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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To think there is an annual full body cancer check?

74 replies

ldntoparis22 · 21/04/2023 21:24

I'm late 30s. Mother had ovarian cancer and survived. Detected early. I asked the NHS whether I should have any extra screening and GP said no, apparently only exists in the case of breast cancer.

Is there a test that can be done and paid for privately, annually? I know there is the BRCA gene test but I am afraid of that- if you had it, you'd be living on eggshells, a ticking time bomb waiting for symptoms. I'd prefer an annual check that I can pay for privately. I don't think a full blood count via GP is sufficient to be able to detect cancer.

Any ideas

OP posts:
Nap1983 · 21/04/2023 21:26

You could pay for a full body MRI.

Greensleevevssnotnose · 21/04/2023 21:27

Or go private. The Mary Howe trust to private scans so I am sure there must be others around the country

HairyKitty · 21/04/2023 21:31

I imagine the problem with any kind of “fullbody” check is that most people’s bodies contain harmless anomalies that aren’t cancer, but are very distressing whilst that is investigated.

LIZS · 21/04/2023 21:31

You can pay for a private health assessment and choose what you want it to focus on ie www.bupa.co.uk/health/health-assessments or have a consultation with private gp and ask what tests might be appropriate.

xogossipgirlxo · 21/04/2023 21:33

Maybe blood markers? My uncle’s prostate cancer has been detected early when he went to his annual blood test.

Edwardandtubbs · 21/04/2023 21:35

If you were brca positive then you'd be offered an annual mammogram and possibly an annual MRI regardless of age. The threshold for genetic testing is quite high though, you have to have a confirmed relative who is positive or meet strict criteria to be tested.
There is no screening for ovarian cancer. You can have a blood test for ca125 which tbh you could probably wangle annually via the GP if you just went and said you were worried about it.
I am brca+ and certainly don't feel like a ticking time bomb, I was able to make informed choices about my body armed with that knowledge.

RandomMess · 21/04/2023 21:37

Check the NICE guidelines, I'm sure you would be eligible for the BRCA gene testing.

You have counselling before the test and there are preventative options if you test positive. Low dose methotrexate, annual breast screening, elective preventative surgery and so on.

Please ask for a referral, 50% chance you haven't inherited it anyway.

Did your Mum have genetic screening?

RandomMess · 21/04/2023 21:38

NICE guideline threshold has been lowered in the past few years.

Chesneyhawkes1 · 21/04/2023 21:38

I had cervical cancer in 2020. Because of the treatment I had, I can no longer have smears. They will always come back "dodgy"

I don't get any MRI's at all from the NHS. I'm symptom led. Which is bizarre as I had no symptoms last time. A routine smear picked it up.

I'm thinking of paying for a private MRI once a year. Cos if it comes back, I'll have no clue.

ScreamingInfidelities · 21/04/2023 21:39

I had the BRCA test as my gran, aunt & cousin all had either ovarian or breast cancer quite young. Thankfully I was negative but if I’d been positive I would’ve had a double mastectomy with no hesitation. Not sure if I would’ve had my ovaries removed, I think that would’ve been a harder decision to make.

UniversalTruth · 21/04/2023 21:42

This talks about the problems with whole body scans, I don't know if I would feel differently if I knew I had a significant genetic risk.

www.choosingwisely.org/patient-resources/whole-body-scans-to-screen-for-cancer/

SwapTheYforaD · 21/04/2023 21:47

Good thread OP.

I'm in a similar boat to you and as I get older I'm more worried.

Ovarian cancer is 'silent' as they say :(

JussathoB · 21/04/2023 21:48

ldntoparis22 · 21/04/2023 21:24

I'm late 30s. Mother had ovarian cancer and survived. Detected early. I asked the NHS whether I should have any extra screening and GP said no, apparently only exists in the case of breast cancer.

Is there a test that can be done and paid for privately, annually? I know there is the BRCA gene test but I am afraid of that- if you had it, you'd be living on eggshells, a ticking time bomb waiting for symptoms. I'd prefer an annual check that I can pay for privately. I don't think a full blood count via GP is sufficient to be able to detect cancer.

Any ideas

Hmm I admit I don’t know. But what about an ultrasound scan of the pelvis and isn’t there a blood test which can show certain levels which indicate cancer?

titchy · 21/04/2023 21:48

Nap1983 · 21/04/2023 21:26

You could pay for a full body MRI.

That would be hundreds of thousands £ surely?

RandomMess · 21/04/2023 21:55

My Mum had the BRCA gene she didn't get ovarian cancer until her 70s. Her sister does of aggressive breast cancer at 41.

Ask for a referral for genetic testing either result gives you better options and medical care than not having it.

Nap1983 · 21/04/2023 22:00

titchy · 21/04/2023 21:48

That would be hundreds of thousands £ surely?

No. Absolutely not hundreds of thousands. Will be thousands but she asked for a solution and said she could pay

LemonBall · 21/04/2023 22:02

CA125 blood test
Pelvic scan

mauvish · 21/04/2023 22:04

There are several different types of ovarian cancer, and not all of them are genetic, or associated with BRCA genes.

