Topic: IIIntrahepatic post surgery...My story and welcome to it

I was diagnosed in late Feb 2014 after a month of looking for a primary cancer for a 4.3 cm adenocarcinoma in my outer left liver lobe.  I was then told that since everything else had been ruled out, it had to be bile duct cancer (it was the only thing that lit up on the PET scan at the time) after going through two CT scans, endometrial biopsy and an upper GI (thank goodness I'd had up to date mammogram and pap smear, plus a colonoscopy only 6 months prior).  My oncologist at the time was certain of her diagnosis and that it was operable.  I'd already made an appointment at Mayo/Rochester (we live three hours away in good weather) and had requested the pathology slides be sent to Rochester to be reread.  On Feb 27th, we drove through a ground blizzard to get to Rochester for my 7 a.m. first stop at the clinic.  After a 3 hour meeting ending at noon with an oncology fellow and an oncologist, we were told that nodules in my lungs could be mesothelioma or a sarcoma and there was something binding my uterus and bladder together at some point.  They were still looking for a primary cancer someplace other than bile duct cancer.  So, they had their radiologists reread the CT and PET scans from home that  I had hand carried with me and had their pathology dept redo the additional biopsy material sent to them and reread the slides.  The original PET scan done at home that lit up only the tumor in the liver had apparently been done after waiting too long and the radioactive material had decayed too much for a really good scan.  We were set up with a 4 p.m. apt with a surgeon to discuss my case and at that time, we were told that the radiologists and pathologists all agreed that this was bile duct cancer.  The surgeon apparently took one look at everything, said she'd seen this before and was sure it was bile duct cancer.  So, upon meeting with her, she explained what she proposed to do and asked if we were prepared to stay for surgery or if we had to go home first and come back.  We'd gone with the intention of surgery as soon as they could do it, so I was scheduled for surgery the next day, Feb 28, 2014.  After a 4 hour surgery to remove what was by then a 5 cm tumor and a quarter inch satellite tumor, and 6 lymph nodes, the surgeon was able to get a 2.2 cm clean margin.  Pathology later indicated the lymph nodes had no signs of cancer.  BTW....my surgeon, Dr. Kaye Reid Lombardo, only operates on pancreases and livers and specializes further in doing these resections as much laproscopically as possible, which is how she did mine.  I had an unremarkable recovery and was sent home the morning of March 3, just two full days of recovery after the surgery.  It was a rough ride home over Minnesota snow and ice packed highways and I was very sore by the time we arrived at home.   I'm recovering from the surgery well, though several of the 5 laproscopic sites have had some issues.  Just saw my GP yesterday and she said they were doing okay...just a long healing process.  The main incision , about 3 inches long, (done because of my weight) has been healing the best of all of them probably because they used a vacumn pump on it after surgery to aide in drawing out draining fluid and healing.  On Aprill 8th, I will have a followup CT scan at Mayo as well as followup appts with the surgeon and oncologists to see how I'm recovering and what comes next.  Chemo has been mentioned, but I've also read that for intrahepatic bile duct cancer, often it isn't used.  How do they decide ...how do I decide.
   Let me back up, because I know some will ask how I was diagnosed.  In early 2013, I contracted C-Diff, a bacterial infection of the colon after having taken a strong antibiotic the previous Christmas.  After three rounds of antibiotic, two of which were vancamyacin, it was decided that the C-Diff had to be gone, but I still had the same bowel issues continuing of lighter colored and frequent stools.  I opted to have a colonoscopy in July to check if there was anything there to cause my continuing problems and to take some biopsies of the colon lining to check for any residual C-Diff.  Nothing was found and the biopsies were negative.  