Terrified i'm dying!!!!

[Lostmymind11]

Sorry if this is on the wrong thread but i'm not sure where to put it

Nearly 2yrs ago i had surgery to remove a sarcoma (no treatment afterwards as not needed). My 6 month scan was clear and i had another scan 4wks ago to check if it had come back. The hospital have rang today and told me they had booked me in next Friday to see a member of the surgery team. I am abaolutely terrified and beside myself with worry. I am a single parent to a very young child who has no contact with dad due to domestic abuse. I barely have any family/friend support. If the cancer is back i really don't know what i will do. I feel physically ill

[Bobbyelvis4ever]

This is understandably very scary, and I doubt I could avoid catastophising either. But please, please remember, that if it has returned, it has been caught. You can fight a cancer than has been caught.

When is your appointment? Do you have someone who will go with you?

The wait is horrible - deep breaths until then.

[Healthyhappymama]

Can't you call them back to ask what the appt is about? Shame you have been left worrying with no real information. Would they not have told you it had returned if that was the case?. I hope you get good news ♥️

[Idontknowwhattodo78]

There is an amazing Cancer Support thread on here, for people who’ve had or fear they might have cancer. I’m sorry, I don’t know how to add the link but if you search cancer support thread 92, you will find it.

[Lostmymind11]

The lady on the phone said she couldn't tell me anything and i had to wait. The appointment is next Friday, so a full week away yet and i'm already beside myself. I just feel really sad its taken them 4wks to look at my scan pictures and then i have another week to wait to be told whats what

[Somethingsnappy]

I'm sorry you're going through this. It's beyond awful having to wait. As a pp said though, the regular scans are to make sure it's caught early if it's returned. The fact that they said you'll have an appointment with the surgery team suggests that if it has returned, it's operable? I don't know much about these things, but this was just the impression that came to me. Or perhaps it's routine to have a catch up about these things after a certain amount of time? I'm sorry you're having to wait and suffer with this OP. Perhaps join one of the mumsnet support groups as a pp suggested?

Sending hugs.

[TheSnowyOwl]

I think that’s really unfair to leave you with a week’s worry whilst waiting. Can you email PALS and explain this and ask what the scan has shown?

[2dogsandabudgie]

I don't think that's necessarily anything to worry about. Results aren't usually allowed to be given over the phone so even when it's good news you are told in person. This has been my experience. As you didn't need any further treatment 2 years ago after surgery it makes sense that one of the surgeons will give you your scan results as they are consultants as well.

[Shiningout]

It's bad to leave you over a week to wait with no answers, may be worth trying to call someone on Monday to see if you can get a callback? Probably no use but worth a try.

[Lostmymind11]

My last scan a year ago i just received a letter 4wks after stating no cancer and no metastatic cancer so this has really thrown me. As its been 4wks this was the last thing i was expecting. I'm not sure who i would even ring to try get my results over the phone

[Shuggie1234]

So sorry you are having to wait OP.
Do you know if the team that treated you first time have a nurse specialist? You could maybe try and contact them?
do you have someone who can go with you to your appointment?

[Strugglebus]

So sorry OP, this is really stressful and badly handled. I think if it was ‘bad news’ they’d be getting you in much quicker honestly. I expect it is a routine review of your results but I know I would be feeling exactly as you are and no one saying any of this will really help you for now. I think you should call them back and explain you can’t cope with a week of feeling like this and can someone please call you to discuss or put you on a list for any cancellations so you can be seen sooner.

sending you a hug as this stuff is horrible.

[Strugglebus]

Also, I don’t think it’s taken them 4 weeks to look at your scan. I think they haven’t been in a rush to book you in for a follow up because it’s not bad news. I’ll keep everything crossed for you

[Milkand2sugarsplease]

Here with a hand hold!

Honestly, I do think they would have been in touch quicker if it were anything sinister but I'm sure that won't stop you worrying.

Can you call back and see if there's any more info you can have sooner than next Friday to ease your mind any.

x

[StormKevin]

Sorry OP I would be feeling the same thing. Though I agree with PPs I would be shocked if it took them 4 weeks to review/report the scan if there were any significant concerns. I’m hoping for the best for you.

[CrazyHedgehogLover]

It’s shocking how this has been handled tbh.. as PP has said if there is anything wrong I would have hoped they’d phoned to arrange an appointment sooner.. wishing you all the best! I would definitely try and contact them Monday though to explain how worrying this has been for you and that you can’t cope waiting all week explain how the stress is making you feel.

surely they can arrange an appointment or give you some indication of the outcome from the scan? Definitely worth trying to phone and request an appointment/phone appointment sooner!xx

[MissSmiley]

What type of sarcoma and where was it?
Did you have a specialist nurse?

