A year since pancreatic diagnosis, re-evaluated as Cholangiocarcinoma.
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Daughter, I too am a daughter. And it is very hard to be supportive and just be there to listen. When all you really want to do is take control and DEMAND that the Dr. do things differently, give you different answers, your parents get 2nd opinions, etc. I was treated by my mom’s oncologist in 2007 so my mom feels that he is “good.” And it’s not that I don’t, but I’m with you… I just wonder if there is something that is being missed, or something more that can be done. My dad, Tom commented above about we’ve often wondered if my mom’s cancer hadn’t spread to her pancreas….??? Are the symptoms the same? And Missingwayne, I agree! When does the Dr. say that quality or life is more important? Today we were told that my mom could possibly do more chemo next week? And we think “how.” Sitting in his office waiting for him she could barley keep her eyes open. She’s SO weak. Chemo will only make her weaker! But, we are caregivers…. so what exactly is our place? I wish and hope the best for all of you and your families!!!! CC SUCKS!
Dear Daughter, My husband woke up during the night about a year ago with severe pain in his back. We went in to the ER, they ran a CT scan and showed us all kinds of things that were not suppose to be there. When we went to the oncologist he did a tumor marker which was nearly 5,000, suppose to only be about 30. He also did a pet scan. The next week we had a port put in, ready to go for chemo. Chemo made him sick about 28 days a month, by Nov. his tumor markers had came down to over 900, the tumor had shrunk. Then we started to having a blood issue 2 transfusions, and procrit injections. All this and having to balance his INR with coumadin and lovenox injections. Soon after Christmas 2 more transfusions. He woke up on Jan 27th throwing up blood, and with a huge bruise on his side, ER here we come. Three days in ICU 6 more units of blood. then 17 days in hospital then off to hospice for 27 hours. The doctor never told us stage 4 until one week before, then he told me it was stage 4 in July. We weren’t given a choice of treatment, what kind, how much, or if any. I tell you what what I saw the love of life go threw those six months, I would never ever take chemo for me. Sometimes you have to weight quanity with quailty. This way we got neither. The only thing we got was pain, sick to the stomach all day, could not even stand the look at water. I love with with all my heart, but without their little bags of tricks. Maybe some pain meds, and nausa, maybe something for strength. I WILL NEVER TAKE CHEMCO!!!!!!!!!!!!!!!!
Time well spent is the goal, and has been since she was first told of her illness. Financial restraints and my own parental responsibility prevent me from being there often, but I am averaging a visit every 5-6 months and calls every few days, even if only to say hello.
There are days when it is better to speak of mundane things, not focusing on the disease. Other times, for her go on about whatever hardship, and at length.
(It’s about whatever she needs.)
Fortunately, my sibling lives much closer to them and can offer a more local attention.Dear Daughter, CC is one of the hardest diseases to diagnose. Extremely difficult . It does not help anyone including yourself to agonize over the past , can’t go back. It is what it is, no mistaking that, and now you forge ahead.
My husband had a Whipple 5 years ago, has lived on “borrowed time” and now we have found out no more can be done. We have the best doctors and yet when you hear those words, “We cannot do anymore” it is especially hard when he looks the picture of health. He has been poked, prodded and X-Rayd to the ultimate. We have qwuestioned a few things in our minds but it would not change the results. We will now use what time is left to be with family and friends and to enjoy our life together. Honestly I feel he has been through enough as well. We knew from the beginning what we were in for and the hardest part to me is to see him suffer. There is a best part though and that is the family I have made on the site. Stay strong and hope you get to spend some quality time with your mom!Let’s see if I can answer all in one fell swoop…
Her symptoms presented initially as intense pain in the gut, wrapping around the back. That began around this time last year.
Problems building with appetite and the digestion of food – at first discomfort, the whole process became a challenge. Much mimics IBS.
She has not at any time been jaundiced.
Chemo has been hard on her, some could not be tolerated and she has missed many sessions to instead have transfusions or rehydration. She has lost something like 30 pounds.I have asked about the liver and status…Dad said the Doctor was instead discussing the condition of gallbladder, but not in the negative.
If I ask too many questions…I’m asking too many questions. That’s the only delicate way I can explain how much I can contribute to her situation. Mine is to support and listen, not critique or over-emphasize. (Sooo, that’s why I’m here. Trying to put the pieces together.)
