new to site and hoping for some answers

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

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  • #75318
    patzel
    Member

    update:

    won’t be before another week is over until the MDT meets again, until then no further information.

    But my thoughts are going round in circles which brings me to perhaps strange ideas:
    is it possible (theoretically) that the bone met (possibly also the nodules in the lung where we still don’t know whether they are malignant, could be benign and not be associated with the CC) we have to deal with was surgery-induced?
    Just from a logical point of view: the CC was caught early (more or less by coincidence and before showing any symptoms) and therefore resection was possible. Bone met didn’t show up on earlier follow-up scans.
    Can it be that the surgery contributed to single cancer cells being detached from the original site and swept away to form distant metastases?

    If this was theoretically possible would then adjuvant chemotherapy after surgery perhaps have been the correct approach to prevent (or at least minimize the risk of) forming of metastases?

    As far as I have read through many posts here it seems to be the usual approach in the US to offer (systemic) chemotherapy after surgery/resection (I wonder why). This is not the case in UK. Survival rates in UK are poorer when starting to compare statistics.

    Does anybody have any suggestions?

    #75317
    patzel
    Member

    when I took my boyfriend to the doctor on Friday due to severe problems with pain management we were told by the GP that the PET scan had been cancelled. GP only got this information because he tried to find out for us when this scan was going to happen, so much about information supplied by the cancer team in the hospital. Even with the GP communication seems only to happen when the GP puts pressure on.
    Obviously the findings from the scintigraphy and the additional thorax x-ray have confirmed the met on the rib. (Whether the PET has been cancelled due to this or due to the costs which the NHS might not be happy with I don’t know, but there is one small good thing to it: he doesn’t have to go through another investigative procedure and additional waiting time.)
    The report letter doesn’t say anything about soft tissue involvement so far, but the local swelling which has multiplied in size within the last two months indicates just that.
    Additionally the incisional hernia starts to cause problems. This was going to be fixed by surgery on short term but I think this might have to be postponed for the time being to get other treatments started.
    Now we are waiting for the MDT to get back to the GP with information about what therapies they suggest. I just hope we finally get more background information to decide which treatment does make sense. I’d rather prefer cyber knife technique (if it is possible in his case) than systemic chemotherapy which seems to cause panic in him when only mentioned.

    He was absolutely devastated due to the news because until we went to see the GP he was still hoping it might be something more trivial like an infection.

    The only good news for the moment is that the new painkillers the GP put him on seem to work without all the side effects the other ones caused. So although he is not pain-free the vicious circle of having unbearable constant pain seems to be broken through.

    #75316
    clarem
    Participant

    Oh I am sorry – I need to stop typing on the ipad. Too many mistakes.

    #75311
    patzel
    Member
    clarem wrote:
    your boyfriends husband

    you’ve managed to make me smile there which doesn’t happen often these days… don’t think he has a husband (you meant the consultant I suppose)

    We are waiting for this PET scan appointment and this will be when I would like to take the chance for a chat with the consultant. Don’t think they have a plan in this case.
    He has seen the GP yesterday to get his health records (my thought was they could communicate with the consultant to get them) but he obviously has to submit a formal request in writing. Besides the NHS charges for having access to your own health records which I think is unbelievable. GP wasn’t of much help there, obviously there is almost no cummunication between her and the consultant.

    I can’t see why being in a rural setting can be of any disadvantage when it comes to communication. Not nowadays where everything could be sent via telefax, email, images can be saved on CDs etc.
    It is a problem for appointments with consultants though due to travelling.

    If I were to contact the consultant on my own account I doubt that I would get any answers. Since we are not married the consultant would not have to tell me anything. And my boyfriend seems to be more than undecided. There are days when I think he just doesn’t want to know exactly what is going on and some other days he wants to know or would rather have me know to give him the support he needs or only give him the information he can cope with. This does complicate the situation additionally.


    @Pattimelt

    sorry to hear that also you had these experiences with delays in treatment. But I think CC is not that rare anymore so that doctors have the excuse of not knowing what to do. I’ve read so many articles in medical journals recently and it seems that with this type of cancer case numbers are increasing.

    #75315
    clarem
    Participant

    Patzel, can you contact your boyfriends husband and request an appointment to go through the results and a plan? Or your boyfriends GP can arrange this? Doctors talk to each other and the GP should be able to help push this along for you. My feeling is this should be from the consultant, not his GP as by her own admission, she is struggling to answer questions but the two of them should be communicating – particularly in a rural setting where logistics make everything more challenging. Perhaps my sister was lucky. Her care was outstanding. I worried that being in a rural area her care would be disadvantaged and before we met her consultant, I wanted her treated in Glasgow or Edinburgh. How wrong was I! I can’t speak highly enough of the team at Raigmore in Inverness.

