Topic: A question about the results of chemo with radiotherapy

Hi everybody.  I'm very pleased to have found this forum.  I"m just learning about CC and have quite a lot of questions.

My lovely mother (66) was diagnosed with an extra-hepatic tumour (non-resectable) several weeks ago.  Apparently the cancer is contained in the bile duct.  She will start chemo soon for a few months, and then, all being well, she should have chemo with radiotherapy after that.  The objective of the chemo/radio is apparently to eliminate the tumour completely.   Everything I've read suggests that CC is only curable through surgery, so I'm interested to know whether others have had an experience of eliminating this cancer without surgery.  I understand that this is quite a new treatment avenue.

Sorry if I am being a bit vague:  I haven't actually been to any of the med appointments so my info is a bit sketchy.

Thanks in advance!

Jane M

Re: A question about the results of chemo with radiotherapy

Welcome, Jane and while I am not versed in Chemo (my husband did not have Chemo) I want to welcome you to the best place you could be for CC. I know it is late here on Friday night  so most are either sleeping or out on dates! But I also know you will be hearing from others very soon. The best I can tell you is to read as much as you can find as knowledge is the most powerful tool we have to fight with. The other is to try and get a 2nd and even 3rd opinion as more opinions are highly valuable and have given many in our family HOPE. Wishing you the very best with your Mother and please do keep us updated as we truly care.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: A question about the results of chemo with radiotherapy

Jane -
Welcome to the family - not one you really want to be but it's the best family. My husband had chemo then chemoradiation but he did have a resection first which appeared to be successful. I would think the goal for your mother might be more in line with shrinking it enough to make the tumor operable. We have had many people who have gone that route.
And I am with Lainy second and third opinions are very important. You really want to make sure that the doctors you are dealing with have seen and treated cc. It may mean traveling to a major cancer center but well worth the extra time and travel.
Keep us posted.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: A question about the results of chemo with radiotherapy

Thank you very much for the quick replies.  The proximity of major blood vessels apparently means that it's not resectable and the medical team is not currently aiming to achieve that, so far as I understand.  She is in a major cancer centre so I do think she's getting good advice, but I also suspect she's either looking at it through rose tinted glasses, or maybe not telling me the whole truth.  I am trying to persuade her to get further opinions but she just wants to get on with the treatment at the moment. 

She refuses to do any kind of research on the illness herself and wants just to do what the doctor recommends (this is her normal character too).  To the extent that she told me she was quite positive because bile ducts are so small that a tumour blocks them very quickly, so when you get symptoms it's still at an early stage.  I can't believe a CC expert in a cancer centre would have said this!   I will keep trying to get her to be more assertive.  I agree that it's worth a lot of trouble - any amount of trouble.

Re: A question about the results of chemo with radiotherapy

Hi Jane,

Cholangiocarcinoma is usually found at a late stage because symptoms often only develop at a late stage.  However, if an extrahepatic tumor causes an early bile duct blockage, then that could contribute to finding it earlier. 

My understanding is that you are right in that surgery is the only procedure that is performed with "curative intent."  I don't think chemo + chemoradiation is generally thought to be curative.  However, I believe this is a pretty common approach, and is part of the protocol that the Mayo clinic uses as a preparation for a  liver transplant.  You could search for "Mayo transplant protocol" to learn some more about that.

I would also echo others in encouraging a second opinion.  So few doctors have CC experience, that it is a good idea, in my opinion, to try and find at least a couple of experienced teams and see what they recommend.

All the best,

Jason

Re: A question about the results of chemo with radiotherapy

Hi Jane,

Welcome to the site. Sorry that you had to find us all here and I am sorry to hear what your mum is going through as well, but I am glad that you have joined us all here as you're in the best place for support and help and I know that you will get loads of each from everyone here.

When my dad was diagnosed with his CC in 2008 it was deemed inoperable for the same reasons that your mums seems to have been in that it was located too close too major blood vessels and unfortunately this is quite common with this cancer. I too can not believe that your mum was told by a doctor that because the bile ducts are so small and a tumour blocks them quickly then that means that the symptoms show up at an early stage. If your mum really was told that by a doctor in a major cancer center then I would be horrified by that as this is most certainly not the case. For far too many patients, my dad included, symptoms do not start to show until the CC is quite advanced hence why it rules out surgery as an option for so many people.

