Cancer Treatment in France

[Grecian]

Well it looks like I have bowel cancer, still trying to come to terms with the whole horrible scenario and must say the whole things is like living a nightmare.

Must try and stay positive although hard, I guess things will sink-in, in due course. What I really would like is feedback and information as to how the whole process of cancer treatment works here in France. To date I have an appointment for a sigmoidoscopy on Wednesday, which has only been a wait of a week, but today received my appointments for a CT scan and MRI on the 14th and 21st November respectively, which considering we are meant to have the best healthcare system in the world seems a long wait. No point really comparing waiting times in other parts of France, but maybe Deux Sevres is a bit slow in this situation. Could anybody tell me what happens after the test results are received, and how long I can expect to wait for an operation? Being seriously ill in a foreign language is not the ideal situation, although I have contacted the English cancer support group in Deux Sevres and they said if I require a person to come with us to see the specialist for translation purposes, they will be happy to help, that's something I guess.

Would really appreciate any feedback from anybody who has been through the same situation.

[NormanH]

I have had treatment

for this (two operations and chemotherapy) and 5 years after the

first diagnosis all is still fine although of course I still have

frequent checkups.

1) You need to get your GP to apply for you

to have the status of an ALD. This will give you 100% free treatment.

You will get it but it has to be applied for, so do that

straightaway. After that such things as transport are also

covered.

2) When you say you have bowel cancer has this been

diagnosed by biopsy/coloscopy? That is the first stage.

The second

stage are the scans to 'stage' the cancer and see if it is still at

an early stage and confined to a particular area.

Once this has been

determined the various treatment options will be discussed. This

also depends on which bit of the bowel is affected.

With luck it is a

bit that is easily accessible and easy to cut out. Mine was more

complicated being right at the bottom end of the colon and into the

rectum so needed a couple of attempts, but each case is different.

I was treated at my

regional centre for cancer research not in a general hospital.

This is just a

brief outline of a complicated topic and I can give you more

information in reply to questions .

I know it is a shock

but you are in good hands and as I know from my own experience a

diagnosis of cancer is just that start of a possible cure, not the

end of the journey.

[Grecian]

Thank you very much for your swift reply Norman, it is very reassuring to know you have come through the experience, and are still going strong after 5 years.

In answer to your question, no I have not been officially diagnosed yet, I am having a sigmoidoscopy on Wednesday, I saw the same specialist last week and the only test he has done to date was to stick a greased finger up my bum[+o(] he then told me i will need an operation. Not sure how he could know if what he felt was malignant or benign, but I assume he knows what he is looking for.

Thanks for the offer of answering more questions, I have some more, but is late now.

Once again thanks for your reply.

[Théière]

Nothing really to add at this stage but my wishes for a good outcome, The sigmoidoscope only goes a short way around the bowel so they almost inevitably follow up with a colonoscopy to examine the whole of the bowel but there's not much difference between the two so not sure why they bother with the short one first except for the slightly more skilled pilot required. 

[nectarine]

Grecian, I've a couple of friends who've had cancer treatment in France and each of them said that they couldn't have found better treatment anywhere else, so I hope this gives you some reassurance.

My best wishes to you and your family ..really hoping this all goes well for you.

Hugs xx

[Judith]

Can't reply re the treatment, but I do know that our local branch of Cancer Support France has been brilliant helping some who have have to go through all this, no matter what cancer.  I suggest you do keep in touch with them, yes they help with translations on visits to hospitals etc, but I think you 'll find they do much more, but you have to ask, they may not offer, due to respecting people's privacy.

Sorry to hear about this, but I think (though I have no experience to back this up) that once diagnosed, you will be treated as quickly as is needed.

To add a bit of light relief  - even I was surprised by this speed - had a mammography last week (usual 2 yr test) just happened to  be my ?th (no not telling!) birthday, so I went first thing and was 4th in line ... got it over with, forgot about it, and spent the rest of the day enjoying myself, including a super night out with friends.  Result (negative, as expected) arrived Friday morning in the post.  Blimey, never had the results so fast.  So my unexpected birthday "treat" turned out very well indeed.

I do hope that the prognosis is also as good and as speedy for you.

[Patf]

Bon courage, Grecian - I also know of someone here who had excellent treatment for bowel cancer, and is now "in remission".

Keep posting on here, you'll get regular support [:)]

[Grecian]

Thank you all very much for your kind support, I've always felt like we are a community on this forum, although most of us have never met, and when 'one of ours' goes down we all pull together.

