Gallbladder Cancer - 2013 (Any Stage)

Hello everyone-

I'm not sure if there will be a 2014 group, but I thought I'd start here.

My mom was diagnosed with stage IV gallbladder cancer on Dec 13th.  Like most it seems, she went in for what was supposed to be a simple gallbladder removal.  The surgeon said it was inoperable.  It spread to the liver and the small intestine.  She came home on Dec 23rd and we have a follow-up appt with the surgeon on Jan 6th. (getting sick over the holidays stinks because doctors go on vacation and everything gets put on hold)  We should get the pathology report then right?  She had a short visit from the oncologist while she was in the hospital (I left the room for just 10 min at 8pm...who knew he would stop by then?!) and he was less than tactful or hopeful with my mom. 

My mom is not is the best health.  She is 66 y/o, has diabetes, high blood pressure and is obese. Ironically, she was planning to have weightloss surgery in February.  While her health may complicate things, it should not keep her from fighting this.  I feel like the doctors have just written her off though.  One doctor (again, there were many unfamiliar one due to doctors filling in over the holiday time) asked her what nursing facility she wanted to go to when she was discharged.  He assumed her mobility and health required it when it does not. Another doctor said "Gallbladder cancer? I've never met anyone with gallbladder cancer before.  That's rare. Your vitals look good.  Someone else will be in tomorrow. Have a merry Christmas."  Really!?

Anyway, I am beginning my education on the subject.  My girlfriend was diaganosed with stage II colon cancer Dec 2012 so I have some idea of the process that may take place, but I realized all cases and cancers are vastly different. 

I appreciate reading all of the posts here.  It is the first time I felt hope.  I am pulled between being realistic (at least that's what the medical community calls it) and hopeful (believing she could fight this and even win).  My mom is feeling the same way.  I don't want her to give up, but I realize it is her decision ultimately.  I just want to arm myself with as much information as possible.

What questions should I ask the surgeon on Monday?  What is involved in a second opinion?  Do we meet with the oncologist right away or wait like they want us to for another couple of weeks?  If the oncologist has little experience with gallbladder cancer can we just go find one that does?

We are researching and will be starting an Alkaline diet soon.  Has anyone had any experience with it?  I figure it can't hurt.  It will help her high blood pressure and diabetes at the very least and at best make an environment in which the cancer has to be the one to fight for survival.

A long post I know.  I'm confused and the shock has not worn off yet.  Any information is helpful.

Thank you,

RV

rvhere said:

Mom dianosed stage IV

Hello everyone-

I'm not sure if there will be a 2014 group, but I thought I'd start here.

My mom was diagnosed with stage IV gallbladder cancer on Dec 13th.  Like most it seems, she went in for what was supposed to be a simple gallbladder removal.  The surgeon said it was inoperable.  It spread to the liver and the small intestine.  She came home on Dec 23rd and we have a follow-up appt with the surgeon on Jan 6th. (getting sick over the holidays stinks because doctors go on vacation and everything gets put on hold)  We should get the pathology report then right?  She had a short visit from the oncologist while she was in the hospital (I left the room for just 10 min at 8pm...who knew he would stop by then?!) and he was less than tactful or hopeful with my mom. 

My mom is not is the best health.  She is 66 y/o, has diabetes, high blood pressure and is obese. Ironically, she was planning to have weightloss surgery in February.  While her health may complicate things, it should not keep her from fighting this.  I feel like the doctors have just written her off though.  One doctor (again, there were many unfamiliar one due to doctors filling in over the holiday time) asked her what nursing facility she wanted to go to when she was discharged.  He assumed her mobility and health required it when it does not. Another doctor said "Gallbladder cancer? I've never met anyone with gallbladder cancer before.  That's rare. Your vitals look good.  Someone else will be in tomorrow. Have a merry Christmas."  Really!?

Anyway, I am beginning my education on the subject.  My girlfriend was diaganosed with stage II colon cancer Dec 2012 so I have some idea of the process that may take place, but I realized all cases and cancers are vastly different. 

