Tumour Profile tests

Hi,
I am very unlikely to be offered any kind of profie testing.

I understand entirely why that is the case and why the NHS use these test.

However I’m very keen to have my tumour tested anyway.

Can I have some advice please on how I can arrange this privately.

Thanks :blush:

1 Like

I asked my nhs consultant if I could have the Oncotype privately - his secretary arranged it and the results were discussed at the mdt as they would have been if it was done on the nhs. For the Oncotype the secretary has to tick a box to say you are paying privately and you have to sign a form to say you will pay, then they do the test, send the results to your consultant and about a month later send you an invoice, with the option to pay in instalments over up to three years if you want.

1 Like

Hi

Thanks for this information. I had no idea if a test was being done or not at the beginning. I did ask but wasn’t given an answer as the communication from my consultant is horrendous.

However I have now been informed this will not be happening. My MDT meeting is due this Thursday. I’m seeing him today as I have horrendous cording. So will tell him this morning that I want the test done

Thanks again x

Hi kat-jack,

Thank you for posting and asking about how to arrange private profiling testing of your tumour. It sounds as though you are asking about genomic assays such as Oncotype DX, EndoPredict and Prosigna. These are tests that look at groups of genes found in breast cancer. They help identify who is most likely to benefit from chemotherapy and how likely the cancer is to return (recurrence). If the benefit of chemotherapy for you is unclear, these tests can help your treatment team decide if chemotherapy should be recommended.

You mention you have been informed the test will not be happening in your situation. The test is considered for people who have been diagnosed with primary invasive breast cancer which is oestrogen receptor positive and HER 2 negative and has not spread to the lymph nodes under your arm. The tests aren’t suitable on the NHS or privately for people whose breast cancer is oestrogen receptor negative or HER2 positive, as people with these types of breast cancer will usually have chemotherapy.

Some people may consider paying for the test as @cloudy did. As you would like to see if you can have the test via private health care talk to your consultant about how to arrange this, when you see them this morning. You could also speak about this with your consultant’s secretary or breast care nurse.

It is important to be aware that the test might not give you a clear result, in which case you may need further discussions with your treatment team.

You mention that the communication from your consultant is horrendous and we wonder if it would help to talk with your breast care nurse about any questions you have regarding your treatment. It may also help to ring our helpline if you would like to talk this through or have any further questions, including about the cording you have. The helpline team have time to listen, talk things through and signpost you to more support and information if necessary.

We also offer a range of free supportive services for anyone who has had a diagnosis of breast cancer which you may be interested in. They include face to face and online courses and events.

For more details about all of these services, please see the information on the link, or call our free helpline. Your call will be confidential, and the number is free from UK landlines and all mobile networks. The number is 0808 800 6000, (Relay UK -prefix 18001).

If you would prefer one of our nurses to call you. To do this, please complete this form ticking the box agreeing to a call back.

Our usual opening hours are Monday to Friday 9am - 4pm and 9am -1pm on Saturday.

We will be closed on Good Friday 29 March, open on Saturday 30 March and closed on Easter Monday 1 April.

Out of hours you can leave a message and we will call you back when we next open.

Best wishes

Katy

Breast Care Nurse

Please read the Ask Our Nurses disclaimer Full details on how we collect and use your data can be found in our Privacy Policy

As we are unable to monitor for further replies, this thread will now be closed. If you have any additional questions or would like to provide feedback, please start a new thread, call our helpline, email us or request a call back.