The order of things?
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Some things we have thought of: They used alot of Round-up or Ground Clear, to kill weeds. They had a couple of homes over a period of 10 years where they lived in them while the remodels were being done. The homes were built in the 70’s so perhaps had asbestos or some form or carcinogen in the wallboard, insulation, etc. My baby brother read of two cases where a husband and wife both had CC and in one case the only thing in common was that they had a horse and sometimes the hay can have some sort of mold in it. My parents had horses for years. Not really having an idea, the docs suspected Dad’s could have possibly been caused by 50 years of hard core smoking, my Stepmum smoked for a short time – however, she was a flight attendant for 40 years with most of that time being when people could smoke while flying so she had alot of second hand smoke – she was exposed to alot of radiation while flying all of those years – but Dad did not fly…so I don’t know…still rolling this around. They traveled to the South Pacific together 30 plus years ago…you are right – this cancer is so rare, what are the chances. Sometimes I have a brain block and think I’m looking up information for Dad and then I realize it’s for my Stepmum and it just doesn’t compute.
Lainy and Eli: thank you for the good wishes and great information. I will find out if she is having the Whipple surgery. It was quite crazy when she went to see the surgeon for the first and only time. He needed a cat scan with contrast and was surprised that she hadn’t had one, so being the great sport that she is, said “if you’ll get it o.k’d with my insurance, I’ll wait right here and we can do it now”. So off he went, got the insurance o.k. and she was able to get the cat scan that evening. She didn’t see the doctor again, but has been in contact with his surgical nurse for scheduling. The nurse asked her if she would like to see the doctor prior to surgery but she declined, because he had told her that surgery was optimal, and she just wants to get it done. Most of my information has been from looking online, and now from you. I had read about the Whipple and suspect that is what she is having based on location. I didn’t know they would remove that much though – eesh. Prior to surgery she has to have a pre-op check-up, a 3 hour glucose tolerance test to see how her pancreas is metabolizing sugars (not sure if I have that correct), and a special blood test in case she has to have a transfusion during surgery. One of my concerns, Eli, when you mentioned nutrition after surgery, is that I had read that the stomach can stop functioning for a while. She is such a tiny little thing as it is – she’s 5’3″ and 102 pounds! She’s always been little, but did lose about 8 pounds during all of this since November. She has always been a pretty healthy eater – we used to call her the Prevention Lady as kids because we’d be off to Taco Bell or In N Out and she’d convince us to stay home and make salads or omelets! She is eating well, but nothing that will really put weight on her…maybe that’s not neccesary?
Marions: thank you so much for your good wishes and I will pass them on to my Stepmummy. Everyday we bumble around in disbelief also that both she and Dad have the same cancer. It was 5 1/2 years between each of their diagnosis. It has to be something they either ate or came in contact with in common, we just don’t know what it is. The only difference between the two is that Dad’s was intrahepatic and Stepmum’s is extrahepatic. Also, when Dad’s finally presented he was at Stage IV. We don’t have a stage yet, but she presented with jaundice and Dad didn’t jaundice until the end. The docs are astounded as well.
Sweetdreams to all!
Not just the same cancer. The same RARE cancer. Very hard to believe. This definitely raises the question… what it is that both of them got exposed to???
Duzalot….I remember you saying that your Dad had undergone palliative surgery for his CC tumor. I still am in disbelief to hear of a husband and wife to diagnosed with the same cancer.
Please tell your stepmom that tons of good wishes are coming her way. You keep up the good work, Duzalot. You both of are a great team.
Hugs,
MarionDuzalot,
My wife’s tumor was in the same place. Common bile duct near the pancreas head. Except hers was both inside and outside pancreas head.
Do you know what kind of surgery your step-mom is scheduled for?
If the tumor is far enough from the pancreas head (higher up in the common bile duct), there is a *small* chance they will resect just the common bile duct. My understanding is this surgery is quite rare, because it’s less likely to secure clear margins.
The most likely scenario, she will be having Whipple surgery. As Lainy said, Whipple is a big surgery. One of the biggest surgeries a patient can have on their body. The surgeon removes the common bile duct, the gallbladder, part of the pancreas head, duodenum (upper part of small intestine) and pylorus (the bottom part of the stomach). Some surgeons do newer kind of Whipple that preserves the pylorus. It’s not necessarily better. After the above-mentioned organs are removed, the surgeon pulls up the small intestine and reconnects it in three places. To pancreas head, to the bile duct stub and to the stomach.
I recommend that you google “Whipple surgery” and read more about it, so you know what to expect. Tons of excellent information on the net. Knowledge is power. Pay special attention to nutrition during recovery. It can be tricky. The surgery rearranges the digestive system in a pretty radical way. Body needs time to get used to the new order of things.
FYI, my wife had Whipple too. I will be glad to answer questions if you have any.
Duzalot, not too far from where Teddy’s was located as his was in the bile duct valve and the head of the Pancreas had to be removed. It was not too bad. He was sitting up the next day in a chair! Long surgery, 8 hours, but he was lucky to have clean margins. He had a Morphine pump and was kept quite comfortable. Because they had to cut in to the Pancreas he was on insulin but only in the hospital. His whole attitude about food changed. He was a chocoholic and he could’t stand anything sweet for months! Stepmum will be just fine. It is a pretty long recovery so everyone has to be very patient. This is a huge surgery, NOT life threatening but a big one, bring some good books. I will be saying prayers and sending good vibes to all of you with a special prayer on the 21st for God to come through the surgeons hands!
Great news! We have a surgery date!! Wednesday, the 21st. Thank you all for your replies. Lainy – Stepmum is in So. Ca. and is going to Cedars-Sinai for her surgery with Dr. Nicholas Nissen. Her’s is extra-hepatic in the common duct near the pancreatic head. Any information about your experiences with this is, once again, so very much appreciated. I am so grateful to have found you all, I wish I had you all when my Dad was going thru this.
I don’t think it’s odd that your step-mom doesn’t have an oncologist. My wife followed the same clinical path. Meet the surgeons first. Do the surgery. Wait for the post-surgery pathology report to provide full details about the extent of the tumor. Only then did we get the referral to see medical and radiation oncologists. As mentioned by Kris and Marion, treatment plan depends very much on the surgery outcome.
Note that your surgeon is a specialist in surgical oncology. In that sense, you do have an oncologist. Surgical oncologist, that is.
I agree. I would keep the appointment with the surgeon however; I would make sure that he/her performed numerous bile duct cancer resections.
If this is not the case, I would advise you to search for alternative physicians.
The onco appointment is not necessary at this point. Everything hinges on the probability of resection first.
Hugs
MarionI met my surgeon first. But I did meet my oncologist thru him before my initial surgery. I think it’s okay depending on the surgery and outcome.
I would fight for a center that deals with bile duct cancer. Even some of the “best” cancer centers don’t deal with this. Or get an oncologist that is willing to talk to someone at MD Anderson, Sloan Kettering, NY Presbyterian Mayo, etc….
Good luck to your stepmum I wish her all the best.I know you are from Flag but she is not being treated here right?
I thought one needed an ONC before ANYTHING is done. This is a new one on me. Sorry. Too bad you can’t bring her out here as we now have Mayo and MD Anderson and some wonderful ONCs.Hi – I posted earlier in Introductions that we are currently waiting for a surgery date for my Stepmum. I was curious if the fact that she does not have an oncologist at this point is odd. Or maybe she will have one once she has had surgery? She does not have a lot of choices within her HMO and her family physician is virtually useless. Any words from the wise will be very much appreciated. Thank you!
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