(Possibly triggering) cancers not bring noticed until late stage

[BrieAndOatcakes]

In the past 6 months three women in their 30s who I know have been diagnosed with stage 4 cancer (one ovary, two bowel). Two are still having treatment, one has sadly passed away. It's very sad, and also scary that it wasn't noticed for so long, one of them made several Drs visits and got nowhere. Why does this happen? Do Drs ignore the symptoms in younger people, or are the symptoms very subtle until it's too late?

My sonographer told me that the only cases of Stage 1 ovarian cancer that she'd come across were picked up when the patient was being investigated for something else, unrelated. There are v few diagnosed at Stage 2. Most are Stage 3/4.

There are unfortunately several cancers which are generally diagnosed late - including lung and pancreas, which obviously apply not just to young women.

They are trying to develop a screening programme for ovarian cancer, involving blood tests, but the existing test is too unreliable, especially for pre-menopausal woman, to be able to roll it out for the general population.

It can be hard to secure a 2week referral if you are outside the age group where the cancer typically presents.

It is horribly bad luck to have developed a cancer young, and it's compounded by it not being expected/looked for when you are,

It is the same with men and prostate cancer btw - young men are rarely affected, but when they are it is often the more aggressive fast moving type, and it is often diagnosed late because it is simply nit expected.

My leukaemia was, fortunately, diagnosed early. But only by fluke because it was a totally unrelated symptom that I took to the GP, who ordered a full blood count amongst other routine tests.

I am about 20 years too young for the type I have. With hindsight, I had a number of the (fairly non-specific) symptoms of blood cancer - but who would be looking for it when there are common causes for thiise symptoms (nightsweats in a menopausal woman, shortness of breath during exertion in a hot high-pollen month, lots of bruises in a participant in a contact sport, sore gums attributed at regular dental check up to poor brushing technique etc)

It’s the bird table, isn’t it? What do you expect to see at your garden bird table - blackbirds, pigeons, robins, tits; not vultures and hummingbirds

I think bowel and ovarian cancers are notoriously difficult to diagnose because often the symptoms are also the symptoms of other things and by the time you have ruled everything else out its too late.

I know two people IRL (as well as people online such as Deborah James) who were diagnosed with bowel cancer relativeky young. One, they thought it was appendicitis and all sorts but the investigations were carried out quickly enough to catch it and she has quite a good prognosis. The other, they thought it was loads of things, including gyane issues and it wasnt until she also started getting pains in her liver area that they found that it had already exploded in there and she died a couple of months later. She was 41 and had two little girls. Its bloody terrifying.

It's so different to, say breast cancer, where you find a lump and you are (almost always anyway these days) put onto the referral system straight away. I had breast cancer a couple of years ago and in a way I feel lucky in that aches and pains are treated more seriously, as cancer is so on the radar for me now as a patient.

When I was in my mid 30's I had a pain in my shoulder for about 2 years, I kept going back to see my GP and he kept saying it was a frozen shoulder and nothing to worry about.

I couldn't sleep one night as the pain was so bad, I traced the pain all up my arm across my shoulder and into my armpit and found a lump. Went back to the GP the next day, he told me not to worry as it was moving so could'nt be anything "sinister" and I was too young for it to be breast cancer. I went back a month later as it was still there and insisted he sent me to the breast cancer clinic where I was diagnised with stage 3 breast cancer.

My oncologist told me I'd probably had it for years and it was causing the pain in my shoulder as it was against a nerve. I had to have a mastectomy, chemo and radiotherapy.

I thank my lucky stars I didn't listen to my GP, if I had I probably wouldn't be here now. I was definitely dismissed as too young for it to be anything serious.

