We managed to get a copy of a letter sent from one doctor to another, when my husband was handed over to an oncologist.
We had been told a while back that the docs were consulting with a NET expert, but in 4 years we have never seen him!
It seems that this expert who has taken on his case recently is a group of specialists in this field who the RCP can call on for advice.
The group is Renaten and specialise in rare cancers particularly NET.
We are happy that they are now 'in charge' and hope this means that my husband is finally getting the care and treatment he needs.
One of the specialists in Paris was recommended to me personally by the leading NET specialist in USA so we are feeling much more confident.
So if you hear of anyone who is diagnosed with NET, 1/100000 approx each year then pass this organisation on to them, it might just save them a lot of heartcahe.
As always thanks for all your continuing support
Please do keep updating us on your progress and take some comfort in the fact that we are still rooting for you..
I can only repeat what Goldenoldie says, after all this time it is such a relief to hear that you at last can see where you are going and, more importantly, that the advice you are getting is genuinely from specialists in the field. Lack of communication cause so much unnecessary distress.
Thanks too for starting this as a new topic, it more than merits it and will be easier for others to pick up from the search bar. Do keep us posted when you get the time and I hope that you and your husband will be more relaxed and able to enjoy what appears to be the beginning of the summer!
my husband starts his 2nd chemo on the 19/7, it was meant to be the 12th but they cancelled due to bastille day!
Seriously, there is a window of time for these treatments so it just means we go in on the latter end of the window. Re not seeing your "top" specialist..there is a possiblilty he is somewhere else in the world! Having just had the protocols of my stem cell treatment explained to me, the specialist explained that the information gained is shared between anyone in the world who is researching or needs advice. So it maybe that as your husband's type is so rare, your hospital is still getting the top advice...but the guy maybe anywhere! I think the main thing is that you are getting help at last...mind you, it may be worth asking where he is when you talk the the one who IS with you...he may just surprize you and say. keep your chin up
While poking about on the internet, using Google to search for "renaten", I found some details of the Renaten system and thought it might be useful to post them on the forum. The document is in French, but perhaps someone would like to translate it and post it in English. Over to you!!
Good luck and hang on in there, Lottie13!
Its bizarre though as my husband has been diagnosed for 4 years and this is his first referral to renaten.
We finally had an appointment with the oncologist last tuesday and managed to get the elusive results which we and outrmed traitant have been chasing for weeks.
He had time to discuss things and the new tumor is actually 2 new tumors and is in the aorta/pancreastic region.
They are 'lemon' sized.
It was quite a shock for my husband who has been monitored for the past 4 years by mri, has been told by our ex med traitant that he was just making a fuss last year and that NET is slow growing and he should stop worrying.
It now turns out they often don't show on mri and he should have been having scintagraphie. So we don't know how long he has had these 2 but can only assume that it has been before his carcinoid syndrome started in april 2009, what a waste of a year treatment wise. The errors in the notes are quite scary too, ok maybe not serious but sloppy!
My message, do your own research, ask and ask again, keep copies of all results, and if your not 100% happy ask for the 2nd opinion which the law says you are entitled to have without prejudice.