Cost of having BRCA test and PET scan done privately?

[Poppy2212]

I wonder if anyone has gone this route? If so is it expensive? I was told I am not eligible for BRCA test but then may be offered tamoxifen which I think is for hormone receptive oc? Also have raised ca markers but ct scan not showing anything. I will be asking for pet scan next time I see my oncologist but I think she is going to be reluctant to offer it to me on the nhs. Julie

[Hidden]

Hi Poppy ...

I'd be interested to know the answer too Love T x x

[Poppy2212 in reply to Hidden]

I will find out one way or another and will let you know jx

[sharonforce]

Hi Julie

Do you have any family history of cancer on either your mother's or your father's side? The criteria in the NICE guidelines for genetic testing have recently been lowered from 20% to 10%. What type of ovarian cancer do you have? According to Professor Gareth Evans, when he spoke at the APPG meeting, 70% of high grade serous ovarian cancer is likely to be due to a BRCA mutation. Clear Cell and Endometrioid are less than 10% likely to have BRCA mutation unless there is a family history.

If you do not qualify for BRCA testing under the NHS then you could ask about whether you are eligible for the Institute for Cancer Research's Breast and Ovarian Cancer Susceptibility (BOCS) Study icr.ac.uk/bocs/

Or if you have been diagnosed in the last 12 months and live in the East Anglian area you may be eligible for testing under the GTEOC study cancerresearchuk.org/cancer...

If you put 'private BRCA test' into Google, or any other search engine, you will get results from websites of private hospitals that offer BRCA testing and give you an idea of price for paying privately.

Best wishes

Sharon

[Poppy2212]

Thanks for that Sharon it is very interesting. I am stage 4 serous but don't know the grade (I need to find out as some trials are for low grade). Diagnosed in 2012. My parents were divorced at very young age. Father died of cancer but no one on my maternal side just great grandmother who died of breast cancer at very young age. Just think the more info you have about your disease is important in making decisions about treatments etc.

[thesilent1]

contact the radiology dept in your local private hospital and ask them the cost re the PET scan. I had my MRI scam carried out privately as I ended up seeing a consultant on a private basis last May, and the scan cost me just over £300 but in my opinion was well worth it as it together with the private CA125 and CA199 tests (£32) and private consultation finally told me what was wrong with me. The consultant didn't bill me for his consultation, he felt I had been treated poorly by the NHS. he did transfer me into NHS and I had surgery under his care 4 wks later. sorry don't know about other tests but you could ask. good

luck. Ann

[Poppy2212]

Thank you Ann. I have had a ct which doesn't show anything but with rising ca markers it is likely the cancer is coming back and the uncertainty is difficult to live with. Julie

[ScardyCat40]

ukgtn.nhs.uk/find-a-test/se...

Most people recommend genetic counseling which adds to the cost.

[Hilsuk]

Hi Poppy, if you have advanced high grade serous ovarian cancer stage 3 ( not sure if have to be 3 b or c ) or above then you are now apparently eligible for Braca testing through the NHS even without a family history we were told at the ovarian all parliamentary group meeting in January, by some of the leading geneticists. The problems seem to start when you are referred for this as all the referral forms to genetics clinics require a family history form to be completed before you get an appointment for testing. I'm persuing the same at the Marsden as they seem to be pushing this new idea.( Im not sure our nearest gentic clinic in Birmingham will be aboad with this new recommendation yet. ) Your gp has to refer you and I was advised that they need to send a letter with the form explaining that although you have no family history , you are aware you should be tested as you have advanced high grade serous ovarian cancer . If you are braca positive the you are much higher risk breast cancer , and also likely to respond to a PARP inhibitor if you have a recurrence - so important to know for your sake ( as well as any children you have ) . Sent my form back to them , but no appointment yet - fingers crossed they will accept the referral - ill keep you posted ..... Good luck.

I know PET scans are them most expensive scan , and believe the cost the NHS about£600, so the private sector would charge this plus a hefty profit,

Hilary

[Hilsuk]

Me again ! I also wondered if should have tamoxifen as my tumour was oestrogen receptor positive too, but asked leading oncologist at parliament meeting , and this isn't prove yet to help often in ovarian cancer, although it does in breast cancer .

However if you were braca positive, then you should have it to reduce your risk of getting breast cancer too xx

[sharonforce in reply to Hilsuk]

Tamoxifen is not recommended as a preventative for breast cancer if you are BRCA1 positive as the breast cancers which develop in those with a BRCA1 mutation are oestrogen-receptor negative breast cancers in 90% of cases, hence there would be no reduction in cancer risk. It is different for those with a BRCA 2 mutation (whose tumours are more likely to be oestrogen receptive) but not necessarily recommended.

[Dyana]

Intesting Hilary , I keep asking oncologist as mine is Oestogen receptive , he is open to the idea but keeps saying no as he feels I thin( therefore maybe not producing much oestrogen) and same as in your post ! Unclear evidence . If Braca then that is clearly different and its an option to be discussed xxx