I appreciate reading all of the posts here.  It is the first time I felt hope.  I am pulled between being realistic (at least that's what the medical community calls it) and hopeful (believing she could fight this and even win).  My mom is feeling the same way.  I don't want her to give up, but I realize it is her decision ultimately.  I just want to arm myself with as much information as possible.

What questions should I ask the surgeon on Monday?  What is involved in a second opinion?  Do we meet with the oncologist right away or wait like they want us to for another couple of weeks?  If the oncologist has little experience with gallbladder cancer can we just go find one that does?

We are researching and will be starting an Alkaline diet soon.  Has anyone had any experience with it?  I figure it can't hurt.  It will help her high blood pressure and diabetes at the very least and at best make an environment in which the cancer has to be the one to fight for survival.

A long post I know.  I'm confused and the shock has not worn off yet.  Any information is helpful.

 

Thank you,

RV

Hello, this is curriewalla.  I have become familiar with GBC through a relative's experience with this cancer. 

My thoughts, after reading your post:

• you might want to explore whether your mother could become eligible for surgery in the future by having chemotherapy now to shrink the tumors.  See the posts of Lily50.  That's what she did, however, it wasn't easy.  She had to find doctors who would treat her.
• if the tumors can be shrunk with chemo, then it's important to realize that the surgery is physically challenging for the patient.  Your mother would want medical advice about how her diabetes and weight impacts her ability to handle the surgery and recovery period.  The liver can regenerate but the small intestine cannot.
• gallbladder cancer is not common.  Many doctors have not seen a case of this cancer or have only seen it in women age 75+.  You might want to look for a relatively "high volume" treatment center for biliary tract cancers.  But high volume might mean counting the experience over a period of years.
• GBC is usually an aggressive cancer, so you want to move as fast as possible. 
• my relative had "conventional" treatment and didn't follow any particular diet. I cannot comment on diet stuff, except to note that my relative didn't take supplements (vitamins, yogurts) during chemo unless approved by his doctors.  Supplements can impact the effectiveness of chemo.
• many doctors could use specialist training in how to convey difficult information to patients/family, yet still help the patient/family feel supported.  My relative experienced some insensitivity from doctors, but kept his end-goal in mind - getting the best treatment for him.  So he handled things as diplomatically as possible. 
• be alert to medical professioals not having up to date or correct information before them e.g. once they didn't have my relative's correct weight which was needed for chemo calculations, another time a doctor hadn't realized that certain test results were ready so my relative quickly straightened that out
• you can help you mom by taking notes, helping her keep copies of various test results (e.g. keep a binder or folder), making lists of questions to ask during doctors appointments.

Take care, curriewalla

LucyDoodle said:

Erin's Dad

Hi Erin,

That is exciting news about your Dad! My husband had surgery after 20 months of chemo, the surgeon took a bit of persuading given that he had already tried to remove the cancer when Steve was first diagnosed but the spread was too much. Between us and oncologist we wore him down  though it took about three months and a PET scan before he agreed to have another look.

Steve had a roux-en-y hepaticojejunostomy (they took part of his liver, biles ducts and gallbladder and then fashioned new bile ducts) they also remove the lymp nodes in the area   The surgery takes a while to recover from and they may well want to do more chemo afterwards.

So keep badgering the surgeon, if you read Lilly's story you will hear much the same!

Debbie

 

 

Hello,

Thanks for your reply!

We are heading back to the surgeon next week. It looks like she will do some exploratory surgery and pergaps remove some things while she is in there.

His latest scan showed no cancer!

