Oncotype sample question

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1

As my previous question will show, I was diagnosed whilst visiting family overseas. Eventually I decided to have the surgery here as it would move much faster. If all goes well, I plan to return home for the radiotherapy and hormonal therapy (and chemo if needed).

I’d like to thank those who answered my query earlier and helped me decide to be treated here. I’m now booked for a lumpectomy and sentinel node biopsy on Thursday, which is weeks sooner than it would have been if I’d gone home. It’s definitely a relief.

However, in this country Oncotype testing is considered a private procedure, and is very expensive (thousands of pounds).

I was wondering if it would be possible/ feasible for me to bring back the sample with me to the UK so the testing can be conducted by the NHS.

This is a rather specialised set of questions, I know, but I hope the nurse advisors, or any patients who’ve had a similar experience, could let me know what they think:

  1. Is it even possible to collect the Oncotype tissue sample such that the test can be applied to it later? I could ask the surgical team to a paraffin block sample but perhaps Oncotype needs a specialised or proprietary process.

  2. Are there any NHS pathways for getting this testing done on a sample collected overseas? What might be the process? I plan to call my GP on Monday but they are very hard to reach especially from abroad.

  3. Since it might be a few weeks before I am cleared to travel back to the UK, would the time delay before I can deliver the sample be acceptable (both in terms of getting the results back to inform treatment and, crucially, so the sample is viable and usable).

  4. How does the sample need to be stored and transported in the interim?

  5. Does Oncotype sampling need to be on a tissue sample taken during the surgery? I assume there is no tissue left afterwards to sample

  6. What are the risks of not having an Oncotype at this stage? Right now, my oncologist here says I will not need chemo at all, but I’m very scared of recurrence or spread. While I don’t have a family history of breast cancer, I have a disproportionate number of relatives on one side of the family who have had or died of various cancers for multiple generations so I was wondering if I should not skip genomic testing even if I have to pay £££ for it.

Thank you! I hope this is not too arcane a question for this board.

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Hi @marthanne obviously I can’t answer in place of the nurses but wondered whether you have any idea of the grade of your tumour because if it’s grade 1 the NHS won’t send it for Oncotype anyway. I’m not totally sure whether all grade 2s are sent either, it’s dependent on other factors like lymph activity I think. Anyway, I’m sure that the nurses will be able to give you a clearer idea but we have a Public Holiday on Monday so there may be a few days wait for an answer.

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I’m sure the nurses will be along to answer your questions soon. Have you looked at the licensing process to import human tissue to the UK. It’s really complex and lots of red tape. Your current hospital would not be able to release samples unless the offical process has been followed. It could end up costing more to transport the sample, than getting you tested where you are. Have a google. Best wishes.

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Thank you, both these are useful points, which I hadn’t thought of / didn’t know.

@Tigress , thank you for pointing that out: I’d thought all cancers of this type get the Oncotype testing. Added information for the nurses, when they get a chance to respond: I have two tumours next to each other (one under 2 cm, the satellite much tinier) and was assigned grade 2. There is no lymph node involvement apparent on the scans done so far (mammogram, ultrasound and CT) though they will do the sentinel nodes during the surgery.

@edp that is a very good point, which had not occurred to me. I will check on the protocols on this side.

Thank you!

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Hi, could you try and contact the breast care nurse at the hospital where you will attend when you return to the UK and explain your situation.

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Hi @marthanne ,

Thanks for posting on our forum.

We hope to be able to respond to you soon.

In the meantime our helpline is open until 4pm today.

If you do phone our helpline, please let us know that you have asked a question on our forum so that we know your query has been answered, thank you.

Best wishes,

Charlotte

Ask Our Nurses service coordinator

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7

Hi marthanne,

Thanks for posting.

You say that you have surgery planned this week and intend to return to the UK for your radiotherapy and hormone therapy.

It’s understandable that you have lots of questions about oncotype testing. The need for an oncotype test is usually determined after surgery when your treatment team have reviewed your results and when the benefit of chemotherapy is less clear.

You also ask if it would be possible to bring back the sample with you to the UK so that testing can be conducted by the NHS. As @edp says the licensing process to import human tissue to the UK is tightly regulated and there are processes in place to do this. You say that you are planning to contact your GP on Monday to discuss this. Usually, the hospital treatment team in the UK where you are planning to be treated would request the tissue direct from the hospital you are currently at, so your GP wouldn’t be able to do this.

You say that while you don’t have a family history of breast cancer, you have a disproportionated number of relatives on one side of your family who have had various cancers. Genomic testing is different to genetic testing.

If you are concerned about your family history, it’s important to discuss this with your GP or treatment team when you are back in the UK. It’s helpful if you can find out as much information as possible about your family history on both your mother’s and father’s side of the family, before this discussion.

If the information suggests you may have a significant family history, you’ll be referred to either the local family history clinic or a regional genetic centre (depending on what’s in your local area). Here your risk will be assessed further.

Do call our helpline on (+44) 20 3553 2277, if you would like to talk this through or have any further questions. The helpline team have time to listen, talk things through and signpost you to additional support and information if necessary. Your call will be confidential; please be aware that the number is not free from overseas networks.

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Best wishes,

Louise

Breast Care Nurse

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