final diagnosis.
If the tumor is small or grow along sides of the wall of the  bile duct in the distal areas,ERCP or EUS may not pick up the tumor sample enough to confirm the final diagnosis;but atypical cells founding is another hint of the cells in that area of concern are changing which normally is the pre-cursor of things to come.
I am just a patient  and not a doctor ;but I agree with your husband and the doctors to go ahead with the Whipple procedure.
2nd  surgical opinion is highly recommended
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: Inconclusive biopsy, but surgery scheduled

Dear Patti, Welcome to our extraordinary family but sorry you had to find us. You did remarkably well in your post for a newbie. Your story reminds me of mine.
Teddy was DX at the age of 73. He had totally Jaundiced and itching terribly. They were able to ID the CC and they began a Whipple. Unfortunately after 4 hours it was aborted as the Surgeon needed to cut the head of the Pancreas to get to the CC which was contained in the bile duct valve and the dye from the Endo had leaked on the Pancreas and 'mushed' it so it could not be cut. He was in the hospital for a week and then he went home to rest up. After 2 weeks he had developed an E Coli infection that almost did him in. 9 more days in the hospital and then the real deal. He had his Whipple with clean margins. They removed the head of the Pancreas, Gall Bladder, Duodenum and he did fine. This is the largest surgery to the human body however, it is NOT life threatening. Heart surgery is life threatening, this is not.
If your husband is in good condition it is his best chance. Teddy was sitting up the next morning! It is a long recovery and he did well for several years.
We felt the surgery bought him 5 years. We never looked back and we never regretted what we did.
We are a special chosen few here as CC seems to be for the very strong. We have such courageous people here.
The only other thing I would mention is that I would also seek a 2nd opinion at a major Cancer Center where they have experience with CC.
Do not be afraid of the surgery, they kept Teddy virtually pain free and if your husband can't take one Med perhaps they can work with another. Please keep us posted 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: Inconclusive biopsy, but surgery scheduled

Hi Patti,

Welcome to the forum (but sorry that you had to find us).

Your husband's case sounds very similar to my wife's, except she is much younger. She was diagnosed last year at age 44.  Her tumor was in the distal portion of the common bile duct, inside pancreas head. Your husband's tumor seems to be in the same spot. My wife's ERCP biopsy was inconclusive too. They found atypical cells that looked suspicious for adenocarcinoma, but no actual cancer cells.

The doctor who did EUS told me this: "I'm pretty certain your wife has CC. Even if I'm wrong, you don't want to take any chances."

That sealed the deal for us. We called the surgeons and scheduled the resection, even though we didn't have a definitive diagnosis. The CC diagnosis was confirmed by the final pathology report that we received two weeks *after* the surgery.

As Lainy mentioned, Whipple is not a life threatening surgery. That said, it is a BIG surgery. It carries a risk of pretty significant complications. It's very important that your husband's surgeon has a lot of experience doing Whipples. Ideally, you want to find a surgeon who has done 100+ Whipples in their career. The more experience they have, the better your chances are for an uneventful recovery.

Best wishes,
Eli

Re: Inconclusive biopsy, but surgery scheduled

Hi. I am 32.  I had intrahepatic cholangiocarcinoma, meaning it grew in my liver. I did receive surgery without knowing it was cancer.
I had abdominal pain and a large mass was found. I sent my records to a surgeon I used to work with and he said it doesn't matter if it's cancer or not, it needs to come out, so that's what we did.
I did not have a whipple, I had a liver resection.
They are both big surgeries.  Like everyone else has said make sure he is going to an experienced surgeon.
If he does have cholangiocarcinoma, as you mentioned,  surgery is the only chance for a cure and there is only a very small percentage of patients who present early enough that surgery is an option. So, if he is a surgical candidate, I would probably go for it.
Make sure the surgeon explains the risks so you know exactly what to expect.  It is a big surgery and his age will probable make his recovery a little more difficult, especially if he has underlying health conditions.
As far as IV pain meds go, he will need some after surgery.  How much varies from patient to patient and when he starts tolerating a diet he can be switched to by mouth.
Do you remember what pain med he received in the past? Maybe if he switched to a different one it would be better on him.
I would explain this concern to the surgeon and the anesthesiologist to see what his pain management options are.  I would ask if IV Toradol is an option.  It is not a narcotic it is a NSAID. I believe it can be hard on the kidneys so there is a maximum dose you can receive. It is often given in combination with iv narcotics to lessen the amount of narcotics needed.  Also ask if a lidocaine ball can be used. It is an external ball the administers a numbing medication.
There are lots of options.  Ask about them.