Erin

I am new to this blog!. I had my Gallbladder removed because of gallstones on 12/31/2013 via laparostomy. Found cancer stage T2 that was upgraded to T3 after second more invasive surgery on January 14, 2014 were they removed part on the liver adjacent to the Gallbladder bed were they found a tumor, a linph node that had cancer and 4 more that were clean. I live in LA and I am now in Houston at MD Anderson to get a second opinion. I just had a TC scan, new biopsyies of the tissue removed durig my second surgery and it looks like the CANCER MIGHT STILL BE in the resection margin in the liver and one linph node. I was given here a regimen of Cisplatin and Gemcitabine evry 2 weeks. I intend to do the Chemo in Los angeles. Any suggestions? Very difficult to find an oncologist that specializes in Gallbladder cancer. The Doctors told me that this cancer is very difficult to cure, almost impossible and  statistically veru low  of survival which.  I am lost, scared, Please help. I am going back to LA this Saturday and need to start CHEMO ASAP

Hi all,

I've been a lurker on this thread since January when my mum was unfortunately diagnosed with this horrible cancer. This started back in December when she was rushed to hospital with severe stomach cramps, the docs thought it was gallstones and following open surgery they did manage to remove these along with the gallbladder. Unfortunately the Gallbladder had burst and when her lab results came back this was found to be at stage 2/3 gallbladder cancer (moderately differentiated). If it had not burst we would be looking at a much better prognosis but as it stands they are saying that scans show probable spread to her peritoneum in the form of 'seeding' or spots. Docs have given her 12 months with palliative treatment.

We are based in London in the UK and as such are relying on the NHS (our national healthcare provider) to provide mum's care. They are incredibly conservative with their approach and everything we are getting from them is telling us to prepare for this horrible outcome. She has now started her regimen of cisplatin and gemcitabin and just finished her first cycle. She will get 3 cycles then a scan and then another 3 if all is going ok.

They are suggesting that if this does not work that we can look at another chemo treatment (possible 5FU I think).

Mum is tolerating the treatment incredibly well, her digestion plays tricks on her sometimes and she has been getting only very mild headaches, but no sickness or tiredness so far

She will not hear of a prognosis and says she wants to take each day as it comes, but for the family it is incredibly hard and we feel like we are on a rollercoaster. We asked at her first oncology appointment about an possible operation and spoke about a peritoneal strip or debulking but the oncologist flat out refused to discuss it and said it was not an option given the amount of stress it would place on mum's body and the fact it had spread. We went for a 2nd opinion and the suggestion waslargely the same although this one said that if the spots could be eliminated then some surgeons may look at it. But again, he was very discouraging of operations. Mum is 56, has never smoked or drank alcohol and is generally in good shape. She is however moribly obese and I wonder if this may be adding to their refusal to look at an operation.

You guys in the US seem to have much more amenable doctors than us in the UK. The impression I have got is that the whole system with this cancer is so risk averse. They will offer the standard chemo and then send you on your way I think they just want to keep costs to a minimum as the survival stats are so bad, but mum is not a number and she is fighting this with everything she has.

Rich24uk said:

'Inoperable' GB Cancer with Mets to Peritoneum

Hi all,

I've been a lurker on this thread since January when my mum was unfortunately diagnosed with this horrible cancer. This started back in December when she was rushed to hospital with severe stomach cramps, the docs thought it was gallstones and following open surgery they did manage to remove these along with the gallbladder. Unfortunately the Gallbladder had burst and when her lab results came back this was found to be at stage 2/3 gallbladder cancer (moderately differentiated). If it had not burst we would be looking at a much better prognosis but as it stands they are saying that scans show probable spread to her peritoneum in the form of 'seeding' or spots. Docs have given her 12 months with palliative treatment.

We are based in London in the UK and as such are relying on the NHS (our national healthcare provider) to provide mum's care. They are incredibly conservative with their approach and everything we are getting from them is telling us to prepare for this horrible outcome. She has now started her regimen of cisplatin and gemcitabin and just finished her first cycle. She will get 3 cycles then a scan and then another 3 if all is going ok.

They are suggesting that if this does not work that we can look at another chemo treatment (possible 5FU I think).