I was told to use Citracel because it probably would take a while for the water balance in my colon to normalize.  My little grandson, who I babysat, passed along several upper respiratory infections during the fall, each time going into bad bronchitis for me and one time, probable pneumonia. Things continued until early October, when I caught the last upper resp infection and saw my doctor.  She gave me a lightweight antibiotic (not wanting to risk C-Diff again) and on day 5 of the antibiotic, all the bowel problems stopped...and stayed away for two months, when they suddenly reappeared over about a week's period of time.  I went back to my GP in late Dec, and we reran a C-Diff test which was negative, so again, I was told to use the Citracel.  It didn't fix anything and made me feel bloated.  In later January, the 2 year old grandson gave me another upper respiratory and in 2 days, I was positive I had pneumonia and saw my GP.  After she examined me, she then asked how that "other" problem was doing.  I told her it hadn't gone away and then she suddenly got a serious look on her face and said she wanted me to have a CT scan of my pelvic organs, specifically, the liver, pancreas and gall bladder.  It was done the next day and the rest is history.  Oh, and the same antibiotic that caused the symptoms to go away in October, did the same thing on day 5 of the January round of the antibiotic.  It has not come back since.  All the doctors I spoke to, including the ones at Mayo, have no idea what the connection is to the antibiotic and the symptoms stopping two different times and none of them think that it is related to the bile duct cancer.  It well may be that it is totally unrelated to the bile duct cancer, ...a red herring so to speak.  So, the liver tumor was found quite by accident when I got pneumonia and saw my doctor, which led to the bowel issue discussion, which led to my doctor getting suddenly getting a gut feeling that she should order the scan. 
    I was told by both my local oncologist and the Mayo surgeon before surgery, that I had a chance for a cure from bile duct cancer...and if it happens, I probably need to contribute a big amount to our grandson's college fund.  smile   That said, both comments about a cure were based on finding one tumor and not two.  I've read that having multiple tumors reduces survivability.  I realize that I am so fortunate to have this cancer found as early as it was (pathology staging is T2b) and that it was operable.  But, then I see that it has a nasty habit of coming back, esp intrahepatic and there's nothing much to offer for adjunct therapy that really kills off even stray cells that may have migrated.  Right now, emotionally, I have a weird sense that this is all very surreal....almost as it was a dream and didn't happen.  I feel even disconnected to the incisions, which should be a huge reminder.  I'm no longer filled with outward anxiety of hand shaking, inability to write or type or talk  as I was during all the testing.  I need to understand this cancer and what's available for treatment as I've always taken an active role in my healthcare, but researching this disease ends up usually with me crying a lot.  I cry the most when people show kindnesses to me and have the most difficult times when I'm around friends and family and they simply ask how I'm doing.  I've always been an emotional person and cry even during schmaltzy commercials, but this is always with me and comes out when I least want it to.  My friends and family understand me crying to a point, but now that the surgery is over, I think they want me to move on and be positive all the time.    I've explained about the recurrence rate of this aggressive cancer because I don't think they really get it.   Recently, I've felt like maybe I do have a chance of being one of the few who beat this cancer, and am trying to take this one step at a time, enjoying time with my family and friends.   I've kept from posting on here until now, because I've felt guilty about feeling so dismal when I was at least operable when the majority are not, if not even having a potential cure.  It's like survivor's guilt, except I have no guarantee that I will beat this. 
   I apologize for the long post, but I type as fast as I talk or think and I'm a talking kind of person.  smile

