Probably cancer but no diagnosis after two months. Is this normal?

[franke]

I'll try and keep this as short as possible.

DM (90 yo) started losing weight and hardly eating around 9-10 months ago.

She only went to her GP in May, so about ten weeks ago. Doctor sent her for a CT scan on May 25th and she got the results three weeks later. Scan showed thickening of the pancreatic duct and part of her bowel but nothing in the oesophagus, even though DM felt as if there was some kind of blockage there. Bloods and liver function normal. No cancer found.

She was referred for an endoscopy which happened at the beginning of July. Tumour (about 5cm and difficult to get the endoscope past) found in the oesophagus (apparently higher than the CT scan had looked) and doctor said he was "90% sure" that it would be malignant. Biopsy results would take 3-6 weeks. Whilst in the endoscopy unit we were visited by a Macmillan nurse.

DM was referred for another CT scan which happened within a couple of days because of a cancellation. Since then we've heard nothing.

I suppose I just want to know how the system works. I'm not in the UK but coming back again next week. DM is frail, but holding her own. Extremely thin. The endoscope doctor suggested they might be able to put a stent in. But I have no idea how that would be decided and surely as time goes on it becomes less feasible. I feel a bit helpless - of course DM is of the 'make no fuss' generation but I feel as if she is fading away in front of me.

Does anybody have any words of wisdom? Or advice as to what I could helpfully do next week when I'm there? Or do we just have to wait it out?

Would this be better in 'Life-limiting illness'?

Do you have the contact details for the MacMillan nurse you saw?
If not then phone the hospital switchboard and ask for the Upper GI clinical nurse specialist, they should have an answerphone.
Or do you have the name of the consultant who she was under for the endoscopy? Could also try asking for their secretary who should be able to signpost. It sounds like you could do with a conversation.

Thanks so much. You're right we just need a conversation with...someone. I'll pass on these suggestions to dm. She's been back in touch with the Macmillan nurse but they just say they'll be calling her for an outpatient meeting , it's all very vague. But I guess they can't do anything until there are some concrete results to go on 🤷🏻‍♀️

From the fact they’re talking about stenting and what you say about her being very frail it sounds like they think that an operation to remove it probably isn’t possible and chemotherapy is likely to make her feel worse and not really add anything. The biopsy might say if it’s a particular type of tumour that might respond to tablets and the CT should say if there are other parts of the body affected which should give more overall information.

The stents are used really to keep the digestive system open to allow her to continue eating and drinking if things are starting to get blocked, they’d generally think of doing them if swallowing symptoms get worse. Opening out something that’s already open doesn’t really work and the stent just slides so it’s probably reasonable to hold off on that but it would be a good idea for her to know what to do and who to contact if that is happening and she starts getting symptoms.

Would your DM give permission for you to speak to the MacMillan nurse and would that be helpful? They probably would if DM didn’t mind.

Have you chased up the biopsy results and treatment plan with the GP or directly with the relevant team at the hospital? People can get rather lost in the system, particularly at the moment when the NHS is pretty much in constant crisis mode.

I had to do a lot of chasing up for my DM earlier this year. They found a mass in her bladder after she was hospitalised for a fall at the beginning of April (had had symptoms for ages, dismissed as UTIs); it took until early June for an op to try to remove it and take material for biopsy, and we didn't get the results of that and a chat about further treatment options until last week. Getting to that stage involved quite a lot of phone calls on my part.

Are there any letters from the hospital regarding her treatment so far which might have names/phone numbers for relevant teams to chase up?

DH had a tumour in the oesophagus. It's called a GIST. The op to remove it involves removing all of the oesophagus and pulling up the stomach into a long tube to join the bit that's left. It's not an op you'd want to put an elderly person through.

I would consider asking the GP for a referral to the palliative care team. Once my DH's care was transferred to them the difference was like night and day. The care is the same but there is someone we can always reach who takes all the responsibility for liaising with everyone involved, explaining what's happening, advising on practical details, answering questions etc.

I appreciate that it may be a little early if you don't have a firm diagnosis but it doesn't hurt to ask.

I really appreciate all the replies here, they're really helpful.

So dm phoned around this morning as suggested. She didn't really get anywhere so ended up phoning PALS at which point everything started to fall into place. Long story short she has an appointment next week, when I'm there (yay) and a letter on the way to confirm.

I think I could phone the Macmillan nurse myself but I'm very wary of not treading on dm's toes. This is her gig and I have to let her deal with it at her own pace while cheering on from the sidelines (and screaming inside).

And yes, she's too frail for any really invasive treatment or an operation but hopefully with a diagnosis she can get the support she needs. I'm pretty sure we're at or close to palliative care. That's interesting about the stent Aspidistra1 - I was really concerned we'd missed the window of opportunity.

Also having done some reading around the subject, it seems this time frame is not out of the ordinary. But I think we just don't have time. Dm knows she left it and left it, the NHS are really not at fault here, they've done everything they said they'd do but I was really worried that she'd been lost in the system as exexpat suggested.

Sorry for the long, rambling posts but it helps to put it all down here. Exexpat, MrsOwainGlyndŵr and MontyDonsBlueScarf I'm grateful to you for sharing experience of what must have been a painful time