The Oncologist my mother is seeing belongs to a well-respected cancer group in South Florida, and from all I’ve been told is networked around the globe…so he has the sources at his disposal for whatever his own knowledge does not provide him.
All that huff aside, I’d still go for a second opinion…but I would have done that a year ago.
My parents are not willing to take another look at this, believing him to be solid in his opinion. There is nothing I can say to persuade them to consider otherwise. (This is not a pleasant position for me to take. And I am in another state.)It isn’t that I’ve dismissed his qualifications, having had another family member treated successfully by him, but that after almost a year of guessing or assuming — or however it is they came to believe this is one type, it is now thought to be something else.
Even that, I can understand, because they can’t get IN there to look at it without harming her…but I feel as though her earlier CT scans (and whatever else to categorise) over-looked important clues.Why this was considered pancreatic to start with? Because of the location?
Biopsy of the cell structure? I have NO idea.The ovaries, which were no big deal, a few months later had to come out because they (suddenly) had dangerous masses, which they realised were contributing to her uncontrollable breakthrough pain.
She also has “spots” in one or both lungs, but are considered inactive. Back burner.
Seems there was something else, too…scribbles, pieces of paper, many bookmarks.It isn’t that I think one diagnosis might improve her chances over the other. Fully aware of the limitations. She’s got it bad, whatever it is. I’m just wanting the quality of her care to be optimum, and for the target to be rightly aimed.
I just had that nag inside me. Do you know what I mean?Thank you for letting me…vent. I think that’s all I’m going to be able to do.
So sorry to hear of the delay in the diagnosis of your mother. Was a biopsy of the liver or where ever her tumor is done?
I often wonder if Judy doesn’t have a tumor in her pancreas because of all the symptoms that she has. When I research on-line everything points to that. Does anyone know if the symptoms for CC and pancreatic cancer the same? Or if CC spreads to the pancreas do you still have the same symptoms?
We have learned that sometimes the family is the best advocate for the patient, if the patient can’t be. So, if you don’t feel right about something keeping pushing and demanding answers.
Dear Daughter, WELCOME to our WONDERFUL Family! Sorry to hear about your Mother and you certainly have your hands full. The best suggestion I can make to you is to get another opinion, it is your right. As long as something does not sound right to you it probably is not. Listen to your gut, it will not steer you wrong. Ask away that is why we are here and no question is dumb!
We also have a Search engine at the top of the page. Just type in a word and many posts will appear. It is a hard diagnosis either way but once you read up, once you feel secure with a doctor and once a game plan is put in to practice, everything changes for you for the better. May I ask where you/mother live? Good luck and please keep us posted.My mother had begun with symptoms in late spring of 2009 and went to her general physician, wasted a few months of blind GI prescribing before finally being directed to a specialist of some manner, and then under the care of an Oncologist.
After various scanning, blood work and whatever else they’ve done to her, she was diagnosed with pancreatic cancer, though the mass (only one site showing activity and of concern) was found to be located outside the pancreas (but somehow in contact), unfortunately entangled within the Celiac Plexus.
Though not said, by my researching I was able to understand this rendered her irresectable.In the conferences, her caregivers only speak of, as a goal, shrinking, not of cure or surgery – or palliative treatments.
Since then, she has endured several forms of chemotherapy, recently had masses removed from her ovaries (and the ovaries)…all the while, this being called pancreatic cancer.Now, after a biopsy of the tissues removed and re-evaluating the success/failure of her various treatments, her Oncologist (in constant communication with Sloan-Kettering) has decided this is instead Cholangiocarcinoma.
I am only able to gather this information by long-distance and fractured conversations,, and am quite frustrated by the “guessing”…and lack of discussion between them; doctor and patient. Part of this is my parents ability to participate, willingness to do so…not knowing or afraid to ask.
And I am outside, trying not to be pushy or ignorant.
With either disease, her prognosis would be grim – if the doctor were to make such a determination – but I’m stuck right now on the diagnosis. Something doesn’t sit well with me, and I don’t know…it’s not denial.
Trust of the profession and lack there-of, perhaps.I’ll be here to read about everyone’s progress and trial. I’m not certain I have enough solid information to ask questions…
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