I've been having bladder infections regularly over the last 4 months, I'm on my sixth course of antibiotics at the moment. I've had blood in my urine, I'm constantly wetting myself so badly I have to wear adult pampers. My bladder feels as if it's dropping out of my body, every time I visit the doctors for the infections i tell them about the incontinence & how my bladder feels out of place & ask if I could have a prolapse, not one doctor has offered to examine me, I've been told that my bladder is extra sensitive because of the infections & they brush my continence issues aside even though I have told them how much it is affecting me, I don't want to go out for fear of wetting myself in public. If a man visited his doctor because he was wetting himself 5+ times a day I'm sure something would be done about it.

Nat have you been to a and e with your symptoms? If not, I would.

No I haven't, I suffer from ME/CFS & it's all I can do to get to the doctors.

How old are you Nat? Roughly?

You don't have to say, of course, I just wonder if you are in the Younger Woman category as well.

There are two sides to every story. I'm a GP and a young patient once said to me 'you missed my cancer and now I'm dying'.

Looking back at the notes, what actually happened is she came in with a set of symptoms that wasn't suspicious of cancer at that time. I investigated, found nothing and told her that I would expect it to be better within six weeks and that if it wasn't she should come back and I would refer her at that point.

She never came back and was diagnosed two years later with a cancer that may or may not be relevant to the initial symptoms. Having not come back as I had clearly asked her to and documented in the notes.

I guarantee that she is telling anyone who will listen that I missed her cancer.

So don't take everything at face value.

That’s awful SkimmedMilk but I think that’s different from the usual stories where people do go back, again and again and are fobbed off repeatedly. At one point I was going to my gp more or less every single week crying and saying how unwell I was (with proper symptoms of Addison’s) before I was taken seriously and diagnosed with Addison’s disease. I think that’s more the situation people are complaining about. If someone was asked to come back and didn’t, that’s unfortunate but that’s not your fault.

Nat, I think in your situation I would honestly get myself to a and e.
I have chronic kidney issues and it sounds like you really need some proper investigating. I know it’s very hard with the health issues you have but I think it would be worth it to maybe improve some of the issues you do have.

iVampire - yes- you were v lucky and long may it continue.

Another problem is that doctors don't seem to think outside the particular box they've put you in. A close friend of mine has just died of AML. She was only diagnosed in November, having been feeling out of sorts for nearly a year. Her GP put her symptoms down to problems adjusting to the thyroid surgery she'd had previously. It was a locum, who didn't see her as Mrs X Thyroid, who ordered the fresh blood tests which led to diagnosis.

This seems to happen a lot between gastro and gynae. I've met quite a few ov ca patients who wasted a lot of time being misdiagnosed with IBS. One ended up in A&E with what was thought to be an abscess on her colon but it turned out to be a secondary from an ovarian tumour.

Don't want to do a Daily Mail on doctors, though. It must be v difficult for GPs. Out of the thousands of patients they see with common complaints, only one or two will have cancer. Most of the referrals will come to nothing.

Sorry, Skimmedmilk - cross posted. Glad I wasn't too negative about GPs.

NHS doctors are very poor. Where I am from the second a patient mentions anything that could possibly be cancer they get checked out. It’s usually nothing and costs money to check/scares people but at least the cancers get caught early.

A lot of cancers have subtle beginnings, and people can be quite well for a while. It’s easily missed, particularly in younger people who are not the usual at-risk demographic.

I strongly doubt it’s due to GPs not listening to women, particularly as the majority of GPs are female.

Racecardriver that’s simply untrue. Our NHS doctors tend to be amongst the best in the world - although given the numbers there are a few rogues. It’s very poor practice to check out anything the minute it is identified (I assume you means scans etc). An annual gynae check isn’t likely to pick up very much.
Biopsies carry risks - significant risks.
CT scans carry significant risks. It’s one of the triggers for my cancer - over investigation.
Over treatment carries real risks.

Thank you to everyone who has replied, and to those who have also had losses.

This has actually been very informative regarding the rules for GPs to escalate investigations etc.. And sadly/scarily it seems that for some people there really just aren't any symptoms until it's too late.