As Norman has pointed out to me I have not yet been officially diagnosed with cancer, so must stay strong until I have been informed one way or another how the situation is. Must say the specialist didn't tell me outright just started saying I will be sent for a CT scan and MRI, but did say an operation is required, I guess they have to be a little careful in what information they disclose. All my blood test results came back with 'normal' readings, but I have since found out this is no way to find out the staging, only the CT and MRI can show that. Still I guess it is better to have readings within range at this stage.

I still think nearly a 5 week wait is too long for the MRI, I must say I was expecting it much quicker, that is a long time to be kept speculating what is going on inside my body. It's nice to hear other peoples experiences in France when being treated for cancer have been good. Whilst I am going to see my own doctor next week, unfortunately he is on holiday this week, I will ask him how the process unfolds after the scans have been completed. Norman can you remember what happened to you after your scans were done? I presume I would receive an appointment to see the surgeon who will carry out the operation initially, and then received another appointment for the operation.

Well tomorrow is a massive day for me, although I am only having a sigmoidoscopy, and as Theiere has pointed out I will probably have to have an endoscopy as well, it will reveal what is happening with my bowel and lower colon, (what a nice subject!)

Well thank you all again for your support.

Grecian

[Théière]

[quote user="Grecian"]

Well tomorrow is a massive day for me, although I am only having a sigmoidoscopy, and as Theiere has pointed out I will probably have to have an endoscopy as well, it will reveal what is happening with my bowel and lower colon, (what a nice subject!)

Grecian

[/quote]

Yes you'll see yourself in a whole new light [:D]  good luck for tomorrow, so by now you'll be feeling hungry and starting on your rocket fuel diet [+o(]

Remember to laugh a little it does help even at these times.

[Benjamin]

Grecian

I am a little further down the road than you insomuch as my prostate cancer has been confirmed and I'm now waiting for an appointment with the oncologist for my preferred method of treatment. I suspect that the wait for an MRI and CT scan is to do with the sigmoidoscopy, since that is invasive and you have to give time for the area to"calm" before you can have any scans.

Having had a prostate biopsy I then had to wait a month for a scan so the timing looks about right. I could not have an MRI scan as I have a none MRI compatible pacemaker so I only got a CT scan. My GP is supportive of having the pacemaker changed next year: a fairly easy procedure as the wiring in to the heart itself is compatible ( weird or what?).

If you want more information regarding your possible condition then stick to recognised  sites e.g. Macmillan.

My condition was spotted by my GP who noticed that my PSA levels were rising over a period of time. PSA is checked via a blood test and whilst the test is not totally accurate it is useful if a trend can be spotted. When we lived in France, and again since returning to live in England, I just asked to have the test from time to time.

Again both in England and France we were invited to send off samples (the poo test[+o(]) to test for early bowel cancer. Is this how you were recognised as a potential sufferer?

Best of luck.

[NormanH]

From the description

you give it sounds as if he suspects rectal cancer, since that and

the prostate cancer which Benjamin has (and I have also had before

this one) are the only two that he could detect with the 'gloved

finger' and for which the sigmoid test is appropriate.

This will

probably involve taking a biopsy, since scans can't fully show what

is going on in the cells, and cancer treatment nowadays is so precise

that they target different sort with different treatments.

It is only when this

biopsy has been done and the samples analysed that they can even

start treatment.

The other two scans

have different overlapping purposes. The MRI can see more precisely

if the tumour (if it is that) remains superficial and so easy just to

take off, or whether it has started to go further into the bowel wall

and lymph glands. This is called 'staging' and also serves to

determine what will be done.

The other scan is to

see (if you have indeed got cancer) whether there is any sign

anywhere else.

For Bowel cancer

the liver and lungs are common sites for spread, so again it is a

help to decide the treatment since surgery on the rectum without

treating any where else would not be much use in that case.

My cancerous polyp

was found but the results put in a drawer and ignored for a year

before I went back for another appointment and the specialist said

'oops we have a problem' and it had grown.

That is just to show

you that even after a year wasted it was still possible to deal with

it, and even after that there had been no spread.

If you have got

rectal cancer and it is still very early you may have a choice as I

did between a relatively small operation in which the surgeon goes in

from behind and tries to skim off the tumour, or a much more major

one in which much of the rectum is removed and you have a temporary

stoma bag for some months.

