To think there is an annual full body cancer check?

[ldntoparis22]

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

Oh great :(

My mother had ovarian cancer. My gp told me there are no genetic markers I.e no hereditary links and I mustn't worry, so I won't. please don't worry.

Such a useful thread

Thanks all

Didn't Rod Stewart discover throat cancer by having a private CT scan , it was many years ago now .

So mammograms and once every three year smears are the way forward?

I had a full body scan (pet) pre having surgery on a large bowel tumour and it picked up incidental thyroid and lymph node cancer which I then had surgery for. I had no symptoms or lumps and it had spread!

There is no radiation exposure with MRIs. It’s just a giant magnet. CTs, yes, should be limited but current day CT machines have much much much lower levels of radiation, so much so that the risk is becoming negligible.

OP, do the genetic testing. A full body MRI is expensive, it takes a long time (over an hour), it’s a drain on resources and it’s highly discouraged because whenever you do a scan on anyone, something (that’s 99% of the time nothing) is flagged that leads to a cascade of ultimately useless imaging and investigations. It’s stressful and anxiety inducing and often for no reason. Human bodies are imperfect. If you know you have certain risks, you need to do the genetic testing and then act accordingly.

There isn't a test so far but I'm part of a study group for a NHS research project where they are hoping to detect the probability of multiple cancers from blood tests. I'm hoping its successful enough to be rolled out in several years time.

There's a huge amount of radiation in every MRI

I have the BRCA 1 gene and had a double mastectomy when I found out a few years ago. I will be having my ovaries removed when I am 40 (trying to get as close to "normal" menopause age as possible.

As a PP has advised its the CA125 blood test that looks for ovarian cancer. I have never had this done though and there is no routine screening for ovarian cancer available.

MRI does not use any radiation. It uses radio waves, not radiation.

There is much research at the moment in developing a test to detect ovarian cancer, but until then, a transvaginal ultrasound annually would be perhaps some reassurance. I have one every five or so years, for similar reasons.

@lemonchiffonpie
I stand corrected. That is good news.

It is because there is no way of being that accurate, there is no definitive ‘full cancer check’.

There is also the real harms by ‘false positives’ which increase with any type of screening, and can result in unnecessary interventions. Also with many cancers it is very difficult to tell if they are slow growing, or fast growing. Many of us have ‘pre cancerous’ or small cysts etc in our bodies which may or may not at some point turn into cancer. It is very tricky to know which ones will or won’t.

There is a medical, scientific process that the NHS has to go through before introducing any type of screening. How accurate is the screening? How big is the problem? What percentage of disease does it actually pick up?

Breast screening is one of the most common cancers, and it has very good treatment and most people survive and recover from it. The screening still is not 100% accurate, there are false positives and they do miss some. But because the potential benefits outweigh the potential harms, screening is offer for the over 50s.

Generally, to be a good ‘screen’ the test has to be accurate enough and there must be treatment.

But for us as individuals, we can decide to have more tests if we want or can afford it. But do weigh up why. If you have a family member with a certain cancer, then it does make sense to be more aware of the possible signs and symptoms. For example if you have a relative with bowel cancer then a year FiT test is a good idea.

There isn’t

Doh pressed send too early. I meant to add you might be confusing it with CT scans

@Poopgal

Thanks, now I understand my error.

your GP told you? That makes no sense. HOw does your GP know? Do you mean they sent you for genetic screening and reported the result to you? It isn't something a GP can test for

I'm adopted. The nhs won't provide any form of genetic testing because I can't provide a family history due to records being destroyed.

This is a very interesting and helpful thread. I had a private breast screen a year ago, and would be able to pay for other tests.

I have a genetic condition that elevates my cancer risk. I've already had endometrial cancer. I don't feel like I'm a ticking time bomb. I may or may not get another cancer, it's not a dead cert. Pay for genetic testing if you can OP and find out either way.

Interesting thread, thank you to the knowledgeable contributors. Hope OP doesn’t mind if I add a question for anyone who might be able to answer it. My mum and her mother both died of stomach cancer at fairly young ages. As this is one of the less common cancers, that seems like a coincidence to me so I’ve wondered if there’s a genetic component (although I realise there could be lifestyle causes which my mum and grandma may have had in common). I saw a genetic counsellor who thought it was unlikely to be a genetic cancer, but couldn’t say for sure as we couldn’t find any details on the type of stomach cancer my grandma had.