Just for today, I can get through anything.  "Never let fear decide your fate."  (from the band, Awoination.)

Re: IIIntrahepatic post surgery...My story and welcome to it

Iowagirl,

You're not alone in your emotions. I had a successful resection at Mayo for Perihilar CC and can't help think about and fear recurrence every day now. My surgery was not laparoscopic and I'm still not comfortable after 10 weeks of recovery. I've found a local therapist who is also a nurse and she's great to talk to. Everyone seems to expect me to forget it and live on as if it's all behind me. I sure hope I prove the stats wrong and end up on the good but small side but only time will tell. I've chosen to not do adjuvant chemo at this point for several reasons, primarily the lack of evidence that it helps and the preponderance of evidence that the long term effects are not good. Who were the docs you saw at at Mayo if you don't mind sharing?

Continued good luck to you!  -Matt

Re: IIIntrahepatic post surgery...My story and welcome to it

Hi Iowagirl and God bless you. I hope you find peace and pray that you are going to get through this. My Boyfriend has intra hepatic cc and had successful resection in January. He started chemo on March 17th and we can only hope and pray that it was the right decision and that this damn disease is gone for good. I have spent hours and hours researching this cancer and i can understand why you find yourself in tears, it is very scary.   
You are very lucky as my boyfrind is as well that you were able to have surgery with clear margins. They say it s the only chance for cure. Most find this cancer when it is so far along. God bless you and i pray that you will be one of the success stories and you like my boyfrend will be an inspiration to others.
Lots of hugs,
Lorna

4 (edited by Iowagirl Fri, 28 Mar 2014 23:24:10)

Re: IIIntrahepatic post surgery...My story and welcome to it

Matt,  Thank you for sharing some of your experience with me....especially the emotional stuff.  It's driving me nuts!  We have different types of bile duct cancer, but the mental part of this seems to be the same.  My surgeon at Mayo Rochester, MN, was Dr. Kaye Reid Lombardo, who was excellent.  Because I went up to Mayo as a patient with basically cancer of unknown primary (but highly suspected bile duct cancer) and the Mayo oncologists hadn't received the results of my endometrial biopsy and ovary scans, they decided that I should see a gynecological oncologist instead of a GI oncologist.  If I asked for them to take the new information into account, it would take another 1-2 days for them to look at the info and then call me back again to set up an appointment, which could have made my appointment even further out into the future.  As it was, I HAD an appointment (in my hand so to speak) for a week away and in my mind, I was nearly crazy with anxiety and just wanted to get there.  I was assured by Mayo that whoever I saw, would consult with GI oncologists very closely.  My main appointment was with an internist/fellow in oncology, Dr. Domingo, who was there under a senior oncologist by the name of Aminah Jatoi.  We did see Dr. Jatoi for part of the time, but fairly short.  Until you asked, I never had thought to look up what her actual oncology speciality is....if she has one.  She is not a gynecology oncologist after all.   She is a Professor on Oncology at Mayo and is considered to be one of the top 25% of oncologists in the US if I understand correctly what I read.  She has a number of oncology specialties, among which is that she is a leading expert in lung cancer.  I felt very comfortable with her and in the short time we talked with her, I felt instantly more at ease.  She looked at my information and test results and quietly came to her conclusions, asked me a few more questions and then told me what her thoughts were.   I think the reason that we didn't ask for her credentials was that things moved so fast toward surgery...which is why I went there in the first place, that it just never came up.  I also see she is an expert in adjunct therapy/chemo.  She agreed with our local oncologist that the primary cancer was probably bile duct cancer and not an unknown primary.  I had/still have a number of uncalcified nodules in my lungs which she quickly said that she felt were not metastisis but instead were the result of pneumonia which I had just recovered from as well as probably at least one other pneumonia last year.  The scars wouldn't have had time to calcify yet.  Matt, I really appreciate you replying to my first post here.  You are the very first person who seems to understand exactly what I'm feeling right now.  I'm considering finding a therapist to talk with.....heck...at this point...my out of pocket is more than met...why not.  I'm glad to hear that is helping you.  What were the long term effects of the chemo you mentioned?  I've been trying to look into this, but since I have no idea what they have in mind, researching it is a shot in the dark.  I think that because I had a small satellite tumor along with the main tumor, my survivability goes down some, and intrahepatic tends to come back more frequently from what I've read.  What the heck....all bile duct cancer is bad stuff.  I, too, am hoping to be in the 60-70% chance group in which it doesn't return.    Really....I am soooo  glad to hear from you though.  The emotional and anxiety aspect of this and reactions of people around me just has me feeling out of control.  I am quite certain that most everyone who has been diagnosed with cancer of any kind has these feelings to some degree, but when you get a diagnosis of bile duct cancer....or pancreatic cancer....some of the more aggressive and resistant cancers and you hear the numbers, it's more depressing.

