Hi Everyone - Wow! This has been quite a ride. My stepmum's surgery went amazingly well. She had a modified Whipple (left her stomach alone), as noted before all of her margins were clean. She skipped ICU, went right to a regular room and left the hospital in 6 days. The doc says she is in the top 95 percent and the night before last she at a personal size pizza!!!! She has had no digestion problems whatsoever. A complication did arise - she had a nasty infection at the wound site which can happen in any surgery. I am packing the wound and we are moving right along. The doctor has released her to drive, eat, and get on with life! We are waiting for her to get an oncologist and treatment. We received the final report on Tuesday and here is the strange twist: She actually has pancreatic cancer, not cholangiocarcinoma. The surgeon said that this happens sometimes with the initial Thank you all for your thoughts and prayers - they definitely came through because her surgery and recovery have been excellent.
Stepmummy went in for her surgery this morning. Surgery began at 9:45am and we are still waiting at 10 minutes to 2pm!! Yay!!! They removed her bile duct, pancreatic head, duodenum, gallbladder and I believe part of her stomach (?? not sure - alot to take in and I didn't write it down) - the margins came back clean from the first specimen and they are now reattaching everything. The enormity of this is finally sinking in - I've been standing in the pool of denial for a while. She did have a full Whipple. She is doing well and I will get another call in a while for more updates. Thank you all for your prayers!
Lainy - we got THREE FEET of snow!!! Did you get alot of rain? Sheri
Getting excited to head to CA tomorrow - surgery Wednesday - it sure feels like it's been a long wait to get here. Regarding the brushings - Stepmum's first brushing showed atypical cells, that's when the other doctor said to go deeper and he did that for the 2nd brushing which confirmed the cholangiocarcinoma. Also, that same doctor did a "spyglass" on her at the same time as the 2nd brushing. Do you think going deeper does make it more reliable? Or is this just that particular doctor's preference?
Hi Virginiagal: I just wanted to comment on the doctor doing a brushing of the stricture. My stepmum has been going thru much of what your mom is going thru right now. With her first stent placement the doctor suspected pancreatic cancer because of a shadow on one of her ct scans. She was then sent to Cedars Sinai and had an ERCP. The doctor at Cedars suspected cholangiocarcinoma at that time not pancreatic cancer, but the insurance company (HMO) only allowed the doc to rule out pancreatic cancer, which they did. How crazy is that? That same doctor insisted that she come back for another ERCP and a EUS, because he felt (this is the part I was getting to in the first place) that the original brushings done were not deep enough. He said that he would prove that she did have CC and he was correct. I find it interesting that he wanted the brushings deeper. My stepmum is scheduled for surgery this coming Wednesday but it has been 4 months since she originally went to the ER with a strictured bile duct.
Hi Lainy and Kate! Thank you for your wishes and Kate for more information on after-surgery nutrition. I am just so excited right now and it's 'cause of that word: SURGERY! My Stepmum has been scheduled for this coming Wednesday - she has done all of her pre-op (lots of it) but I was still holding my breath regarding the insurance (HMO and out of area) and it's all approved. YAHOOOOOO!!!!!!!!!!!! Time to get this done! Lainy, we're supposed to get some big weather and you too. I was leaving on Monday, then was going to go tomorrow, now back to Monday, maybe Tuesday. Oh my, little challenges along the way - but it's o.k. 'cause we're headed to SURGERY!!!! Yay, yay, yay! Thank you again and I'll let you know how everything goes.
Thank you Ike - I'll pass this on to my Stepmum. She is scheduled for this coming Wednesday for her surgery. Who would think we would all be so happy for this to happen......!!!! I'll look back on your posts and get more information to her. Thank you again!
Dear Sugar Plum Fairy: I completely understand what you are going thru. I lost my very best Dad in the whole world four and a half years ago to this dreadful cancer. He was diagnosed stage IV and we had him for an incredible year and five months. When I had to tell my boss that I would be gone for awhile, that my Dad wasn't going to make it, I started crying, and all he said to me was "love, love, love". At the time I was thinking "what the heck is that comment". But I completely understand now what he meant - and it is simple - LOVE, LOVE, LOVE - spend all of your days and moments filled with love. Say what is in your heart, and love your Dad with all of your heart. It sounds like your Dad is awesome and so was mine - one of the gifts that they give us is the gift of strength and that strength is what got me through losing him. One thing is for sure, it is never the same without them, but it does get easier and the memories will fill your heart to carry you through the really tough times.
I have another set of tickets to hell myself - now my Stepmummy has been diagnosed with CC - as incredible as that seems - a husband and wife with the same rare cancer. She is who helped carry me through the grief of losing Dad. I can't even imagine losing her....take good care of yourself and remember to Love, Love, Love.
Thank you all for taking the time to reply. Lainy and Eli: I read everything to my Stepmum and she sends her thanks as well. This is all so helpful to her so that she can have some great guidelines as to what to expect. She is one amazing lady - her strength, courage and good humour are awesome! She has a lot of pre-op this week so she will be busy. I'll be heading down there on the 19th, with surgery the 21st. Will keep you posted. God bless and thank you again! Sheri
Hi Lainy - now I'm laughing! I'm like you - just tell me. I had a preventive mastectomy 7 1/2 years ago with reconstruction. My husband said "it's gonna hurt", my plastic surgeon said "it's gonna hurt like hell" but the women that I spoke to that had gone thru it never said it was going to hurt. OH MY GOD - it hurt like you can't imagine - and I have a pretty high pain tolerance. I thought it would be like my hysterectomy where I only took tylenol and ibuprofen. i think if someone had said "we are going to be ripping your pectoral muscles off of your ribs, lifting them and then shoving an expander on each side, which will make the muscles running to your back roar, scream and spasm ALOT" I might have been smarter and taken regular pain meds. I finally found myself in the garage in a puddle of tears when I came to the conclusion that I needed stronger meds... if they had only told me. Sounds like the same incision Teddy had was the type my Dad had for his palliative surgery. It was like a big upside down smiley face. This is great the way you have explained it, because my Stepmum is on the hard-headed side (I get that from her) and when I read it from you it's not like me trying to lecture her - it's coming from someone with experience - not the just kid bugging her. Oh, by the way, my name is Sheri. My husband and I are Jeepers. Our rock crawler is Duzrock, our truck is Duzdirt (cause I play in the dirt alot), our jeep hauler is Duzjeep which left us with our Cherokee that Duzalot! So there is my formal introduction and real identity!