I had a type of sarcoma (GIST) and always hate waiting for the scan results, they can usually tell you over the phone if you're particularly worried.

[Barney16]

Ring your GP, they may well have had sight of the test results.

[Strugglebus]

Hope you’re okay OP

[Acapulco12]

Thinking of you OP 🌺🌺

[MindfullyAmazedHorse]

If they have picked anything up it will be early, so should be fine. I hope everything works out ok for you. I understand it is horribly worrying for you though.

[Custardcreamandcoffee]

Sending you big hugs tonight xx

[Banrion]

Thinking of you x

[ThisIsOk]

From my experience of working in health care, including working in MRI departments, if something shows up on a scan that looks suspicious the radiographer knows straight away and usually gets a Consultant to look at the images pretty sharpish.

On the few occasions I have been involved in where a tumour has been detected on an MRI scan, the patient was told on the same day and treatment started immediately. Sometimes even being admitted to hospital directly from the MRI department.

I too would take some comfort that it’s taken them 4 weeks to get in touch and they’re happy to wait another week to see you too.

I know it won’t stop you worrying, and they obviously want to talk to you about something, but try not to automatically think the absolute worse.

[Lostmymind11]

Thank you everyone. My appointment is tomorrow morning and i haven't slept all week after convinving myself i'm dying. What if the consultant has only just seen my scan last week and are now panicking there is something on there and they have left it 4wks. I know the nhs is stretched and short staffed. I have to go to work now and pretend everything is ok and its so hard

[ThisIsOk]

@Lostmymind11

Thank you everyone. My appointment is tomorrow morning and i haven't slept all week after convinving myself i'm dying. What if the consultant has only just seen my scan last week and are now panicking there is something on there and they have left it 4wks. I know the nhs is stretched and short staffed. I have to go to work now and pretend everything is ok and its so hard

As I said in my response, if there was something very concerning then the radiographer who was doing your scan would have most likely seen it and contacted your Surgical Team there and then to inform them.

Although it is not the Radiographer’s job to write up the reports on the scans, in most cases they will still recognise something worrisome when they see it on their screen, and if the scan was oncology related they’d be even more vigilant about looking for anything suspicious and would have contacted your Team straight away.

I understand that the receptionist / secretary can’t discuss your results with you over the phone (confidentiality reasons as well as others) but perhaps if you call back and explain how worried you are, she may be able to get the Consultant or one of their team to call you to reassure you.

And realistically, if there was a tumour reoccurrence (or something along those lines) then it’s unlikely they would have just sent out a routine letter appointment for you to be seen in 7days time, they would likely have phoned you to discuss it with you straight away, especially if treatment was urgent so that it could begin as soon as possible.

I recently had a very suspicious mole and I had to go to a clinic and have photographs taken of it which would then be sent to a consultant to be reviewed. The nurse told me that I would usually hear back in two weeks via letter which would tell me if I’d need to go to a face-to-face appointment, or whether the doctor was happy it was nothing suspicious and that he didn’t need to see me. About 3 days later I got a letter saying the Consultant wanted to see me and my appointment was only in another two days time. The doctor’s name on the letter was a dermatology oncologist so I was automatically terrified. Due to the speed I had been contacted and them wanting to see me so quickly (within 5 days of my photographs having been done) I was absolutely petrified and I was convinced it would be cancer.

When I got to my appointment I was so scared and when I went in to see the Consultant I was nearly in tears. However, he sat me down, had a look and feel of my mole and told me it was fine. I wasn’t even with him for 5 minutes.

I only give you this example to show a) how quickly the processes take place when it comes to anything oncology related and b) that wanting to be seen doesn’t always mean worst case scenario, although it’s natural to assume it does.

This is of course all speculation, and things may be very different in the area you live and based on what your original diagnosis was, but I guess I just want to reassure you that it may not be as bad as you think.

Nobody on here will be able to stop you worrying because of course that’s the emotional state you are going to be in, but I suppose we all just want to offer support.

I’m really sorry you are losing sleep over it and it’s understandable.

I would call the hospital again and really lay it on thick about how worried and upset you are and how you haven’t been sleeping and beg for someone to call you to discuss the results. I would explain that you can’t live like this for even another day because the not-knowing is unbearable. I’m sure the secretary will be sympathetic to you and try and arrange for someone from your surgical team to call you.

I will be thinking of you OP and keeping my fingers crossed 💐