Mom just diagnosed w/ Klatskin tumor shes 84yo
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Originally when she was first admitted they said after CT and MRI scans that it was 1.5 centimeter tumor….when we finally took her to Memorial Sloane they did an additional stomach ct scan and an endoscope w/ biopsy. Stomach scan showed lymph nodes were suspicious and the biopsy was negative. But the Dr. is certain they are positive in the nodes, so he wants this brushing procedure done where they go in through the port, brush the nodes and get a better tissue sample.
Very frustrating as I want to just figure out the plan of action, as im sure you were feeling the same way.
We take it day by day and never know what will happen as there have been surprises along the way. Last December the oncologist suggested hospice due to spreading in the ducts, and they were not optimistic at all. Family did not choose hospice as to some obvious reasons. She has the catheter and they were unable to cap it, and I wondered if this was ever possible in advanced CC. The catheter works just like the stents in replacements are essential every 3 months and some patients have to do this before the three month mark. She has gotten several replacements. Also, there are cases where the catheter does not even work. She is doing okay, taking into consideration how tough this has been and all the appointments and symptom management. I have gone through the statistics multiple times with doctors and you do get to a point in letting them know you get it. I remember asking about IPT therapy after diagnosis and it was an immediate , “No” , not even any thought put to it by a surgeon who is familiar with this condition, but you should ask for several opinions.
Please do a search on individuals who have had surgery and their results. That way you can make the best decision. How big is her tumor? Was this diagnosed through an ERCP by getting a biopsy sample? Just curious, as brushings of the tumor are typically not conclusive and a tissue sample is necessary.
Thank you so much for sharing your mom’s story, I read your past posts and it really touched me.
While at her stay at MSK Dr. Jarnigan did have a PTBD drain put in, she had the bag but once they discharged her and her levels went down to 11 they capped it. When we saw the dr last week and they did blood tests her levels went down to 9.9 and she is not as jaundice and feels less sluggish, almost like her old self she says.
I guess until they do this “brushing” procedure of the lymph nodes we wont know which road to take. Of course fingers are crossed for the resectioning, and the Dr. feels shes strong and a good candidate. Every dr and nurse cant believe shes in her 80’s they had her pinned for mid 60’s!
I guess i’m just overly concerned w/ her handling chemo and this long surgery. I’ve also been looking into IPT Therapy, if anyone knows anything about this I would love to hear.
Sounds like your mom is fighting the battle and that’s half the game. How is your mom doing today? I felt like a truck hit me when the first set of GI dr’s we saw said most people don’t survive a year without the resection surgery.
I also am just in the process of researching and gathering information as she is newly diagnosed only 4 weeks ago, as you know this is ALOT to take in.
I commend you for all you have done for your mom….you are amazing!
April,
Thank you for sharing your story, and I have been there and understand what you experience. My mom was diagnosed with Klatskin tumor in late 2016 and the shock and stress was tremendous. Long story short, as you can read my posts, we continue this challenging journey. Treatment options are personal choices as is surgery. Doctors could not perform surgery on my mom as it was too risky. I do recommend looking at all your options and taking into consideration your mom’s medical history and get several opinions. Please let me know if I can be of any support. You will be a tremendous support for her, stay strong, ask questions, and be clear of everything that happens in any medical setting.
Mary, thank you so much for the link and kind words.
We are very lucky that mom is on no medications she is in perfect health other than this diagnosis. We’re just hoping it isnt in the lymph nodes and we can proceed with resection. One thing is for sure she is a fighter and has such a positive outlook on things.
I will definitely update my post once her July 3 visit is done.
April
Hi April,
Welcome to our community. I am sorry to hear about your mother’s diagnosis — no matter what the patient’s age, no one wants to receive this sort of news.
There have been a number of research studies on the experience of elderly patients with liver resection surgery, and the good news is it is generally safe, assuming the patient is healthy enough to undertake the procedure. Here is a link to a recent study.
https://www.ncbi.nlm.nih.gov/pubmed/29135100
In the case of chemotherapy, the question can be more complicated and depends on the health status of the patient. Your mother’s doctors will look at her overall health and functioning, for example, does she have conditions such as heart or kidney ailments or anemia. They will look at the medications she already takes, which might negatively interact with chemo. Many older patients are able to tolerate chemotherapy, but some are not.
As you will see in the patient stories posted on this board, there is a lot of variation on how patients fare under treatment. A good number will do better than the statistics might suggest. In some patients, this cancer can be slow-moving even without treatment. And research is advancing quickly with many new treatments emerging or on the horizon. So there is always hope that a patient will surpass any prognosis a doctor may offer. It sounds like your mother is being seen by doctors who are expert in this rare cancer, which is a factor in her favor.
Please stay in touch and let us know how your mother is doing.
Regards, Mary
This is my first time posting…i’m hoping finding this site will help me not only with giving me some knowledge but also some hope!
My mom out of no where on May 27th appeared jaundice and we took her to the local ER where they first diagnosed her with liver cancer, we couldn’t believe what we were hearing. Our mom, although 84yo is more like a 64yo, she’s never had any health issues, is full of life and always the life of the party. She also happens to live with me and my husband.
I immediately went into defense mode and researched drs, we came across a Dr. William Jarnigan at MSK in NYC who was willing to see her. A few drs turned her down b/c they said her age, that she should be happy she had 84 years and just enjoy the remaining time. This I would not stand for. Dr. Jarnigan had her admitted and had his team put a port in w/ a bag to drain the bile fluid. When she was admitted her bilirubin level was at an 18! 5 days later she was discharged and it went down to an 11. A week later we went to see him again and he was concerned that on one CT scan it showed what looked like spots on liver lymph nodes, although the biopsy was clear. He suggested one more test she will have first week of July.
Right now the 2 options are; if not in the lymph nodes they will do resectioning surgery, he said it would be 4-5 hrs and should would have a week or so stay in the hospital they would also remove about half her liver left side. If it is in the lymph nodes chemo would be necessary to try and shrink.
We are hoping for the surgery option.
I have no idea what to expect w/ someone her age and chemo.
Any responses would be greatly appreciated. We are being told the no surgery option, some people live a year, the other half longer.
Thank you all for being so braver and sharing such amazing stories of survival…it give me hope for my mom.
April
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