Dear members, thank you to everyone who has help me in the past to find out about this horrible disease whether it was sharing your own experiences or giving practical advice as well as the help I got from Gavin and Helen in getting us in touch with a brilliant consultant.
Sadly my "advocacy" is over now. My boyfriend has ended our relationship after we came back from his radiotherapy (for which we have been fighting so hard).
I am still in the aftermath of this, don't know any reasons why. After all we've been through recently... I thought we were close.
Since he still doesn't know what options one has in the fight against this cancer (because he left all the medical decisions more or less to me) I am rather worried that in future he won't get the care he might be needing. But there is nothing I can do now, feels like grieving although he's doing allright at the moment.
Anyway, I wanted to thank you all for your support and there is one good thing to all this misery: Via this forum I met another patient who is now a dear friend. She'll be undergoing chemo tomorrow and my thoughts are with her.

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(3 replies, posted in General Discussion)

he had a R0 resection (T2,N1 if I remember correctly) a year ago.
He was not offered chemo (not done routinely in UK after a resection).

The therapy he's getting now is radiotherapy for a bone met on the ribs which was caused by "cell seeding" along the drainage. The doctors in Aberdeen were not able to diagnose this bone met in time and when it was finally confirmed they recommended pain killers instead of treatment.
We then seeked advice from a specialist centre down in England where he is being treated now.

The NHS in Scotland refused to pay for his radiotherapy in England but thanks to his brilliant and excellent consultant the costs will be covered otherwise which is just overwhelming and takes a big worry off us.

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(3 replies, posted in General Discussion)

Hello,
I know what you are going through at the moment... we are in a similar situation. I don't know the situation in Holland. We live in Scotland and my boyfriend is having his treatment in England in a specialist centre. Today we received the news that the NHS in Scotland will not fund the treatment in England. Luckily we will get the funding from somewhere else.

Perhaps in your case it would be possible to get in touch with a cancer charity in Holland to get Tom's chemo funded (or partially funded)?
What I cannot understand: if the doctor's advice is that adjuvant chemotherapy is desirable then it should be paid for by the insurance?

I am not a friend of medication at all but there are times when it's needed. My boyfriend has to take the Oxycodone too to control the pain a bone met causes. For a start he only took the 5mg Oxynorm (which are the quick release ones) every 4 - 6 hours and we did in fact have some problems about him being "very keen" on them at the beginning and I had to control the dose he was taking and could not allow him any self service on them. If I had not controlled it he would have taken them after 2 hours... telling me he was in agony whilst dancing and singing in the kitchen.
We even had to admit him to hospital to get a proper pain management without him acting strange sorted out (additionally he developed an infection which complicated things).
But this seems to happen only in very rare cases and the doctor was telling us that in his case it might have been due to the combination of Oxycodone, anti-depressants and sleeping tablets. He felt really funny and also had problems with shallow breathing and wheezing. This combination seemed to be a dangerous one.
Since he is off the anti-depressants and sleeping tablets there are no problems associated with the Oxycodone anymore.
At the moment he is on the Oxycontin (slow release ones) 10mg twice a day and only has to "top-up" some days in between with one of the quick release Oxycodone 5mg. He is coping well and the only side effect is constipation. He is taking linseed in his cereal in the morning and most days this seems to do the job so only sometimes Senokot are needed.

So as long as your mum does not take anti-depressants or sleeping tablets she should be fine with the Oxycodone 5mg.
To cope with constant pain can be very exhausting and one does need pain relief. If she doesn't have a history of drug or alcohol abuse it is extremely unlikely that the will become addicted to it in any way.

I would not cut them in half! The slow release ones (Oxycontin) must not be cut at all (because they would release the ingredients dangerously quick) and the quick release ones are (at least here in the UK) filled capsules which you couldn't really half properly.

If she's allright with the 5mg Oxycodone and wants to lower the dose (if the pain is not too bad) she could perhaps try and increase the time gap to 8 hours. But doctors tend to work out the right dose by titration (hope this is the correct English word for it) which means they start with a certain dose (usually the 4 - 6 hour intervall) which can then be adjusted (higher or lower) depending on the pain relief effect.

thanks to everybody the weather was (sort of) cooperating.
We were on the morning ferry (the afternoon one was cancelled due to adverse weather conditions) and had some rollercoaster flights but managed to get to Manchester without major delays.

