recent diagnosis-to seek a second opinion?
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Moonpie1,
You are not clutching at straws. You are doing so well trying to research and find answers for your Mum. There are many unknowns for the doctors treating CC, so for carers and patients it is incredibly hard to start to understand all the information. It sounds like your GP is doing a great job at communicating with you but I am wondering why your mum and you have not had a face to face meeting with her surgeon or a surgeon from the MDT.
All your questions really do need to be asked and explained to you in a way that you and your mum can understand. I feel it is unfair on your GP (who will not be an expert in CC), you and your mum for the GP to be relaying this information. The oncologist will be able to address many issues and probably the one about fast or slow growing cells but may not be as well placed as the surgeon to answer other questions.
When my sister was diagnosed, her surgeon when we met with him to get her plan of attack did say that the brushings very often come back negative and that if this had happened to my sister, her diagnosis would have been missed. Inconclusive brushings are a common. There are other diagnostic tests of which I am no expert but someone else here will be and will chip in. I think if my memory serves me right, imaging can be a problem and does not always give the best picture of what is actually going on internally. It’s another frustration not helping with a reliable, rapid diagnosis. Has your mum had an MRI?
Even although my sisters hospital that she got treated in was 150 miles away from where she lived, her surgeon was very pro-active, communicative and always fighting her corner. He initially got her GP to go to her house and break the news that she had CC but after that he would ring her on a Friday after the MDT meetings to inform her of the decisions that had been made when she was not in the hospital. Even when her surgery had been abandoned, he continued to seek out treatments to help her. Sometimes carers and patients need to be a step ahead and keep the pressure on. It is not right and you should not need to fight but as Lainy said, I would keep going until you satisfied that you and your Mum understand why certain treatments are not possible.
I’m not sure if you’ve found the guidelines for diagnosis and treatment of CC are on the AMMF website – I have put the link below from the website page below in case you haven’t. Scroll down the page and the link to the document is there.
http://www.ammf.org.uk/cholangiocarcinoma/guidelines-for-diagnosis-and-treatment-uk/
Moonpie, you are doing a fabulous job of investigating. After all you have done, this may sound crazy but I live by 1 rule since my Husband had his CC and that is to listen to your gut, mine has not steered me wrong. Right now my gut is telling me that you might need another Team opinion. We strongly believe in 2nd and 3rd opinions and then you have more choices to make your decisions. It seems as though there are too many yeses and no’s going on here. If you are comfortable that no surgery will be done due to her other health problems that narrows it all down to Palliative Care but again the treatment depends on the diagnosis. I am not comfortable with their attitude and I am not sure they are steering you right. So sorry, but I have to call them as I see them. Again you might want to ask what the options are and how each one may help. Best of luck!
Hello all, I have recently joined the forum as my mum has very recently been diagnosed with cholangiocarcinoma in the bile duct.
I have been thinking very hard about what the GP said to me regarding the recent report from the mdt about the diagnosis and have done quite a bit of reading up on here and also looking at journal articles in the field.
basically the gp explained to me that the mdt -well two teams together really, came to the conclusion that mums bile duct stricture which was distally located is a malignant type and said it is typical of cholangiocarcinoma,
blood tests were done, ultrasound, ct and ercp with brushings were done. the gp then said that the mdt first line of action would be a whipple procedure followed by chemo however due to mums preexisiting health she is not suitable for any major surgery and they have only offered chemotherapy as an option, but the attitude I got was really that of a take it or leave it approach.the bile duct brushings from the ERCP came back inconclusive and I pressed the dr about this and she thinks its because it didn’t pick up enough cells, I asked her why they thought it was malignant and she said because the length of the stricture is significantly longer than would be found in benign strictures, she said the height of the stricture was also a factor and she said about the fact that it was very uneven along the tube
I have read journals that have said that those factors mentioned above about the length height shape of the stricture can help indicate malignancy or benign however it doesn’t tell us that it is DEFINITELY a cholangiocarcinoma or some other type of cancer-maybe pancreatic or secondary? what also hasn’t been explained to us is whether the cells are fast growing or slow growing,
I understand that if I press them and mum agrees to further testing, if they did an actual tissue biopsy, the result may come back as what they suspected it to be , but it may help develop a better plan for chemo? I don’t know whether it would be worth pushing them to confirm malignancy and determine the type or whether I should just accept what they are saying and go ahead with the plans the oncologist may have. I think I am just trying to be as informed as I know that whilst mum is being positive, mum and dad wont think of these questions nor ask them.
I think that maybe I am clutching at straws as I know that if it is definitely cancer whether it be slow or fast growing, cholangiocarcinoma or something else, mum cant have surgery, so any treatment will really be for slowing down growth, containing symptoms for as long as possible.
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