45 yr old women w gallbladder cancer ,now what?

Hi there, I live in new zealand and am hoping to find anyone else through this site that has or knows someone who has gallbladder cancer. I went in to have gall stones removed in April 2009, left hospital to recover from srgery and that was that I thought! I was being sent letters from the hjospital from about june to go in for follow up check, which i kept changing appoitments cause i was bsy with our new cafe business and wasnt interested in going into hospital clinic.. I then got an appointment to have a CT scan in July, so i went to that and didnt really think to ask why i was having it ntil i was there, so i tried to look at the paper when the nrse was out of the room and jst as she picked it up I saw the word cancer, bt i just thought o thats not mine then!  A few weeks later I got 2 appointments in the mail one from my normal srgeon and another from someone i hadnt heard of ?? I then received a ph call from the nurse at my doctors saying the srgeon really needed to see me and could i please keep the appointments that they had sent me! So of   course by now I was getting a bit sspicious, and only told my mum the day before the appointment about seeing the word cancer on the form ..So went and was told I had GB cancer, tumor had gone through wall and was in the lymph node they had happened to remove, another week before the net appointment in which i was told would need liver resection and lymph nodes removed from abdominal area then follow up chemo 6 weeks after that!! Have had my operation on the 17th august 09 as in intensive care for the first night bt have recovered fairly well sice then but am at home recovering still no energy, sore from large wound and the usual... I have appointment tomorrow  morning for results from surgery, but would you beleive the reslts came in the mail last thrsday so I already know I have 2 mestatic carcinomas in the portal canal lymph nodes, nothing in the liver which is good i hope, so have to wait for more info tomorrow... anyway better stop now or will be a novel for you too read...any similar stories wold be appreciated and/or australian or nz patients exsperience would be great! I have 4 children, 19.18.16.14 yrs and am single mum, finding it the most difficult to watch them and my sister, mm and best friends and how they are coping! thanks look forward to any replies..

On 9/6/2009 Carolynnz wrote:

Hi there, I live in new zealand and am hoping to find anyone else through this site that has or knows someone who has gallbladder cancer. I went in to have gall stones removed in April 2009, left hospital to recover from srgery and that was that I thought! I was being sent letters from the hjospital from about june to go in for follow up check, which i kept changing appoitments cause i was bsy with our new cafe business and wasnt interested in going into hospital clinic.. I then got an appointment to have a CT scan in July, so i went to that and didnt really think to ask why i was having it ntil i was there, so i tried to look at the paper when the nrse was out of the room and jst as she picked it up I saw the word cancer, bt i just thought o thats not mine then!  A few weeks later I got 2 appointments in the mail one from my normal srgeon and another from someone i hadnt heard of ?? I then received a ph call from the nurse at my doctors saying the srgeon really needed to see me and could i please keep the appointments that they had sent me! So of   course by now I was getting a bit sspicious, and only told my mum the day before the appointment about seeing the word cancer on the form ..So went and was told I had GB cancer, tumor had gone through wall and was in the lymph node they had happened to remove, another week before the net appointment in which i was told would need liver resection and lymph nodes removed from abdominal area then follow up chemo 6 weeks after that!! Have had my operation on the 17th august 09 as in intensive care for the first night bt have recovered fairly well sice then but am at home recovering still no energy, sore from large wound and the usual... I have appointment tomorrow  morning for results from surgery, but would you beleive the reslts came in the mail last thrsday so I already know I have 2 mestatic carcinomas in the portal canal lymph nodes, nothing in the liver which is good i hope, so have to wait for more info tomorrow... anyway better stop now or will be a novel for you too read...any similar stories wold be appreciated and/or australian or nz patients exsperience would be great! I have 4 children, 19.18.16.14 yrs and am single mum, finding it the most difficult to watch them and my sister, mm and best friends and how they are coping! thanks look forward to any replies..