I chose the first,

but after 18 months the thing came back and I eventually had to have

the big one.

This was followed up

with 6 sessions of Chemotherapy to knock it on the head.

Now three and a half

years later I am back to 95% normal function with some care about

diet.

I was lucky in that

despite the delay the problem had remained in the rectum and it has

not spread.

I have regular

scans, blood tests, liver echographies and chest X rays just to be

sure.

Don't panic about

the delay. Nothing useful can be done until the biopsy results are

in, and at that stage it just might turn out not to be malignant. If

it is the other tests will give a good idea of exactly what they have

to deal with and provide a base for an informed choice between a

range of possible therapies.

[Grecian]

So sorry to hear of your own situation Benjamin, until you are put into the situation you have absolutely no idea as to how hard it can hit you, it literally turns your world upside down in a split second. I hope your CT scan has not shown up any secondary sites, and you receive your appointment very soon, I think all the waiting is as hard as being told of your situation.

As mine has not yet been diagnosed, I am trying to get myself together as since last Wednesday I have fallen apart quite badly, that is no good and must stop, I have a wife with very bad health herself to look after, so 'clocking out' is not an option. I have decided to adopt as my theme tune a Francis Rossi song off his solo album--One Step At A Time, perfect I would say. You can find the song on YouTube so maybe give it a go.

As regards as to how my doctor was alerted to mine, no I didn't do the poo test, I now know how stupid I was not to send off the test, as I must have had 3 or 4 letters sent to me in our 6 year stay in France. I did a Google search as to why I may have been lightheaded after an attack I had about 2 months ago which left me very lightheaded for 3 or 4 days. It stated ear problems to be a likely cause with balance, but a piece at the bottom said bowel cancer could be a possibility. As I suffer from haemorrhoids I assumed the problem with pains in my bum to be linked to them, when I saw my doctor I told him of being lightheaded and I told him that my haemorrhoids were very sore. He only looked up my bum, no greased finger and said they were inflammed. I think he should have linked to two symptoms together, he gave my some tablets for both ailments, so I came away feeling relieved. Only after I started passing mucus I went back to see him 3 weeks later, he then sent me to a specialist, but only to have my haemorrhoids checked out, the rest is now history. Not happy with my doctor, but for the time being I am stuck with him.

Like yourself I had blood tests for pretty much everything last week, and whilst there was no PSA test included, after thoroughly reading the blood test results we notice an ACE test (which is a CEA test in the UK), and researched this test on the internet. Basically is it a colon cancer test, and any reading under 5 for a non-smoker is considered healthy, when we noticed mine was showing 1.2 we were both upbeat on Saturday thinking there to be no problem. On Sunday I did further research any discovered that this test is used as a marker when treatment is started, and sometimes it gives false positives, so back on the floor again. Although having now joined the forum on the Beating Bowel Cancer  website some people's CEA readings start well over 300, so even though it may be giving me a false positive reading, I think I would rather start with a reading of 1.2 than say 350.

Once again so sorry to hear of your own situation Benjamin, if we can both help each other in the pursuing battle let's keep in contact. Good luck to yourself also.

[Grecian]

Thank you for that Norman, it has slightly put my mind at ease a little, but not taking anything for granted at this stage. I have thought all along the problem to be very low down, as the pain really does feel like very sore haemorrhoids, so we will just have to wait and see what transpires tomorrow. I have my two enemas lined up for tomorrow morning's blast [+o(]. Would you know if I can have any breakfast after I have 'let-rip' as I never asked the specialist that.

Many thanks

Grecian

[NormanH]

I would hold back on the breakfast and have a blldy good lunch.

Once you start to eat you tend to set off the automatic reaction that leads to needing to go to the loo, not the feeling you want as they start the test.

[Grecian]

Thanks Norman.

[mint]

Good Luck, Grecian and Good Luck, Benjamin!

I hope all goes well for you both [:)]

[Grecian]

Well after seeing the specialist for my sigmoidoscopy this morning can't say I have been giving overly encouraging news. He found a large tumour 5 cms up my bum, and a polyp which he removed, the rest of the bowel and colon he could see were clear. I guess the only consolation is that it is confined to the very bottom (excuse the pun) of my bum, so if they can get it and cut it out maybe there is a chance. But until the CT scan is done, I will not know if there are any secondary sites. He was very pleased with my blood test results and said the readings were excellent, so something to cling to.