Best of luck and please keep us posted!

Susie

Re: Inconclusive biopsy, but surgery scheduled

Thank you all so much! It is most encouraging to hear from others who have had to travel on this precarious path, and I am sincerely grateful for you taking the time to respond.

We don't think we should take the time to find another doctor, as I have read that CC is an aggressive cancer and it has already been 76 days since his symptoms presented. Dr. Cole is the surgical oncologist that will perform the surgery, and he is head of the dept. at MUSC with 18 years experience, so we feel comfortable with his level of experience.

I will definitely ask about the lidocaine ball - that sounds like a possible solution. The meds he had before were morphine and dilaudid; the hallucinations from dilaudid were not as bad as from the morphine.  We talked with the doctor about this already, and he said they may use an epidural for the first three days, as he thought that would be better than IV injections.

This still seems so surreal - he appears to be in perfect health, has a great appetite, is regaining the weight he lost during the jaundice episode, and he has no pain at all. And yet they told us that even if it is benign, the same procedure must be done, as this is the only way to know for sure.

We want to travel and visit with all our family over the next 18 days - we have 6 children, 20 grands and great-grands, as well as 8 siblings and their families, so it will take some time to visit all of them. Our only concern with traveling is that we feel like we are sitting on a time bomb, and he may wake up tomorrow and be extremely sick. Do symptoms begin that quickly, or do they come on gradually?

Again, thank you all for your comforting words - we were so encouraged to read all your stories - especially that surgery gave Teddy 5 more years, and we would be so grateful if God allowed us that much more time! We will be praying for all of you! Patti

Re: Inconclusive biopsy, but surgery scheduled

Patty....In re: to traveling:  we did just that prior to my husband's surgery.  You might want to ask the physician beforehand however; if your husband is feeling up to it then I don't see any reason for you not doing so. 
I also wanted to mention that a pillow held against the abdomen (post surgery) will reduce pain while coughing.  Most nurses are aware of this, but I thought to bring it up anyway.
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: Inconclusive biopsy, but surgery scheduled

Patti, one more suggestion for pain after surgery. I had my own rare cancer 1 1/2 years ago and when they took me in to the surgery room I asked if I could have a spinal block. Not a bad thing at all and I was numb around the tummy for a good 24 hours.

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: Inconclusive biopsy, but surgery scheduled

Hi Patti,

Welcome to the site. Sorry that you had to find us all and I'm sorry to hear about your husband. But glad that you've joined us here as you will get tons of support and help from everyone. There's not much that I can add really to what the others have said to you about surgery etc, but I just wanted to stop by and welcome you here.

My best wishes to you and your husband,

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: Inconclusive biopsy, but surgery scheduled

Hi Patti,

I wish you both the very best as you go through this surgery. From my own experience with two extensive  surgeries, I think your husband might do better with the epidural. It would control the pain more consistently and hopefully would also be easier to tolerate. By the time they removed mine a number of days after surgery, I needed very little additional pain meds.

Best, Mark

Re: Inconclusive biopsy, but surgery scheduled

Mark...thanks for mentioning the epidural. It worked wonderfully for my husband also. 
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: Inconclusive biopsy, but surgery scheduled

My wife had epidural too. It worked wonders for her. They removed it on day 2 or 3 after surgery. She experienced very little pain.

Re: Inconclusive biopsy, but surgery scheduled

Hi Patti and welcome. This cancer is often hard to diagnose. Sounds like you have a medical team that's on the ball. Seven years ago when I was hospitalized and in ICU, I hallucinated with morphine. They switched up the drug and no more hallucinations (they were awful!). I can't remember what they put me on but there are lots of options that do not have the side effect of hallucinations like morphine does. Anyway I am wishing your husband and you all the best on the 1st. I will send special thoughts and prayers that day. Nancy

Loving my husband from afar.