Hi Carolyn. i am a 62-yr old woman in the USA. I was diagnosed with GBC in July 2008. Like you, it was discovered when I had my gallbladder removed for what I thought was only gallstones. This is often how it happens. I am a bit surprised and dismayed that it took so long for you to learn your diagnosis and to be told a more what is going on. It is good you had your second surgery, a liver resection and node dissection. Have they done a CT and/or PET scan? Yes, you WILL need chemo. Possibly radiation, too, depending on the location and the spread of your cancer. This is a rare cancer, so I think it is VERY important that you seek the best and most up-to-date care from a large major cancer center. Ask around, look on the internet. If none is near you, you can arrange it so they can at least review your records and then direct your local doctors to deliver the best treatment. It is also important not to delay. Don't be scared of chemo, Carolyn, the chemo for GBC is not as bad with side effects as some you might be familiar with. I am doing well now, my cancer is in remission, and I get periodic CT scans to keep track. Please let us know how you are doing and what is going on for you. Milly

 

On 9/7/2009 Maudsie wrote:

 

On 9/6/2009 Carolynnz wrote:

Hi there, I live in new zealand and am hoping to find anyone else through this site that has or knows someone who has gallbladder cancer. I went in to have gall stones removed in April 2009, left hospital to recover from srgery and that was that I thought! I was being sent letters from the hjospital from about june to go in for follow up check, which i kept changing appoitments cause i was bsy with our new cafe business and wasnt interested in going into hospital clinic.. I then got an appointment to have a CT scan in July, so i went to that and didnt really think to ask why i was having it ntil i was there, so i tried to look at the paper when the nrse was out of the room and jst as she picked it up I saw the word cancer, bt i just thought o thats not mine then!  A few weeks later I got 2 appointments in the mail one from my normal srgeon and another from someone i hadnt heard of ?? I then received a ph call from the nurse at my doctors saying the srgeon really needed to see me and could i please keep the appointments that they had sent me! So of   course by now I was getting a bit sspicious, and only told my mum the day before the appointment about seeing the word cancer on the form ..So went and was told I had GB cancer, tumor had gone through wall and was in the lymph node they had happened to remove, another week before the net appointment in which i was told would need liver resection and lymph nodes removed from abdominal area then follow up chemo 6 weeks after that!! Have had my operation on the 17th august 09 as in intensive care for the first night bt have recovered fairly well sice then but am at home recovering still no energy, sore from large wound and the usual... I have appointment tomorrow  morning for results from surgery, but would you beleive the reslts came in the mail last thrsday so I already know I have 2 mestatic carcinomas in the portal canal lymph nodes, nothing in the liver which is good i hope, so have to wait for more info tomorrow... anyway better stop now or will be a novel for you too read...any similar stories wold be appreciated and/or australian or nz patients exsperience would be great! I have 4 children, 19.18.16.14 yrs and am single mum, finding it the most difficult to watch them and my sister, mm and best friends and how they are coping! thanks look forward to any replies..

T

Hi Carolyn. i am a 62-yr old woman in the USA. I was diagnosed with GBC in July 2008. Like you, it was discovered when I had my gallbladder removed for what I thought was only gallstones. This is often how it happens. I am a bit surprised and dismayed that it took so long for you to learn your diagnosis and to be told a more what is going on. It is good you had your second surgery, a liver resection and node dissection. Have they done a CT and/or PET scan? Yes, you WILL need chemo. Possibly radiation, too, depending on the location and the spread of your cancer. This is a rare cancer, so I think it is VERY important that you seek the best and most up-to-date care from a large major cancer center. Ask around, look on the internet. If none is near you, you can arrange it so they can at least review your records and then direct your local doctors to deliver the best treatment. It is also important not to delay. Don't be scared of chemo, Carolyn, the chemo for GBC is not as bad with side effects as some you might be familiar with. I am doing well now, my cancer is in remission, and I get periodic CT scans to keep track. Please let us know how you are doing and what is going on for you. Milly

 

 

Hi Milly, thanks so much for your reply! Nice to hear you have similarities and are doing well at this stage.. Yes I have had CT scan and MRI scans done a few weeks before the surgery, no obvious signs of tumours, but as I said they did find it in luymph nodes again in the surgery.  Unfortunetly as far as cancer centres we don't really have them in NZ, it is just part of the major hospital and I am in auckland which is the biggest city in NZ so would not really have other choices here anyway.  But Australia does have more options which not too far from NZ. I have been sent an appointment for the onocologist which hasnt turned up yet! and will be starting the chemo as soon as I have seen him, so at the moment I dont really know the ins and outs of what he has planned yet. My surgeon who I saw the other day is a Liver Cancer specialist and he also said that he has found galbladder cancer resistant to chemo but he said he would have it done if it was him, and also that alot of his patients for liver cancer have found the chemo not too bad! he doesnt have anyone with gallbladder cancer though because as you know it is so rare and alot of people are not diagnozed as early as i have been.. I will let you know what they have decided to do after i see the onocologist.. thanks again Carolyn

