step mum’s cancer and confusing hospital appointments!

[SandlakeRd]

Hi

I am hoping for a bit of advice. My step mum had breast cancer (stage 3) four years ago and had has been ok since.

However she had a CT scan 10 days ago due to weight loss (no other symptoms). She had to call to chase up a follow up appointment as she hadn’t heard anything after a week. They said they were struggling with appointments and she mah get a cancellation this week or if not the following week.

Then out of the blue she got a text message reminder for a surgical outpatients appointment next week! She has had no letter or anything. I thought surgery wasn’t usually an option for secondary cancer and it any case no treatment plan or diagnosis has been discussed with her.

Of course it happens at the weekend when no one can be contacted and she is out of her mind with worry now! Can anyone think what is going on?

Thanks so much!

It sounds as though an appointment has been arranged to discuss the results, and a letter has either got lost or is making its way slowly in the 2nd class post. Does it say which surgical specialty is involved (a CT could have shown up something entirely unconnected with the breast cancer)?

Hi. Thanks.

No it doesn’t say. Just surgical outpatients. I had thought it may be something else. The appointment day is different to the breast clinic day.

I think her call must have started a process but who knows what process. The NHS is great but all this sort of admin stuff isn’t!

Well, I sympathise. I remember getting a Friday afternoon call to say the surgeon wanted to see me about CT results on Monday morning, and that weekend was pretty stressful!. Remember that there are all sorts of issues which are not cancer and which a surgeon might deal with.

Mostly one just has to find as many distractions as possible until the appointed day arrives!

The waiting is hard! She is older now (obviously ) and has decided that she doesn’t want any hardcore treatments. She found chemo hard last time.

It turns out that oncology didn’t know anything about the surgery appt. It was a nurse specialist who has requested the surgery appt (she doesn’t know what speciality). An oncology appt has been arranged for Thursday next week. Results will be given on friday though apparently.

It seems oncology asked for scan of breast area and GP of abdomen so I think she is now in two services neither of whom seem to be talking to each other!!

Unfortunately services not talking to each other is a pretty standard problem in the NHS. It’s soul destroying.

The NHS is so wonderful in many ways, but falls apart on communication - causes so much stress and wastes so much money!

85 year old relative - hysterectomy - multiple letters re. one appointment - sent to wrong hospital!! Poor systems.

Hope your step mum comes through this well OP, and that the problems are not severe.

I did suggest she could maybe offer some feedback but she obv has other things on her mind!!

Fingers crossed for Friday.

She could have been given an appointment in the wrong clinic in an attempt to get her seen sooner if that makes sense. Or it could just have been a simple booking error

So...the surgery appt was for primary bowel cancer! Caught relatively early so very operable. That’s the good news.

The bad news is that there was also a shadow on the lung. The lung team are looking at it tomorrow and it will be discussed at the oncology appt on Thursday. Fingers crossed it’s nothing. It would be v unlucky to have a new cancer and then the old breast one spread.

Fingers crossed for her OP.

These things really are a saga! Bowel nurse rang today and lung CT is inconclusive so it’s off for a PET scan - hopefully next week. I don’t know if that’s good or bad!

She is ringing oncology tomorrow to see if she needs to go on Thursday. She has said she doesn’t want any treatment until a full diagnosis is known so the bowel op will prob be in the new year now which they were fine about.

Stranger and stranger. It now turns out the shadow on the lung was there in CT scan done when she was first diagnosed. It has grown but isn’t massive. Still awaiting further tests. She is very shocked by that as she didn’t know about it at the time.

To me that suggests that it can’t be too sinister or it would have made its presence known before now? What do you all think?

I have a friend, 80, but v fit, who had pneumonia twice and got sent for a chest X-ray. She had a shadow on her lung and then had a PET scan. All clear. They think the shadow relates to a childhood episode of whooping cough. Something to do with 'calcification'?

I've had a similar experience re surgical appointment completely out of the blue. To cut a long story short, I had to ring the switch-board to find out it was with a Gastro surgeon and Appointments to find out that I'd been referred by Gynae! Eventually, a Gynae CNS sorted it out. It was all a mistake, due, I think, to my being under two specialisms at the same time. No one's owning up as to who made the appointment, but it seems to have been set in motion by the Gynae consultant forgetting a member of her dept had referred me to Gastro over a slightly raised level in a blood test. I'd been discharged by Gastro, but she somehow re-started the process.

You do need to keep tabs on what's going on, especially as your step mum now has 3 departments on her case.

Hoping all works out well.