'NHS doctors are very poor. Where I am from the second a patient mentions anything that could possibly be cancer they get checked out. It’s usually nothing and costs money to check/scares people but at least the cancers get caught early.^

The corollary to that is that my patients who go abroad to 'get investigated properly' spend a fortune and come back with a load of incidental findings. I'm not saying the NHS is perfect but there's a lot to be said for evidence based investigation not just "I want a scan and I want it now"

It's not just down to the doctors though. Woeful ignorance on the part of patients is to blame too - and I'm talking about myself here. Ovarian cancer is notoriously difficult to dx, partly as others have said because symptoms can be attributed to many other ailments but also because there is often no pain. The discomfort from bloating, inability to eat, minor aches and pains is often noticed only when the cancer is advanced.

I dismissed my symptoms as weight-related and it wasn't until I got so breathless because of lung issues that I went to the doctor. It never crossed my mind for even a second that I might be ill - despite having a close friend who had had it the year before and was fortunately dx at stage 1.

I suppose what I wonder, and has been touched on here especially by TwitterQueen1 is whether the symptoms are really so innocuous they're easy to overlook, or whether Drs aren't listening when things are awful. If cancer starts as a minor ache then it's understandable not all minor aches are investigated, but if it keeps you awake at night and they're not checking it out, that's scary. And bowel cancer, I've not asked my friends because it's personal, but is it a case of a bit looser poo for a few weeks or a major change like suddenly going 5 times a day? I realise it's different for everyone though. And I guess I'm just trying to understand why these women I know got so unwell so young as it's so unfair.

OP, I don't think anyone understands it. It is bloody unfair and heart-breaking. It's all very well blaming obesity but that doesn't account for the vast numbers of slim, fit, healthy, YOUNG people who are being diagnosed every single day.

I fat-shamed myself. I was 13 stone but walking my dog every day, line-dancing every week, going to the gym 3 or 4 times a week too. Urgent need to wee? You're fat and your pelvic floor is weak. The breathlessness and upper back pain, along with a weight gain of a stone, didn't happen until just after Christmas - my dog died very suddenly so no exercise, xmas weight gain... blah blah blah. In fact the weight was ascites - fluid build up in the abdomen. The breathless was pleural effusion. I was sent straight to A&E at my ultrasound.

I can't speak for bowel cancer but I do know that it's too easy to dismiss symptoms. I guess all I want to do here is say to everyone -

BE AWARE of the symptoms of ALL cancers. You can feel a lump in your breast. You can't feel a lump in you abdomen until it's big. You can't see what's happening in your colon / bowel.

just to clarify - I'm not saying you were blaming obesity!

-I'm not saying you were blaming obesity phew! I'm definitely not, none of the people i've known with cancer recently have even been obese, though I know statistically it's a risk factor.

In your case do you think you put off seeking help because you were afraid what it might be? I wonder if that's a factor for some, especially younger people who think "well the chances are it's nothing serious".

(And TwitterQueen1, I hope your treatment is going well and you make a full recovery )

I had symptoms which someone who had stage 3 bowel cancer for 2 years before the NHS referred me for cancer testing - infact went private in the end. I had been to my doctor several times before with symptoms but got brushed off largely because I had other symptoms at the time so had bleeding from vagina, bladder and bowel and lots of other symptoms. I was referred to gynae and for bladder as non urgent but bowel just left. Thankfully, none turned out to be cancer but anything other than the gynae one it would have been picked up very late stage due to delays. If I had gone to doctors each time for each of my symptoms individually I might have got help quicker but I had about 20 symptoms and also had a job and kids, one with ASD and I simply don't have the time to do that. The doctors also often say come back next week but school want me in several times a week too and there's a limit to what a job will take. Plus ended up seeing different doctor each time. Was 6 months after being referred they did check for bladder cancer and they had lost my records by then. The hospital doctors seemed overwhelmed and some were good, some not very good and different one each time.