Scan results for my mum…confused and annoyed
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Hi Jemima,
Glad to hear that you were able to get your mums scans looked at again, and that the news surrounding the pancreas was not as what had been told to you previously.
Hoping that you mum has a good 2 weeks off from the chemo and that she enjoys the break.
Best wishes to you and your mum,
Gavin
Jemima…..It is nice to hear that the apparent metasteses appears to be a cyst and the original diagnoses of Klatskin tumor stands,. Although, the left side of the liver continues to atrophy, the right side appears to be healthy; all good news. Wow…the time for a break has come at the right time. Enjoy.
Best wishes,
MarionHi Jemima,
I’m so glad you’ve finally got some answers, and positive ones too. The fact that it’s a cyst is great news but they really shouldn’t have put you through the last few days thinking it was pancreas cancer/primary.
We were told that having chemo we would be looking at keeping the tumor the same size, a reduction would be a bonus. So the chemo is doing the job, which is fantastic news.
I suppose your Moms tumor being so small it is hard to see on CT scans but it’s still frustrating.
I hope you Moms WBC manages to return to normal ready for her next chemo. I’m sure the 2 weeks rest will do her good though and enable her to get back on her feet.
Thinking of you
hugs
Andrea
Wow, Jemima, what an up and down, in and out ordeal. Hoping for Mom’s WCB to get back up there so she can get the results she needs. Perhaps the little break will be a much needed one for everyone.
Well, finally some sense out of someone in the hospital ! I got mum’s consultant to look at the scans with a senior radiologist and they compared them to the scans from Paris.
Basically the lesion on the pancreas that the latest report said was a primary tumour is actually just a cyst and it was present on previous scans !
The latest scan does not show the Klatskin tumour very well (wasn’t that the point of the scan ?) but as far as he can see it looks about the same size as the Paris scan.
So not the positive reduction in size that we were hoping for but I guess at least no growth is a good thing.
The left side of Mum’s liver is continuing to atrophy but the right side still looks OK.
It was reassuring to have someone that I trust look at it all and it just shows what a difference it makes having someone decent look at it.On the downside Mum couldn’t have her chemo yesterday as her WBC count is down to 1. This is the first time it has happened since she started nearly 3 months ago so I guess it is not bad going. She is having 2 weeks off and then they will try again.
best wishes to all
Jemima
Thank you everyone.
Basically Mum was first diagnosed back in february with a Klatskin tumour. No biopsy was done as when she was having her first stent fitted they did not have a biopsy brush available !
So from the scans etc they said she had a Klatskin tumour although it was more in the left duct than the right. Hence the left side of her liver is very atrophied. They said she probably had the tumour for a long time for that level of atrophy….. so, why is the tumour in her bile duct a secondary/metatisis (sp?) and the one on her pancreas, which they have only just found and is small, is the primary. It makes no sense to me, but then nothing about this disease does.I need to phone the hospital tomorrow and have a proper talk with them. I just have so many other things going on though that I am finding it hard to do everything.
To make things worse (or maybe it makes it better for her) mum has told my brothers that the oncologist has said that her tumour is smaller. She’s not lying to them, I think that she thinks that’s what was said. I haven’t said anything to her to the contrary.
Hugs to you all
Jemima
Hi Varun….so nice to hear from you. I am so happy to see you staying involved on the board, as you have much knowledge to share.
Regarding pancreatic cancer; we don’t want that one either. It occurs 40 times more often than our cancer and in most instances similar therapeutics is used. The response rate is dismal. I have found for our cancer to still be the better one to have although, I can’t wait for the day for both cancers to have early detection methods in place and for a cure to be found.
Hugs are coming your way.
MarionJemima,
If the primary tumor is in the pancreas, then it’s pancreatic cancer and not cholangiocarcinoma.. If it is, then pancreatic cancer can be reversed completely with chemotherapy.. That’s what I’ve read!
Varun
Oh, Jemima, as IF this is not all hard enough to digest we have to have blocked roads. I would only repeat all that has been said above except to tell you to hang strong and listen to your gut and do what it tells you to do. Best of luck to you and your Mum.
