Mother diagnosed with gallbladder cancer - help needed

I would really appreciate some guidance about my mother's treatment. She began experiencing some pain in her stomach about 2.5 months ago, and (suprisingly, for my mother) went to the doctor pretty quickly. Since her pain was not going away, he gave her a CAT scan. The doctor came back and said the prognosis was cancer, although it could only be proven through a biopsy when her gallbladder was removed. The surgeon, however, seemed much more leery of making a diagnosis. However, when he went in about a week later, he took out her gallbladder (which was cancerous) and two enlarged lymph nodes, one of which was cancerous.  The surgeon did say that surgery is the more effective route, assuming of course, that it has not spread too much to operate.

The oncologist said that he would consider my mother's diagnosis to be a stage 3 or 4; he said what matters more is that it is in the lymph node, which I understand. However, he is not at all a proponent of surgery, because he says that once it is in the lymph node, surgery doesn't help. This may very well be the case, but her CA199 (I think) markers are in the 2000s, and I just wonder if there could be surgery that could be done to eliminate a growth, and then do chemo. However, the oncologist seems adamant that this is worthless right now.

 Unfortunately, my mother is in Florida, and I am in New York. I have urged her to get a second opinion down there, and I have been talking with Sloan-Kettering, but am having big trouble getting all her reports in a timely fashion. I would like to hear what SK has to say, but it's a month wait for an appointment. My mother is DEEPLY opposed to waiting that long, but I wonder if it's more worthwhile to wait (although I realize this is a very aggressive cancer) and have a (perhaps) more effective treatment because these doctors specialize in this type of cancer. She is being very passive about getting a second opinion, and I believe this is related to her fear of waiting. However, I don't want to be stupid about this.

 Any advice anyone can offer? I appreciate any help. It has been about 3 weeks since her surgery. This oncologist wants her to start chemo next week, and said he doesn't think she should wait more than 10 days to start.

 

I have gallbladder cancer. And it moved over to the liver. After my gallbladder was removed I was put on Chemo. Your Mother should start now. They will give her Gemzar which is a very mild form of Chemo. My Ca19-9 has been as high as 32,000. I am being treated at a local hospital which works out great. I am also very close to NYC and Sloan but prefer to be local. I was diagnosed which GB cancer in Dec. 2002. Since I have been doing this for over 6 years I would be glad to share my experience with your mother. If you like feel free to contact me @ --Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--

Thank you so much. Your reply was really helpful, and made me feel better about the local option. I have your email and will probably drop you a line to ask questions as we go along.

 I appreciate your help SO MUCH!

 

On 5/7/2009 BMNEWDAY wrote:

I have gallbladder cancer. And it moved over to the liver. After my gallbladder was removed I was put on Chemo. Your Mother should start now. They will give her Gemzar which is a very mild form of Chemo. My Ca19-9 has been as high as 32,000. I am being treated at a local hospital which works out great. I am also very close to NYC and Sloan but prefer to be local. I was diagnosed which GB cancer in Dec. 2002. Since I have been doing this for over 6 years I would be glad to share my experience with your mother. If you like feel free to contact me @ --Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--

 

My mom was diagnosed Jan 2009 with gallbladder cancer.  It has spread to her lymph nodes and liver. (she is stage 4) Her gallbladder was removed and liver biopsied that's how we found out.  She started with gemcitibine (sorry about spelling).  She became really sick.  She couldn't keep anything down.  She didn't get to finish the chemo.  They did another scan and found out that it did not work. (she had treatment for 2 mo) Her tumors in her liver were larger and there are more of them.  She is in the hospital now on iv fluids.  We hope to go for a second opinion in Pittsburgh.  My mom's insurance won't pay for a non approved fda treatment.  Do you know of any other treatments?  I also do not live near my mom.  I am about 2 hours away.  Also, my mom tends to push me away and tell me not to come home.  I have a job and family too.  The emotional stuff can be so overwhelming at times.  I appreciate you sharing.  I will be praying for you too.

Thanks 

 

HI- my mom was diagnosed with gbc about 4 months ago. She had pains in her stomach and thought it was her ulcer acting up. When she was loosing a ton of weight I insisted that she go to the dr for more tests. A CT showed the tumor- and the DR sent us to a local oncologist who knew- NOTHING about this except that it was rare and she didn't fit any of the statistics. So we frantically made a thousand phone calls and got her into sloan kettering a week later. The waiting list is crazy, but thank goodness we knew an old friend who pulled a string for us. We are now seeing dr fong who is extrememly knowledgable- not the best bedside manner- but what doctors are truly cuddly. :o) Anyway, he said that she had bile cust cancer stage 4 and wasn't operable, and needed to have a stent and a pump pack of chemo implanted. Then we went for more extensive ct scans and the next day he called us back to say that it was gallbladder and she needed to start iv chemo locally. We have gemzar every other thursday and oxaliplatin every other friday- totalling 4 treatments. She was sooo sick in the begining, lost hope, lost a ton of hair, couldn't get the meds right. It was terrible. But I started to butt in and make sure that they were really catering it to her body and her reactions.Sometimes she can be very quiet and her details are not accurate because of the meds. We finally came to a good mix of zofran (extended for 5 days), emend for nausea, lorazapam for anxiety, dilaudid for pain, bentyl for pain, nexium, centrum, a shot of neulasta, decadron (a stroid for energy and appetite) and sometimes compozine.

