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Petrified! This is me and what's going on?

MattR73
Posted by

Hi All,

        My names Matt and I'm 44. I don't want to tread on toes, as I'm not sure what's wrong and haven't been diagnosed, but I don't know where to turn.

I started to feel unwell October 2016. In January I developed a pain in my right side which I thought I had pulled muscle. In the first week of March I developed a severe pain in my left shoulder blade, nausea and cold sweats, so I took myself off to my gp. He prescribed omeprazole and a sicknesses tablet. I wasn't impressed as I thought this was treating the symptoms rather than finding the cause. Since then I've probably been to my gp every 2 weeks and said I'm really not feeling well at all. At the end of April my gp eventually ordered loads of blood tests and an ultrasound of my gallbladder, kidneys and pancreas that all came back normal. In May my gp weighed me and I was about 19 stone and at the time my alarm bells starting ringing as I knew I was around 22 stone around Christmas time. In June I started feeling light headed on top of all my other symptoms, so I went back to my gp and was weighed again and now weighed 18.7 stone, so my gp referred me to see a gastroenterologist. I went back to my gp 3 weeks later and when weighed I'd lost another 1 1/2 stone in 3 weeks!!! The look of panic on my gp's face was scary, he ordered lots of blood tests including 2 tumour markers that all came back normal. He changed my gastroenterologist referral to the fast track 2 week maximum wait. I had a consultation within a week and I'm having a ct scan with contrast Monday, so waited 17 days from gastroenterologist consultation to ct scan. I had a chest x ray last week only because I told my gp I wanted one, and that was normal.

Can anybody help.

How accurate are tumour marker blood tests?

How accurate are contrast ct scans?

I think my gp has been negligent!?

I asked my gp why haven't had a stool and urine sample test and he looked at me like an idiot. Surely you can tell a lot from this?

Many Thanks

Matt

gregm
Posted by

Hi Matt,

I can hear how worried you are, and clearly there is something that needs to be sorted here. I had pain in my back, drenching night sweats, odd heart palpitations, much worse after a large meal etc. I can understand some of your worry.

The symptoms you prescribe are quite broad, and so the normal procedure is to do tests, and keep doing tests until they find a test result that gives them a clue. If 99% of the time the symptoms are due to a specific cause, then they start with the 99% tests, not the 1% tests.

Its good that your blood test came back normal, but not so good as it gave them no clue as to what is wrong, just more information on what it isn't. Do you know which blood markers they tested for?  in my cancer there are 3 they check, 1 is only present  in 10% of cases, another in 50% of cases, and the final marker LDH just shows a battle going on at cellular level, but that can be raised by infection, strenuous exercise, heavy drinking.

Blood tumour markers are often a vague clue in solving  a mystery, not always a smoking gun.

CT scans are amazing, they can spot abnormalities that are down to the size of 1mm, and adding the contrast makes it even better to read. Sometimes scans, like x-rays, show something that is 'normal for you', but if there is anything major going on they'll spot it. I hope your x-ray was clear.

Ultrasound technicians are also pretty good, they can spot things almost as small as can be seen on a CT scan, but they don't have the resolution to say much about what it is - just that its different density and has/doesn't have a blood flow.

When I was diagnosed (well on the route to being diagnosed), I didn't have to give a stool or urine sample, despite my cancer being testicular, and hence in that region. It's just of no use in diagnosing against the symptoms I had. Likewise an MRI scan would not have been the right diagnostic tool.

Once they eliminate the likely or obvious causes, they then move on to the less likely causes. The probability of my cancer was 0.007%, and so it would have been odd for them to start my first tests with a CT scan without having other more appropriate ones first.

I think your doctor is (almost) as concerned as you to find out what this is, and is doing the tests. The CT scan is a pretty good one, and if anything is where it shouldn't be they'll know from that.

The CT scan itself is pretty simple. A quick contrast injection through a cannula in your hand, you almost immediatetly get a slight metallic taste in your mouth, then a few seconds later warmth in abdomen/groin like you've wet yourself. They then photocopy you twice by passing you through a Stargate object, and that its it. Sit in the waiting room for 10mins until they remove the cannula, and go home. Results need to be reviewed by specialists, so it can be a few days to hear.

