Gallbladder cancer - can anyone offer any support

Hi Hope,

I wanted to reply to your post. Please seek a second and even third opinion with a surgeon experienced in biliary cancers. Do not  ust seek the advice from a local doctor who has no experience with this type of cancer. I was diagnosed 4 and a half years ago with gallbladder cancer as well at the age of 47. I had a routine gallbladder laproscopic surgery and a week later after the pathology came back I was told I had a T2 tumor in the gallbladder. The first surgeon and doctor I saw made things sound very grim and I sought opinions from other doctors. After a Ct scan to show no further spread I had surgery at UCLA by a wonderful surgeon. He was very encouraging and optimistc. I had a liver resection and my cancer was staged at T2N0M0. I sought opinions at Dana Farber and other oncologist and did chemo and radiation afterwards to clean up any remaining microscopic cells. I am still being followed by my oncologist and get a yearly scan. I am coming up on 5 years soon. I believe that having a liver resection saved my life. Removing the gallbladder alone is not enough as remaining cancer cells may be present on the liver as the gallbladder rests on the liver. During the last 4 years I have formed some online friendships with others that have survived T2 gallbladder. I believe the best advice I can offer is to seek care at a large hospital that is experienced with bilary cancers and seek an opinion with a biliary surgeon even if you have to travel out of town.  Best of luck to you and your mom. This cancer can be survived.

Hope41 said:

Hello Lourdes.  Thank you so

Hello Lourdes.  Thank you so much for taking the time to reply.  I never expected any replies as this is such a rare horrid disease.  I have done so much research on this now that I am slowly coming to think I now know more about this than the surgeon!  The only positive I can see at the moment is that when we get the results next Thursday, I am praying that it hasn't spread like yours.  As far as my parents go, I think they don't understand how serious this is as they haven't researched it as much as me.  I think they believe that the gallbladder has gone and hopefully the cancer has and that is is, end of story.  I tried to gently point out yesterday that it is looking likely she will end up in a much larger, specialised hospital nearby for an op.  Mum is quite prepared for this but I don't think she thinks it will happen.  How did you stay strong Lourdes?  I feel my world is crumbling around me and can't cope with even the basic of things in life ie looking after my family, communicating with my husband.  It's just horrendous.  As we are in the UK, I can't help worry that our treatment isn't as advanced as yours.    The Consultant did say to my parents it was very small tumour, that's the part they can remember bless them. Thank you again for replying, you have given me a ray of hope and I have really struggled to find this on the intermet as everything is doom and gloom.  Best wishes to you and take care.

You asked how I stayed strong and I must admit it was very difficult. The hardest part is that there are few people to talk to and everything I researched on the internet was very grim and some of the doctors were also very grim. I did meet a few ladies that also had gallbladder cancer similar to mine over the internet. This gave me some hope and someone to turn to when I was feeling dark. Although T2 is much better than having a late stage gallbladder cancer, it is still potentially fatal if not treated correctly. I feel your mom may not be aware that removing the gallbladder is not enough. I went to UCLA for my liver resection and the surgeon was amazing. He did explain that liver resection was my best chance of survival and even with a resection there is always the chance thatit can come back. The first few years were hard,but I have seen others with T2 gallbladder cancer survive and that helps. All the survivors that I communicate with have had a second surgery (liver resection). My tumor was also very small and located in the same area as your moms. The internet is full of doom and gloom when it comes to gallbladder cancer. I think some of the information is outdated. This was the hardest for me. Reading on the nternet how noone survives is hard. However, I have met at least 5 other survivors and I am sure there are many more who just dont want to relive the experience by posting on cancer forums. If I can be of any  help please let me know.  I am not sure how the healthcare system in the UK works, but I would ask for more than one opionion and a referral to a liver surgeon asap who has worked with Biliary cancers.  BE prepared for some negative comments from doctors, as even after my liver resection was completed and no further cancer was found , I had some doctiors who felt my changes were still slim. 

Hi there,

Your situation was almost a mirror of what we went through with our mum. She was admitted with gallstones which then turned into a ruptured gallbladder due to inept NHS doctors not takig immediate action. After a high risk op the gallbladder was removed and mum began her slow recovery (she had an incision from her breast bone down to her tummy button as they had to clean the entire abdomen of fluids from the rupture). She managed to make it through the surgery only to be called into a room on her discharge day and be told that histology reports showed cancer in the gallbladder and that the liklihood was that it would be inoperable.