Hi Jemima,
Nothing wrong with having a ramble so please don’t feel the need to apologise for that! When the onc told your mum about the lesion or growth on the pancreas and that they thought it might be the primary tumour, did they say how certain they were that they thought that might be the primary tumour?
Perhaps it may be worth contacting the doctor in Paris again to see about whether or not your mum could be seen by him again? How does your mum feel about what happened today and what does she want to do?
My best wishes to you and your mum,
Gavin
I have been told that primary adenocarcinoma and metastasized adenocarcinoma are not always distinguishable. Certainly, the biopsy will identify only one, as in this case, adenocarcinoma. Chemotherapy options are very similar. Just puzzled by the Klatskin diagnoses.
Best wishes,
Marionmarions wrote:Jemima….I am confused also. Primary on pancreas is “pancreatic cancer” at least that is how I understand it. So where is the Klatskin fitting in? Or, does he mean that CC has metastasized to the pancreas?Did your Mom have a biopsy? I may be wrong but if the pancreas was the primary cancer wouldn’t the biopsy show this. My friends mom had ovarian cancer that was first found in the bowel, when they took a biopsy that is when they realised it was a secondary in the bowel and the primary was in fact ovarian.
Hi Jemima,
I can understand your frustration. Simple questions that should be so easy to answer, aren’t being.
Surely they should compare how much the tumor has shrunk, even if it was for pallative reasons it would still be nice to know if there had been any change. BUT like you have said surgery could perhaps be an option if it has.
As for them thinking the primary is in the pancreas, well thinking is not good enough, they really should know. I’m sorry I can’t help with this, hopefully someone else can. Perhaps you could write all your questions down and arrange an appointment with your Moms consultant. From past experience Oncologists just seem to be in their own ‘treatment’ bubble and I think they would admit for more in depth answers the consultant would probably be better to talk to. That is just talking from experience with Dads oncologist though, he didn’t even know the name of Dads tumor position!
The good news is that the chemo is continuing so they must think it’s working, we were told they wouldn’t continue if they didn’t think it was working. Unfortunatley we never got to find out this.
I hope you get your answers soon, and I hope your Mom continues to cope well with the chemo.
Hugs
Andrea
Jemima….I am confused also. Primary on pancreas is “pancreatic cancer” at least that is how I understand it. So where is the Klatskin fitting in? Or, does he mean that CC has metastasized to the pancreas?
Well, we finally got the scan results for my mum’s first CT scan since starting chemo in late August.
The oncologist told us that the main thing was that they have found a small lesion or growth on her pancreas and they think this might be the primary tumour.
Also, that the dilation in her liver and bile ducts is due to lymph node involvement…they think.It was such an unsatisfactory meeting. They have never mentioned the seeing anything on her pancreas before. I know that sometimes they can miss things but surely if it was the primary cancer there should have been something ?
So I asked the oncologist if I could read the report which says that the Klatskin tumour is 1.6cm which I think is smaller than what they previously found (haven’t had time to check mum’s file yet). When I asked whether they had compared these scans with previous scans they said no. NO!!! Surely that is the whole point ? To see whether the chemo has had any effect ?
They said they were just aiming for palliative chemo and that since Mum is tolerating it well they would carry on…..
In a very controlled manner I said that we were aiming for something a bit better and that I wanted them to compare scans as the doctor we saw in Paris said that if the chemo had a positive effect then he would like to see mum back there again so re-assess her as she was only just a no for surgery back in July. Even if it’s a no again then Mum should be given the chance to try for that.
I don’t even know what the tumour on her pancreas means in terms of possible surgery ? I guess it means that it would be much more complicated ?
Sorry for the long ramble, I haven’t put my thoughts down very well but I am just so annoyed that they didn’t even do the basics, and that they are not fighting for my mum…
Is there anything that I should be asking now that the pancreas is involved ? It seems like having to start all over again learning and coping with something new.
Jemima
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