    #75314
    pattimelt
    Participant

    Waiting does seem to be what us cc patients go through. My tumor was seen in Sept. a year ago when I was in the hospital for diverticulitis. I didn’t have any treatment until Feb. 2013! 5 months!! I had to have a CT scan then a biopsy & then after diagnosis confirmed that it was cc I had to wait for a referral to see my oncologist then she referred me to go to UCI where she thought they could treat me because of cc being so rare. I saw a surgeon at UCI but he said because of the size & location of my tumor surgery wouldn’t be possible. So he sent me to the radiology dept. where I had 2 radioembolization treatments. After that didn’t shrink the tumor I was sent back to my regular oncologist where I am now on my 2nd type of chemo! We only have an HMO so waiting for all the authorizations has been difficult. Because this is so rare I think most doctors don’t know what to do. That is why seeing a doctor at a Cancer center hospital is the best route to take.

    #75313
    patzel
    Member

    No, he was told that perhaps adjuvant chemotherapy might be needed but so far no more informations have been given.
    All “information” is filtered by the GP who has finally admitted that she’s not an oncologist (what a surprise she should have realised that before) and can therefore only pass on limited informations.

    Should treatment not start asap instead of waiting all the time for further tests?

    When my mum was diagnosed with breast cancer 21 years ago she underwent surgery within a week from diagnosis and had regular follow ups every 3 months. Now she’s only got to have check-ups every year. Yes, this was a different type of cancer but still I think in my boyfriend’s case the doctors are negligent.
    What worries me most: what if they find out that it has spread too far and that there was too much time lost for treatment? Thoughts are going round in circles…

    #75312
    patzel
    Member

    since the scintigraphy has shown that according to the doctors there “might be” metastases to the bones he will have another scan, this time a PET scan. Don’t know the date yet, why does it always take so long to get the needed tests done?
    In my opinion they should have done a PET scan or an MRI instead of the scintigraphy in the first place…
    still haven’t got the full results of the scinti and also no results for a thorax X-ray.
    How come it always take so long to get ANY results?
    I am knackered, I think the worst is that waiting time where you have to fight all these worrying thoughts going rollercoaster. How can one decide on any plans about future treatment options if one just doesn’t get the informations?

    #75310
    clarem
    Participant

    Good for you Patzel. I’m glad you mention that there is a MDT involved too. Forge ahead now with the information you have and keep pushing them. It shouldn’t be this way but if if it takes you to drive this forward and keep momentum then for now at least you might get some answers so you can decide your next plan.

    #75309
    patzel
    Member

    Hi Clare,

    that’s the same questions we ask. Why did the consultant not speak to him? Why did nobody ever take the time to explain anything to him? Whenever he tried to get information they send a junior doctor round to tell him they couldn’t tell him anything because they were not involved.
    No, they did not just hand over results. We insisted to have at least some more information. The medical terminology is not a problem for me although I am more familiar with veterinary medicine. But the terminology is the same.
    My boyfriend’s consultant has not communicated with him since the surgery, so to get the records is our only chance to find out what’s happening.
    His new scan results are now due on Tuesday next week and will be discussed in a multidisciplinary team meeting. In a letter to the GP it says that the patient is going to be informed about the MDT’s decision.
    Those teams are supposed to give recommendations for treatment and/or further means of investigating. The decision of what’s eventually done has to be the patient’s.
    Whether the concultant is specialised in CC? I wish I knew. Unfortunately he has never given any information whatsoever to his patient.
    But we are going to find out. The next week will be a busy one.

    #75308
    clarem
    Participant

    Hi Patzel,

    Something is missing here. Why after the scan was your boyfriend not followed up with an appointment to see his consultant and get the results of the scan? It is all well and good any patient being given a copy of their results or indeed entire medical notes but the results need to be explained and discussed. Medical reports and terminology is a whole other language and giving results to patients is not an acceptable way of communicating in my book. It’s one reason why I’m not in favour of patients being given reports and scans before a doctor can fully explain it.

    I’m sorry to fire another question at you but is your boyfriend under a consultant at Aberdeen Royal that is specialised in CC? You’ve mentioned you live on an island. My sister lived in the rural north of Scotland – her consultant still found ways to communicate with her when visiting the hospital was logistically not possible.