Then we went back for another round of ct scans at msk and we are now operable! It only shrunk 10% but that's enough to have a surgery discussion. So we are prepared to have a 50/50 chance of getting this thing out of her. The lymph nodes are inflammed but they will do a biopsy to see if they are cancerous. If they can- they will take out the gallbladder, 80% of the liver, reconstruct the bile ducts-  and we are done! But there is a 50% chance that when they get in, it will not be operable. So we have gotten cleared for a clinical trial with dr kemey at msk for hia therapy. The silver disc that is surgically implanted to give chemo 100x to the liver. Hopefully this will shrink it and in a few months we can talk about operating again.

Wow, what great information! So glad your mom seems to be doing well. My mom went with a local oncologist because she was scared to wait for MSK, and I am kind of afraid it is a mistake. Where I think they really botched it, though, was at the beginning.

 They did a CAT scan of my mom, and her doctor said it was gallbladder cancer, although it would have to be biopsied to know for sure. The surgeon seemed to think (I'm guessing because this is so rare) that it might not be. So, they went in, took out the gallbladder, scoped around, and took two lymph nodes (one of which was cancerous). However, her CA-199 marker is still something like 2000, so the oncologist says the cancer is somewhere, but they aren't sure where.

 I feel like there could have been better sizing up of the situation in the beginning, because I still feel like more operating could have been done/be done, but they aren't willing to do a PET scan for a while. It's just frustrating, because I feel like it should have been scoped out like your mother's was. I hope she does very well!

 I am going to get a second opinion (she just had her first chemo treatment last week) but it's just very frustrating. I guess I need to see how she responds, but the prognosis seems so grim, and even with good oncologist, how many of these cases can they really see (aside from cancer center hospitals)?

Thanks for your note.

Hi- I was reading a few blog's about folks with this cancer and I felt that it was so helpful to share as much information as possible. So I started a blog about my journey as a gbc caregiver and what I have learned so far. I wish I knew these things months ago and hope that they maybe help just one person. There are things we can do in this situation- share the tips, tricks and knowledge that we have learned to make patients going through this as happy and comfortable as possible with the highest chance of survival. Feel free to read, comment and start your own.

http://hopewithgbcancer.blogspot.com/

On 5/6/2009 Fionat wrote:

I would really appreciate some guidance about my mother's treatment. She began experiencing some pain in her stomach about 2.5 months ago, and (suprisingly, for my mother) went to the doctor pretty quickly. Since her pain was not going away, he gave her a CAT scan. The doctor came back and said the prognosis was cancer, although it could only be proven through a biopsy when her gallbladder was removed. The surgeon, however, seemed much more leery of making a diagnosis. However, when he went in about a week later, he took out her gallbladder (which was cancerous) and two enlarged lymph nodes, one of which was cancerous.  The surgeon did say that surgery is the more effective route, assuming of course, that it has not spread too much to operate.

The oncologist said that he would consider my mother's diagnosis to be a stage 3 or 4; he said what matters more is that it is in the lymph node, which I understand. However, he is not at all a proponent of surgery, because he says that once it is in the lymph node, surgery doesn't help. This may very well be the case, but her CA199 (I think) markers are in the 2000s, and I just wonder if there could be surgery that could be done to eliminate a growth, and then do chemo. However, the oncologist seems adamant that this is worthless right now.

 Unfortunately, my mother is in Florida, and I am in New York. I have urged her to get a second opinion down there, and I have been talking with Sloan-Kettering, but am having big trouble getting all her reports in a timely fashion. I would like to hear what SK has to say, but it's a month wait for an appointment. My mother is DEEPLY opposed to waiting that long, but I wonder if it's more worthwhile to wait (although I realize this is a very aggressive cancer) and have a (perhaps) more effective treatment because these doctors specialize in this type of cancer. She is being very passive about getting a second opinion, and I believe this is related to her fear of waiting. However, I don't want to be stupid about this.

 Any advice anyone can offer? I appreciate any help. It has been about 3 weeks since her surgery. This oncologist wants her to start chemo next week, and said he doesn't think she should wait more than 10 days to start.

 

Hi I have GBC. A year ago I had my gall bladder removed, then a liver resection, (CA had spread there but achieved negative margins with the surgery), and some lymph nodes removed (all negative). I have since had 2 kinds of chemo and had radiation, too. Surgery is the first and best option, if there is a chance that all cancer can be removed that way. And that a watchful follow-up in case of recurrence (CT scans and blood tests). Further surgery is usually not done if the tumor(s) are spread to the point where surgery cannot remove it all. In this case, chemo and/or radiation and will prolong life, however, and, at least for me, it was pretty tolerable. I cannot tell by your note what cancer stage your mother is in, I certainly wish you the best and hope you will follow up!

 

On 5/7/2009 BMNEWDAY wrote:

I have gallbladder cancer. And it moved over to the liver. After my gallbladder was removed I was put on Chemo. Your Mother should start now. They will give her Gemzar which is a very mild form of Chemo. My Ca19-9 has been as high as 32,000. I am being treated at a local hospital which works out great. I am also very close to NYC and Sloan but prefer to be local. I was diagnosed which GB cancer in Dec. 2002. Since I have been doing this for over 6 years I would be glad to share my experience with your mother. If you like feel free to contact me @ --Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--

Hi, My sister has stage IV Is this what you had? I am so glad you are doing well.Please tell me what you are doing?

 

 

 

 

 

 

 

Hello

I just found this site and I'm so glad I did My mother was dx with GB cancer 1/09  stage IV we started tx that week the markers came down with the first tx ending in june 09 now we have been on 3 different tx and the markers keep going up and my mom is very emotionally drained thinking she's just sitting around waiting to die I need help as you know they gave her 6 mo to a yr I belive she is strong enough to go through more tx but it tears her down when they seem to not be working.. do you have any advise?

 

Marlene