Waiting weeks for scan results - possible cancer. What else can we do?

[BigPandaTinyDragon]

My partner (mid 50s) had an op to remove part of his intestine last November, during this ‘suspicious’ cells were found although we only discovered this weeks later. He was booked in for a PET scan in February to find out if there is anything further to worry about and we were told the results would be available in 3-4 days. He’s been chasing his clinical team and they’ve now said it will be at least another 2 weeks before he hears anything.

We’re both so incredibly stressed and frustrated at the continual lack of communication. It’s hideous not knowing if anything is wrong and if it is all this time is being wasted. I lost my dad to a similar cancer last year and it all feels too similar.

Is there anything else we can do? Any advice very welcome, I’m so worried.

The scan probably has not yet been reported/reviewed by a specialist radiologist yet, so no one will know what is on the scan to be able to tell you. Does he have a nurse specialist involved at all - I would ask them if the scan can be reviewed at a cancer mdt and then discussed with you?

Yes apparently it’s gone to a specialist team at a different hospital, he’s already had some dealings with them so that may not be a bad sign but they don’t seem to review things very quickly which seems ridiculous in the circumstances.

You could explain the anxiety & ask your gp team to chase hosp

We tried that today but don’t seem to be getting anywhere. I want to take the results and have them assessed privately but it doesn’t seem to work like that. I just don’t know what else we can do - how can they be so casual about someone’s life/health? 🤬

Do they have the NHS app and access to their online records?

Vista health - private - can be good - i used them last year when had a cancer scare

I don't know they are being casual. There is a catastrophic national shortage of radiologists and huge numbets more scans being done than can be reported

Yes I guess that sounds a bit flippant, I know first hand how tough things are in the NHS. I’m just so frustrated that more isn’t being done and people like my partner are the losers.

Honestly it’s very unlikely to be cancer if it was done over 4 weeks ago. Usually there is an MDT weekly and if it’s cancer you hear straight after that. As you haven’t heard it’s probably just a case of there not being anyone available to ring you.

Sorry what is MDT? This is exactly what I’m hoping but I’m under the impression the results haven’t been looked at not that the info just hasn’t been passed on.

Mdt - multi disciplinary meeting

Multi disciplinary team*

I had a ct scan last year with multiple abnormalities - still took them over a month to tell me & then request urgent mri

( mine might of been bit longer as there were delays where i was told that the person who refered me for ct scan = then on mat leave etc - i had to be ' re ' allocated someone )

Results are discussed in an mdt meeting, which normally happens once a week. There is a limited number of slots. Attending will be radiographers, surgeons, pathologists, and doctors. Results are discussed, and then plans are made for the next steps.

I think a 3-4 week wait after a PET scan is normal.

Of course, the wait is agonising.

But there are thousand in this position, even at the same hospital, waiting for their results too.

Good luck OP. X

As per PPs an MDT will be held with all the information available. Sometimes things aren't clear cut and old scans or a specialist further opinion needs to be sought or maybe tumour markers need to be waited for.There isn't much point getting half the picture and the private sector is most unlikely to be quicker. It is awful having to wait but it is not a sign of casual delay or even the creakiness of the NHS . In most cases it is a justified wait .

I had an MRI in October, it took til February to tell me I had a 2cm tumour despite the radiologist recommending MDT and further investigation. My GP was furious because she didn't know either. She arranged a nuclear scan which showed it had grown and the uptake had increased however I can't get an appointment for discussion/treatment for 8 weeks. And that's at a private hospital. It's shocking, especially as I'm in pain but I can't get an appt for pain relief for a month. OP I honestly don't know what to suggest, but I feel your frustration.

I think it’s the lack of communication that is worst, we literally never get told anything unless we chase, they won’t email any information so there are letters that we’ve still never received because Royal Mail are similarly useless. I know it’s nobody’s fault personally but I’m so angry at the poor service we receive.

@robinsnest1967 really sorry, I hope you get some answers and help soon

@worldwidetravel2017 i hope you’re getting sorted now

Can you get access to some letters via the patients nhs app - in the documents section ?

I had a large number of urgent referals last year - the hosp would ring my mobile from private number.. & id get appts via text..

Macmillan can be good to talk to - they can be a comfort
& A fountain of knowledge..

Thankfully the ' mass - on my liver was not cancer..

I was in hospital yesterday for another colonoscopy - my 3rd in a 10 month period - i had 9 more bowel polyps seen & removed yest - awaiting histology - i live with a high risk of colon cancer 4 the rest of my life... colonoscopies save lives..

I gained 4 other new diagnosis last December..

Flying on hols next week _ much needed..

Still grieving a miscarriage & a close family death
But aware my situ could be worse

When i was awaiting to hear if i had liver cancer - there was a blood test NHS gp put me in for - fefo aplha something..

Depending on your other halves area of concern - always wise to check in with gp - they can see some results on system sometimes and thelr team can chase stuff sometimes

When I had a test for breast cancer the cells were sent to the USA to be tested.

Thanks @worldwidetravel2017 sounds like sadly you’re in a very similar situation - he’s had multiple colonoscopies and polyps removed (as did my Dad) so I really sympathise. I hope you enjoy your holiday.