A follow up oncology appointment suggested that the cancer had actually spread into her peritoneum and this was why no ops were available. She was given 1-2 years best case with chemo and we were all devastated. I immediately arranged a 2nd opinion as I did not trust that they were taking on board the comments of the surgeon at the time (he had written up that the masses found in the peritoneum were likely as a result of the post op trauma and not cancer).

2nd opinion came back that it could be either (cancer or trauma) and that the best course of action was chemo with the view to stabilise or shrink what was there (if anything was) but also to eliminate anything small and not on the scan. Mum endured a full course of chemo and has since had 3 scans. Every single scan has come back clear and the oncologist believes that the mass in her peritoneum was not cancer after all (although the gallbladder that was removed definitely was). So we are now hoping that the surgeon managed to scoop it all out initially. She will always be high risk because the gb ruptured but it sounds as though your mum has everything to fight for being stage 2!

Keep positive and explore every option available with her. Be her advocate and push the doctors when you need to as they are not always right. I would think in your case that they will definitely recommend chemo as a precaution if the scan comes back ok because scans will not show the smallest of cells. Here in the UK no surgey is really offered for GBC other than removal of the gallbladder itself and sometimes other organs nearby if the spread can be contained, I know there are different thoughts on this in other countries.

On a side note, if your mum takes chemo the effects are usually easily tolerated, my mum had some hair come out and was cranky due to the steroids for a few days after each session but other than that was fine. Please feel free to message me or reply here if you need another perspective, We are now 11 months down the line since the initial diagnosis and mum is doing brilliantly, she is back to her normal self, no side effects from the chemo and is looking forward to celebrating Christmas before another big scan in February.

Hope41 said:

Thank you Rich

Thank you for your reply Rich.  It is very much appreciated.  I do remember reading your original posts while I have trawled through the internet looking for any detail at all re this horrid disease.  I am pleased your mum is doing well, that is lovely news. 

 

As as for my mum, the update is...well at the moment there is not update apart from the nightmare continues as mums appointment with the Consultant was cancelled due to the results of her urgent CT scan not being back!  We were so upset and now have to wait until next Tuesday.  The NHS have been shocking so far in my mums treatment and support so far.   The specialist nurse assigned to mum hasn't even been in touch to offer any support during the wait for the results.  We are in the midst of another horrible weekend of stress and worry.  On a positive note, mum seems to be eating better and is hopefully building herself up in preparation for what we think will be abother op.  The Consultant and Specialist Nurse hinted that she may have a further 'major' op.  It's been frustrating in all of my hours of searching the net that we do not have a staging diagnosis, just the mention of a T2 tumour in neck of gallbladder on the Consultants letter.  I think we would be more prepared in terms of possible treatment.  I realise T2 is not the same as stage 2 as we are not aware at this point if it has spread.  The doc did say the tumour was small but I have no faith in him.  I work for the NHS and it's so hard dealing with some of the 'clinicians' we have come across so far and keeping quiet.  

 

So, it's another waiting game until Tuesday at 2pm!  I'm mentally trying to prepare myself for the worst which is my way of coping.  Prepare for the worst, hope for the best is what I heard the other day.  I have never wanted anything more in my life.  This is so unfair, cancer is so unfair.  It is always sent to someone who doesn't deserve it.  The most humble, kind and generous people.  My mum has so much to look forward to.  She has our new baby in the last weekend of Jan, my growing beautiful son and her loving husband.  Why us, why our family, why anyone's family.  It's so hard to cope with.  She is eating so much better and is beginning to look like herself before her op four weeks ago.  I will take your positive story and store the good news you guys have had and try to remember this if the news isn't good.  

 

Thank ne you again for replying with your positive story and I'm sending best wishes to you and your family.  

I highly recommend getting genetic testing done specifically to see if she has HER2 expression.  HER2 is common in breast cancers for which they have a number of good chemo options.  It's only recent that scientists discovered it in some GBC.  If she has it, it will completely change her chemo regimen and extend her life.  i can't say it's a cure but it's certainly more hope than without.  

My friend (Stage 4 GBC) tested positive in March and has been on Herceptin plus another HER2 chemo.  Her tumor markers and liver function or normal now and she is seeking surgical options.

She went through Perthera who coordinated through Caris and Foundation One labs.  Takes about 4 weeks from biopsy.