Mum is tolerating the treatment incredibly well, her digestion plays tricks on her sometimes and she has been getting only very mild headaches, but no sickness or tiredness so far

She will not hear of a prognosis and says she wants to take each day as it comes, but for the family it is incredibly hard and we feel like we are on a rollercoaster. We asked at her first oncology appointment about an possible operation and spoke about a peritoneal strip or debulking but the oncologist flat out refused to discuss it and said it was not an option given the amount of stress it would place on mum's body and the fact it had spread. We went for a 2nd opinion and the suggestion waslargely the same although this one said that if the spots could be eliminated then some surgeons may look at it. But again, he was very discouraging of operations. Mum is 56, has never smoked or drank alcohol and is generally in good shape. She is however moribly obese and I wonder if this may be adding to their refusal to look at an operation.

You guys in the US seem to have much more amenable doctors than us in the UK. The impression I have got is that the whole system with this cancer is so risk averse. They will offer the standard chemo and then send you on your way I think they just want to keep costs to a minimum as the survival stats are so bad, but mum is not a number and she is fighting this with everything she has.

So very sorry to hear of your mom's diagnosis.  Unfortunately, we are all on this board for a very similar reason.  My mom was diagnosed with gallbladder cancer in September 2008.  It was found at a routine surgery for gallstones.  It was staged at stage 2.  She had a liver resection and the removal of some lymph nodes which all tested negative for any spread.  We were grateful.

She never did chemo at that time, just went every 3 months for CT scans to make sure everything was okay.  Well, it was until Novembe 2011 when she was diagnosed with peritoneal cancer.  Yes, one little cancer cell had remained hidden somewhere and had reproduced itself enough to detect in the omentum.  She too was not a candidate for any debulking or stripping surgeries due to her advanced age other blood clotting issues.  

During the intial days of her diagnosis, she remained (and still remains) focused on today.  This line of thinking (althoguh counter intuitive for those of us watching from the outside) has made all the difference in her mental state.  My mom was told flat out that the prognosis for this cancer is poor and that she was looking at 7-12 months.  Here we are 2.5 years later and everyday has been a blessing.  Mom continues to go in and out of chemo, taking a break every once in awhile to recoup her strength.  She just started her 22nd treatment yesterday.  She went through the gemcitibine and cisplatin, took it down to just gemcitibine and now is on gemcitibine and oxalyplatin.

She is very realistic about the situation, having made her wishes abundantly clear to all of us BUT we don't dwell on it on a daily basis.  She will be discouraged at times and that's when it's so important to be positive for her.  

I am sad to have to share your rollercoaster ride, but it is what we do as the children who take care of our parents.  Reach deep when you have to, in order to get through and stay positive for her.  There have been a few lessons I've learned: Surround yourself with family and good friends who will be there for YOU when you need it. Don't be afraid to ask for help (a lesson that has been very difficult for me and I'm still not very good at) and BE the advocate for your mom when she can't deal with doctors and hospitals.  Don't be afraid to question your doctors - and if you don't like their answer or approach - find another one (I've fired 3 already). 

The hardest thing of all but perhaps the most important: Don't lose your sense of humor.  Even in your darkest hours when you let your mind go to those bad places - find something that will bring a smile to your face.

Hope you find some answers and I pray she keeps on fighting!!!!

J-

Lovingmymom said:

Mom with Gallbladder cancer with spread to peritoneum

So very sorry to hear of your mom's diagnosis.  Unfortunately, we are all on this board for a very similar reason.  My mom was diagnosed with gallbladder cancer in September 2008.  It was found at a routine surgery for gallstones.  It was staged at stage 2.  She had a liver resection and the removal of some lymph nodes which all tested negative for any spread.  We were grateful.

She never did chemo at that time, just went every 3 months for CT scans to make sure everything was okay.  Well, it was until Novembe 2011 when she was diagnosed with peritoneal cancer.  Yes, one little cancer cell had remained hidden somewhere and had reproduced itself enough to detect in the omentum.  She too was not a candidate for any debulking or stripping surgeries due to her advanced age other blood clotting issues.  

