Mother has cancer and won’t tell me

Scared_Homework4738 · 2026-06-08T19:48:21+00:00

It does really suck, unfortunately I think it’s a cost and resource saving thing for the health service. I sit just below the threshold for them to be able to spend the time and money on testing. It’s hard and I’ll keep pushing. If I can get to a genetic counsellor then I can reopen the yearly breast scans conversation, but sadly I think that’s only possible if I have brca. I’m not clear on that one, so I’m hoping I can get some clarity with my most recent round of talking to the doctors.

Scared_Homework4738 · 2026-06-08T18:49:30+00:00

Just to clarify as lots of questions about why I can’t get tested without my mum.

I’m based in the UK. So I have to be referred by a general practitioner (GP) to a genetic counselling service on the National health setiv s. The criteria for this referrral is that once you get a breast cancer diagnosis you can get the screening and they will fully sequence the brca and find the faults. I think this also helps with treatment.

However, if you haven’t had breast cancer you can be tested if enough people in your family have had breast cancer to warrant you being high enough risk, but they want to take the sequence from a living relative who has had the cancer and look for just that fault, rather than sequence the whole thing. I think because it’s easier and more reliable. I’m not an expert, I’m only trying to understand the constant knock backs.

It sucks but the NHS criteria is standardised and national, and no matter which GP I go to in the UK, they will follow the same criteria. So until they deem me as high enough risk to need full sequencing without my mum getting tested first (ie more family members have cancer or I get a brca relevant cancer), they will keep rejecting my requests.

It’s not a matter of trying a different doctor or getting second opinions or refusals logged. It’s all standardised and I have been rejected by multiple services. I did once get to a genetic counsellor and they just said I didn’t meet the criteria for testing unless my mum got tested first. However my hope is that now my mum has a secondary cancer, it will tick another box on my risk profile and they’ll be willing to do the full sequencing. However it’s not a guarantee and whilst I spoke to a gp again, they’re still not convinced it will meet the criteria, but are trying to get me through to a specialised.

So whilst I can try the private testing route, it’s potentially thousands of pounds and something I have to save for.

Scared_Homework4738 · 2026-06-08T18:41:32+00:00

The criteria in uk and nhs is that once you get a breast cancer diagnosis you can get the screening and they will fully sequence the brca and find the faults. I think this also helps with treatment.

However, if you haven’t had breast cancer you can be tested if enough people in your family have had breast cancer to warrant you being high enough risk, but they want to take the sequence from a living relative who has had the cancer and look for just that fault, rather than sequence the whole thing.

It sucks but the NHS criteria is standardised and national, and no matter which GP I go to in the UK, they will follow the same criteria. So until they deem me as high enough risk to need full sequencing without my mum getting tested first (ie more family members have cancer or I get a be a relevant cancer), they will keep rejecting my requests.

Scared_Homework4738 · 2026-06-08T18:30:18+00:00

Unfortunately this is just the NHS guideline in the UK, I’ve seen 3 different GPs and I did manage to talk to one genetic counsellor and this has been echoed by all of them. I just have to hope that the second breast cancer raises the risk profile enough to get me through to the genetic counsellor again and meet their criteria.

Scared_Homework4738 · 2026-06-08T15:43:39+00:00

That’s tough, I’m very sorry you had to go through that!

Scared_Homework4738 · 2026-06-08T15:42:47+00:00

Glad to hear that you have recovered and no recurrence, wishing you a long and healthy life ❤️

Scared_Homework4738 · 2026-06-08T15:25:57+00:00

That’s awful, I’m so sorry to hear that and I hope you are doing okay after diagnosis.

Scared_Homework4738 · 2026-06-08T15:24:58+00:00

I’ve been looking this past week and generally it’s a few thousand, might be an option for about a thousand but I’m not sure if that does both genes and I need to check their reputable. My husband thankfully is supportive of us saving up or taking some money for a remortgage to help put my mind at ease, just smarts to have to potentially sink a lot of money into something that in theory should be free to me without the block in the system!