Ca125 is not suitable as a screening test for ovarian cancer as not all types of ovarian cancer produce the relevant chemical, whilst it instead be raised for other non-cancerous reasons. This means that you could have ovarian cancer but a normal Ca125 level, and be falsely reassured; or you could have a raised Ca125, be worried sick, yet not have cancer.

Regular MRIs or CT scans will increase your radiation exposure to levels where, over years, it can give you anincreased risk of cancer just from the scans. So that's not a good idea either unless a qualified professional recommends a scan based on signs or symptoms.

Nomad12 · 21/04/2023 22:07

CA125 blood test + pelvic scan for ovarian cancer screening. I pay for it every 2-3yrs privately.

Vegalam · 21/04/2023 22:10

There are so many different types of cancers with different markers/signs etc it would be impossible even with a yearly MRI to screen for them all reliably.

If there is a particular cancer you're concerned about, going to a private GP might help, but they also may be unwilling to offer anything further, given that investigations can cause side effects themselves (e.g. x-rays have radiation - radiation can cause cancer (of course unlikely from small dose of radiation from one-off xrays)), risks may outweigh benefits and there may be anecdotal findings that lead to unnecessary interventions.

It is stressful though!

TruthsAndALie · 21/04/2023 22:10

UniversalTruth · 21/04/2023 21:42

This talks about the problems with whole body scans, I don't know if I would feel differently if I knew I had a significant genetic risk.

www.choosingwisely.org/patient-resources/whole-body-scans-to-screen-for-cancer/

^This

GloryBees · 21/04/2023 22:12

Go on the Check4cancer website, lots of big employers offer as a benefit/partly fund checks through them. Presumably a good company to start with?

Nimbostratus100 · 21/04/2023 22:14

you can get an ovarian ultrsound every year

lkkjhg · 21/04/2023 22:30

Your mother may be eligible for BRCA testing on the NHS depending on the type of ovarian cancer she had. If she hasn't got a BRCA gene change, and there is no other family history your risk may be much lower than you fear.

Evidence shows CA125 and scans are not effective at spotting cancer in someone without symptoms. Whole body scans may reveal other things to worry you!

Those at high risk are advised to have their ovaries removed, but having a single relative with ovarian cancer doesn't meet the threshold unless there is a proven BRCA gene change in the person.

MatchaTea · 21/04/2023 23:01

Your reasoning about being hesitant to test makes no sense.
In 2023 , we are no better at treating advanced cancer than we were 50 years ago. With a very few exceptions, once a cancer is metastasised , the prognosis is quite bad.
On the other hand, we have gotten quite good at detecting cancer early and when detected early, if you can cut it off, your prognosis is really good.

Sadly, we are still on the "wait for symptoms " protocol. If a cancer is big enough to cause symptoms, it is often very hard to treat. Chemo works, but works better when you have less cancer cells. Take a solid cancer, ovarian for example since it is relevant to you. A 1 cm cancer has about 100 million cells whereas a 1 mm cancer has about 100 thousand cells. The chances of not targeting all cancer cells is way greater in a 1 cm cancer. CT and ultrasound cannot really detect cancers smaller than 3 mm.

Ovarian cancer is quite unusual because in many cases, early cancer and advanced cancer have an inverted size. Early cancer remains local and can grow big (even 10 cm) within the ovary. It is not rare for advanced cancer to be way smaller (let's say 4 cm) but this is because it is seeding out of the ovary . Therefor size in ovarian cancer is not always a good predictor of severity.

This brings us back to assessing individual risk. Protocols are made at population level not individual level and your GP is following the national guidelines.

Knowing if you have or not a tumour inducing genetic mutation can change this because then you fall into specific early detection protocols. A mutation is not a ticking bomb. Genes are the gun, and many things can activate or block the trigger. You can then adapt life style (smocking, alcohol, excess weight increase risk of ovarian cancer), have a personalised screening protocol, prophylactic surgery and so on.

There are 84 cancer inducing gene mutations . Some are very organ-specific such as CDKN2A for melanoma, other such as Nf1 or TP53 are multi organ.

For ovarian cancer, there are 21 genes
ATM BARD1 BRCA1 BRCA2 BRIP1 CDH1 CHEK2 DICER1 EPCAM MLH1 MSH2 MSH6 NF1 PALB2 PMS2 PTEN RAD51C RAD51D SMARCA4 STK11 TP53

You can test privately for those. Price will depend on provider. A US based one will be way cheaper.

We now know that more than 95% of ovarian cancers originate in the Fallopian tube. A bilateral salpingectomy is an effective, safe way to greatly reduce your risk of ovarian cancer without inducing menopause. This is an option one would opt for in case of positive genetic testing.

https://www.genturis.eu/l=eng/Home.html is a good website if you want to learn more about genetic tumour risk syndromes.

We need to change our mentality on how we approach cancer risk management.

ERN GENTURIS

https://www.genturis.eu/l=eng/Home.html

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