During the intial days of her diagnosis, she remained (and still remains) focused on today.  This line of thinking (althoguh counter intuitive for those of us watching from the outside) has made all the difference in her mental state.  My mom was told flat out that the prognosis for this cancer is poor and that she was looking at 7-12 months.  Here we are 2.5 years later and everyday has been a blessing.  Mom continues to go in and out of chemo, taking a break every once in awhile to recoup her strength.  She just started her 22nd treatment yesterday.  She went through the gemcitibine and cisplatin, took it down to just gemcitibine and now is on gemcitibine and oxalyplatin.

She is very realistic about the situation, having made her wishes abundantly clear to all of us BUT we don't dwell on it on a daily basis.  She will be discouraged at times and that's when it's so important to be positive for her.  

I am sad to have to share your rollercoaster ride, but it is what we do as the children who take care of our parents.  Reach deep when you have to, in order to get through and stay positive for her.  There have been a few lessons I've learned: Surround yourself with family and good friends who will be there for YOU when you need it. Don't be afraid to ask for help (a lesson that has been very difficult for me and I'm still not very good at) and BE the advocate for your mom when she can't deal with doctors and hospitals.  Don't be afraid to question your doctors - and if you don't like their answer or approach - find another one (I've fired 3 already). 

The hardest thing of all but perhaps the most important: Don't lose your sense of humor.  Even in your darkest hours when you let your mind go to those bad places - find something that will bring a smile to your face.

Hope you find some answers and I pray she keeps on fighting!!!!

J-

 

 

 

Many thanks for your reply, it does give hope to hear of others going through similar that are also fighting this. 

What I don't really understand in mum's case is that she is actually quite fit and relatively young, yet the oncologists we saw (both of them) suggested that it would not really add anything to her prognosis to go in and operate, one said we may find a surgeon that would IF they could eliminate the spots on her peritoneum completely but he did not seem hopeful.

When you say your mom is on her 22nd treatment, is that her 22nd cycle of chemo? In the UK we are only offered 12 cycles of chemo (cisplatin and gemcitibine), this can be followed by another 12 of oxplatin + 5fu if mom does not respond to the first line. Mom started her chemo back in February so by the end of summer she will have completed her treatment and that is a scary thought for me, it's almost as if they will put her on the garbage dump after that. Trials here for GB cancer are few and far between, in fact there is not much of anything that we would be able to sign her up for specifically related to her condition (just a few phase 1 trails for advanced cancers).

I've got a good support circle within the family, my sister and partner are both there for me and I know between us we can support her through this. The hardest thing for me is that because this is a cancer that is rare, there does not seem to be much information out there and trying to find a surgeon/oncologist that is prepared to actively treat it is virtually impossible (in the UK at least). We've been to to cancer centers here one, The Christie is supposed to be one of the best in Europe, yet the oncologist could not offer anything more than what she is on.

Mom herself is doing well, she is very positive and is tolerating her chemo great, no major side effects, just a headache or two and a little bit sleepy sometimes. She also gets some constipation but we think that is related to the cocktail of anti sickness drugs that she takes. We are praying that her interim scan in 6 weeks shows progress so that they can continue on her current regimen.

Ja59 said:

Hi Lovingmymom

Sorry to hear, that your mom's cancer came back. But how did doctors know that it is cancer? Did they make biopsy? Or she had high cancer markers? May be it is not cancer at all and she is having unnecessary treatment and CT scans. Doctors make mistakes all the time. 

There was no mistaking this.  They did a biopsy of the omentum and it was the exact same cells as the gallbladder cancer.  Her cancer markers actually remained very low and stable for the two years before they started to creep up.  I actually thank the doctor who was treating her for finding this sooooooo early.  He insisted on CT scans every 3 months for the first 3 years and then the plan was to go every 6 months for the last 2 years until she could say she was cancer free for 5 years.  Her cancer was caught at the end of year 3.  If we hadn't had that schedule, it would have been another half a year before she was ever diagnosed and we all know "the earlier, the better". Docs didn't make a mistake, they provided conservative care which has given her a great quality of life. 

Erinp said:

My Dad

Hi Everyone,

i have monitored this thread to a while now and thought I'd share my dad's story.

He was diagnosed about 4 months ago. He was experiencing pain, vomiting etc and went off to the doctor.

