Can’t get head round it all
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- This topic has 9 replies, 7 voices, and was last updated 13 years, 11 months ago by isellure.
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December 15, 2010 at 12:52 am #45535isellureMember
Hi Chelle. This sounds similiar to what my MIL was told. She didn’t feel good for about 2 weeks. Went to see her dr and put into the hospital, she had slight jaundice. Three days later they did a needle biopsy but no cancer found, but dr’s said they felt sure it was CC. So a week in the hospital, came home and waited a week to get to go to Mayo Jacksonville. Test immediately and then the stent – the stent gave her life back to her in our eyes. Diagnosis CC. They told her 6 months…3 months later they say 3 months. We are not at 4 months after initial diagnosis and absolute NO signs of CC except for tiring easily in the afternoon. So, I am going to keep praying and hoping she stays like this forever. I hope that your mom is doing well today and that she can just prove the dr’s wrong on their time and you have some time with her, some time to adjust and some time to digest all this. I am so sorry to hear you have had to join our group, but I can tell you that you will learn so much on here, answers to so many questions and a super group to lean on for support.
December 14, 2010 at 1:38 am #45534kimcirucciSpectatorChelle, I don’t know exactly what is going on with your mom, but if you read my post on the discussion board “My inspirational story” hopefully it will bring you some inspiration. There is a dr in New York, Dr. Kato, who performed surgery on me when no one else would touch me. He is an angel & the most amazing dr I’ve ever met. If I can help you, or give you any further info, please let me know. Tell your mom to fight with everything she has. She has the power to conquer this horrific disease. I did & I will pray that she can too. Prayers & thoughts from me to you. Good luck!!
December 14, 2010 at 1:25 am #45533childlikehopeSpectatorI was hoping we were alone in getting conflicting statements and the run around. I am sorry your mom and you are having issues with this as well.
Perhaps, it happens at lot in the beginning and once while they are firming up their diagnosis?
We found out my dh had *liver* cancer 11/10. No other cancer reported. The oncologist recommend surgery and sent us up to Atlanta for that and said with surgery dh would be alright. A week later in Atlanta they tell us surgery isn’t an option, we could hope for 2 years but they couldn’t put a date on it and hint they are looking at interheptic CC, but we were set up for radiation. Met that doc and he said we should be getting an appoint for the test (prior to the treatment) the following week. Lots of scans & blood work done in the following week (including a PET). Now they don’t know what kind of cancer and would get another biopsy. A week more… we’re told he has mets on his spine and they thought that conflicted with the CC, but now I think they finally think it truly is CC because radiology called and said they could fit us in the first week in Jan. So Friday… maybe the oncologist here will let us know where we are at now and who knows if that will hold for next week.
It may just be differing doctors conflicting on diagnosis. I know it is stressful. But once you and your mom (and dh and I) get a firm plan in place it will get easier. Hold on. It’s a rollercoaster.
I believe in hoping for the best hope given. Keep asking questions… eventually we’ll nail some answers down.
Good luck & best wishes, Lisa
December 14, 2010 at 1:23 am #45532marionsModeratorChelle…..I am puzzled also. I have been told that the above test results should be sufficient enough for diagnoses of CC. Is it possible that your Mom had been told it to be pancreatic cancer all along?
It appears that your Mum is trying to shelter you from bad news or, that she is not able to comprehend the information given. That is understandable. She is not feeling well and possibly, she is overwhelmed with all that is happening. Given the circumstances she may allow you to speak with the physicians, as they are the only reliable source of information. Please, keep us posted. We care.
I am sending all my best wishes your way,
MarionDecember 13, 2010 at 11:05 pm #45531mamamiaSpectatorthanks marions. What needs to be done to make everything conclusive? Which tests etc should be done if any that haven’t already.
So far an:
ultrasound
CT scan
Blood tests
Stent
brushing have been done to give us the diagnosis we have at present.Thanks for taking time to respond.
Hope you are all well
Chelle
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December 13, 2010 at 10:42 pm #45530marionsModeratorChelle…I agree with Bazel in that the information given so far is not conclusive. I also agree that your Mom will need another set of ears during her discussions with the physician. The upcoming biopsy will bring along much needed clarificiation. Until then please, stay strong and hopeful. We are with you all the way.
Best wishes,
MarionDecember 13, 2010 at 10:33 pm #45529mamamiaSpectatorThanks so much for your replies.
Sorry, i kind of just went off on one there without giving much info didn’t I !!
Well, it was about 3 weeks ago that we first found out that mum had tumour. She had been feeling unwell for a few weeks prior, but her own doctor thought nit was indegestion, and gaver her anti acids. Then after these having no effect, then jaundice set in, the doctor realised more was going on.
As i said it was about 3 weeks since tumor was diagnosed, then they done stent to relieve jaundice, which has helped immensely. They did a brushing at time of stent and confirmed cancer of pancreas and bile ducts. It was said to be inoperable, and that chemo was not an option.
Mum has been out of hospital just over a week now, and eating fairly well, though is having diarrhea after everything almost.
Other symptoms:
pain mainly (below left ribs, occasionally on left (no pain in back like many of you here)
Jaundice (though does seem better after stent)
low sodium?
around eyes look very dark
tiredness
nausea
burping (a lot)Chelle
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December 13, 2010 at 8:51 pm #45528BazelSpectatorChelle,
Take a deep breath and then start at the beginning if possible.
It sounds like you have some pretty conflicting information on your hands.
Your mom is likely in shock and not hearing the full details being provided by her doctors. Is anyone else going with her to her appointments? Is it possible for you or another family member to call in to her next appointment so that you can listen to the doctors and ask clarifying questions?What options do you have to try and coordinate a second opinion?
If it has been said once, it’s been said hundreds of times on this site … no one has an expiration date stamped on their foot. I know you’ve posted other information about your mom (but I don’t recall the details, my apologies), but what symptoms does she have that would cause the doctors to give such a grave diagnosis? And more importantly, what are the doctors doing to manage any symptoms she may be having?
It is hard to care for someone so deeply and not be able to be there to hear first hand what the doctors have to say. I know I found this site invaluable (and still do). Keep on posting your concerns and others will chime in.
Bz
December 13, 2010 at 7:04 pm #45527jennifersMemberI can’t really comment on having the same experience, but I am so sorry for what you are all going through.
Please know that I (and so many others, I’m sure) will be sending very positive thoughts your way, and praying that you will have an amazing Christmas with your Mom by your side…
Hugs and well wishes…
Jen
December 13, 2010 at 6:18 pm #4472mamamiaSpectatorHi everyone, hope you are all having a good day, or as good as it gets!!
My mum had a phone call from hospital today. The consultants had a meeting on Friday which went fairly well, but i just don’t understand it all.
My mum broke down on the phone telling me they are going to do a biopsy under sedation on Thursday this week. They did a brushing 2 weeks ago which told us it was cancer. Now another biopsy? they will then see if my mum can possibly get chemo, which was ruled out before meeting.
My mum told me today that she has been told it is pancreatic cancer and is in the bile ducts joining pancreas and liver. Unknown to me before today, she has been told she would be lucky to survive until christmas. I can’t believe it all. How can we go from 2 weeks survival to then being told chemo is an option. Have they missed something, is there hope now?
I am aware that if chemo is given it is only to give my mum time, noit to be a cure. But 2 weeks is heart breaking when on the outside she looks so well. The last thing i want is for chemo to make my mum so ill, that it strips away the goodness that she has, but of course i want her here as long as possible.
Thanks for your support everyone, if anyone has had this experience, what was the outcome for you?
ThanksChelle
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