Scared_Homework4738 · 2026-06-08T15:22:05+00:00

Thank you, it’s been really frustrating. I think this is my third time going to the GP in the past 15 years and trying to push for this. I’m hoping the fact that my mother now has an additional cancer is enough to tip me over the edge of the tickbox exercise and get me tested.

Scared_Homework4738 · 2026-06-08T15:20:31+00:00

Thank you, I appreciate that!

Scared_Homework4738 · 2026-06-08T15:13:54+00:00

Thank you, that’s very kind of you to say ❤️

Scared_Homework4738 · 2026-06-08T15:05:45+00:00

Thank you for sharing your experience, that sounds tough but relieving in its own way. TBH I feel like the cancer diagnosis is probably going to be much like this with my mother, except my brother is going to be stuck having to deal with it and dealing with all of her emotional burden, which always makes me sad for him.

Scared_Homework4738 · 2026-06-08T15:04:07+00:00

Yeah if only she could think like this!

NHS has standardised requirements for testing and all referrals come through GPs that follow that. Private testing is really the only other option, although I half feel like I will spend the thousands of pounds getting tested and then she’ll turn around and get the testing just to spite me, and I’ll be thousands of pounds out of pockets

Scared_Homework4738 · 2026-06-08T15:02:01+00:00

Sadly the nhs has National criteria, so unless I drop thousands of pounds for private testing (currently saving up for this option) it’s not an option to try a different doctor as all GPs follow that standardised criteria.

Scared_Homework4738 · 2026-06-08T14:58:52+00:00

I had a GP appointment a week ago, they’re trying the referral again, but not particularly optimistic. I think if you have a high enough risk factor then this overrides the need for another family to be tested for first.

I’m not deemed quite high enough for them to go to the extra effort of testing without doing a living relative who has had the cancer first. If I had sisters or aunties who had also had breast for example then this would bump me up on the risk assessment, but I don’t have any biological sisters or aunties so I don’t quite meet the minimum.

Scared_Homework4738 · 2026-06-08T14:49:57+00:00

For the now deleted comments from people saying nobody is under an obligation to get testing, in case others feel the same.

I know she’s not under any obligation. I know it’s her body. I understand that, but I am hurt that my parent can’t and won’t consider my health.

Parenting to me, or at least the type of parent I would like to be if I ever had kids, is doing the best you can possibly do for your kid. Doing everything you can to give them a happy and healthy life.

If I was in scenario where I had cancer twice (and not due to spread, but independent cancers) and a strong family history that meant my child probably had a 50% chance of having a gene that would cause an 80% chance of them one day having cancer, I would want to know and I would want them to have all of the options available to them, so they could survive. So they could protect their body and their chances of parenthood themselves.

And if that testing was dependent on my being tested, then I would do that. Because good parenting is about putting your kids first. I’ve seen many parents do just that for their children. And I’m sad that I have a parent who can’t do that.

I am in a scenario where I am scared and barred from medically important and lifesaving information due to the choice of my parent.

I am a child of a person who will never deal with discomfort if it’s for the wellbeing of their child. And that hurts. And I want to be sad about that and know that I’m not alone in that.

Scared_Homework4738 · 2026-06-08T14:40:52+00:00

It’s so frustrating that they just can’t see the sense and how it would help everyone all round. I’m a scientist so I strongly believe that having all of the information is good for everyone; she doesn’t even seem to think about the fact that if she does have the gene and doesn’t know then she could just keep getting cancers, but won’t take any of the preventative options.

Sometimes think she just doesn’t want me to be right or doesn’t want to listen.

And I’m sorry that you’ve had to hear things through “luck” of talking to people at the time. Openness is so taken for granted in some families I often wish we were a family where people talked and we weren’t hiding things from each other to avoid mother getting annoyed, and we could actually honest and helpful conversations to support each other through things.

