Topic: new to site and hoping for some answers

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?

Re: new to site and hoping for some answers

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.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: new to site and hoping for some answers

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

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: new to site and hoping for some answers

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.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: new to site and hoping for some answers

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?

Re: new to site and hoping for some answers

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.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: new to site and hoping for some answers

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.

Clare

In the stars now . . . .

Re: new to site and hoping for some answers

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.

9 (edited by PCL1029 Fri, 06 Sep 2013 13:49:24)

Re: new to site and hoping for some answers

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 … 542#p56542

http://www.cholangiocarcinoma.org/punbb … 480#p74480
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: new to site and hoping for some answers

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.

Clare

In the stars now . . . .

Re: new to site and hoping for some answers

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.

Re: new to site and hoping for some answers

Where did he get his surgery?

Clare

In the stars now . . . .

13 (edited by PCL1029 Fri, 06 Sep 2013 13:43:13)

Re: new to site and hoping for some answers

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.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: new to site and hoping for some answers

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

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: new to site and hoping for some answers

@ 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.

Re: new to site and hoping for some answers

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.

Re: new to site and hoping for some answers

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.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: new to site and hoping for some answers

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.

Clare

In the stars now . . . .

Re: new to site and hoping for some answers

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.

Re: new to site and hoping for some answers

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.

Clare

In the stars now . . . .

Re: new to site and hoping for some answers

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?

Re: new to site and hoping for some answers

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...

Re: new to site and hoping for some answers

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.

Re: new to site and hoping for some answers

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.

Clare

In the stars now . . . .

Re: new to site and hoping for some answers

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.