Introduction
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Yes Iowa girl the best decision you did make was finding this website. I was like you and I’am not going to say I have been cancer free…I was diagnosed in Oct 09 with intrahepatic cc…met a wonderful man on this website who’s mother had the same type of CC and he very unselfiously recommended a Dr to me who was able to operate on me…God willing I’am fast forwarding 4 and a half years and yes i have had 3 surgeries but I’m here loving my family and life …You need to do what is right for you and you will know what it is…trust in yourself you know what is best for you!
NancyChrisna,
I just wanted to say hello and I understand the feelings you are going through right now. I’m a cc patient myself and recently diagnosed. After surgery at Mayo to remove a little over half of my left liver node, I’m still waiting on two of the laproscopic incisions to heal so that I can start chemo. I chose to do chemo even with a “huge” 2.2 cm clean margin, no evidence of mets, 6 out of 6 clean hilar lymph nodes and no nural or venous invasion found at pathology. (This cancer can spread not only through lymph nodes but also along nerve pathways and blood pathways). Why, when there’s no evidence at this time, that chemo does anything to keep the cancer from returning after curative intent surgery? My Mayo oncologist said very simply, without me asking, that if it were he in my place, he’d do the chemo and if it was his mother or sister, he’d be urging them to do it also. He has no skin in the game…..that is….he is not going to be the oncologist administering the chemo (home oncologist will do that), so this was his honest opinion. That, along with the 50% odds he gave us for the CC to come back, the decision was made. It wasn’t an easy decision…but now that I’ve made it, I want to get on with it. I don’t want this stuff to come back and then say, “Why didn’t I do chemo?” I’ve seen odds of this coming back ranging from 50% to 75% (the latter being the statistic shown more for intrahepatic, which is the kind I have), but my oncologist said 50%, so since I like the better number I’m going with it.
As to the statistics concerning surgery. I am a diabetic and obese (I hate that word), so along with the usual numbers about morbidity, etc, the weight and diabetes were factored in also. Still, I was told that the percentages for complications for each of the issues concerning surgery and recovery were about 3-5% at worst, nothing like the numbers you were told. But, every surgery is different. Mine was pretty straight forward. Still, I would echo the advice of others on this discussion board…..get a 2nd and 3rd, or even more opinions.
As to chemo before having surgery. My surgeon mentioned that they were starting to look at doing chemo before surgery more often, but she didn’t feel that I needed to do that and she was prepared to go ahead the next day with surgery if I was. If I WAS?…..oh goodness, I told her that was why I was THERE. If my tumor had been still larger, (it was 5.3 cm or so), then maybe she would have said chemo first, because I’ve read a lot of posts here about people doing chemo to try to shrink the tumor or tumor load before surgery, in some cases, to even make the surgery possible.
Coming to the CC Foundation was the best thing I could have done for myself. At first, I just gleaned the data/facts, …..the stories often made me cry…the statistics made me cry…..when someone said something nice it made me cry. Okay….yes, I do wear my heart on my sleeve and have been known to cry even at commercials. But, when I finally posted my own story and had some responses, I was made welcome and realized that there were people who “get it” and when they tell you that what you’re feeling is something most everyone here has felt at one time or another, it gives you something to cling to. Hang in there…..and keep pushing until you get some answers that make sense.
Julie T.
For Mark the post-op was a little longer than most partially because it took him three days to just be able to reposition himself in bed. His shoulders are full of arthritis and his surgery aggravated them. Once he got moving though things went well. According to him the pain wasn’t too bad. He quit using the pain button on day 4 and they switched him to oral. I think by 4 weeks post-op he was only using pain pills at night just as he was before surgery. There does not seem to be any permanent nerve damage although he has a couple of areas that appear to be numb on his belly but it’s not bothersome.
He does have some issues with constipation (aggravation of prior problem) however we really haven’t had things “normal” since surgery. Since then he’s either been on chemo or antibiotics or both. And that makes the constipation worse for him. He’s on a pretty significant dose of meds to help with the constipation but as he says it’s a small price to pay for what went on.
I did ask him if he would do it all over again knowing what he knows now and said Yes without hesitation.
As a nurse I don’t see any problems with this surgery that I wouldn’t see with any abdominal surgeries. He had some delayed wound healing in a couple of spots but that too is normal.Hope this helps.