The good news: there is a very good chance to kill the beast (the bone met on the rib) with the radiotherapy which is due to start next Monday!
Apart from this there is just one suspicious node which will be monitored in future with quarterly CT scans. It showed up on the PET scan (not very bright though) but might have been due to an infection, so according to the Professor   this is not too much of a worry just now.

The bad news: all that travelling has taken it's toll... so the pain which was under good control flared up after coming home so we had to increase the medication for the moment. Especially the journey home was a long one... got up at 4 a.m. and arrived home at 6 p.m. so even for a healthy person that's some journey.

It is as if this "thing" knew that we are going to fight it next week and it's showing it's teeth for the last time.

Good news today: the Prof is his consultant now!! So we are off to see him this week and radiotherapy will start a week after.
So perhaps the only wish I have for christmas (him to be painfree or at least the closest we can get to this) might come true...

Now we only hope that our ferries will run (last week on 3 occasions there was no ferry due to adverse weather) so that we can catch the plane down south. Will leave a day earlier just to make sure...

but no day without problems...

this might be a very Scottish question: can it be that one has to fight for radiotherapy because doctors seem to think that as long as the painkillers are able to give pain relief radiotherapy is not necessary?
Does anybody consider the side effects and toxicity of long term use of painkillers? It will have a reason that usually one is NOT supposed to take them for longer periods, not even paracetamol or non-steroids. Does all that not count in cancer patients? I know that Scotland has a higher demand for radiotherapy than can at the moment be met due to the lack of linacs.
But this is a problem the NHS has to solve without the patients being the sufferers.
Even palliative radiotherapy (which will not "cure" the cancer) will have an effect on the tumor itself to stop or slow down growth. I don't see it "only" as a method for pain relief.

I just have to vent here and now today... I am so fed up with the NHS at the moment, things have been misdiagnosed, there have been delays, informations have been withheld and it seems in case of a recurrence or metastatic disease one is alone and the efforts of treating the disease are less.
Sorry to say but would the efforts be more if one was still in working age? British surgeons have been complaining about age discrimination in treatment for older cancer patients... I am beginning to believe they have a point there...

an update:
He was released from hospital last Wednesday and is doing fine at home. MacMillan had got a pain management sorted out which worked fine. Two days ago he decided to stop taking the opiods and is just on non-steroids and paracetamol at the moment and still doing fine. I was a bit sceptical about this at the beginning but it turned out to be ok.
So it might have been that the cellulitis contributed so much to the pain. Now since that infection is gone he is a lot better.

Now we are waiting for news about when radiotherapy is going to happen.

@Gavin: Yes, the professor is ionvolved in the case and it seems the hospital consultants lost a little bit of their self-confidence since that happened so they haven't come up with suggestions so far and are obviously waiting for the prof's advice first.
Our problem here in Scotland seems to be that there are guidelines about first cancer treatment waiting times (where the targets set by government still are not reached) but there are none regarding second treatment or recurrence etc., so nothing happens as quick as you would expect it to.

@Kris
I think the two of us are in a very similar position...

He's in the MacMillan ward at the moment (which is the cancer ward) and the nurses are doing a brilliant job. They seem to have worked out a good pain management (still with some opiods but in a dose where he's not dopy and confused anymore and no more hallucinations). It was so good to see him yesterday, painfree and cheerful and looking far more positive in the future than in the last horrible week where he was in a haze and trapped in a vicious circle of either being in agony or doped and confused.
Infection is responding to antibiotics and he is getting the best attention I can ask for being the only patient at the moment in this ward and the 2 nurses caring exclusively for him (and spoiling him with homebaked sweeties).
Due to the winter timetable of our ferries I can't go in today (just the one ferry tonight which takes the kids back to school) but will be on the morning ferry tomorrow.
There would be possibilities to stay in a B & B or with a cancer charity nearby like I have done the first night but I also have 8 horses and a cow  to look after, some small animals and his cat... to hire someone to look after them all is too expensive and therefore reserved for the times when he will be in the bigger hospital on the mainland for the radiotherapy where I can't travel daily.