Just for today, I can get through anything.  "Never let fear decide your fate."  (from the band, Awoination.)

Re: IIIntrahepatic post surgery...My story and welcome to it

Lorna,  Thank you for your reply.  I'm sorry to hear that your boyfriend also has this awful cancer.  As you know, he and I have the same subtype of bile duct cancer.  May I ask, how he decided to go ahead with chemo and what type/s he is being given?  Did he have one lone tumor or more than one as I did and did he have any lymph node involvement?....if you wouldn't mind sharing with me.  I go back and forth on the idea of doing chemo, but it was already mentioned before I left Mayo on March 3, so I know it is going to come up...or at least I expect it to.  I know that the extra small tumor lessens my chances some, but everything else looked good.  I'm still trying to figure out from surgical reports if the main arteries were involved or not as that might encourage spread to other organs via the blood stream.  I know just enough to be "dangerous."  smile  I've been asked by specialists if I'm a doctor because I speak their language and come prepared as best I can, but I have to laugh....NOT HARDLY!  I HATED biology in school and only educate myself about medical stuff because we've had so many awful experiences in the past, and in some cases, actually having doctors bold face lie to us.  You really do have to take control of your own medical health and treatments and not leave it up to a doctor to spoon feed you everything.  When they go home at night, few doctors sit at their computers or medical books, researching what might REALLY be wrong with you.    I really would like to know more about the decision making process your boyfriend went through to decide to do chemo.  He is very lucky to have you researching for and with him.  It's rough for me...because I'm usually the "tough" one in the family who keeps it all together when there's a crisis...especially medical ones.  But, my husband has been super supportive and our marriage of almost 39 years (I'm almost 62) is stronger than ever.  We've been through a lot together over the years.  We have a wonderful son and daughter-in-law and little almost three year old grandson.  They have been fabulous through this.  But, I don't want to lean too heavily on them right now....nor just sit and cry all the time in front of them ...which would make them feel worse.  I try to tell people that I'm being realistic, but hopeful........but most people don't seem to get that.  I think there's so much hype about the strides in other cancers, that they think all cancer is close to curable.  That's just my theory....maybe it's really not the case....maybe it's just that they don't want to deal with the negative potential.  Well, I'm thinking "out loud" again.  Thanks for being my therapist tonight.....and oh yeah....I'm crying.  I can't seem to even write to someone with it setting off another crying jag.  When does this part end?

Just for today, I can get through anything.  "Never let fear decide your fate."  (from the band, Awoination.)

Re: IIIntrahepatic post surgery...My story and welcome to it

Hello Iowa girl and welcome to our extraordinary family. First of all I want to give a BIG YIPPEE on your surgery, which is our favorite word in the world! Actually the way you are feeling mentally is 'normal'. #1 It could be from surgery or #2 it could still be the effect of even finding out what you have. There is absolutely nothing wrong with asking your ONC for a little help. I had never taken an anti depressant until December and all of a sudden I could not stop crying. My Gastro guy put me on Lexapro 10mg (very mild) to help take the edge off and it has worked for me fantastically with no side effects.
You do have a good attitude and attitude is everything, sometimes it just needs a little tweaking. Notice I didn't say twerking, I said tweaking. LOL
Isn't your little munchkin (Grandson) just about the best RX ever?  BTW we have a saying around here and that is we try to remain realistically optimistic.
Wishing you the very best and please do keep us posted as we are here, you are not alone.

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: IIIntrahepatic post surgery...My story and welcome to it

Dear Iowagirl,

Welcome to the forum and thank you for sharing your experience.  I can't comment on the guilt that you feel as it was my sister that had CC.  I fail to see though how anyone can move on emotionally so quickly from a disease like this, regardless of  whether it was diagnosed early, less severe or been told your cured.  Use this forum to get the support you need and to vent your thoughts. Someone can always relate to where you are and help to get you through and no one will ever judge you for what you write.