KrisVThank you all for explaining things!! I will use the SEARCH mode to get more information.
I like to find out about post surgery pain. Is there expected nerve damage?? Long term pain? Digestion issues (Mike seems to have more digestion issues since his laparotomy)? As always, your kind responses help us to get a clearer picture of what is ahead…
Thank you,
Chrisna.Chrisna –
I can answer one question. There are internal stents that are used if needed to open a blockage in the bile system to allow it to drain properly. They can be metal or plastic. They are usually placed with an ERCP and at times they do clog so they need to be cleaned out or replaced, not usually daily though. Our GI doc said anywhere from every couple of weeks to several months. We opted not to do an internal stent due to the risk of infection that goes with them as Mark was already battling blood infections on a regular basis.
Externally you can have a bile drain which is what my husband had. He a PTBD placed – Percutaneous TransBiliary Drain. This placed a thin tube into the bile ducts upstream of the blockage. This allowed bile to drain to an external bag that needed to be emptied a couple times a day (normally). We weren’t normal and had complications when first placed but after surgery it worked fine and they pulled it a month after surgery. The idea of this is to take the pressure off the liver to allow it to work better. His bilirubin dropped from 13 to 8 in the 36 hours after placement.
If you go up to the search tab under the headings you can enter anything you want to search for and by going to advanced search you can narrow it down some. You could type en anything and read what comes up. It’s usually a lot but sometimes there are buried gems in there. You can also search by names too. If someone sounds very similar to your friend’s case then you can type in their name and read their story.
Hope this helps.KrisV
Dear Chrisna, first the good news. We DO have a survivor who had his surgery here in Phoenix with a Dr. Koep and Bob is I believe in his 15th year!!! We have a few who are around 10 years in survival ship. The best promise for a cure is surgery but CC has a mind of it’s own and we just don’t ever know. It is truly a monster riding a roller coaster. Caretakers and patients do their best will they let go of the worst and live one day at a time. My husband had a Whipple surgery and clear margins and 5 ONCS said no to chemo or radiation. It returned 3 years later and he did have radiation then in order to have Cyber Knife. C.K. bought him 2 very good years and CC returned again. Actually it came 3 X to the same place. We, enjoyed each day to the fullest we talked and talked and were always together and when the time came we were ready. Well, as ready as one can be. I totally believe attitude, hope and love got Teddy through those 5 years. I like to say one needs to be realistically optimistic. 2nd and 3rd opinions are extremely important. Odds of surviving without intervention such as chemo or surgery I believe would give no one much of a chance. I believe that surgery is always internal and as for the stents the plastic ones need changing about every 2 – 3 months. Simple procedure. I have not heard of GCMAF? A lot of hospitals have a Board but it is important too to know you have a TEAM! Mayo in Rochester is an excellent and the reason everyone hopes for surgery is that it is the best way to go for a cure. That’s why we get so excited at the word surgery. Once a decision is made and either chemo or surgery is decided on, your fright will turn to fight! You never know how strong you are until “strong” is the only choice you have!
Thank you all for your kind responses!!!
I have sooo many questions…please help if you can.
1. Is there anybody on the forum who did not do surgery or chemo although offered?
2. Is there anyone out here who if outliving the dismal odds they gave us?
3. Is surgery only internal or is there an external duct? I read that some needed “their (stents) ducts” cleaned daily??
Has anyone tried GcMAF???
Thank you all for sharing
ChrisnaChrisna –
My husband too had surgery…almost a year ago now. We were told that we were the lucky ones and has been said, it’s the only chance at a cure. There is a lot of debate about to do or not to do adjuvant chemo after the surgery. My husband chose not only chemo for 6 months but also 25 doses of radiation along with 5FU chemo. Our Onc felt it was the best shot at a long term remission or “cure”.
Right now his quality of life is not all that great due to the effects of the chemoradiation but prior to that he was working full-time and you would not know he was or had been sick. And once he recovers from this recent round of stuff I suspect the same will be true.
Surgery is rough. His was 14 hours and he was 12 days in the hospital and he didn’t return to work until September last year but he was working full time and feeling fine.
And just because surgery is recommended, it doesn’t have to be done. I am sure there are those who chose not to, just as some don’t do chemo or any other treatment.