There is no screening for this type of cancer in the UK, as far as I’m aware. I do try to have blood tests fairly often but I know these can’t always show problems. Waiting for symptoms is likely to be a disaster in the case of stomach cancer. Once people feel ill with it, that’s usually because they are indeed very ill.

I wonder about having a a regular gastroscopy. Grim thought but I would do it if I thought it would help show anything. If any of the clever folk on here knows anything about stomach cancer or screening for it, I’d be grateful to hear from you!

Can you let me know how to find US gene testing firms?

My mother died within 7 weeks of ovarian cancer diagnosis at 62. She had pain and bloating for 2 months before. Treated for diverticulitis and then sent for a scan which revealed a mass in the abdomen.

Ca125 was normal. Nothing from trans vaginal scan - so assumed bowel or pancreatic and did corresponding surgery.

When the tissue came back 2 weeks post surgery it was found to be ovarian. Think ‘epithelial’ which means single cells leave the ovary and metastasise in a diffuse way so the abdominal mass was a secondary ovarian tumour.

My point is that TV scan and Ca125 showed nothing at advanced / end stage for her - I wonder if I had genetic testing and it was positive - what else could then be monitored if TV scan and Ca125 show nothing?

@ldntoparis22 All ovarian cancers are epithelial.

With the exception of sarcomas, all solid tumours are epithelial meaning they originate in the lining (internal or external) of the organ, so in other words, 90% of all cancers are epithelial and then you have the blood cancers, sarcomas and lymphomas.

Invitae is the biggest genetic testing provider in the US and the one used by most hospitals
https://www.invitae.com/en/providers/test-catalog/test-01204 . Have a look at https://myriad.com/gene-table/ as well

I am extremely sorry for your mother. There is no optimal screening so far, reason why genetic testing is a great opportunity . If you were to test positive for a mutation, you have several options. First, if you are done having kids, you could remove your Fallopian tubes. 90-95% of ovarian cancers actually originate in the Fallopian tubes.
Once you are in menopause, you can remove fallopian and ovaries.

Then lifestyle, lifestyle and lifestyle. Even for BRCA1 and BRCA2 , there are programs for women who don't want to take surgery route.

@waterlego Your genetic counsellor should have mentioned the CDH1 gene, especially with early onset. Yes, your mother and grand mother might have shared habits or traditional foods (salted or smoked fish in abundance? preserved meats and vegetables in large quantities?), but this is less likely than having a CDH1 mutation. In addition to this one, other genes might also give a predisposition .

You could also test for Helicobacter pylori, it is a breath test. This bacteria can cause stomach cancer and it can be shared in the same family, especially if they live together. In a way, Helicobacter pylori runs in families, even if not technically genetic. Once you have a pylori infection , it can go undetected for years and years. Easy to treat and eradicate with antibiotics.

That’s excellent thanks so much @MatchaTea

@Ooolaaaala , sorry about previous post, got the usernames mixed-up.

I also wanted to suggest a way around the hurdles of outdated guidelines : to simply ask for female sterilisation. The removal of the fallopian tubes is the ideal procedure since ligature still carries a risk of ectopic pregnancy .
This of course if you already have children and do not want them. It is important to remind that this will not induce menopause nor lower the age of menopause.

It is the only proven preventative measure for ovarian cancer. Look at this webinar on the GENTURIS (ERN GENTURIS is the European Reference Network (ERN) for all patients with one of the rare genetic tumour risk syndromes, so it is an offical Multi-government website, not a blog) called Prevention of ovarian cancer
Scroll down to Thematic Group 3, 22-06-22 and click on view. https://www.genturis.eu/l=eng/Education-and-training/Webinars.html you will have to fill a form and then can watch for free.

This thread is so interesting - thanks @MatchaTea for all the info. DC has an Rb1 gene with recurring cancers. I’ve been toying with the idea of a full body private MRI annually as some associated cancers like lung and kidney have late symptoms. Not sure there is a better way of keeping track without relying entirely on symptoms!