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Genetic cancer testing - Oscar Lambret Clinique, Lille


sueyh
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Has anyone visited this clinic for the brch2 genetic test. Because of my family history of cancer and the fact that my cousin has the faulty brch2 gene, I have to go tomorrow and am wondering what to expect.

Any info would be gratefully received

Thanks

Suey

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Thank you FairyNuff.  Yes went along today, saw a lovely consultant who spoke only French and he was so kind and constantly checked that I had understood, I understood some but hubby, who was less stressed, understood most.  I have to wait probably two to three months for the result of the first test, then I have to have a second blood test to confirm the result.  If it is a confirmation of the fact that I may carry the faulty gene I can have my ovaries removed.  In France they do not go as far as to removing breasts but recommend yearly mamograms.

Suey

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I'm sorry that I was perhaps a bit late in replying to be of much help. It should help that you have confidence in the consultant. Ovarian cancer is "silent" because it is often well advanced before it presents symptoms. Breast problems on the other hand are more easily detected. I hope all turns out well for you,

FairyNuff

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[quote user="Théière"]Knowing if it turns out to be true you have a faulty gene (really hope you are clear) could you go for regular screening rather than have surgery first? (I know nothing about this gene, just interested)[/quote]

Having had my interest poked I looked into this, and came across this page.

http://www.cancerhelp.org.uk/type/ovarian-cancer/about/ovarian-cancer-screening

It seems that at the moment there is no reliable screening for ovarian cancer, but it is being investigated. Nowadays screening methods and potential problems are looked into much more before being rolled-out to the appropriate public.

FairyNuff

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Thank you both.  At present I have a smear test every year with an echograph to check ovaries internally and also externally.  I have been advised to go for mammograms every year.  Not much more I can do apart from have ovaries removed and as I am 51 (not quite menopausal yet) they are of no use to me really, only problem will be hormones and I can't have HRT because of the risk.  Will keep you posted.

Thanks again

Suey

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Hmm, I am not sure you would want us discussing this Sueyh. I would have thought and it sounds quite wrongly that the doctors could see a tumour growing in the ovaries using an endoscope of some kind as they can easily see a tumour in the bowel using a miniature camera.
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  • 4 months later...
Well results through, yeah I definitely have the damaged gene, so have been advised to have ovaries and fallopian tubes removed as it is a very undetectable cancer.  Genetique Oncology Prof also suggested mastectomy for reasons of prevention but this is something I will have to think long and hard about.  In the meantime I can have IRM but Prof says they are very difficult to read with regard to breast cancer.

Suey

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Thanks Sweets, was expecting it but still a shock, particularly as I was suffering from "white coat syndrome" with the Genetic Prof and had problems understanding English let alone French!!  ;0)

Has anyone any experience of this type of preventative surgery?

Suey

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No, but I really do wish you bon courage and all the best. I suspect it is a case of facing the grim facts and taking the advice and help that's offered, better the devil you know, than the devil you don't know. [:(]

Do they provide you with counselling before the big decision to go ahead with the plan?

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Suey, if you decide to have your ovaries and fallopian tubes removed, as you say you don,t need them anymore. I had a total hysterectomy at age 39, everything had served it,s purpose, alright I was then straight into a surgically induced menopause. But as ovarian cancer is SO hard to detect very worth considering. I was diagnosed with colon cancer here in France 4 yrs ago, very advanced, stage 3, mets in lymph nodes. Very traumatic surgery, chemo the lot. But here I still am, happily. They don,t call cancer the silent killer for nothing. As for having your breasts removed, that is something they normally try to avoid in France, only you can make that decision. But, breast cancer is detected much more easily with regular mamograms and echo graphies. I hope you make the best decision for you.

Best wishes, Janey
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Thanks Cendrillon.  Yes the Professor was very informative and gave me all the info that I needed.  Thankfully I have a cousin, who also has the gene problem, who is an ex Macmillan counsellor and she has given me some really good advice.

Suey

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Sorry to hear your news Sueyh, I don't know enough about that cancer to say anything but it seems such a harsh thing to go through without actually having cancer. Can't they do regular endoscopy visits to find any irregular growths like they do for bowel cancers?