Good luck with the 2nd opinion.KrisV
Hi Chrisna, here is what I had done and I am guessing others will chime in as well. I am almost 3 months post op and aside from adjuvant chemo and its side effects my quality of life is great. I still have days that are more tough than others but overall I am doing really well. Life style changes, not too many. Though I have always been a healthy person aside from this whole cancer thing.
The hospital I attend is a teaching hospital and really the only option for me in my state. There they do have a a multidisciplinary team that they refer to as the tumor review board that involves various groups of people. They review cases, my scans, labes, makes collaborative decisions and have discussions. From my understanding you do not need a board but from what I have experienced and have read over the last year, it seems encouraged to have numerous people involved in your case. So everything I have been though over the past year, yes, has gone through the board. Here is a rundown of the procedures I had done. Extended right hepatectomy with incontinuity resection of the caudate lobe, with resection of intrahepatic left and intra and extrahepatic main bile duct congenital resection of the left hepatic vein with venoplasty, cholecystectomy (removed gallbladder), porta hepatis lymph adenectomy, reconstruction of 3 intrahepatic bile ducts with hepaticojejunostomies with a Roux-en-Y hepaticojejunostomy and a Roux-en-Y jejunojejunostomy. So they took out and rerouted things quite a bit It took close to 14 hours I believe. (I did copy and paste this from my chart so feel free to ask my any questions about it or you can also email me) Blessings to you.
PorterAll-Star,
Thank you for answering my post.
If you are willing please tell me more about the surgery. What did they take out, how long did it take? Any life style changes, quality of life?
I take it in America there is a Board??? And they decide?? So if we go to Mayo…we need a Board???Any additional information would be appreciated.
Thank you so much.
ChrisnaAs far as my understanding surgery is the only chance of a cure from this disease. Many, too many are not able to be have surgery and are typically diagnosed later staged and deemed in operable. I originally was termed in operable. After chemo and 6 months later I was told that the board approved me for surgery. My initial reaction was …jumping for joy. Then once reality set it was I was pretty nervous and anxious. I do know that as far as reoccurance it is a high percentage but other than that for me the outcome has been great. They were able to remove everything and reach clean margins and my last scan showed no evidence of disease. So I consider my surgery a huge success
Update:
We are waiting for another opinion from Mayo in Rochester, based on scans and reports. We have no idea how long this will take.
On the other side we have been told that the disease is stable at the moment, as there is essentially no change when viewing scans.
The Doctors are advocating chemo followed by surgery. My question is:
Why is everyone pursuing surgery?? The outcome seems rather dismal to me with horrible odds. Has everyone had significant success with surgery?
Thank you for sharing,
ChrisnaDear Lainy,
Thank you so much for your reply….You are right, we will get another opinion. Please know though, the surgeon we consulted is in Princess Margret. I hear he is the best. Maybe we do not understand things right. We have another consult with Doctor MacGulvray (whose fellow surgeon gave us the dismal odds), and hopefully we will know more after the 17th.
Thank you again,
ChrisnaDear Chrisna, I am usually not blunt but I would never let a Surgeon operate on me unless he is sure something is there. 2nd opinion is the best idea. I took my own advise today and got a 2nd opinion on a tumor, not CC. So far best thing I have done even if it means another Scan. MIKE’S DECISIONS ARE VERY GOOD. I don’t get it, if the ONC cannot see anything forget the surgery why the chemo???? I am not sure how far it is for you but Princess Margaret is a good place for CC treatment.
Thank you all so very much for the support and good wishes.
We just got back from Winnipeg where Mike’s stent was changed (4th stent).
Mike got sick after the stent change (vomit/chills) and we spend eleven hours in emergency. Things are improving though and we are now back home. Another round of Doctor appointments are coming up next week.
We are still struggling with making decisions. The Onc said that surgery will not be done unless Mike has chemo first. Given that they can not confirm a tumour, and they can not see any mets…how would they know if the chemo is working??????What tests should be done???
Mike will have to make a decision soon, because they will not deal with the hernia issue until the big surgery is either on or off.
We will follow the advise here and get another opinion asap.
Here is the big, big question: Is surgery a cure?? Or is the Surgeon right that 70-80% recurrence is the norm??
We are struggling to understand the benefits of chemo (not knowing if its working) and the benefits of surgery (if he survives it in the first place) when it just comes back right away….
What else is there to do???
We can put a man on the moon, but we cant help the people we love.
Thank you for letting me vent.
Chrisna
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