I managed to get myself "recharged" with a good night's sleep (got up after 10 this morning) and setting the clocks back an hour to winter time has also given me an "extra" hour so I've done some more trivial things today like washing and cleaning which had not been done for a while.

kvolland wrote:

P
Also have they checked his liver function tests or an ammonia level both of which could lead to hallucination and behavior changes.

I have asked them to do that and according to them the results were normal so it must have been the opiods which caused the hallucinations.

@lainy
I would have preferred them to investigate more detailed. But - as I said - this is the NHS and sometimes it seems there are "budget guidelines" which is still difficult for me to cope with since in Germany they investigate health issues not only by "look and feel" but also using lab facilities even in minor situations.

Another problem I have is that he's not telling the medical staff exactly how he feels. When they ask he says he's fine (he'd love to go home) and after they are gone he tells me that he still feels bad. Also he's still confused and dopy although the dose of opiods has been lowered. So the speech is still sometimes slurred. Doctors and nurses might get the impression of a confused elderly gentlemen so it is a hard job to convince them that he's usually absolutely clear and this is not his normal self at the moment.

But now I need to get a few hours sleep, will have to be on the early morning ferry to go over to the hospital again which is a 2.5 hours boat trip one way (same back again in the evening) so I think I should better have a rest.

he's been airlifted with the helicopter to the local hospital on the main island yesterday. Luckily I could come with him so he didn't have to travel alone. GP was still not sure whether it was necessary but agreed when we insisted that he should be admitted.
Hospital said it was the right thing to do and put him on the drip immediately.

@clare
it is around the area where the drain was, but it could not have been a "fresh" infection because that was more than 10 months ago.

Hospital staff think it is cellulitis, did not rule out other possibilites yet but will only perform a biopsy if they are not happy with the response to the antibiotics. In other coutries they do a routine biopsy to find out which particular bacterium caused the infection just to make sure they got the right antibiotics but under the NHS this is not done as a routine.
So far there seems to be a positive response to it but considered he's been on oral penicillin for 1.5 days and now on iv penicillin for another 1.5 days I would have expected a bit more of a response.

So at the moment they are trying to sort out his pain management and hope with the infection going back that the opioid dose can be lowered (because he seem to get a hang of it).

Finally also Aberdeen must have come up with a treatment plan or at least they are discussing it according to the information of the local hospital staff. They are thinking of either bisphosphonates or radiotherapy.

So I need to find out now what will be the best option and what sort of radiotherapy might be possible. And I hope whatever it will be that it has not too many side effects, I don't think he could cope with too many more problems at the moment.

I agree with you all, also does the nurse who came round today.
Unfortunately GP doesn`t think he should be admitted as long as he`s looked after at home. He is convinced the antibiotics should be sufficient to keep the infection at bay and has lowered the dose of the opiods. Well, the latter I agree with to hopefully minimize the hallucinations. But I am not so sure about the infection...
It`s not easy to just go to the hospital if you live on a remote island. The only way would be to airlift him with a helicopter. And this can only be organised by the GP.
In the meantime (during this night) I can only keep an eye on him and if there is any worsening to call the GP again in order to get the helicopter (gale force winds tonight so this might be some task)...

has anybody experienced a similar situation:
right under the swelling of a painfull rib met an (internal) infection must have occurred, swelling under skin, hot and the area is red. It is treated by antibiotics.
But cause still unknown.
Since it is on the right hand side: how would an infection of the liver show up?
Don`t really know where to start investigating, got us all (including doctor) by surprise.

In the back of my mind is the thought about sepsis risk, is that a real threat?

Hallucinations: can be due to strong opiods but could limited kidney function (dark urine and low frequency) or the build-up of toxins (medication) in the liver contribute to it or worsen it?

I can`t leave him without supervision at the moment because he`s so confused that he might fall or something if left alone. Extremely difficult at night times where periods of agitation and drowsiness come and go.
Doctor was thinking to admit him to hospital this afternoon (due to the risk that I might not be able to cope with a 100kg man acting weird) but not yet made a decision.

