Tomorrow he is to start chemo in Vannes. We have a list of questions that we need answers to and hope to get them, I am starting to sound like an old record!
He is due to go in for 5 days intravenous chemo.
We have not yet met the oncologist.We have no idea what they are proposing.
We ahve no idea why they have decided on this treatment and what they are hoping to achieve.
We have had no prognosis.
We have no idea whether they have ever treated this type of cancer in Vannes before.
We do not know who my husbands neuroendocrine expert is; who they apparently have been talking too.
BUT there is no way he is going to have chemo unless these and many other questions are answered.
It is difficult to post this but I do not want anyone else to go through this journey and to reach this stage with so little information.
Sorry I didn't read your posting yesterday - I hope you get the chance to read this before heading off to Vannes.
Under the French national 'Plan Cancer', all patients are supposed to be given a dossier which describes fully the treatment that is planned. We know that this is not yet being implemented fully - I am very sorry to learn that your husband is one of those missing out. It is, however, his right to have everything explained to him, and he can request the aid of a translator if necessary.
Unfortunately, there still exists the attitude amongst some of the French medical profession that 'if you don't ask, it is because you don't want to know'; this can result in patients being railroaded into treatment without adequate time for decision-making on their part. You/he should raise this with the oncologist at the earliest opportunity.
Will be thinking of you both today - do not hesitate to get in touch with your local CSF group if you need help, or just to chat.
You can ring head office also (05 45 89 30 05) - we are open on Tuesday mornings 10-12h30, and there is an answerphone which is checked regularly.
With best wishes to you both
We went to Vannes this morning and finally met the oncolgist.
Apparently my husbands case has been discussed by a team in Rennes and they have decided the treatment.
He said that the treatment has been in use for around 30 years and there are little or no side effects, he is to have 5 days intravenous, then 42 days off, for 3 cycles then will have a scintagraphie scan to check if the new tumor is responding.
He said he will pop in from time to time to see my husband and if he has any other questions then he can ask.
He had an ecg and an assistant sociale called in but i had popped out, she said did we need any help at home, but my husband didnt know what sort of help she was offering so said no.
I made a note of the chemo and it is
Fluorouracile and streptozoncine, on top of which he is to have 3 weekly injections of somatulin.
I will try to get more information out of the oncologist tomorrow but we cant seem to get anyone to tell us what they expect the outcome of this treatment to be.
However I am just relieved that he is finally getting treatment and will keep you all posted.
I have had a quick look at the two chemo drugs and it does list a lot of possible side effects although i realise we are all different
bon courage to all
Prognosis is not always available in sufficient accuracy for them to tell you, especially if -as in your case- its a bit of a rare cancer. However they should be able to indicate something, otherwise it will be a case of waiting until THEY find out with the examinations at the end of treatment. They do not always know themselves.
Anyway well done so far and please pass on my good wishes to your husband and let him know that we are all with him in spirit during the treatment.
I will ring the nurse tomorrow as he was sent home without his protocol and no written information and absolutly no advice for example can you drink alcohol, how much water should you drink, who do you ring in case of a problem;any danger signs to look out for, I am really losing what little trust I had left in this system which has put us through the hoops in the last year.
we do not have a language problem as my french is good and the oncologist yesterday spoke faily good english;
I do now feel it is time to just go with the flow and let them do whatever, ifeel i know when i am beaten.
Good luck to you both.
Every hospital in France is obliged to have a complaints procedure - and even our little 'cottage hospital down the road in Confolens has it on the waiting room wall in both French and English. I think you should consider taking back some control over the situation, by asking for a copy of this, and submitting a formal complaint about the lack of the 'treatment protocol' &c. I know that this is a very 'un-British' thing to do and realise that at present you may feel that you just have too much else to worry about, but do think about it.
And remember - we at CSF will do anything that we can to help.
Anyway he arrived home with it, although it has not been filled in!!!! we are going to fill in all his details and he is going to take it back and insist.
He had a visit from yet a different doctor who only spoke french but husband understood roughly what he said, he told the doc that we only understood what was going on thanks to your website and the carcinoid one.
The doctor didnt think it was a good idea to use the internet!!!
BUT if we hadnt my husband would have reached the point of no return by now, it was only research and help from others that have enabled us to get the treatment he now is having.
When you go next, take the book and open it in front of them and demand to have it filled in...mine was done by the nurses who gave me the drugs, as they gave them..it remained open beside me throughout my treatment, to be added to as and when I had something new..
and yes in the livret should be the names of other people on the team,,dietician,sociale aide AND the complaints procedure. Its there to be used...or maybe use it to threaten them..sometimes just a mention of you knowing its there will be enough.
anyway, keep brave and with all our support behind you, you will find the strength to overcome! good luck.
The President is going to a conference at the Institut National de Cancer (INCa) in Paris on Friday, and I will ask her to raise the issue (anonymously, of course) if the opportunity arises. I will also bring it up at the national committee meeting next week to see what the general experience of this sort of thing is.
Your comment about the attitude to the internet is somewhat revealing, isn't it!
Hope your husband is not suffering too many side effects.