new to site and hoping for some answers

Discussion Board Forums Introductions! new to site and hoping for some answers

Viewing 13 posts - 16 through 28 (of 28 total)
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  • #75303
    pcl1029
    Member

    Hi,

    The one in June will be fine. and is your boyfriend <50 of age?
    and I have just add a link in the previous message for you since knowledge is power.

    I saw someone from Scotland have answered you.

    Keep in touch.
    God bless.

    #75302
    clarem
    Participant

    Where did he get his surgery?

    #75301
    patzel
    Member

    unfortunately we’ve only got a copy of the CT from June.
    I hope the other ones will be included in the file we have asked for.

    He went into hospital with abdominal pain, an exploratory showed a tumor in the liver and the cholangiocarcinoma was “detected” during the surgery.
    Well, this is what the doctor told him but it seems (for me) hard to believe that this was the way it happened. One more reason why I can’t wait to go through all the files.

    #75300
    clarem
    Participant

    Hi Patzel,

    Welcome to the forum and for being a great advocate for your boyfriend. From what you’ve posted, it sounds like you are used to a different medical system to that of the National Health Service (NHS) in Scotland.

    Whilst in theory a doctor can look at a scan and tell you immediately what is seen on it, in reality it tends to be formally reported on by a doctor specialising in imaging before the patient is told the result. It must seem very frustrating when you are used to a system that seems much more efficient. The NHS does not tend to give out copies of reports when they are done but that does not mean your boyfriend is not entitled to it. If he wants copies of everything that has been done up to now then he will need to formally write and ask for these.

    What he absolutely should be getting without having to fight or wait is communication from his doctor and explanations given about his diagnosis, treatments, what the scans are showing, what the lung nodules are and what the plan to do about them. Good communication from his doctor would answer all these questions for you and him and he is perfectly entitled to this and needs to know. Unfortunately the NHS does not always provide the kind of care that patients need, for many, many reasons. I am not saying it is right and you should not have to fight but sometimes, relatives and patients need to quite forceful (I like the squeaky wheel analogy above). On the other hand, the NHS provides excellent care and I have to say, my sisters care from day one could not be faulted. She didn’t have to fight for anything, her doctors communicated with her or me and despite never seeing a report or scan, she/we always knew exactly what was going on with her care.

    Would you mind saying where your boyfriend is being treated? Do you know if he is under a team specialised in dealing with his type of cancer? I can’t emphasise how important that is. Gavin – one of the moderators live in Dundee and I know he will have stacks of advice to give you.

    #75299
    pcl1029
    Member

    Hi,
    On the CT report ,do they tell you the location and size of the tumor?”
    Mets to lung(lung nodules) are not uncommon, but it seems ,in your boy friend’s case shows up quite early as well as the bone pain.The lung can be treated by RFA or microwave ablation .
    I presume he has intrahepatic CCA if tumor presented in the liver;
    to have chemotherapy or not after liver resection is still a debatable hot topic but it seems most of the doctors in the STATES will give adjuvant chemotherapy to follow after resection.
    Extrahepatic CCA mostly grow alongside of the left or right or the common bile ducts.Did your boyfriend has jaundice as symptom and how he discover he has invasive CCA.
    If you don’t mind direct quote from the CT report will be most helpful .

    the following link may be of interest to you .
    About ultrasound, CT ,MRI and PET scan

    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=56542#p56542

    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=74480#p74480
    God bless.

    #75298
    patzel
    Member
    PCL1029 wrote:
    Hi, Patzel,
    May I ask how old is your boy friend?

    66

    PCL1029 wrote:
    1. the Primary diagnosis
    2. the Stage if possible (ie:T1N0M0)
    3. Is the bone pain related to the primary diagnosis?(get a copy of the report)
    4. the Ct scan report.(it will tell you a lot about your friend’s illness.),if you can ,insist to have a copy for yourself or boy friend for future understanding of the progression of the disease.)

    1. invasive cholangiocarcinoma treated by left hepatectomy
    2. not included in documents which were made available to us
    3. (bone) pain started 7 months after surgery (last CT was done 6 months after surgery)
    4. doesn’t show evidence of local recurrence but some nodules in the lungs which were recommended to be checked

    Perhaps someone from Scotland knows why doctors are so reluctant to hand out any documents to the patient? We were told that a request in writing needs to be sent to the hospital to get a copy of all relevant documents, so obviously it’s not enough when the patient asks for it when he’s actually present.
    So far it is planned to continue with the treatment (apart from surgery there has been no further treatment so far) in Scotland also due to the language barrier. But if we are not convinced that everything which is necessary is done we might continue treatment in Germany which would then need to be private.

    #75297
    clarem
    Participant

    Hi Patzel,
    As soon as I’ve put my daughter to bed, I’ll be back on and reply properly. Where in Scotland are you? I’m in Glasgow but mys sister was treated in Inverness.