A CT scan revealled a mass which was then biopsied and localised, advanced gall bladder cancer was the diagnosis. He contracted pancreatitis from the biospy, which really took a huge blow- extreme weightloss and illness.

The cancer was said to be incurable and he was referred to an oncologist. He started Gemzar/ Cisplatin regime and after 9 weeks the 8 by 5 cm tumor was immeasurable. 

This is lead him to be referred back to the surgeon whobas suggested continue chemo and perhaps discuss surgery after this next round. She said there is now a question as to whether this cancer is curable, which is exciting. 

She he also said how invasive the surgery (which would be gb and liver resection) is. What are others experiences with this surgery? 

Id love to hear any stories, particularly those in Australia, similar or of some help to Dad's? 

 

Erin

Hi Erin,

I was just wondering what is the latest on your dad.  My dad (age 66) has GB cancer Stage IV, which as been deemed inoperable/incurable, diagnosed in Nov 2013.  He's done 3 months of Gemzar & Cisplatin and his 1st scans were pretty good - no spread and slight decrease in size of tumors.  We were excited, hoping he'd be able to keep going with the regimen with continued success, but he has not been feeling well at all lately.  He's been running a fever off and on, no appetite, he had a very low hemoglobin and needed a blood transfusion, and now he has a blood clot in his leg that is causing his foot to be swollen and painful and he can't walk.  He's very discouraged and it's hard not to blame him, as it's been one thing after another going wrong for him.  He really has barely left the house in almost a month.  I feel so sad for him and don't know how to help him.   It's encouraging to hear a story like your dad's where the chemo has been so successful.  We've been told dad's cancer is incurable and all he can do is chemo indefinitely, as long as he's alive, so it's hard to look past that grim prognosis, but we're still hoping for a miracle.  

Hope your dad is still doing well.

Best,

Carly

Rich24uk said:

Update on Mum

We had an interim CT scan yesterday to see if the chemo treatment was working to date and have been shocked by the results. No sign of cancerous growths anywhere in the body and the spots that had been identified in the peritoneum did no show up! The oncologist has said that these may have been inflammation from mum's original condition (perforated GB) and not cancer as was suspected (although she definitely did have a cancerous GB which was removed at the time of the operation). He also said that it may be that the chemo has worked so effectively that it has eliminated everything that was visible although my understanding of this particular treatment is that the cancer is not usually sensitive enough to be completely removed.

In any case, it's the best possible outcome that we could have hoped for, mum will continue with another 3 months of chemo which she is tolerating very well and if that scan comes back clear, then we can have a break with follow up scans as required.

The oncologist has maintained that surgery is not an option because the spread (if it did spread) would have gone to the peritoneum which would affect too many organs anyway. My mum is also not keen on any surgery (she has been through so much with the complications that happened during the original gallstones illness).

I quizzed him on future treatments also (all the while I was getting angry looks from mum and her partner, but they don't understand that I need to know every scenario so that I can plan and be prepared for what may yet happen). He says the next line would be folfri for up to 6 months, and then after that possibly some other 3rd line treatment at the discretion of the senior oncologist. So I am happier now that we may have a road map to keep mum going for long enough to enjoy seeing her grandchildren grow up

Mum was originally told that she would probably not see out a year with this disease based on the statistics from various trials, and without tempting fate this prognosis has now dramatically changed and we are hopeful that we will have her for a good few years yet, perhaps long enough for some other cancer research breakthrough. Never give up hope, and take everying that the onc tells you with a pinch of salt!

Rich,

That truly is the best news you could have gotten!!  "No evidence of disese", "Stable tumors" or "Not Progressing" are the best words you can hear with this particular cancer. You're right, don't ever give up hope!!!  My mom has enjoyed years more than the initial prognosis would give her and her quality of life is excellent.  My mom enjoys her grandchildren, holidays and all the warm weather.  She doesn't accomplish as much as she would like to in any given day (long term effects of chemo) but she is LIVING, and we are grateful.  

Ask your questions, learn all you can and God Bless you all!

Be well,

Jessica