Anyway good luck with it all

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Thank you for all your kindness.  No unfortunately Theiere Ovarian cancer is a silent killer, I have had regularly checks by ultra sound but am happy to get rid of the ovaries if I am at risk.  At the age of 51 i really don't need them, am just a bit concerned about the menopausal side effects as I cannot have any sort of hormone treatment.

Suey

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  • 2 months later...

Having nursed my mother through ovarian cancer till her death in her 40's, her sister dying of breast cancer (I must add that neither of them went to the GP with even advanced symptoms because our family has always been riddled with these cancers and they did not believe that treatment had improved) it was assumed that I might have whatever it was that was causing it - I of course being bloody minded got cancer of the top of the cervix (not found in smears) and it was decided that I had the version of the gene that is specific to one racial minority. I did not have a hysterectomy (only because the UK Consultant had a record of killing women so could only do small ops and he did not forward me (yes, I have that confirmed as he was struck off/retired on full pay) just loads of tests on a regular basis but I knew that nothing found ovarian cancer early enough to be 100% sure. I then got a weird fibroid which caused a hemorrage and I would not let them operate unless they whiped the whole lot out - which after some arguing they did. I was 50 and on HRT as my hormones had gone to pot due to the treatments etc. I stopped the lumps and cysts in my breasts by not wearing a bra and have mamo's every other year. I came off HRT when I came to France by choice but it was horrid. I have been told that once you get to about 55 your risk is the same as anyone else for breast cancer - I am just under 65.

I have two female grandchildren and also this gene can effect men - I have two sons.

Genes, shmeans, who knows what it means - mainly to me I wanted the womb, cervix and ovaries out. I would worry about the boobs.

Whenever you have your menopause it can be missed as you have no symptoms or you can be like me and forget how to get dressed in the mornings. It happens to all women in different ways. If you know you have a risk of ovarian cancer think long and hard and what ever your decision it will be the right one for you.

God Bless - er indoors

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Sueyh, I am just a poor man but I can sympathise with your condition as my wife had something very similar at a similar age (a little bit younger in fact) plus had some symptoms which indicated all was not well.

I won't lie to you, it's quite an operation as you know and my wife had to take it easy (read: do nothing) for 3 months, not even walk more than a few metres, no stairs,  let alone drive etc.  We got through that OK but I think she felt very frustrated at being so confined.  Anyway after 3 months or so, everything magically was OK and she says 'it was the best thing I had done'.  She had HRT for a very long time, when she came off it, gradually reducing over another long time, the effects were just the same (she says) of a women going through menopause so it seems that the HRT had just delayed the inevitable.

She also had a number of breast lumps which were all 'just' cysts fortunately and had very regular mammograms.  She has now lost a considerable amount of weight (45 kilos!!!) and at the last check-up the lumps had all gone!

Now I'm not for a moment suggesting the same applies to you but just to say that lumps are not always as bad as they could be.

Very best wishes to you with what you decide, it seems at least that you are getting very good advice and treatment.

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Just to confuse matters even more, my womb and falopian tube/ovary removal was done with keyhole surgery and I was back at work in 3 and a half weeks - very naughty but I was a contractor and never got paid if I did not work. No driving for 3 months but when I consulted the surgeon about what I could do as I felt so much better, his secretary who had had the same op said she went back to work for him after a month so she did not see a problem (he was on holiday). It all depends on the factors and size of the organs to be removed. My fibroid, although nasty was small and so I avoided a large operation but did get a large transfusion of blood which I think got me through the recovery really fast. It was the last thing I wanted and had signed for no transfusions BUT they waited until I was back in my room and told me that I had to have all the blood or I would be in bed for 3 months as I had lost so much. This shows that we all have different problems and different solutions all under one heading.

Er indoors

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  • 1 month later...
Well the op went well.  Lovely hospital, CHAM at Rang du Fliers, Pas de Calais.  Superb nursing and the consultant visited me every day (he being the Chief of Gynaecology).  Have been home for two weeks and am much much better, walking the dogs (the old boy of ten is about my pace at the moment).  Still have two more dissolvable stitches to dissolve!!  Am going for post op appointment on Wednesday, so hope all will be okay.  Just need to talk to him about my options re: breast cancer and what his feelings are re surgery.

Thanks all for your kind words, what would we do without our forum.

Suey xxx

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