X

Clare

In the stars now . . . .

Re: IIIntrahepatic post surgery...My story and welcome to it

Hi iowagirl, My boyfriend only had the one tumor and there was no arteries involved and the tumor was easily removed. It was only attached to the gall bladder but the gallbladder was not infected by the cancer. He did however have 1 lymph node affected so i think that along with the high recurrence was the deciding factor. It's hard because you are already feeling beat up fom surgery and then you get even more beat up with chemo. He must have said over and over " i don't understand why i need chemo if the doctors say I am now "cancer free".  The doctors told him if he were their son or relative that they would highly suggest him taking the chemo. My bf like you has always been overly educated when it comes to the medical field. When he or a family member is sick he will go full force on getting the best treatment and asking questions and getting the treatment needed. In this case, i think it was just too much of a shock and quite frankly too scary so i took on the role of searching the internet in the hopes of educatung myself. I must say that this site has been a tremendous source of information. It is real people living this and i am learning from their experiences.
The chemo he is on is gemcitabine 3 weeks on and 1 week off, they also wanted to start him on Xoleda pill form  2 times a day one week on and 1 week off but due to the high stress level of my bf regarding the side effects they decided to wait after the 1 cycle of gem to see how he does before he starts the xoleda. His first treatment was 3/17 and other than some fatigue he did well. His white blood and platelets were too low on the folowing week so they did not give him chemo. Monday he will go back and hopefully his numbers have gone up but the only thing is he now has a cold. In the 15 years we have been together i do not recall him ever having a old. He is juicing 2 times a day and sticking to a high protein diet and i beleve that has helped him because although he has a cold he feels great otherwise.
Good luck to you and may God be with you to help you make the right decision. The fact remains that with or wihout the chemo this nasty cancer can make an appearance. You have to do what you feel is best for you.
BTW..he also takes a half xanax every now and then to take the edge off. The stress and anxiety alone can do you in.
Let e know what you decide.
Lorna

Re: IIIntrahepatic post surgery...My story and welcome to it

Dear EVERYBODY....Oh...THANK YOU for your welcome and reception.  I appreciate the replies so much and the answers to my questions.

  I reread the report from Mayo and it mentioned chemoradiotherapy as a possible PRE-surgery possibility, but dependent upon what the surgeon said.  The surgeon told us that they were finding that sometimes it was advantageous to do it, but that in my case, she was ready to go ahead with surgery if I was.   I believe that the reasoning for doing therapy before surgery was to shrink an otherwise large tumor before trying to remove it.  My tumor, at 5 cm was still something she felt he could do laproscopically, which is her preferred method of surgery whenever she can do it...even stretching the limits.  Because of my weight causing some laproscopic difficulties, I had one extra 3 inch long incision besides the 5 other laproscopic small incisions, and they used a wound vac on that after surgery to help it heal better and not get infected.  I happen to also be an insulin dependent type II diabetic, which could complicate healing. 

Interestingly enough, I have discovered that having a spontaneous blood sugar low event can be a sign of liver cancer.  I just happened to have had one a week before the tumor was discovered.  My blood sugar went down to 43
...very scary....and I mentioned it to my GP when I saw her the next week.  However, I'd been actively dieting for a year and a half, and had lost about 50 pounds at that point, so we chaulked it up to me being less insulin resistant due to weight loss...that is....an improvement in my type II diabetes.   Weight loss was not a symptom of my cancer....I worked and paid dearly for each and every pound I lost.  I even gained 8 pounds over last Christmas...and had to actively work even harder to lose it again, which I did. 