Now comes the wait, 14th Nov for the CT scan and 21st Nov for the MRI, and then who knows how long after that for any surgery. Does anybody know if you can go privately in France for CT and MRI scans? Maybe I am overreacting and should just wait for things to unfold, I guess this is perfectly normal at this stage to want any surgery or chemo done yesterday. Like to think something will be done before Christmas but not even sure that will happen at this stage. What a bummer (sorry another pun).

[Benjamin]

Bit of a mixed bag that.

As for getting earlier scans don't forget what I said yesterday. You have had an invasive procedure and there is no point in having any scan until the area has "calmed down".

I understand that waiting is very difficult but patience is the watchword here.

Bon courage.

[Patf]

Well at least you know now what is causing your problems.

I'm not an expert , but I would think that if there was an urgency they would have advanced the next lot of tests, or the surgery.

Look after yourself while you're waiting - try to eat well and sleep well and keep busy and active during the day.

And Bon Courage to you too, Benjamin.

[mint]

Can't you go back to your medicin traitant and request that they shorten the waiting times a bit?

Explain that you are very anxious and ask nicely?  Worth a try?

If there is a bit of a waiting list for the scanner, perhaps you could ask to have it done in a neighbouring town/dept?

Come, Grecian, now is the time to turn on the charm[:)]

[NormanH]

It doesn't give me

any pleasure to say that it sounds as if I was right.

I will repeat the

relevant bits of what I wrote since when you have a shock like this

you don't always take everything in.

1) This will probably involve taking a biopsy, since scans can't

fully show what is going on in the cells, and cancer treatment

nowadays is so precise that they target different sort with different

treatments.

It is only when this biopsy has been done and the samples

analysed that they can even start treatment.

This can take over a week to do, so no treatment can start anyway before

2)

The other two scans have different overlapping purposes. The MRI

can see more precisely if the tumour (if it is that) remains

superficial and so easy just to take off, or whether it has started

to go further into the bowel wall and lymph glands. This is called

'staging' and also serves to determine what will be done.

3)

The other scan is to see (if you have indeed got cancer) whether

there is any sign anywhere else.

For Bowel cancer the liver and lungs are common sites for spread,

so again it is a help to decide the treatment since surgery on the

rectum without treating any where else would not be much use in that

case.

In other words they are working systematically through the procedures in the right order: they need the biopsy results first since it could be a benign tumour and the rest would be unnecessary.

Once all this is done a treatment plan will be worked out by a team

The fact that your ACE is so low is a very good sign.

Remember too that you are not the only case in the waiting list and the specialist will be weighing up his patients on the basis of perceived urgency. There is much less of the plague of "queue jumping just because you have money" in France than in the two-tier system in the UK.

4) If you have got

rectal cancer and it is still very early you may have a choice as I

did between a relatively small operation in which the surgeon goes in

from behind and tries to skim off the tumour, or a much more major

one in which much of the rectum is removed and you have a temporary

stoma bag for some months.

If it is low down he may well be able to do the first of these, but there again it depends on if it is malign, how deep it has gone, both of which will be shown by the tests.

The wait is difficult but nothing can be done before the biopsy results.

[Théière]

[quote user="Grecian"]Well after seeing the specialist for my sigmoidoscopy this morning can't say I have been giving overly encouraging news. He found a large tumour 5 cms up my bum, and a polyp which he removed, the rest of the bowel and colon he could see were clear. I guess the only consolation is that it is confined to the very bottom (excuse the pun) of my bum, so if they can get it and cut it out maybe there is a chance. But until the CT scan is done, I will not know if there are any secondary sites. He was very pleased with my blood test results and said the readings were excellent, so something to cling to.

Now comes the wait, 14th Nov for the CT scan and 21st Nov for the MRI, and then who knows how long after that for any surgery. Does anybody know if you can go privately in France for CT and MRI scans? Maybe I am overreacting and should just wait for things to unfold, I guess this is perfectly normal at this stage to want any surgery or chemo done yesterday. Like to think something will be done before Christmas but not even sure that will happen at this stage. What a bummer (sorry another pun).

[/quote]

Wellcome to the club!

It won't be of much comfort but a tumor in the bowel is a slow growing tumor relatively speaking so at 5cm that will have been growing for 4-5 years so it won't be doing much in the next 30days.  Think of those who have tumors that grow that big in 6-12 months and you may see why you have to wait although are there cancellations like in the UK where you may get in sooner or are the dates cast in stone in France?

