Any drs please? Super freaked out

[Namechangestimes100]

Sorry I’m posting for traffic.

Might be a bit graphic for some

ive had crazy crazy bloating and pain for months, maybe years. Bloating is so severe I gain 5/10 inches over my tummy, feels so heavy but not rock hard. Other symptoms too, mucus in stool, changing bowel habits, weight gain (not a lot 2kg but not able to shift).

managed to get through to my GP who did some bloods, fbc all clear great and a stool sample (no blood in stool or h pylori but elevated calprotectin- 350 to be precise) Receptionist called back, said indicative of ibd or cancer and to try and get a drs appointment for next steps… I’ve been calling and calling and showed up, both Monday and today, can’t get one, will obviously try again tomorrow but I’m starting to freak out. I’ve fallen into the google trap, and google told me that levels of 200-300 are more indicative of cancer than crazy high numbers

any medics here? I’m worried about bowel cancer, and ibd (but to a lesser extent) mums friend just died of bowel cancer because it was just dismissed for so long.

Not much help, but until you have further relevant tests and investigations, I'd say it's impossible to say one way or another.

So sorry you're going through this. If it's any help at all, I have IBD (Ulcerative Colitis) and my calprotectin results have often been in the 400s, and my white blood cells normal. I don't experience significant bloating but I think many with IBD do. Have to say I didn't even know that high calprotectin could indicate cancer. It must be absolutely awful to be told that and have to then wait, but I expect when you do manage to speak to the GP and referred to a gastro they'll be able to tell pretty quickly what's up with a colonoscopy.

Not sure if this reassures you, but I had raised calprotectin and had a note with the results on from the gp saying it could indicate malignancy or IBD (similar to what you've been told). I mentioned this to my gastro and he said calprotectin is not the test they would use to check for cancer. I had a colonoscopy and all clear - the raised levels were never explained! Definitely still keep pushing for a referral though. Good luck!

No blood in poo (negative FIT) makes cancer less likely (<2%) and sounds most like IBD (ulcerative colitis or crohns disease). You need an urgent colonoscopy by being referred as a2 week wait referral by your GP. Hope you get an appt soon.

They didn’t do a FIT test though :(

Fucking hell

Put in a formal complaint

That’s reassuring, although I never thought I’d be grateful to hear I might have ibd. Life is funny

I will when this is all over, I just hear cancer I go to panic. Both parents had cancer, one died from cancer complications and then mums friend with bowel cancer and having had this pain and bloating for years, i sort of spiral which is why fighting and that lot just isn’t in my vocab right now. I’ve had to fight for referrals before (pnd so not the same but having to battle to be taken seriously pushes me over the edge worry wise)

id complain thats shouldnt happen receptionists ar enot qualified to say that

I wasn't intending to be 'unhelpful' OP, the reason I asked why you didn't book an appointment when the receptionist called you, is that my DH is currently having a lot of investigations done, and every time the surgery have rung him about results they have booked an appointment there and then for him to go in. It would appear that your surgery works differently to ours, but I really think the comment from

'Mannymoomin · Today 19:58

This is really unhelpful, yet typical of MN users to become judge and jury questioning EVERYTHING.'

Was unnecessary, and much more 'judgy' than I was being. You have now explained that your surgery won't make advanced appointments, which answered my question, and doubtless other people's too.

What are some symptoms @Sundayrain if i may ask?

Understandingly you are worried, and you have definitely received poor treatment from your GP practice, but, and maybe a dr will come on to confirm, my understanding is that one of the signs of bowel cancer is unexplained weight loss. Since you have gained weight I would take this as a sign that it isn’t cancer but obviously you need to get to further advice. Easy said but try not to worry.

This situation is very strange, as I don't understand any circumstances in which a receptionist would relay the kind of information you have been given here.
I would expect that the GP would have seen the results and if they were concerned it was indicative of cancer they would have done a 2 week wait referral even without seeing you face to face. A GP would not (should not) just sit on that info for a few weeks whilst you battle to get an appoint.
Call and speak with the practice manager tomorrow.

Email the practice manager and explain exactly what has happened and what you have been told and that you can’t book an appointment after being told to etc and that you want to escalate a formal complaint

do it now and ask for a call tomorrow and explain the stress of not being able to get an appointment and the stress it is causing never mind potentially any potential cancer is not being treated

Absolutely this, complain to the Practice Manager tomorrow.

Do you have the econsult system at your practice? There's normally something on the practice website about it. Fill in the econsult form stating all the details and ask for further tests/referral. Ours is normal responded to within 24 hours and it might even be just an email or phone message from GP to say it's been referred to the relevant specialist. Sometimes it's not worth seeing GP as they will just refer on based on test results but seems to be an efficient service at ours.

Exactly this. I am guessing the OP has googled causes of a raised calpro and fixed on the cancer. It's an unusual cancer marker. I don't know a single GP surgery where reception give that kind of clinical info.
However you should be able to speak to a GP.

You said in your first post that there was no blood in poo - the test to look for blood in the poo is usually called FIT test. Sorry if I've misunderstood, but if this has been checked and is normal that's a really good sign. Other things can cause raised faecal calprotectin that aren't as scary as IBD or cancer but definitely needs looking into asap.

I googled after being told, I called for my results and was told you need to see a dr, I said why and she said it says you had raised calprotectin and that can indicate inflammatory bowel conditions or sometimes cancer… not the thing to hear on a Friday afternoon, wish I remembered her name

Agree with previous posters about speaking to the practice manager if you can't get anywhere and that it is worth making a complaint about reception staff giving clinical information without you being able to discuss it with someone who can explain it to you properly. Not a GP but I imagine that an abnormal result like this would be getting a referral sent to gastroenterology even if you don't get an appointment - perhaps the receptionist can see if the referral has been made even if they can't get you an appointment to discuss?

Sorry I meant on looking for myself, but tmi I know, I didn’t have a result paper with FIT on it, after not getting an app I asked for my results printed to take private

Did the receptionist actually mention cancer or did you get that from googling? I'm pretty sure they're not allowed to deliver that kind of information. At most, it should be "Your calprotectin is raised, so you need to make an appointment with the doctor to discuss." Stop googling! Dr Google always says it's cancer or MS.

Hi, please don’t worry as this makes these symptoms worse, the 350 calprotectin tablets is what mine was when I was diagnosed with IBD, the bloating, pain & mucus too. Stress exasperates the symptoms, unfortunately when giving those results, your surgery doesn’t obviously automatically make you an appointment, you will need further tests & scans for a diagnosis & referral to Gastroenterology. I hope you get to speak to your Gp quickly & referred on to get the tests, but I know there are long waiting lists for Gastro, so if you are able to go private I would do so, even just to be tried on meds to help elevate the symptoms a bit.

Yes she said those words cancer or inflammatory bowel

During a flare of my ulcerative colitis my Calprotectin tends to be in the 300-400 range.

Bloating, discomfort, elevated frequency/urgency of needing the loo, blood, mucus, fatigue are all symptoms of UC.

I'd imagine the GP who ordered the tests will have automatically referred you to gastro at the hospital for further investigation.