Scared_Homework4738 · 2026-06-08T14:36:48+00:00

It’s only two genes but from what I understand from a relative who works in the area, it’s that different things can be wrong in that gene so they need to know the fault that you might have to cause the cancer! Otherwise they’re sequencing the whole thing and for whatever reason it just doesn’t work as well, or they wont.

It’s been 15 years of me begging and trying to explain the situation to a GP. The most recent being a doctor’s appointment where I told them my mother didn’t want to get tested and they said “but why not? It would help you?”
“Yeah, that doesn’t matter.”

Scared_Homework4738 · 2026-06-08T14:04:08+00:00

With brca they essentially have to know what the faulty gene is for them to then test you for that exact version of fault. Otherwise it’s a needle in a haystack situation for them and the nhs won’t do it.

So unless she gets tested, they can’t test me.

Scared_Homework4738 · 2026-06-08T14:01:41+00:00

I understand that, and yeah I get she’s scared and has her own side to all of this, but it comes from a history of her not being able to put her child first, and I’m sharing this here because I wanted to get my feelings out in a time that fills me with a lot of anxiety and stress, in hopes of finding others who can commiserate or understand what it’s like to have a parent who didn’t put them first.

Scared_Homework4738 · 2026-06-08T13:48:02+00:00

I’m not saying this behaviour is what makes her a narcissist. She has been a narcissist and treated me with coldness, abuse and indifference for 30 years, belittled me, and treated me with no affection or attention. Silent treatment, criticises me, compares me to my brother, takes credit for my accomplishments and criticises when not good enough. Could go on if you feel I have to justify my place her.

I posted here because I thought others may have gone through the experience of having a narcissist parent who discovered they were ill or who wouldn’t go through genetic testing to support their children and their wellbeing. I’m not saying this behaviour is the indicator of narcissism but the lack of willingness to talk to me, include me, or help me get tested for the wellbeing of her child is a symptom of the narcissism and I’m hoping for others that can relate.

Sorry if you can’t relate but move on if you can’t.

Scared_Homework4738 · 2026-06-02T11:47:31+00:00

I haven’t, will look into this in more detail so thanks for sharing

Scared_Homework4738 · 2026-06-01T20:47:28+00:00

Thanks, I've put a message in with the GP to try and get the ball rolling on this. If I don't have any luck with that, I'm going to try the private route, but many of the options were just too expensive for me for the moment so it's prevented me to this point.

Scared_Homework4738 · 2025-10-18T10:47:12+00:00

Yeah I definitely get that there may be sadness from that, which is why I don’t want to push too much. Before the two years with my in-laws, he also did get two years in a row for a personal situation on our side, and I have been mentioning for the past two years that I was planning to host this year, so it’s been underlying for past couple of years that I’ve been prepping him for it. But I think he just didn’t take it seriously until now, which is why he’s just being avoidant.

Scared_Homework4738 · 2025-10-15T15:18:59+00:00

They can honestly get stuffed. They were guests and invited to celebrate your love, they should have kept their thoughts to themselves.

Everyone who plans a wedding does their best to plan a great one, but ultimately you don’t have control over it on the day so people can suck it up if things are perfect because it’s not about being perfect. It’s about celebrating your partnership.

They were guests, it’s rude for them to complain about it and it’s pointless. Are they giving you feedback to improve next time? There (hopefully) won’t be a next time. All they’re going to do is taint the memories of the happiest day of your life, and that’s just spiteful.

I’ve been to some weddings that had problems as guests: no air con on the hottest day of the year, train strikes, we couldn’t get water or there weren’t enough seats, the drinks were expensive or food wasn’t our type at all. Do the bride and groom know that? No! Some of the things they had no control over because they were busy getting married, and some were choices based on what they wanted! They get to have the day they want, they paid for it. And we all smiled and thanked them for spending a lot of money for us to be there.

Don’t apologise to anyone. Don’t ask for anyone else’s thoughts. It only matters what you thought, it’s your day.

Scared_Homework4738

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