P.S. One of the wonderful things I got from my Dad was his incredible sense of optimism. I must say right now it is waning a bit - you are helping to me to pick it up - Thank you!
Hi Lainy - Please, please jump in at all times! Thank you so much for your reply. At first I was worried about telling my Stepmum what this entailed coming from actual experience, but she was so glad to get the information. I will read her your reply and Chloraseptic will be put on the list. My baby brother called last night and when I answered he said "hello Duzalot". He's been spying! Yay! I asked him how he knew it was me and he said "doesn't take alot to figure out - you're from Az, Dad had CC and now Stepmum". I thought that was kindof funny! But he and his wife are now reading the posts - which is answering a lot of their questions. Now back to our patient -this is great information - I'm glad to know that Teddy didn't lose any weight. What was his recovery down-time once he got home? Also, I've read a little bit about this being done with a laprascope? Is that even possible? Stepmum meant to ask the doc, but hasn't yet. If done with an open incision, is it large or are there multpiple incisions? Oh the things we think of in the middle of the night....also, I hope you don't mind me asking, but you had also had a rare stomach cancer, but not CC? Thank you, Lainy - I appreciate you being here to answer my questions and calm down some of my fears.
Hi Eli: Thanks for checking in - I really appreciate it. I was looking at other posts and saw yours regarding your wife's oncology appointment and making decisions. I hope everything went well. Rest well and good night. Will check back over the weekend.
Hi Eli: You have mentioned nutrition after surgery. Can you give me some of your knoweldge about what to do and what works? Also wondering how long recovery might be - I know everyone is different - but just an idea. Thank you!
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!
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.
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!
Uggghhh...waiting...waiting...just in need of a vent session. We are still waiting for a surgery date. The radiology report was supposed to be sent to the surgeon at Cedars Monday. They didn't send it until yesterday. Doctor has clinic days and surgery days. The surgical nurse asked her when she wanted to schedule surgery and of course she said "right away". Then the nurse said the doctor will be out the rest of this week...she'll have to get back to her....still haven't heard anything. This is agonizing and my stepmum is getting discouraged not knowing why the nurse won't even return her calls. I'm sure there is a good reason, but I'm at a loss for words of encouragement to keep her up, and I want her to have good days before this surgery because I know it will a big surgery. She actually has never had any serious illnesses, other than a bout with pnuemonia years ago and a couple of broken bones. She doesn't know how to be a patient, which is wonderful in one way, and hard in another. Unfortunately, she is learning quickly. I absolutely hate this.
Thank you to everyone who replied. Lainy - I live near Flagstaff - not too far from you! It's a strange twist to be happy to be here to have resources, caring, words of wisdom and back up. I wish none of us would have to meet this way...but as I like to say "in the meantime" here we are! My stepmummy is very happy to have me on the Forum. She likes me to be her "assistant" and ask the questions and then read them to her. Will keep you all posted - am hoping and praying that her surgery will be very soon.
Hi - I am new to this Forum but not new to CC. My dad passed away from this dreadful disease 4 1/2 years ago. As crazy as this seems to all of us in my family, my wonderful stepmum has also just been diagnosed with CC. Dad was stage 4 when diagnosed. He did have palliative surgery as his tumor was quite large. Did chemo and a few clinical trials - he fought hard for 1 year and 5 months. My stepmum presented completely different than Dad - she jaundiced, etc. and ended up in the ER and then a couple of hospital stays. They couldn't find anything with the ERCP, MRI, Cat scans, but still pressed on. She has an HMO (which is a nightmare in and of itself) but was fortunate enough to be allowed to go to Cedars Sinai where her amazing gastroenterologist kept at it, because he was certain of the CC diagnosis. She was going to be scheduled for a resection, but her cat scan showed problems with her lungs. Then a pet scan. Then a needle biopsy - and by the grace of God it came back benign. So this Monday we are hoping that they will be again scheduling her for a resection. Her CA19-9 numbers are in the normal range, so we are hoping that this is very early. At this point we do not have a stage. My big questions is: has anyone heard of a husband and wife both being diagnosed with CC? Dad was diagnosed in June of 2006 so there is 6 1/2 year time span between their diagnosis. We have been thinking of everything they might have had in common and there are only two things: massive use of weed killers such as Round Up or Ground Clear with it getting on both of them. Also, they both have undergone major dental work at Loma Linda - such as cutting into the jawbone, bridges, etc. The dental work is most likely far-fetched, but I am wondering seriously about the chemical exposure. While we understand that there might not be any reason, it just is, it's one of those things that runs amuck in the thoughts while trying to process this again. Thank you for any thoughts you can give me - they will be appreciated it. This is truly a monster - still reeling over losing my Dad - I can't even imagine losing my stepmum - she is my best friend.