Mom just diagnosed! What to expect?
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Thanks to all for your helpful replies. I will try and keep up to date on the message boards. Its good to have understanding from people who are having, or have had experiences, similar experiences.
Amsred,
You asked 3 specific questions and when I found myself in your situation I really wanted my specific questions answered. So, I am going to give a go at offering you answers to the questions you asked.
1. How long is a very difficult question to answer, we have seen very slow moving versions of cc and others that move quickly or secondary medical issues that cause decline. If your mom has declined treatment, then engaging with hospice is a direction you will want to likely pursue as they will provide comfort care, specifically pain management. Pain, fatigue and digestive issues are the common issues that may impact your mom
Amsred,
Welcome to the site. Sorry that you had to find us all and I am so sorry to hear about your mum. You have come to the right place for support and help and you will get so much of that from all of us here. This is such a tough situation that you and your family are in right now and I know how you are feeling as I went through this with my dad. I was my dads carer during his fight with CC and was by his side throughout, and at the same time I was and still am my mums carer, she has COPD and has also had a heart attack recently. It is tough being the carer for one parent never mind both at the same time, but you have done the right thing in coming here and seeking help and support and we will help you all the way.
I can understand your mums decision not to seek a further opinion or treatment and to have the best quality of time that she can. From what you say, it sounds like your mum has made her decision and is content with it. What I would say to you is to try and make the most of this time now. I still look back at this time with my dad fondly and remember the good memories that we made.
As the others have said, the stent and the drain will allow your mum to feel much better once they start working. My dad had a metal stent inserted and he felt so much better once that was working. Does your mum have any pain right now? If so there are so many meds that will help with this. Your mothers comfort is so important here and hospice will be a great help with this. Lainy mention Dr Giles and I think that he would be of great help to you here. Here is a link to where you can contatct him –
http://www.cholangiocarcinoma.org/ask.htm
Please keep coming back here. I know that you will have many more questions so please keep asking them. We know how you feel and what you are going through, and we care.
My best wishes to you and your family,
Gavin
amsred…..I am sorry to hear of your Mom’s diagnoses. It is hard for those around to understand your Mom
I know it is hard but try to use this time for good memories- as diffficult as this is there are harder days ahead-
Enjoy the relief that comes from a stent- even go ouit for lunch if your mum feels up to it. Quaility is so important for all of us, more so when the person you love has CC. Listen to Lainy’s wise words.
As for coping there is no way predict this- you will only get the strength the moment that you need it.
Until then when thing get tough- breathe in for 7 seconds and out for 11 seconds. this tip has got me through a lot and continues to work when I have fall apart.
Keep in touch- there is always hope.amsred2, Sounds like Mom pretty much knows something we don’t know. I believe that some people really do get a 6th sense about their own time line and that has to be respected. Again, go to the top of the page and Click on Patient Support then Click on Dr. Giles. He is very good and has helped a lot of people on this site. My only other suggestion would be your own clergy if you have one, who can talk to your Dad. If you Google Hospice they have a booklet that steers you to the end of life. I am sure if you stopped at a Hospice Facility they would give you one of the booklets if it is not on their site. It was pretty right on when I was caring for my husband. Best wishes to your family.
The tumors have spread to her liver and lymphnodes. My dad has begged mom to get a second opinion but to no avail. She is at peace with her decision and I am pretty sure there is no changing her mind. She just wants to enjoy the time she has left without the side effects of treatment. The oncologist did explain that they can manage any side efeects but she still refuses to even entertain the option. My concern now is respecting my moms wishes. I was able to find a good website on what to expect…sort of. I guess no two people are alike. Still looking for ways to help my dad.
http://www.cancer.gov/cancertopics/coping/when-someone-you-love-has-advanced-cancer/page13
Dear amsred2, welcome to our wonderful family but so sorry you had to join us. Did the doctor say where the CC is located and why he can’t do surgery? Has he treated CC patients before? Many have not. We have several Stage IV patients who are doing quite well after chemo. We do not listen to time limits on life! There are patients here who were given a life line like that and have survived several years already. Where are you located? It is hard to say how her quality of life will be as everyone is different. Without treatment of any kind she will get more and more tired, not eat and eventaully will have to be under Hospice care for pain control. The externall drain is for bile so she does not become jaundice. Not sure I have heard of putting that in unless needed but it does make one more comfortable if having a problem with bile. Here is what I would suggest. #1 Get a second opinion. Gather all her medical records and see what another Oncologist or a Hospital that treats a lot of CC suggests. #2 Not sure what to say to your father but we have our own Dr. Giles who may know. Go to the top of the page and click on Dr. Giles and he may be able to help you.
Has Mom said why she doesn’t want any treatment? You have a huge job in front of you, be strong and please come to us for suggestions and please keep us posted. We care.I am a new member whose mom (63 yrs) has been diagnosed with cholangiocarcinoma. We have been told it is inoperable and she is refusing any treatment (which we are told would have little hope of doing much anyway). The doctor says she has sometime between a few weeks to six months to live. After puting in one stent, she is feeling relatively well but the doc would like to put in another or an external drain. I am fortunate that I am able to be her primary caregiver for the duration. I have so many questions?
1. What can we expect her quality of life will be and for how long?
2. Will the extra stent prolong her life or make her more comfortable?and most important!
3. My father, who survived a heart attack two years ago, is having a terrible time accepting my mothers non-treatment option. We also predict he will handle her death very badly (not that anyone can take the loss of a loved one well). How do I deal with my own grief while guiding him through his?
Thank you for your input! We are all in shock and don’t know quite what to expect.
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