Hi again Carolyn, I just got your reply, copied below. It is good that you are in Auckland so that good medical care is convenient. Our cancer centers are usually part of major hospitals, also. It sounds like your liver surgeon is on the right track. As soon as you are somewhat healed from your surgery, however, is usually the time to start chemo. I hope that your appointment with the medical oncologist is soon. You needn't travel to Australia, or any where else......your records can be sent instantly and your chemo care can be directed by them but given to you locally. I will wait to hear from you when you know your next step! Good luck! Milly --- Hi Milly, thanks so much for your reply! Nice to hear you have similarities and are doing well at this stage.. Yes I have had CT scan and MRI scans done a few weeks before the surgery, no obvious signs of tumours, but as I said they did find it in luymph nodes again in the surgery. Unfortunetly as far as cancer centres we don't really have them in NZ, it is just part of the major hospital and I am in auckland which is the biggest city in NZ so would not really have other choices here anyway. But Australia does have more options which not too far from NZ. I have been sent an appointment for the onocologist which hasnt turned up yet! and will be starting the chemo as soon as I have seen him, so at the moment I dont really know the ins and outs of what he has planned yet. My surgeon who I saw the other day is a Liver Cancer specialist and he also said that he has found galbladder cancer resistant to chemo but he said he would have it done if it was him, and also that alot of his patients for liver cancer have found the chemo not too bad! he doesnt have anyone with gallbladder cancer though because as you know it is so rare and alot of people are not diagnozed as early as i have been.. I will let you know what they have decided to do after i see the onocologist.. thanks again Carolyn

My dad was diagnose with GBC last year Nov after he remove his gall blader and CT scan shown the cancer has spread to lymp node only.  There are doctor advise for surgery to remove lymp node and part of liver and some doctor said surgery not required as it is high risk. We have decided not to go for the surgery and start Chemo this year Jan till June.  However, there is no improvement from the chemo, he stop chemo and proceed with radio therapy for 20 cycle.  After 3 weeks of the completion of radio therapy, he still suffer the pain from the lymp node.  The pain occur after the chemo.  From the scan he did before the radio therapy, the lymp node still enlarge.  As he said, after radio therapy, the pain slightly reduce but it still there.  He take very high dose of pain killer and he felt vomitting also.  He cant really eat and no energy to walk and talk.  Do anyone have the same suffer? Do you all have the pain? Beside taking chemo/radio, is there any other way to help him. Doctor told us that radio therapy is his last try.  Now is depend on himself.  How can it be? We knew this is rare cancer, how can it help to reduce his pain.  He suffer the pain badly and he cant really eat....

Worry!!

On 9/13/2009 besthope wrote:

My dad was diagnose with GBC last year Nov after he remove his gall blader and CT scan shown the cancer has spread to lymp node only.  There are doctor advise for surgery to remove lymp node and part of liver and some doctor said surgery not required as it is high risk. We have decided not to go for the surgery and start Chemo this year Jan till June.  However, there is no improvement from the chemo, he stop chemo and proceed with radio therapy for 20 cycle.  After 3 weeks of the completion of radio therapy, he still suffer the pain from the lymp node.  The pain occur after the chemo.  From the scan he did before the radio therapy, the lymp node still enlarge.  As he said, after radio therapy, the pain slightly reduce but it still there.  He take very high dose of pain killer and he felt vomitting also.  He cant really eat and no energy to walk and talk.  Do anyone have the same suffer? Do you all have the pain? Beside taking chemo/radio, is there any other way to help him. Doctor told us that radio therapy is his last try.  Now is depend on himself.  How can it be? We knew this is rare cancer, how can it help to reduce his pain.  He suffer the pain badly and he cant really eat....

Worry!!

Hello "Besthope". I am so sorry to hear about your father. Gallbladder cancer is very hard to treat. Surgery, where possible, is the first and best option. I assume your father's tumor, which seems to be associated with a lymph node, is somehow not removable by surgery due to its location or size. Radiation to that area sometimes helps, but I am not sure if it is by what you say about your father. There are several chemo options, and your doctors should be able to come up with new options for him. It is disturbing that he is in so much pain. I hope that your father's case is being overseen by someone at a major cancer center in your area. If not, you should do some research into facilities in your area that you father can go to, or to have his records sent to them so they can help. Please write again how things are going. milly

Onco here informed us that no other solution.  He has taken all recommended solution.  Now he is weak, he definately cannot go for any surgery.  I am looking for alternative solution that may help.  If anyone come across any alternative solution that was not chemo, radio or surgery, please inform.  We do try various way such as changing diet, drink antioxidant, wheat grass etc.  But now he has stop due to nausea.  Anyone can share..