It could certainly be the case that your mum is looking at things here through the rose tinted glasses or that she has not heard correctly what the medical team have told her and that is quite common as well. My dad did that a bit too if I was not there at his meetings with his GI team and I hope that you will be able to attend these meetings in the future with your mum.  I agree with Lainy and Kris that getting more opinions on your mums CC is a good thing but if your mum is determined not to do this I understand the situation you are in. I am my mums carer as well and can so get where you are coming from with all of this also!

As Kris said, shrinkage through chemo leading to surgery at a future date is an option and some of our members have had that happen so please do not give up hope here. And keep coming back here too, we are here for you and know what you are going through. Keep doing your research and keep asking the questions as well. And please let us know how things go for your mum, you are not alone in this now.

My best to you and your mum,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: A question about the results of chemo with radiotherapy

Hi Jane,

My mother was diagnosed with ICC in Oct 2013.  She has one tumor (4x6 cm) that they went in to remove, but weren't able to because of its location (parts spreading to the portal vein).

After recovery from unsuccessful surgery we we through 3 cycles of gem/cis chemo, and then in Feb 2014, she had radioactive seeds placed directly into the tumor (SIRT).  The chemo shrunk the tumor 20% and the radiation did kill central parts of the tumor. 

Last scan in June showed all stable- next scan is in Sept.   

Unfortunatley, the only "cure" I have heard of is if they can remove it.  However, just over the past few years, threatments are improving and you are reading about more people who are surviving longer.  My mother was told very dismal survival statistics, but at almost 10 months from diagnosis she is feeling great. We are taking lots of vacations and spending as much family time as we can.  E

So far, one regret we do have is that we should have had a port put in right at the beginning.   We were thinking 3 cycles of chemo, her veins would be ok, but there will be blood work and injections for scans, and the chemo does make the veins more brittle. She went through much pain and anxiety that we could have avoided.

I am very sorry your Mom and family have become part of this group, but we are all here for you.

Catherine

Re: A question about the results of chemo with radiotherapy

Hi Jane,   

Another warm welcome to the club, but sorry you needed to find us.  I can't add much to what has already been said, but want to add my agreement that she needs to get a 2nd and maybe 3rd opinion as something just doesn't ring true about what she is being told.  Wishing you and your mom the best.  Please let us know how things are progressing.  We care and are here to help and support you in any way that we can.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: A question about the results of chemo with radiotherapy

Jane -
I understand your mom's reluctance to research into the disease....my husband was the same way when he was diagnosed. He let me do all the research, all the talking and all the decisions. If if had not been for me being there I am not sure how things would have turned out. And there were certain things I didn't want to know in the beginning such as what stage he was and what his prognosis could be. Once we got through the worst of it then I asked.

One thing I will add is that there are plenty of people out there who are living with "stable" disease meaning that they still have cancer but through a variety of strategies are living with little or no symptoms.....they are treating this more as a chronic disease rather than what it is.

I would say that having you mom maybe take a tape recorder with her to the MD appt so she can record the conversation or have her put you on speakerphone with a cell may help you hear what is being said, rather than getting it second hand. I know we dis the speakerphone a lot when my husband was in the hospital and I couldn't be there with him.
Good luck and keep us posted.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: A question about the results of chemo with radiotherapy

Thanks so much everybody.  I live very very far away from my mother at the moment unfortunately (almost exactly as far as it's possible to be in fact, without leaving planet Earth) and it's not something I can change quickly, so I'm nearly always going to get things second hand, and getting any precise information is like squeezing blood from a stone.  Anyway, it turns out that the diagnosis is actually pancreatic cancer, but the tumour is growing on the bile duct and has blocked it.  So I am probably in the wrong forum. 

On the bright side, my mother feels OK, just more tired than usual, and is actually really happy and positive about the treatment proposed, and that is obviously important too.  She had a stent put in and will start chemo next week.  I have the feeling that we are probably looking at a lot of treatments and ups and downs and I will need to find plenty of patience (and buy a lot of plane tickets).  Best of luck every one in your own struggles.  It's a terrible situation.

Re: A question about the results of chemo with radiotherapy

Jane........PanCan and the Pancreatic Cancer Network provide great resources to pancreatic cancer patients and loved ones.  Millions have been spent on research for pancreatic cancer hence, you will be able to find a multitude of important information for review.   Keep up the good work for your Mom, she benefits greatly from inquiries you have made so far. 
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER