Breast Cancer Advice Please

[Bertiebe]

Mrs Bertiebe here. Help I need advice. Have been diagnosed with grade 2 adenocarcinoma and covered by UCH Rangueil in Toulouse. I waited 16 days for a core biopsy and then next appt. to see consultant was 1 month later for results (15 September). However, in meantime had to return to UK to look after elderly mother for a couple of weeks and after biopsy developed problems with breast and visited A&E. They immediately did a scan and I was told categorically that I had cancer and that the lymph in my arm also effected (this was not scanned in Toulouse). This information I received yesterday so contacted my GP in France to get my biopsy results urgently.

My dilemma the UK are suggesting I need surgery now and they will do it in 2 - 3 weeks time, but of course I live in France and will need Chemo and Radiotherapy so can't really stay in the UK permanently.

My questions/s ; has anyone any experience of cancer treatment at Rangueil?

Has anyone had surgery in UK and then follow-up cancer treatment in France?

Any advice comments welcome as I am afraid my treatment in France will be slower than in the UK - orginally found lump on 26th July, saw consultant 2 August, biopsy 18 Aug, (appt. given for results and follow-up 15 September) - is this everyone elses experience?

Sorry it is war and peace but I am shocked and bewildered at what to do for the best.

[cooperlola]

Mrs Bertiebe, having been recently diagnosed with cancer myself, I know what you are going through.

On a practical note, there is an S form which allows you to have treatment outside your country of residence.  What's more, your EHIC covers you for emergency treatment so if the UK medics think you should get your op' now then I see no reason at all why you can't do that then get the follow ups in France.  The major problem would be one of communication since it's not always easy to find medics on either side of the channel who speak the other language well enough to understand your notes etc.

I've been dealt with very quickly here and a friend who had breast cancer was also dealt rapidly once the biop' results had come back.  The major delay which both she and I experienced was the three weeks it took the lab to analyse our lumps.  After that we got ops and treatments straight away.  Bear in mind that it's August.  From Monday, large numbers of French people will start returning to work as rentree approaches, after which everything will speed up and you won't even recognise the service you get this side of the channel.

You can also ask CSF

http://cancersupportfrance.org/about-us

for their take on the "both sides of the channel" practicalities and options.

Bon courage.  PM me if I can help in any way.

As I have discovered, there are lots of cancer sufferers on here and they have been  quite overwhelming in their support and advice.  You are not alone.[:)]

[NormanH]

A practical note. Get your French GP to ask the CPAM to give you the 'Attestation'  that you have an ALD so that you will be treated automatically at 100%.

Biopsy results take time, but are the most certain method of knowing what exactly is there.

[Rose]

Mrs B - I am so sorry you're having such an unpleasant time.

There was a thread last year about breast cancer which you may find helpful... also I know that Kitty and a few others on here have gone through or are going through breast cancer treatment so maybe send them a message?  I'm sure kitty will answer any questions she can.

http://www.completefrance.com/cs/forums/2347851/ShowPost.aspx

My own biopsy result took a week, but this was post surgery (thyroid not breast).  I had spread to lymph nodes but was told not to worry too much about this as the lymph nodes were simply doing their job.

It's a really scary time when you first hear the news but the more you learn and the more you talk to others the less worrying it becomes.

Sorry I can't offer any practicle help but do get in touch with Kitty and I do hope you get some answers that help ease your worries very soon

[Bertiebe]

Thanks Coops (sorry to hear your news too), and great advice from you and NormanH, as always. Will request the ALD from GP. Also contacting my GP to see if he can request an earlier date for treatment in France as would prefer to have treatment in one place if possible.

As I live 150kms away from hospital do you know if you have to travel daily when receiving chemo and radiotherapy?

Thanks for your support.

[cooperlola]

Yes, you will probably need to travel to get the chemo but your doc' will authorise a VSL (sit up version of an ambulance) or re-imbursement of fuel costs etc, if you are  likely to be well enough to drive.  My treatment is once every 3 weeks but my friend opposite had hers every day for three weeks (radiotherapy, not chemo like mine) so all will depend upon what you need.  It's not one size its all, I'm afraid.

[NormanH]

[quote user="Bertiebe"]Thanks Coops (sorry to hear your news too), and great advice from you and NormanH, as always. Will request the ALD from GP. Also contacting my GP to see if he can request an earlier date for treatment in France as would prefer to have treatment in one place if possible.

As I live 150kms away from hospital do you know if you have to travel daily when receiving chemo and radiotherapy?

Thanks for your support.[/quote]

As Cooperlola says it is different for different circumstances.

Radiotherapy yes, probably 4 days a week with one off. I had 40 sessions at that rhythm.

Chemo is a bit different, in that it comes in bursts rather than a daily treatment.

Sometimes you stay in overnight or a couple of days, at other times you might have a simple day treatment.

There are also combined therapies. Often chemo is used for the lymph and either surgery or radiotherapy for the main cancer.

It is also possible to be 'farmed out' to a more local centre. I have  a friend who had her main surgery  in Montpellier, but has had a series of later appointments in Béziers as the treatment is the same 'formula'

This article about a recent treatment with radiotherapy before an operation may be of interest if you read French

http://www.midilibre.fr/2011/08/07/une-avancee-pour-traiter-le-cancer-du-sein,368048.php

[NormanH]

Just to say that if you do have to travel frequently , once you have the ALD agreed by the CPAM it is 100% re-imbursed if you go by VSL

[Patf]

Bon courage, Mrs. BB [:(] As you know the standard of treatment here is excellent. I was in Rangeuil for short time, a different problem, and they're very good there.

Pat x

[KathyF]

So sorry to hear about your diagnosis, Mrs BB. I've been in the same position twice, both times in the UK and can't fault my treatment there. I do find the long delay between biopsy and results surprising and unacceptable, even if it is the holiday season. In the UK I got my results within 3 days both times.  The first time was just before Christmas and the second was in August. 

From my own experience I would prefer to have all my treatment in the same place, for ease of communication and continuity of care, but if the delay in starting treatment in one place would be very marked I'd go for whoever would start treatment first. Good luck wth getting your results very quickly.

[Gardengirl]

Mrs Bertiebee, I would echo Kathy's advice - probably better to have op and treatment in one place, but if the delay is long in France, maybe best to get started. I also had breast cancer; I was in UK, and had superb NHS treatment for ops and radiotherapy, which was for 15 days continuously. Not only were staff at the hospital very supportive, I was very lucky to have a super husband with me, and great friends and family - including several moral boosting friends from this forum.

I had 3 ops in all and flew to France between each following my check-ups, with the surgeon's blessing, and wearing those very sexy operation stockings - in bottle green!  [:D]

Good luck - and try hard to keep calm .... yes, I know, very hard to do - and look after yourself.

GG x

 

[Bertiebe]

Thanks to everyone for their replies. It always surprises me how many of you are in, or have been in, the same situation.

At the moment I am waiting to hear if my surgeon in France can bring the date forward for surgery; if so then I think my decision will be much easier to make. Will keep you advised.

[Kitty]

As Rose has said, I was diagnosed with breast cancer last autumn in the UK but had the treatment in France.  There was a delay while I changed systems and there were exasperating things e.g. the CD Rom with my results from the UK did not work in the French hospital.  However, I am pleased that I did have the treatment in the place that I live (France) because of the follow up treatment, which for me is for five years.

I cannot fault my treatment in France.  As others have said, you get a 100% dispensation (go to your French GP for this) so you don't have to worry about costs.  You could telephone the French GP from the UK to ask for advice - that is what I did.

There are several women who have had breast cancer on this Forum (and many others who have had other cancers) so you are not alone.  The spookiest time is now.  It's good that you are seeking help.  A problem shared is a problem halved ...

I have sent you an email and a PM.

[sueyh]

Hope all goes well Bertiebe.  Good luck with all your surgery and treatments.  The french health system, for me, has been superb.

Take care

Suey

[Bertiebe]

Hi everyone, well good news. Having had 2 options for surgery (UK and France), my excellent GP has discussed my case with the Consultant in Toulouse and I have a pre-op appt. on Monday with a view to surgery on Tuesday or Wednesday next week.

Must say I am calming down a little now as I have been so stressed with this large Hematoma (still not going down), and all the extra information with regards to Cancer.

Cannot praise the staff of Good Hope Hospital in Sutton Coldfield enough, the NHS did pull out all the stops for me; as I'm sure is now going to be the case in France.Thanks for all the good wishes, will let you know how it all goes.

[cooperlola]

Yipee kay yay, Bertiebe.  I am pleased for you.  I won't say it gets better as things get into full swing but it does change and the support services get into gear and do all they can for you.  My friend who had breast cancer diagnosed just as summer began is now past her treatment and out the other side with her life getting back on track.  There are loads of posters on here who are at the very least in remission and they can and really do help you through it.

If you're really bored and have nothing else to do, have a look at the Cooperlola thread and you'll see what I mean - the messages of support and the vast amount of practical, first hand assistance and info' are amazing.  You're never alone on here,  I'm going to try to keep the thread running through the treatment - probably more for my own benefit as anybody else's but also in the hope that it's help others understand how the system works and what some of the possible hurdles are. 

Bon courage.  Keep in touch and keep asking if you need any info', help, or just somebody to yell at.[:)]

[KathyF]

So glad things are moving for you now, Mrs BB.  [:)] The waiting is always the worst bit in my experience and now that treatment will soon be underway, I think you'll find your stress levels reducing a bit. Do keep in touch and let us know how things are going for you. 

Something I found very helpful when I had my second breast cancer diagnosis 6 years ago was the supportive kindness and excellent information available on a couple of breast cancer support forums.  Both are based in the UK but have members from around the world.  In case they might be useful the addresses are:

http://www.breastcancercare.org.uk/forum/   This is a large public forum run by a major breast cancer charity.

http://bcpals.org.uk/forums/   A much smaller private support forum, which also offers very useful information

 

 

 

[Cluzo]

I must agree with kathyF that the breast cancer care forum is very informative and supportive . I used to use it regularly a year ago when just diagnosed - Im sure the answer to every question you never thought to ask is on there .    A year on and with my treatment all finished I never need to look at it any more - in fact it rarely crosses my mind that I ever had cancer in the first place !!!

[Bertiebe]

Thank you all for the kind words and the useful forum information.

Another question I'm afraid, my GP's secretary in France said we get the ALD application form online - however, we have looked and can't locate it. Can anyone help.

Keep up the good work all of you, we do appreciate it.

[NormanH]

That isn't usual.

The Doctor should have one as he has to fill it in

It's callef a 'protocole de soins'

http://www.ameli.fr/professionnels-de-sante/medecins/exercer-au-quotidien/les-affections-de-longue-duree/le-protocole-de-soins/comment-etablir-le-protocole-de-soins/vos-demarches-administratives-se-simplifient.php

It mentions which disease or diseases are covered

but you can down load this:

see the bottom of the page

'  télécharger le formulaire'  ( the first on the list)

http://www.ameli.fr/professionnels-de-sante/medecins/exercer-au-quotidien/les-affections-de-longue-duree/le-protocole-de-soins/le-protocole-de-soins-en-pratique/qu-est-ce-que-le-protocole-de-soins.php

it will give you a .pdf file with what you need

[KathyC]

Not sure whether it's too early for you to think about it but I wonder if the question of reconstruction's been raised (assuming you're having a mastectomy)?

I had this over 20 years ago and can certainly recommend it.

[Bertiebe]

Thanks NormanH, I know GP should have it but things seem to work a little differently in the remote mountains, and at times a little slowly, but my GP does try to pull out all the stops.

As to the subject of reconstruction, there was a lot of discussion here in the UK, but until I have my first meeting (post positive results) on Monday in France I wont know for sure whether he is talking full or partial mastectomy and need to ask about reconstruction.

If anyone knows the cancer terminology in French/English this would be very useful, things like Lymph nodes, reconstruction, etc. etc. Many thanks.

[NormanH]

Ganglion lymphatique

The wiki page in French is here

http://fr.wikipedia.org/wiki/Ganglion_lymphatique

and if you click on English on the list of languages on the left you can get more or less the same page in English, and so a good way of getting the vocabulary

Another page is

Reconstruction mammaire après cancer du sein

If you need any help to understand the second page don't hesitate.

There are words like prothèse etc which you will be able to guess, but not have known the French equivalent

[Bertiebe]

Hi, thought it about time I gave an update.  Well, I had my P.A.M.ectomie 4 1/2 weeks ago and it all went very well, at the same time they tested the Sentinel node.   I was extremely pleased with the surgery, the staff and care at Rangueil in Tls, but the food left a little to be desired.

I had my follow-up appt. last Tuesday and unfortunately the Sentinel node has biopsied positive so am returning to hospital on Tuesday to have the lymph nodes removed and biopsied again, I assume. Then 4 1/2 months of chemo will follow.  I was disappointed as the surgeon reconstructed my breast when he operated and I wasn't expecting to go back for further surgery, but hey ho I know it is necessary.

I have one question regarding the claim for my husband to take me to hospital.  When the hospital issue the Presc. Medic. de Transport for him to take me into hospital and they only tick "aller" on the form, does this mean he can only claim for the journey one way on the "Etat de frais Transports"?  It seems a bit mean if that is the case because he has to return home.

Thanks again to everyone for their advice and good luck to everyone who is battling cancer in all it's forms.

Mrs Bertiebe

[mogs]

Hi Mrs Bertiebe

I had breast cancer treatment in France 3 years ago I do understand what a difficult time it can be.

For the transport for your husband you can claim with a bon de transport saying you used your own private car and then the other form which you detail kms, tolls, engine size etc. etc. Make sure the hospital stamps and signs the Bon de T.

Send it off to your securite sociale and they will reimburse you.

Take care