I think I forgot to mention in my introduction post, that all of my blood tests were totally normal....the usual CBC with liver function tests, as well as the blood marker tests for various cancers.  There was absolutely NO sign that there was a then 4.3 cm tumor in my liver other than actually seeing it on a CT scan.  My liver function tests in the hospital right after surgery were slightly elevated from surgery itself and just a week or so ago, when my local GP had a blood panel run, everything looked back into the normal range or just on the edge.  I'm slightly anemic from the surgery, so have been eating red meat, fortified oatmeal with raising and just added baby spinach for munching...all good iron sources.  My appetite has come back as the swelling from surgery has lessened.  I had gained about 18 pounds of fluid weight from surgery and that suddenly started dropping off about 2 weeks post op. 

I'm going to take the weekend OFF from research...the sun is finally shining here in Iowa and we are promised temps in the 50s...whoohoo....try to find something fun to do with my wonderful husband, kids and grandson.  YES, that little guy IS the best medicine.  When all this first started, one day, he came up to me and put his little arm around my back and just patted my back.  It was obvious he knew something was really wrong.  He's always shown signs of empathy...even as a 1+ year old.   I've babysat him 5 days a week and then last year at this time for two days a week since he was 2 months old, so we have a pretty solid relationship with him...both my husband and I do.  He wants to have a Papa-Juwee day again again, but I can't lift more than 10 pounds for another week or so.  And, if he shows any signs of being sick....the kids don't bring him over.  Of course, he's almost three...and in day care...so he catches everything there.  It's been hard not having him here with us....thank goodness for Facetime on the iPad.    But, he's healthy again for now, so we've enjoyed our time again...and he IS truly the BEST MEDICINE.  He cracks us up so much with some of the things he says....and the laughter is once again creeping back into our home.   Oh....and I'm driving again...short trips....and yesterday, I went for some shopping therapy.  I bought an outrageously expensive throw for our bedroom.  For me...that's being optimistic about the future!!!  When the going gets tough, the tough go shopping!!!!! <grin>

Just for today, I can get through anything.  "Never let fear decide your fate."  (from the band, Awoination.)

Re: IIIntrahepatic post surgery...My story and welcome to it

Iowagirl,

This is what the Onc @ Mayo recommended as I met with him while in bed recovering from surgery:

"We reviewed with Mr. Reidy that we are hopeful that this tumor was completely resected and node negative. Despite this, I think the recurrence risks are still significant. Given the rarity of the tumor, there are no prospective randomized trials regarding the value of adjuvant therapy, but retrospective analyses would suggest there is likely some value to this.

In general, I have recommended six months of adjuvant gemcitabine as a very reasonable starting point for discussion. This is the most active single
agent in this disease and does have proven adjuvant benefit in pancreatic ductal adenocarcinoma. This is often well-tolerated with only a few severe side effects such as TTP and pulmonary fibrosis.

In metastatic disease, the addition of cisplatin to gemcitabine improves response rates and progression free survival and overall survival. He understands it is unclear whether that means it would be of further adjuvant benefit, but if the physician and patient wanted to err on the side of being more aggressive, this is also quite reasonable.

One could consider gemcitabine and cisplatin in the day 1, day 8, fairly low dose platinum schedule as outlined in the New England Journal of Medicine phase III trial in advanced disease and perhaps attempt four to six cycles of this.

I would certainly back off early with the cisplatin given the unknown benefits if he ran into early troubles with renal toxicity, neurotoxicity, ototoxicity, or other toxicities."

Iowagirl wrote:

Matt, I really appreciate you replying to my first post here.  You are the very first person who seems to understand exactly what I'm feeling right now.  I'm considering finding a therapist to talk with.....heck...at this point...my out of pocket is more than met...why not.  I'm glad to hear that is helping you.  What were the long term effects of the chemo you mentioned?  I've been trying to look into this, but since I have no idea what they have in mind, researching it is a shot in the dark.  I think that because I had a small satellite tumor along with the main tumor, my survivability goes down some, and intrahepatic tends to come back more frequently from what I've read.  What the heck....all bile duct cancer is bad stuff.  I, too, am hoping to be in the 60-70% chance group in which it doesn't return.    Really....I am soooo  glad to hear from you though.  The emotional and anxiety aspect of this and reactions of people around me just has me feeling out of control.  I am quite certain that most everyone who has been diagnosed with cancer of any kind has these feelings to some degree, but when you get a diagnosis of bile duct cancer....or pancreatic cancer....some of the more aggressive and resistant cancers and you hear the numbers, it's more depressing.

