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Cancer

Find advice & support if you or someone you know has been diagnosed with cancer

Original poster

Breast cancer genetic testing - how do they deliver the results?

25 replies

Thingsthatgo · 02/10/2025 14:53

I had a blood test last week for the chek2 mutation. (As it is in the family) The lovely genetic counsellor I spoke to said that she would call me in 6-8 weeks with the results.
I asked if I could have a letter instead, but she said it would take a lot longer. Will she make an appointment for the call? I can’t answer the phone at work.
I have Patient Knows Best on my NHS account, and it has updated to say my result will be available on 30th October at a very specific time. Which is a bit weird (or maybe that is when they will phone me?)
Any information or experience would be highly appreciated. I am feeling a bit wobbly.

OP posts:
Original poster
Thingsthatgo · 02/10/2025 17:13

Hopeful bump.

OP posts:
Original poster
Thingsthatgo · 02/10/2025 22:37

Dos anyone have any experience?

OP posts:
Ginisatonic · 02/10/2025 22:46

I got a call. When I spoke to her face to face she asked how available I was and I said I could usually answer.

Can you contact her again and make an arrangement about how she’ll contact you? Maybe she could leave a message saying results are available and ask you to call her at a certain time.

Original poster
Thingsthatgo · 03/10/2025 06:58

Thank you for replying. Yes, I’ll have to take a day off for the call, so I will need to know when it’s going to be. Thank you.

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WhereAreWeNow · 03/10/2025 06:59

I got a letter.

Original poster
Thingsthatgo · 04/10/2025 21:00

@WhereAreWeNow thank you. I asked if they could write it in a letter, but she said it would take 4 weeks longer.

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Toomanywaterbottles · 04/10/2025 21:04

I got a call. In fact, the whole thing was by phone, the initial consultation where they go over your family history, and then the follow-up call.

PoptartPoptart · 13/10/2025 21:12

I haven’t spoken to a genetic councillor. The surgeon suggested the test, the BC nurse took bloods, and I was just told I would get a call in a few weeks. I don’t know who will call me. Does this sound right?

Ooogle · 13/10/2025 21:14

I chose letter, it was 24 hours longer

Ooogle · 13/10/2025 21:15

PoptartPoptart · 13/10/2025 21:12

I haven’t spoken to a genetic councillor. The surgeon suggested the test, the BC nurse took bloods, and I was just told I would get a call in a few weeks. I don’t know who will call me. Does this sound right?

No, you should be referred to genetics and be able to speak with a genetic counsellor. For me, I couldn’t get a blood test before speaking with the counsellor

PoptartPoptart · 13/10/2025 21:18

@Ooogle thank you - I’ll give the hospital a call and ask to speak to a genetics counsellor

Original poster
Thingsthatgo · 13/10/2025 21:20

@PoptartPoptartI also had to speak to a counsellor on the phone before I could have the blood test. I think they will phone me, but I don’t know what happens if I can’t take the call. If they make an appointment for the call I might be able to take a day off work.

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Mrsoftandhisstrangeworld · 13/10/2025 21:22

How do you go about doing this? My DD is potentially at risk on DH's side but not sure when and how I can get her tested.

Toomanywaterbottles · 13/10/2025 21:36

Mrsoftandhisstrangeworld · 13/10/2025 21:22

How do you go about doing this? My DD is potentially at risk on DH's side but not sure when and how I can get her tested.

You need a very strong family history. The dad’s side of the family doesn’t count so much. It is my dad’s side that has the history and I was tested, but that was after me getting breast cancer twice, my dad’s mum having breast cancer twice and all six of her siblings, including the men and young women in their 20s, and many of the cousins on that side too. Many other cancers too -bowel, eye, brain etc. I tested negative. You can ask your GP, but even with all my family history, I was only very borderline to getting enough points for testing.

PoptartPoptart · 13/10/2025 21:57

@Mrsoftandhisstrangeworld
I was tested because I had triple negative breast cancer. No family history at all, but because of the type of cancer they offer testing.
I’m finding it a bit scary waiting for the results. The surgeon said that if it’s positive I will have a choice as to whether or not I want preventative surgery, ie. a double mastectomy. Or I can just wait and see.
I guess this is why a genetics councillor is a good idea! These are big, life changing decisions that have a real impact on mental health too. I will call the hospital to ask.

Ooogle · 13/10/2025 21:58

Mrsoftandhisstrangeworld · 13/10/2025 21:22

How do you go about doing this? My DD is potentially at risk on DH's side but not sure when and how I can get her tested.

where I am it has to be an immediate family member with the gene. My sister had triple negative breast cancer and was tested due to that and a history and then that meant I was eligible for testing

Original poster
Thingsthatgo · 30/10/2025 10:17

My NHS app says that my results will be available to view online to at 13:39. A very specific time!
I am concerned that I will misinterpret it, but I don’t have the willpower to not look. Maybe I will get a phone call today with the results.
If the result is positive does that mean I have the gene mutation? That would make sense I guess. I am quite anxious- I have been waiting since January to find out.

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Nocookiesforme · 30/10/2025 10:33

I suspect that I have CHEK2 but our breast clinic refuses to test for it for anyone (so not just me). It's only just occurred to me that it's a gene mutation because I have HER2+ BC for the 2nd time in less that 18 months of the all clear the first time.
Every male in our paternal line develops prostate cancer (linked to CHEK2 in research) but no one has suggested a DNA test and there is evidence that HER2+ cancer is linked to CHEK2. No one will listen to my concerns because there's no evidence in my family of gene mutation so going round in circles. So it looks like my only option is gong private and I can't afford that. No one in the medical profession wants to listen to me so my DC could be sitting on a timebomb and the not knowing makes me feel so guilty.

Mrsoftandhisstrangeworld · 30/10/2025 10:52

Is it possible to go private? How much does that cost? I am keen to understand the risks my DD might face so she's armed

Original poster
Thingsthatgo · 30/10/2025 11:00

It’s definitely possible to go private because some of my cousins did to avoid the wait. I don’t know how much it cost them though.

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Nocookiesforme · 30/10/2025 11:50

I was quoted about £600-800

TinkerbellStarbright · 31/10/2025 15:34

Did you get your results?

Original poster
Thingsthatgo · 31/10/2025 19:18

No. Thanks for asking though. The app now says that the ‘result has been sent directly to the original requestor’. I guess I just wait for a phone call.

OP posts:
Original poster
Thingsthatgo · 11/01/2026 15:57

For anyone searching for this information later, I received an email asking when I was free for a phone call, and I was called on Friday. It was a very long wait for results, but I do not have the chek2 gene variant, which is good news Smile

OP posts:
Ooogle · 11/01/2026 20:26

Thingsthatgo · 11/01/2026 15:57

For anyone searching for this information later, I received an email asking when I was free for a phone call, and I was called on Friday. It was a very long wait for results, but I do not have the chek2 gene variant, which is good news Smile

That’s good news. I’m glad you don’t have it. I opted for a letter for my result

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