October 27, 2017 at 9:01 am #95968positivityParticipant
I am so sorry for the loss, but be comforted with the memories and support you offered her. On this forum we share the experiences and understand the magnitude of this condition. May you have some peaceful moments and take the time to grieve which is okay.October 22, 2017 at 11:38 pm #95924debnorcalModerator
I am so very sorry for your loss. May memories of happier times with your mom comfort you during this difficult time.October 22, 2017 at 7:27 pm #95923WmeiselParticipant
Though you dont know the people on this site, all of us feel your loss and want to be present with you . Blessings to your mom and to you and your family. This community cares about you .
WayneOctober 22, 2017 at 11:49 am #95922
Today i have sad news. My mom passed away today. The pain and fatigue was to much for her and she started an Euthanasia procedure last friday . Sometimes things go fast. May she finally find peace. Thank you all for the support.July 24, 2017 at 4:16 am #95325
This essay is a gem, but I thought I would summarize Dr. Gould’s observation on survival data for those who find this essay quite lengthy.
Dr. Gould notes that the median survival of eight months that he read about related to his own cancer diagnosis did NOT mean “you have about eight months to live.” Instead, it means fifty percent of persons studied with that diagnosis survived more than eight months. Moreover, within that 50 percent, there were many who survived much longer than the median, for example for several years. Knowing this, he focused on thinking about factors related to his own case that gave him hope of being in this fifty percent, such as having good medical treatment and decided that he had a good shot at living well beyond the eight month statistic.
He also points out that every improvement in care pushes the survival curve out, offering additional reason for hope.
Regards, MaryJuly 24, 2017 at 1:17 am #95324debnorcalModerator
Agree. Many good points made in the article.July 23, 2017 at 11:08 pm #95323marionsModerator
Great article.July 23, 2017 at 3:59 am #95322
To anyone worrying about survival statistics:
If you have patience for a 4-page read, below is a link to a famous essay by Stephen Jay Gould on what life expectancy numbers mean for cancer patients. Dr. Gould was a Harvard paleontologist who was diagnosed with mesothelioma in 1982. He looked it up in the library (this was before google and Wikipedia) and saw the median life expectancy was eight months. In his essay, Dr. Gould explains very eloquently the hope he saw in this number. He went on to live another 20 years.
Regards, MaryJuly 22, 2017 at 6:39 pm #95321
Thank you for your kind words, and yes, we feel blessed that the stents worked out good. We take it one step at a time.July 21, 2017 at 12:55 am #95320positivityParticipant
Thank you for joining our board and sharing your experience. This is the time to become knowledgeable and know what is offered as treatment. Get several opinions, ask questions, and don’t be afraid to walk away from a doctor who makes you uncomfortable or is being pushy about a particular treatment.
I know it is difficult in the beginning to not be confronted by negative information or poor prognosis reports. Do not focus on that, but focus on how you can offer the best support for your mom and take it day by day. You will drive yourself mad if you get stuck in the quantity rather than quality of life. I am also in your position as my mom is in the palliative care stage, and this is with acceptance and understanding of the long road we took to get here. This is what works for us, and as you will learn every individual is different on how they respond to treatment or what they can be offered.
She is fortunate to have the stents as sometimes it’s hard to put stents for some people.July 20, 2017 at 6:54 pm #95316
Thank you all for your reactions. @marion: there was no curative treatment possible due to the fact that the portal artery runs through the tumorous material and all the bile ducts are affected. as are the lympf node biopt is malignant. The treatment is palliative and consists of placing two metal stents to open the bile ducts.
@mary: Thank you for your words, this helps. I am trying to read about this and educate myself. I try to be supportive to my mom so i can provide her with as much knowledge as possible without getting into details.
@Melinda: thanks, i will update and hope to find wisdom so i can care for her in the best way possible.July 20, 2017 at 2:48 am #95319mbachiniModerator
Welcome to this discussion board. I am sorry to hear of your mother’s diagnosis, but know you have come to the right place to find information from patients and caregivers all over the world.
Please don’t give the statistics too much thought as Mary pointed out many reasons for possible inaccuracy. We are all individual and respond differently to treatments. I am happy to hear her stents have been placed and that this will relieve some discomfort for her.
Please keep us posted on her progress and let us know if we can help with any questions.
All my best,
MelindaJuly 20, 2017 at 12:47 am #95318
Welcome to the discussion board. It is good to hear your mother is feeling better. If you haven’t already found it, there is a great deal of good information on this website for newly diagnosed patients and their caregivers.
You ask the most difficult question, namely about prognosis. This is a very rare cancer and most doctors outside of the few true experts have not seen many pCCA patients – hence, they may not have experience with sufficient numbers of patients that could feed well-informed guidance on what to expect. There are research studies you can find on-line that look at survival, but most also suffer from small numbers and many look at subsets of patients who may not match your mother’s profile. Organizations such as the American Cancer Association publish historical data that likely understate survival since treatment today is better than in the past. So while you may look at some estimates of survival, they are not going to be precise plus they are averages of patients who are all over the map.
Many patients and caregivers have posted their histories on this discussion board. I found it most helpful to find and read cases similar to mine to get a sense of what to expect. Even then, you will see there is a broad range of experiences. For example, there are a good number of Stage III and IV patients who have done well and substantially exceeded what the data might suggest. So there is much reason for hope.
That said, this is a tough cancer and it is important to be well-informed. Ask a lot of questions with medical providers and push them to find you the answers you need. This cancer turns us into students and researchers.
This board is a great place to find information and comfort. Best wishes and prayers as you support your mother’s treatment and care.
Regards, MaryJuly 20, 2017 at 12:12 am #95317marionsModerator
Hello, Wim, welcome to our special group of people touched by this cancer. So sorry to hear of your Mom’s pain following stent insertion. Hoping it will have eased by now. In any case, make sure to report to the physician any changes i.e. fever as well as an increase in pain.
Your Mom should feel significantly better. Her bilirubin will drop and the yelowing of her skin color will disappear, but give it some time. Skin takes a bit longer than the yellowing of her eyes, which can be gone within hours.
The nausea should decrease as well. It’s very difficult to predict life expectancy as it varies from person to person, but I would not focus on it. This cancer can be treated similar to that of a chronic disease, your Mom very well be around to talk about it in years to come.
I realize that surgery is not possible at this point, but what treatments have been offerd to her?
Hoping for others to chime in as well, as the collective wisdom of this board derives from the hundreds of members sharing and advising us all.
MarionJuly 19, 2017 at 6:53 pm #13541
Hi There. My name is Wim i am from The Netherlands and my mom has Perihilar Extrahepatic Cholangiocarcinoma stage IIIB/IV. She has had surgery to insert two metal stents yesterday. After surgery she had intense pain and had to have a large dose of morfine.
Today was a better day, she was released from hospital and we hope her condition will improve, the nausea, dizziness and yellow skin color.
I also wonder about the life expectancy. Here in The Netherlands they do not predict any chances on how long she has. Are there any ballpark figures one can expect ?
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