Re: IIIntrahepatic post surgery...My story and welcome to it

I am farther down the road than you are, so I have fewer options.  I was diagnosed only after it had spread to my lungs and lymph nodes.  Onc hit me between the eyes with "Unless you start chemo now, you will be dead in six months."  Not the best bedside manner, but it got my attention.  Started chemo in July 2013 with carboplatin one week of three and gemcitabine two out of three.  Lately continuing with gemcitabine only two weeks out of three to give my kidneys some relief.  Sounds like they've backed off like they suggested for Matt.  Will see what CT scan shows in a few weeks.

This site and the people on it are the best thing in the world.  People I see every day are truly supportive but they don't understand what is going through my mind.  And, unless someone is in our position or is a supporter of one of us, they never will.  As far as tears go, sometimes you can get by with a few kleenex tissues but other times require a roll of Bounty towels.

I know what you mean by not leaning too heavily on people.  You don't want to wear down your support organization.  That's where we can help.  There are so many here to share with.  The following is based on a line from a novel by R. A. Salvatore: "Where there is darkness, friends joining hands bring light."  There are many combinations of words that can be substituted for "darkness" and "light".  Pick the ones that work best for you.

Fighting with dignity, not desperation.

Live, Laugh, Love

Re: IIIntrahepatic post surgery...My story and welcome to it

Dukenuken,

I am somewhat concerned about my lungs.  I had non calcified nodules in my lungs, which were too small to biopsy.  Mayo was concerned about them initially, but since I'd recently had pneumonia in Jan and probably at least once in 2013, it was decided that most of them looked like inflammatory problems left by an infection/pneumonia.  My followup CT scan at Mayo is just for pelvis and abdomen, so it seems that they aren't concerned with the lungs any longer...but with all the initial fuss, I'm not getting more concerned.  Paranoia is setting in as I get closer to that CT scan on April 8th as well.  Thanks for the info on your chemo regimine.  It seems that basically, most people start out on Gemzar and a platinum of some kind.  The platinum one's possible side effects really has me scared.  I am diabetic and had a heart attack back in 2002.  I know though, that Mayo is most likely going to strongly suggest chemo because of finding a small, satellite tumor next to the big one during surgery.  I know the choice will be mine to make, whether to do chemo or not, but it doesn't look like I really have a choice, when I realistically look at the facts of that 2nd tumor.  Thanks again for replying.  This all has helped me to have some idea of what to expect....knowledge is power!!   Julie

Just for today, I can get through anything.  "Never let fear decide your fate."  (from the band, Awoination.)

Re: IIIntrahepatic post surgery...My story and welcome to it

Dear Julie, WELCOME TO OUR 'SCANXIETY' CLUB, which happens to most of us before a scan. I am wishing you the best results next week. And you are so right 'KNOWLEDGE' is our most powerful tool!

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: IIIntrahepatic post surgery...My story and welcome to it