Do anyone with GBC do suffer the pain too? Its very rare in our country. So, doctor may not have the sufficient experience..

On 9/14/2009 besthope wrote:

Onco here informed us that no other solution.  He has taken all recommended solution.  Now he is weak, he definately cannot go for any surgery.  I am looking for alternative solution that may help.  If anyone come across any alternative solution that was not chemo, radio or surgery, please inform.  We do try various way such as changing diet, drink antioxidant, wheat grass etc.  But now he has stop due to nausea.  Anyone can share..

Do anyone with GBC do suffer the pain too? Its very rare in our country. So, doctor may not have the sufficient experience..

Hello Besthope. I wonder how your father is doing. I am just so sorry he is in so much pain. I hope he has found some relief with new medicines or some alternative therapy. I wish I had some suggestions to make, but I can offer prayers and best wishes. Milly

Hi again, just thought id update you with whats happening! Ive seen onocologist who had decided to start chemo in a couple of weeks to give me a little more time for my surgery recovery.. The drug is fluorouracil 5fu with calcium folinate which apparently helps to have with it.  I will have treatment once per week for 7 months, he said that due to the rarity and lack of studies of gbc he is treating it like pancreatic cancer which they have had sucees with. He said my cancer markers were not too bad so i could wait a couple of weeks to start??? different to what the surgeon said as he wants me to start asap, but anyway im just going with the flow..he said that basically again with little to go on he just doesnt know outcomes et and didnt really have any statisics to go on.  The thing that hasme a bit worried at the moment is I have continued to lose weight quite rapidly since surgery, I try so hard to eat but the smell of anything cooking makes me want to vomit, and the thoguht of a lot of foods give me nausea, I have to stick to the blandest of foods and am tolerating a boiled egg every now again and water crackers with avocado at the moment, it remings me of morning sickness where you just dont know what you will feel like and nausea just comes on for no reason, I'm finding it one of the hardest things to do just to try and eat something every day.. the surgeon told me that there wasnt really a medical reason i should be feeling like this, but the onocologist didnt seem too surprised and has prescribed a drink called ensure plus to try and give me what i need.  As you said the side effects for this treatment arnt too bad, he doesnt think ill lose my hair which has really please me!! but with a metallic taste being one of the more common side effects im a bit worried about being more unable to eat than now!  Does anyone else have this problem with theeating for no apparent reason? I am a chef so dont need ideas on what to eat or anything just how to make myself eat it...

Ok Ill sign off now and look forward to your response, once again i really appreciate having somewhere to talk to other people with gbc, am still hoping someone from my side of the world will log in! thanks to everyone for their replies as well as the private messages which i am trying to endeavor to anser as well!

Carolyn

Carolyn, good the hear from you. Also good that you will be starting chemo soon. Your doctor is correct, due to the rarity of GBC, since there is scarce data on GBC treatments, data from other cancers, like pancreatic, is often used to decide what to use for GBC. So you will hear that those with pancreatic cancer use the same drugs as we do. 5-FU is an old, classic chemo drug that has been used for years for GBC and other cancers. There is now available an oral form of 5-FU that is used a lot for GBC. This medication is called Xeloda (Capecitibine), you take several pills twice a day for however long. A lot of people with GBC have been on Xeloda. Other IV chemo drugs commonly used for GBC include Gemzar (Gemcitibine) and Oxciliplatin. Often a combination of these is used, either at the same time or on alternate week schedules. There are other chemo drugs, these are just the ones I hear the most about. You can ask your oncologist about them. I am not a doctor, only a person with GBC, so please understand that I do not know everything, and I do not know your individual case. I haven't got a reply to your question about not eating and your problem in that regard. If the problem were just nausea, there are good medications for that, like Zofran. It is important to build up your strength, of course, so if you can drink one of these supplement drinks, like Ensure, then that is a good idea. Too bad --here you are a chef, and yet very little food appeals to you! I hope you find someone on your side of the world to link up with, but, meanwhile, I am here, with others, in the USA. keep writing, I will, too. Milly