    #75307
    pcl1029
    Member

    Hi,
    Lets wait until the scintigraphy which might be looked at by a consultant beginning of next week to see what the result first.
    Cholangiocarcinoma(CCA) usually is an aggressive but slow growing tumor; what I mean is the final outcome of this disease is not what we can hope for at this point in time (ie: a CURE);but time may be on our side if we can hang in there for the next 5-7 years when a drug can be found using genomics as a guiding tool.
    CCA is “a tough to swallow cancer” even if you have the chance to treat the tumor at an early stage. The hard to swallow part is that no matter what you do, the recurrence is always a real problem that patient,like myself, cannot be ignored.And being living in fear of such make patient’s lives ,both physical and mental,much more difficult to bear. the only thing that we can help our self is keep our knowledge uptodate and seek treatments that can prolong our lives in time for the cure.
    God bless.

    #75306
    patzel
    Member

    my boyfriends CT scan report was issued on the 30th of June, 5 days after the scan was done. Although we rang them up a couple of times in July to get informations or results we were told it could take some time, which was definitely a lie due to the report having been issued already.
    After threatening them with an official complaint they finally sent the result via telefax to our GP on the 31st of July, a full month later. And this only because we insisted. GP then handed over a copy to us where he’s underlined what he thought might be the important things.

    More than another month later (today) he had the scintigraphy which might be looked at by a consultant beginning of next week (if we are lucky, could be next month according to our experiences).
    This evening he was discharged from hospital, is still in the same agony as when he went in and still doesn’t know what exactly is causing this pain.
    Talk to the GI consultant? He’s not even seen the chap.
    Talk to our island GPs? Well I have seen what they underlined in the report and it was not the relevant issues. So it appears to me that they are obviously not able to interpret the result accordingly and recommend any further steps.

    #75305
    patzel
    Member

    @ Clare
    it’s Aberdeen Royal Infirmary where he’s been treated.

    Yes it does need some time to get used to the NHS again…
    have lived the past 16 years in Germany with private insurance so it could well be that this does make a difference.

    My own experiences with the NHS were brilliant, I only needed medical assistance once and that was just a (planned) cesarean section so nothing which could be compared with cancer. It was an island hospital but I was perfectly looked after and could not complain about a lack of communication. On the contrary doctors and nurses explained everything the evening before and took their time. And when my son developed jaunice it was taken care of. And we had a very competent GP on the island. So the NHS can provide excellent services.

    But in my opinion it does make a difference whether a young healthy woman is about to have a child or whether an elderly man has a rare(ish) form of cancer and might be running out of time. So for him communication and information about treatment options are essential and it makes me sad that we have to fight for this.

    #75304
    gavin
    Moderator

    Hi Patzel,

    Welcome to the site. Sorry that you have had to find us all here and I am sorry also to hear what your boyfriend is going through. But I am glad that you’ve joined us all here as you are in the right place for support and help and I know you’ll get loads of each from everyone here.

    Like Clare, Lainy and Percy have said, I am from Dundee and my dad was diagnosed and treated here at Ninewells in 2008. He also received his scans, consultant meetings and other care from his GP locally here in Dundee as well. I find it strange to say the least that your boyfriend has only received one CT scan since his surgery last December. My dads scans were done every 3 months after he had his PDT. Like Clare says, scan results are not generally available for consultants to view immediately when a patient receives one as an outpatient and I am assuming that your boyfriends CT in June was done as an outpatient? In my dads case once again all of his scans following his PDT were done as an outpatient and he got the results once he saw his GI consultant a week or so later.

    Personally I would have thought that your boyfriend should have had scans done every 3 months instead of 6, especially so immediately following his initial surgery or other treatment. A GP to the best of my knowledge would not pass comment on CT results to a patient and that would be the role of the consultant. As regards to the poor treatment that you seem to have received regarding information about everything from the GP and hospital team that is not acceptable and my dad never had to go through anything like that. I would suggest that you try and see a different GP and raise all of the points and questions that you have with him/her. How it works here in Dundee is that a patient is a member of the overall practice and is entitled to see and GP in that practice that they wish to see. All patients used to have an individual GP that was responsible for them, but that has changed now and pateints can insist on seeing any GP they like. Perhaps a different one will be of greater help and more forthcoming with information about everything.

    Is the hospital that your boyfriend is being treated at a major hospital such as a teaching hospital, and do you know if the surgeon and medical team at that hospital have much experience in treating patients with CC? Smaller hospitals and teams in smaller hospitals may not be as experienced as those in larger hospitals and that is not just a Scottish issue, it happens all over due to the nature of CC.

    My dad spent 7 weeks in an NHS hospital here in Dundee and during that time his full medical file was at the bottom of his bed for us to read at any time should we wished to do so. His GI consultant was also always there for us to answer any questions that we had alongside his other doctors as well. We had no problems getting detailed info about everything and to be honest, nothing was ever too much trouble for all of my dad medical team.

    Please keep coming back here and keep us updated on how things go for you both, we are here for you.

    My best wishes to you and your boyfriend,

    Gavin

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