    #75296
    pcl1029
    Member

    Hi, Patzel,
    May I ask how old is your boy friend? It helps for future treatment decisions.
    And where he will continue the treatment? (Germany or Scotland). Our Gavin is located in Scotland and he is very familiar with the medical system there. He can help you in many ways.(ie; Can your boyfriend get scan every 3 month instead of 6 month or none at all; Will he need chemotherapy or not after resection and how to get the lab work done on an regular basis,every 2-3months for CBC,BMP,Lipid panel,CA19-9 or other biomarkers.)

    For most of the biliary stents replacement ,we are talking about extrahepatic CCA. Since your message stated “taken out and not replaced”, I took the liberty of thinking the other way.
    But my question is to find out “the actual diagnosis” first. If the primary diagnosis is not cholangiocarcinoma but of other kind of liver disease or metastasis from other parts of the body, then it may not provide you any useful info to help you.
    So if you can try to find out the following.
    1. the Primary diagnosis
    2. the Stage if possible (ie:T1N0M0)
    3. Is the bone pain related to the primary diagnosis?(get a copy of the report)
    4. the Ct scan report.(it will tell you a lot about your friend’s illness.),if you can ,insist to have a copy for yourself or boy friend for future understanding of the progression of the disease.)
    God bless.

    #75295
    patzel
    Member

    I wish we knew whether intrahepatic or extrahepatic…
    doctors haven’t told him anything, no explanations whatsoever

    I do insist now on getting the complete patient files handed out including all existing images of CTs etc. to forward this to specialists I trust, these have been looking after my mum who got her cancer diagnosis and surgery 21 years ago and is doing absolutely fine.

    Today there was a bone scan. Usually one gets the results within an hour already checked by a specialist (well that is private care and in Germany). But in his case: they are going to release him from hospital tomorrow morning telling him they “might” look at the images on Monday… he could ring in…in the meantime he was supplied (again) with painkillers

    Sorry to say that but I think it’s an absolute disgrace. How come it’s not taken seriously and the results looked up straightaway?

    #75294
    pcl1029
    Member

    Hi,

    Do you know is it intrahepatic(ICCA) or extrahepatic;
    in some case of ICCA, they can remove the stent which is about 1.5 inches long and as thin as a big tooth pick(0.3mm or so.)
    find out which type of cholangiocarcinnoma.?
    God bless.

    #75293
    kvolland
    Participant

    Dear Patzel – Too quote Lainy welcome to our wonderful family. Sorry you have to join. I would agree that asking questions and asking more questions will get you answers. Remember the squeaky wheel gets greased and quite often you have to be the loud squeaky wheel. You are your BF’s advocate now. Read as much as you can and ask for a second opinion. I don’t know iif you live in a smaller town but it may be time to take a trip to a bigger area where there is a university or teaching hospital. I would think they would need to continue to monitor him closely, especially after taking the stents out and with the pain. Good luck and keep us posted.

    Kvolland

    #75292
    lainy
    Participant

    Dear Patzel, welcome to our wonderful family but sorry you had to find us and sorry to hear about your BF. After surgery there are usually follow up checks like every 3 months with LABS and Scans. I would advise you to get another opinion due to the newer problems that are being ignored. We do have some Members from Scotland and a Moderator from Dundee, Gavin. I know they will come on today and be of help to you. I do believe your questions are good ones and NO one should have to live in that kind of discomfort! Perhaps your BF did not need to be stented after his surgery. I would suggest you write down all/any questions and corner the GP for answers, it is your right to know. In the meantime hang in and Be Strong! Please keep us updated as we truly care.

    #8861
    patzel
    Member

    haven’t got the cancer myself (as far as I know) but my boyfriend has it. He underwent surgery in December last year which included left hepatectomy. A biliary stent was placed.
    What worries me most is that apart from a CT in June there have been no followup checks (no white count, tumor markers, any other checks) although he was having pain and there were indications of other problems associated with his cancer such as fatigue, painfull swelling on bones, coughing and respiratory problems.
    The GP did not seem to take him serious and just handed out strong painkillers.
    Finally after a lot of pressure from our side something is happening (in my opinion perhaps not enough). A scintigraphy will be done today and depending on the outcome there might be further investigations.
    At the same time the stent was taken out but not replaced which is something I don’t really understand. As far as I know biliary stents will be needed permanently to drain the bile produced in the remaining part of the liver into the intestines. They can become blocked and this is why they need to be replaced after a while. Has anybody heard of a situation when a stent was removed but not replaced? No explanation so far given by medical staff.
    Did any of you have problems with getting detailed information? Or is that a problem only known in Scotland where GPs and other doctors don’t seem to be willing to spend time and inform the patients properly?

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