Follow up at Mayo is over.  NO NEW TUMORS!  I realize this is just 5 and a half weeks post surgery after removing the two tumors,  so it isn't much time for more to pop up yet, but it was still good to hear. I will be doing chemo of Gemzar and cisplatin after two incisions that popped stitches are healed.  The incision issue isn't as bad as my GP had thought, though I'm glad she did a culture...still waiting to hear about that, but am taking an antibiotic just in case.  The surgeon says that the unhealed area is superficial and she expects it to heal in a week to week and a half.  I don't know if a little extra time would make a difference in effectiveness, but I'd love to be able to celebrate my birthday on April 21 and Easter without dealing with the effects of chemo.  I will defer to my oncologist, but they said that they'd like me to start it soon.  I really didn't an answer about metronomic fractionated chemo...other than it isn't tested on CC.  My oncologist was concerned that one place in particular that uses it , is doing so without having good study data to prove that it works.  However, he actually said the same for Gemzar and Cisplatin...that there are no studies showing that they work to keep tumors from forming again, so I"m still confused on that subject.  The franctionated dosing chemo seems to make sense to me...and I'm not really sure that both methods aren't a big gamble....with doing nothing also a gamble. 
Had a couple real cries today.....one due to extreme anxiety in advance of an IV being placed for the CT Scan (I have awful times at home with upwards of 9 attempts before they gain access, yet each time I have one inserted at Mayo, they do it the first try....and today was no exception).  But, other cries were during the oncology consult and later, during supper with my husband.  He is my rock,love of my life and husband of almost 39 years. He comforts me and gives me hope, reminding me that I could just as well be in the good percentages of the survival from this crappy disease.  We've been through a lot over our 39 years together, and this surely could do in the strongest message, but he is by my side through every step of this.  They don't make husbands much better than he is....and I consider myself fortunate that he loves me.

Just for today, I can get through anything.  "Never let fear decide your fate."  (from the band, Awoination.)

Re: IIIntrahepatic post surgery...My story and welcome to it

Well congrats on the scan and no new tumors. That is wonderful news. From my understanding you are correct that there is very little or no studies in regards to the effectiveness of adjuvant chemo when it comes to cc. I too had a large resection and my path report came back good and with clean margins. There is no visible evidence of disease and my personal choice and reason was my teams suggested it after consulting with multiple other teams and the Recommended it in case there are any microscopic cells we cant see.Blessings to you on your continued journey and healing process and happy to hear you have a wonderful supportive partner. wink hugs.
Porter

Hope, love, strength...2013 and for the years to come, Porter.

Re: IIIntrahepatic post surgery...My story and welcome to it

YEA! Julia, way to go! Your crying the other day could have been pent up emotion from the Scan report and well, heck you have been through a lot! A cry here and there is normal but if you find yourself crying daily tell your ONC as you might just need a little something to take the edge off for awhile. So, you are April 21st? I am April 20th!~

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: IIIntrahepatic post surgery...My story and welcome to it

Julie,

Such good news.  I am so happy for you.  No matter what you decide, enjoy your birthday and Easter celebrations.  Take care.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: IIIntrahepatic post surgery...My story and welcome to it

I think your news is fabulous!  And, I hope you will find the Gemara/cisplatin isnt so bad (I was fortunate to not have a lot of side effects on it). You have plenty of reasons to celebrate that birthday!


That weekend is also my anniversary, so I'll join you in celebrating a milestone (mine is finishing chemo/radiation, hoping to have shrunk my tumor enough for surgery or killed it dead).

Cheers!

Lisa

Impatient patient.

Re: IIIntrahepatic post surgery...My story and welcome to it

Congratulations on the clean scan. No matter where you in this process knowing that they can't see anything is wonderful. And having a cry when the anxiety is lifted is perfectly normal....I have more that once.

As for the chemo there are two camps with it....do and don't. Part of the reason for that as our oncologist has explained is that there is not set in place treatment for cc yet. Unlike breast cancer that has a set recommendations for treatment, cc does not. Our ONC says there's so many different paths docs take and he says that it is good since that way someone may hit on the magic bullet that will increase survival rates. My husband had clean margins on the second try, one positive node and no distant mets so we could have chosen either way. He wanted to do it all so that he can say he did everything he could.

As far as waiting until after Easter and other important stuff. They aren't going to want to do anything until your wounds heal and they will need to get a port placed since it sounds like you are a hard IV start so I would bet you will get your wait.

Good luck,
KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.