Dan
keep pushing them...
if you don't push the NHS everything is just happening very slowly. And yes, it does seem that one has to make sure that there is communication happening between the consultants!
Just fighting a similar battle to get a referral to a specialist down in England (we live in Scotland where the NHS does not give you a "right" for a scond opinion but decide individually).
Just for comparism: my BF diagnosed with CC October 2012, resection December 2012, first follow-up scan end of June 2013 (should have been earlier I think). Complaints about pain and swelling on a rib ignored by consultants, was told it might be a trapped nerve, prescription of painkillers en masse, three months later (finally) a bone scan and an x-ray confirmed bone met, still no suggestions about treatment but more painkillers prescribed, now PET scan, consultant on holiday for another 2 weeks...
we want the referral NOW and don't want to wait until the consultant comes back... in my opinion far more sensible to get the results looked up by the specialist and the consultant at the same time to come up with treatment suggestions at the same time... don't want any more delays.
Officially the NHS has a database where patients results (scans etc.) are held and most GPs can just log into the system. So can there be any justification of one involved medical professional not wanting another having access to the same data in order to speed up the process?
Stay strong and keep pushing them!

it works with me (but I have sent you the pdf as an attachment to an email, perhaps that works better?)

www.shpbn.scot.nhs.uk/images/stories/SH … e_2010.pdf

Hi Percy,
not necessarily a misunderstanding. I know what you mean and I know that the Chinese approach is different to the one herbalists/phytotherapists chose.
It's far more complex.
They do have something in common which is the holistic understanding (hope this is the right word, might sometimes have problems since I am German and English is not my first language).

Anyway because the Chinese herbal medicine is far too complex and one might need some experienced person to guide you I have chosen the other approach many decades ago and decided to study phytotherapy with a focus on traditional herbs (was surprised that many plants considered to be weeds are so useful).

Licence or law is no guarantee that you get the proper stuff but it is somewhat reassuring that there are some regulations and tests (of course there will always be black sheep) what I meant was this http://www.edqm.eu/en/european-pharmaco … nd-50.html

thank you, Percy, interesting links!

Problem is - as you mentioned in one of your postings - very often that one needs to make sure that the quality of the drugs is good and that they are not contaminated.

Many herbs (not only Chinese ones are powerful) can be grown in the garden or the vegetable plot (having my problems to grow them to maintain our supply on an island in the North of Scotland though).
Unfortunately CC is such an aggressive cancer that time dictates to buy the supplies.
I usually try to get the things I can't grow via Germany where the pharmacists are controlled by laws and have to make sure the herbs supplied do meet certain standards. For some a doctor's prescription is needed.
But this way I can avoid the risk of getting herbs of doubtful origin.

may be a bit controversial: herbalists have long found out that very often the whole plant/herb gets a better result than the use of only the extracted active ingredient(s). So far there has not yet been an explanation for this mechanism.
I can only mention my own experiences in treatment of animals (and myself). Of course there is a difference in the treatment of animals and humans but since a lot of tests are still done with different species of mammals very often the results can be transferred to a certain point.
With a combination of three different plants (1 chinese root, 1 south american root, seeds from 1 common european plant) angionesis inhibiting effect could be reached in a pony with a soft tissue tumor. The tumor (which was growing fast before treatment) has been dormant now for more than 5 years. I did not mention the names of the plants/herbs because scientists have found out that one of them does work completely different in other types of cancer such as osteblastic lesions which are triggered in growth whereas the anti-angionetic effects seem to be limited to soft tissue tumors.

My own (very small) tumor (which is not a CC) has been kept at bay with the same combination for 17 years without any other treatment and has since shown no signs of change. This might be coincidence or sheer luck of course.

So what I am trying to say is that each individual is different. In many cases the use of herbal medicine in combination with chemotherapy might be the best approach, but I do believe that in some cases the results of herbal medicine (if not only extracted active ingredients are used) can be very good.
Problem is that so many doctors just don't know much about herbal medicine, they are not even able to advise you that certain spices should be avoided when taking painkillers which thin the blood.

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?

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.

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.

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...

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?

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.