Praying for the ability to cope with mom’s cc
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Hi Fern,
Welcome to our world. I know it is not where you wanted or expected to be, but you will be glad you are here. You will get all the information, help and support you want or need from all the wonderful people here. Everyone here has been touched by CC in one way or another and are all here to help and support each other. I will be hoping for the best for your Mom. Hopefully you will soon have more answers and then will be able to decide how to go forward and fight this disease.
Darla
Another Fern? I thought my mother was the only one (it’s her middle name)
Sorry to hear about your mother. You’ve come to the right place.
Hi Fern,
Welcome to the site although I am sorry that you have to be here, and I am sorry to hear of your mums diagnosis. My dad was 64 when he was diagnosed with inoperable CC, tumour too close to the portal vein. His symptoms were the same as your mum, he had the jaundice and his GP sent him to the local hospital and they did all manner of tests, CT scan, MRI and 3 weeks later he got the news that we didn’t want to hear.
My dad wasn’t suitable for surgery or radiation so he had Photodynamic Therapy, PDT and also had a metal stent inserted. They were going to hopefully try chemo for him at some point but as it turned out he wasn’t suitable for that either.
I was my dads carer during his fight with CC so I do know how stressful this is for you right now. I know in my dads case that he wanted both myself and my mum to know what was going on with him and his treatment, and I took my dad to every GP, hospital and specialist meeting. That way I knew what the plan was and was able to speak with the docs on my dads behalf. I think If I was in your shoes then I would have a talk with your dad and express the concers that you have regarding your mum knowing exactly what is going on. As you say, it is hard to get answers from your mums doctors as she is at the meetings, and I agree with Kris in that your mum should be allowed to make these decisions.
I know when my dad got his diagnosis, he took it very badly at first, as we all did. That is natural. But then his attitude changed pretty quickly from what we can’t do to what we can do and his fighting spirit took over. How do you think your mum would react if you told her exactly what was going on?
We all know how tough all of this is, so please keep coming back and we will do all we can to help you.
Best wishes to you and your family,
Gavin
A big welcome to you, Fern – & what a lovely signature post you’ve added to your profile.
I’m so sorry to hear about your mum & when you wrote: “I feel so helpless and ashamed that I am falling apart when my mom is the one who is ill. She feels fine except for being tired” I can really relate to that. That pretty much sums up how I was feeling about my sister’s illness only a few weeks ago. The support you’ll get from this site really helped me & will really help you, too, so do please keep coming back & talking to us.
My best wishes to you & your family.
Julia
Welcome to our site and wonderful support and information group. I really want you to sit and think that NOBODY knows how long someone has to live. It is a guess. I have been a year and a half since my reoccurance and basically feel healthy despite having 2 quite large tumors.
I am concerned that your mother is being kept from the knowledge about her health. How can she make decisions if she doesnt know the facts? And these are her decisions and are very personal. Some people choose no treatment and some fight aggressively depending on how they feel and what they want. Perhaps in your family’s desire to protect her, you are actually putting her at a disadvantage.
This is a hard cancer and one that requires both mental and physical strength from everyone involved. We are a great resource to help.
Kris
Oh my goodness, Fern. Mom has really been though it hasn’t she? It really sounds like your doctors are right on top of it and that is a good thing. My husband is 77 and his CC returned with 2 tumors, 3 tests coming up to get some answers. Everyone is different but knowing what is going on is so important to him. We have talked, lots, and he cannot have chemo, that was decided 5 years ago, but possibly radiation /cyber knife. Even though I am the Care Taker he is in on all decisions and wants to take part in determining his own care. It is such a personal thing but if you may not agree with dad’s decision you might want to ask yourself what you think mom would really want.