Greg

MattR73
Posted by

Hi Greg, Thanks so much for taking the time to reply. I hope your treatment is going well?

My chest xray was clear. The tumour marker blood tests i had were ca199 and ca153. My other blood tests were FBC, U&Es; LFT's, CRP and PSA.


Thanks for the great information on the CT procedure. I will be having it done Monday afternoon and it can't come soon enough.


Matt

gregm
Posted by

Great on the x-ray!

Wow, that's a broad spectrum of tests, it should show up if something is wrong.

Greg

MattR73
Posted by

Thanks Greg, CT scan tomorrow. Something isn't right. Just hope the CT gives the doctors a clue of what's wrong.

Matt

gregm
Posted by

good luck Matt

G.

MattR73
Posted by

Cheers, Do you know roughly how long CT scan results take with the NHS.

Cambridge
Posted by

They can be available the same day but in most cases they are reviewed by who ever asked for them to be done and usually go to a muti disciplinary meeting 

And you have an appointment with who again asked for scans usually in a two week period.

MattR73
Posted by

Thanks

ardmore
Posted by

I had a CTScan last Friday then had a phone call to go to the Hosp. on Monday! So quick! Saw the Dr. well, a Dr.! who said i must have   Biopsy of the 2" lump in middle upper chest not far from windpipe !! So I may not have lung cancer as I thought but poss. Lymphoma!! So I may have to join another  site!! Cannot operate, he said, so I assume when I have had the biopsy i will be called in for a "TEAM" ,Chat! As an eternal pessimist not sure I can be brave through chemo/ radio and side effects. My husband says "you have to fight it".... easier said than done.!!  At present all on NHS but we do have private medicine and I know I am being silly but the thought of being in a shared Bay of six people gives me nightmares. And losing my golden locks!! (Well silver actually)! Worst problem is shortness of breath still, but better than 10th July when it first started. So I am just drifting round the apt. We only downsized last August and moved so I am missing my usual space! Sorry to ramble on...... Hello to src60

e nightmares. And losing my golden locks!! (Well, silver actually

Gragon
Posted by

Hello Matt,

Abbreviations are a nightmare and the health service is addicted to them as everything they do is a long technical name or phrase.

FBC is full blood count and checks about 11 different elements of your blood, U&E's is Urea and electrolytes and checks salts, creatanine and urea, LFT is Liver Function test,   CRP is c-reactive protein and is a marker for inflammation and tissue damage, PSA  is prostate-specific antigen is a protein produced by the prostate and can indicate a risk of prostate cancer (but is not so far as I am aware diagnostic)

Your GP will be sent copies of all reports but you can also request copies as well so that you an take them away and study them at your leisure.  The test results often indicate what the expected normal levels are but high or low levels might not indicate anything sinister but might simply be your body reaction to something like a virus or minor injury.

I hope your CT scan was OK and that you get your results quickly.

All the best,

Gragon xx

MattR73
Posted by

Hi Ardmore, 

Thanks for the reply and i'm sorry your CT showed something! Make full use of your private medical, if your hospital is anything like mine it's like going back to the 50s! But the private part is very nice and modern.

Good luck to you!

MattR73
Posted by

Hi Gragon, 

Thanks so much for the information! Had all those bloods in April and all normal. Had all those bloods again + the two tumour markers in June all normal.

The CT was ok apart from i don't have easy to find veins so they had three goes with the iv in my right arm and a couple of goes in my left. 


I've not heard anything yet, but i just know something isn't rite. I've never felt so ill and it's gone on for many months and i'm still losing weight rapidly.

Grogg
Posted by

Sorry I'm a bit ignorant but does a FBC test you for diabetes?  Weight loss is common symptom and type 1 can come on at any age (called late onset - see diabetes.org.uk).

I was diagnosed with type 2 last November - I had lost almost 3 stone (started at 15) over a year and my blood sugar was very high.  I was diagnosed with a hb1ac test which measures your average blood sugar over the previous 8-12 weeks.  You can get a quick test for free in your pharmacy.

MattR73
Posted by

I'm not sure if FBC tests for diabetes. I was tested for diabetes in Nov16 and i know one of my blood tests in June was a glucose test. I'm pretty sure i'm not diabetic. I've lost 5/6 stone since Christmas.

Cheers