You are perfectly normal in your reaction, we have all been there but it still one of the most treatable cancers and they will be culturing the biopsy to type it accurately before making their next move.

[Grecian]

Thank you all again folks for your kind words.

I know I am probably being hysterical about the waiting time, but until you are placed in this situation I don't think anybody else would act any differently, unless you are very very strong willed. And yes until I have the results of the biopsy the tumour could still turn out to be benign, if that turns out to be the case, then I would not be sober for at least a week!

I think the specialist saw I was very distressed today, and he did write urgent on the biopsy report, after I had thrown a wobbly, and his secretary is going to try and get me earlier scans at Angers, they will let me know tomorrow. Another part of this whole situation is not knowing how things work in France. I don't really like the specialist I have seen, and as he was running half an hour late today, he just seemed to want to get rid of me as quickly as possible. I am going to see my own doctor next week, as I need to know what happens next when I am given the scans and reports, do I take them back to the specialist I have seen to date, am I expected to make an appointment at a hospital myself and stuff like that, which would all be done for you in the UK. Our choice to live in France, but this is a very big downside to being here at the moment.

But I must practice what I preach, so I guess it is One Step at a Time, as that is what I have stated I was going to do.

Thank you all again.

Grecian

[mint]

Grecian, have a drink or two anyway.

Nobody would mind if you keep coming back and asking questions.  You'd never find out anything unless you asked.

I don't know anything about the procedure for suspected cancer.  But you can try me on asthma, glaucoma, epilepsy, prostatic enlargement, melanoma and flat feet, if you wish.

[NormanH]

Another part of this whole situation is not knowing how things work in

France. I don't really like the specialist I have seen, and as he was

running half an hour late today, he just seemed to want to get rid of me

as quickly as possible. I am going to see my own doctor next week, as I

need to know what happens next when I am given the scans and reports,

do I take them back to the specialist I have seen to date, am I expected

to make an appointment at a hospital myself and stuff like that, which

would all be done for you in the UK. Our choice to live in France, but

this is a very big downside to being here at the moment.

Bedside manner is NOT a strong point of specialists I have found; they tend to be good technicians but cold fish, and I suppose they have to be as a defence mechanism when they are dealing with an illness such as cancer all day.

I had no sympathy and no psychological support despite the publicity that leads you to expect to be treated as a special case. You are just one of many.

Half an hour is a very slight delay. The worst I have had was 5 hours[:-))], and it is very like a conveyor belt as they have so many patients.

You could investigate and see if there is another specialist with a good reputation that you would like to see, taking the results of the first tests with you so as not to make the wait any longer, but that might be a hurdle you don't want to jump. I made an approach myself to another centre who accepted me.

In your area there is one here : http://www.unicancer.fr/centre/institut-de-cancerologie-de-louest-paul-papin

but as I say this may be a bridge too far for you depending partly on your confidence in French.

Practical issues:

In my case the specialist made a follow-up appointment to discuss the results as only he can fully evaluate them. I didn't go back to see the GP as his job was done, apart from getting him to ask for the 100% cover as I outlined in my first post. This is important as it is only once you have this agreed that you are reimbursed fully. Up to then you or your Mutualle if you have one has to pay a part of the costs, so if the biopsy comes back positive scoot off the your GP PDQ and get him moving

 If the specialist decides on an operation or other treatment it will be his secretary who should make all the appointments and arrange any further tests on the cancer front as well as arranging a date for the start of treatment.

At that point you will find that things start to get serious. If surgery is decided  there are appointments for a heart check up, a chest Xray, and an appointment with an  anaesthetist . These last three I had to make myself in time to have the results in the right order: for example the chest Xray and heart check need to be done before you see the anaesthetist who will give you a form to fill in about your medical history and want to see the test results

It might be useful to research now who can do the heart check and Xray ready to make the appointments if necessary. Make it clear that it is just a pre-operation check not a full scale examination as this is quick to do (an ECG and BP check) and can be fitted in earlier if waiting lists are long

I know you are shocked and scared, but now you need to concentrate on the admin and getting better.

Strangely I found that the French system helped in that I had to think about what I had to do and on doing it in a foreign language which took my mind off dwelling on the illness.

If you need help with phone calls etc Cancer Support France would certainly be useful, or I am happy to call for you, but I am a long way away and liaison might be better with someone  more 'on the spot'