IF you feel she would want to know, then a talk with dad is in order. It sure would take pressure off of you. Care takers have enough pressure as it is. Wish there were some easy answers for you. Please take care of yourself. Surely, if it continues to be a “secret” you can call the doctor, explain, and I am sure he will give you some answers. You might want to ask the Radiologist: Side effects? How long is the treatment. Ask him if this was his mother would he still suggest it? I remember one ONC telling Teddy that if he was his father he would NOT do any more surgery and no chemo. Good luck. We try to be Realistically Optimistic.We found out when my mothers skin turned yellow. She went to her GP who did some blood tests and sent her for a cat scan. The liver tests showed really really high levels and of course the tumor showed on the scan. At the time they thought it to just be a stricture so he sent her to a G.I. Dr. They went in and found the tumor did brushings and put in a stent to reduce the jaundice and to help with the blockage of the bile. The brushings came back positive. She then went to a surgical oncologist who sent her for a pet scan to make sure it had not spread. He said if it had spread there would be no reason to do the surgery. There was no sign of spread but when he had the scan reformatted as he called it not sure what the heck that means, he said it involved the main portral vein and could not do surgery that chemo and radiation were the only possibility. I did ask the medical oncologist the one who will be oing her chemo about internal radiation the thermaspheres, SIRT, and cyberknife but he said those would not work for her. He said we needed to go to the radiation oncologist to see if he felt she needed radiation to go with the chemo and that after that those 2 docs would talk it over and see what they thought was the best approach. They did a potassium blood test which showed pretty high they said. I don’t know because I am not sure what levels are considered normal but hers was 6.9 so they wanted her to come back Monday to make sure the test was accurate. It showed a level of 5.8. I have no idea what this means as far as this cancer. I do know when she was in the hospital with the blood infection that she was in acute renal failure but that it reversed itself once they put in the drain and gave her a blood transfusion because her bone marrow was not producing like it should. I hope that answers the questions as to what tests she has had done. My mom is 79 and was in absolutely great health. She acted like a 60 year old until all this. My father believes that she should not be told that she is terminal because it would depress her too much and that her frame of mind would keep her from fighting. He wants her to think that this chemo will fix it. It is very frustrating to try and accomplish any question asking to the doctors by doing it this way. TY so very much for your help and support.
Dear Fern, welcome to our wonderful family and we are so sorry to hear about your Mom. An unresectable tumor does not mean that nothing can be tried to help the quantity and quality of life. You have been dealt a huge blow. Can you tell us how they found out (what tests) and also the possibility of a second opinion. If you would read up on some of our past posts I really think it would help a lot for you and your mom. We have people on board who were given the same diagnosis and are still posting on the Board.
May I ask if you are not telling her about her condition, what does she think is wrong? I know you will get some more answers here. Please keep us posted.TY,
I am so sorry to you and your family have to go through this, but there is hope. I was diagnosed in July 09 and my prognosis was maybe 3 months, maybe 14 months. They just don’t know. We have people on the board who are 3 years out with unresectable bile duct cancer (which I have). I’ve had four stents placed and 2 bacterial blood infections, radiation and chemo last fall. Since Nov. I have felt great. Would not even know there was anything seriously wrong, if I did not have the diagnosis. I’m now surprising my doctors by doing so well. I must admit I am a bit nervous about my check up next week and the likelihood of starting chemo again because that darn tumor is still there (as of last Feb), but that’s par for the course.I’m sure many people with more experience than I will offer you suggestions to ask the radiation oncologist. My main thought it that you and your dad need to learn what the signs of a bacterial blood infection are so you can get your mom to the ER or doctors office immediately.
Kathy
A month and a half ago my mom was yellow. How could she have not noticed this discoloring? I made her go to the Doctor to check it out. Here we are 6 weeks later knowing she has about 7 months if that. My best friend, my mom the one person I could be a big baby around the one person who even though I am 43 let me feel like I did not have to be a responsible adult when I was around her. She still took care of me. Now I am taking care of her which is scary. The tumor is unresectable. She finally saw a chemo oncologist last Friday and is going to a radiation oncologist tomorrow. My dad does not want her to know she is terminal so it is hard to get answers from Dr’s because of course she is always there and the only time we see the doc’s is at appts. I know there is no hope in this. I feel so helpless and ashamed that I am falling apart when my mom is the one who is ill. She feels fine except for being tired. She had a stent put in when they first discovered the tumor. Within a week she started having difficulty talking and started saying things that did not make sense. One night she started going in and out of consciousness so we called an ambulance. She had a bad blood infection. They kept her for 5 days and put in a biliary drain to get rid of the bile that was just sitting there. I hope to be able to find out tomorrow more information. If anyone can suggest questions for me to ask this radiation oncologist tomorrow I would sure appreciate it. TY. Fern
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