Scanziety hand holding

[Somuchgoo]

4yo daughter with a g1 brain tumour, scan is this week under GA. How do I stay sane? I'm so grumpy to be around. It's going to be a long week or two!

Ps: this thread isn't just about my waiting, many is us to through this, so I thought it could be an be ongoing support thread to help all of us through these scans and the awful wait for results.

Hi somuchgoo. I know how you feel, my DS has been treated for cancer for the past 2 years+ and I've lost count of how many MRI scans he has had (probably 10-15) and the anxiety every time is horrific. His next scan is beginning of June and I'm already feeling it. When is the scan? How do they usually communicate the results, do you have an appointment or do they phone you? I have spent a lot of time thinking of how best to get results and there is no easy way. I hope all goes well this week. x

Thinking of you. The worrying around scan results is awful. Sertraline is my friend. It really helps. How long have you got until results?

Thanks to you both.
Scan was on Wednesday. It went as well as could be, she was a trooper.

I guess it'll probably be next week we hear now. We have an appointment in 3 weeks, but in the past they've phoned the results through before. I'm still new enough to this though that I don't know for sure. It's usually the neuro-oncology nurse specialist that phones.

I've also been thinking about the best way to get results (diagnosis initially was the time it took me to walk back to the ward + 6m, so about 15m after the scan!). If they can't be guaranteed very quickly, perhaps:

• they tell you they'll phone in x day (say a week after)
• if however there's anything super urgent which requires you to come back/emergency, them let you know within 48hrs.

That way, between 48hrs- 1 week, you know you won't get a phone call. There's no shouting at your husband because he forgot to take his phone to the loo. There's no bursting into tears because he walks in the room with a 'funny look' on his face and you assume it's bad news etc.

Today, I took her swimming, panicked the whole time as my phone was in the locker (even though they usually phone my husband's phone). The plan was I'd ring when out and he'd pick us up, but he turned up early. Brain goes into overdrive, clearly he's had bad news and that's why he didn't wait for my call etc. Obviously that's total paranoia, but yeh, I'm a bit crazy during the wait. I assume it's normalish 🤷‍♀️

That all sounds very normal and familiar to me. We were always trying to second guess the team and what they were thinking. His consultant would usually always ring just I had put something in the frying pan and my daughter had music blaring doing her cheerleading practice and the dog was barking and the door bell was ringing and my husband was on a work phone call and I would suddenly have to find a calm quiet place to absorb whatever news was about to come.
The worst time ever was when the nurse rang, clearly knew the result but wasn't able to tell me, and arranged an appointment with the consultant in 3 hours time. We knew the result was bad and those 3 hours were some of the worst of my life. Weirdly, once you sit down and things are confirmed and you have some sort of plan, although you may still feel devastated some of the terrible anxiety calms down.
I've realised that there is very little pattern to when they call; sometimes they call quickly because all is fine, and when his cancer actually did recur it took ages because they had to send it to a head and neck specialist for confirmation; sometimes it just takes ages because they are busy. There is no point trying to guess. It is just your mind trying to end the terrible waiting.
I find trying to distract myself and keep busy is helpful but not to do anything that requires too much brain power or decision making.
I've also realised that although our consultant must know on some level it is stressful waiting, he doesn't truly understand it. We sometimes have appointments where he just drops the result in casually after 10 minutes. It's odd.

I completely relate to the paranoia. One time, I'd worked myself up into such a state because my mind had convinced me that an appointment letter meant bad news. In fact, it was a standard appointment letter that just coincided with the time. I've been shocked at how powerful my mind is at telling me stories and convincing me about outcomes that aren't based in fact during scan waiting times. I think the agony of waiting for scan results is something that's absolutely impossible to understand unless you've been there. The crazy taking the phone to the toilet at all times, terrified at being apart from my husband in case the call comes, the call coming then missing it and then the agony of having to wait some more, and then the terror of the news there's growth and on top of that, the terror of hearing a thing that you've never heard of and don't even know could be a thing. (Been there too many times).

I agree that there's better ways of communicating with parents than what we've had the past few years. It's hard to know what's normal and what's exceptional because of covid. My dc is now moving to another hospital for scans where they have a system for results that's predictable. I think that will reduce the stress but obviously the only thing that takes away the stress is the word: stable.

Thanks for starting this @Somuchgoo this really resonated with me. I am constantly trying to interpret the radiographers facial expressions - one turned really brusque after the dye went in and I cried at 2am every day till the results came...he was probably late for his lunch. I agree there should be a planned way of doing this. For us, there seems little they can do if there is a relapse so not sure why they scan every 3 months.

Hope you have the results soon. And hope there's a nice long wait til the next one.

@Epictantrum we had a similar call early on when the nurse called us with a result, but couldn't actually tell us just called us to a rush hour Friday evening meet with the consultant.
we were trying to ask her how bad is it? But she kept saying I can't say..in the end the result was something we were already expecting so no clue why it needed to be so cloak and dagger. I have aged 15 years in a v short space of time.

So sorry you're going through this, @Somuchgoo . There doesn't seem to be any rhyme or reason as to how and when hospitals communicate with us (or each other, but that's a whole other rant!).

Can you speak to your consultant or the head nurse about getting scan results in a consistent way/time? We get access to an online system which shows our child's hospital appointments, letters and any results from blood tests and scans. Does your hospital offer this?

Despite other issues, our consultant seems to understand that parents get very anxious about scan results and, if she's on the ward and has time, she will pop by while DS is still recovering (he also has them under GA) and tell us very briefly that things look ok/as expected. If she hasn't had time to see us, she will write a brief sentence to accompany the online results (which are meaningless unless you are a radiographer) e.g. 'scan ok'. She'll then offer to provide more detail at the next meeting.

As to how to stay sane...do whatever works for you, as glib as that sounds. For me, I don't actually worry about the scan result. What they see won't change the outcome; it will be what it will be and we have to continue carrying on because there is no other choice. I worry more that they'll mess up DS's shunt or give the wrong medication. I haven't found a solution for that worry.

Ffs!!

Day 7 of waiting, and I give up and phone the neuro-oncology nurse to nag for results. It turns out she's retired. Her replacement will have a look and phone back about 11.

Her replacement is lovely (we knew her from a long hospital stay), but I don't think phoning us was on her radar. I'm glad we phoned target then continued to wait.

No answer today. The report isn't back yet.

Offering you a handhold, @Somuchgoo . I hope you get the results soon.

How is it going Somuchgoo, any news? Hope you are OK.

Day 12 of waiting. It's really starting to get to me.
The nurse accidentally bum dialled me on Friday. She was mortified. My nerves are frazzled.

Thanks for checking in on me.

I've never had to wait this long. I'm second guessing the reasons but there's little point really. There's part of me that thinks it wouldn't take 12 days to come back with stable, and maybe they are checking stuff/getting a second opinion/discussing it at the weekly meeting etc first. Equally, i know it's nothing really bad it they'd have got back to me. There's no point guessing. Its probably as they said - they are a person down.

Sorry you’re having to wait this long. Must be so hard. Have you tried calling again for the results?

I haven't, but I really do trust this nurse that she will let me know soon as she can. She was late calling me back last week because a clinic overran, but still found time to text me so I wouldn't worry. She's one of the most efficient and competent neuro nurses I've come across, properly on the ball, and one that always seemed to remember what she'd promised on ward. She sent off naggy emails on Friday, so I'll wait a few more days.

Oh not good waiting so long. I wonder if it's because the same person always looks at that scan so they have to wait for them to come back? That happened to another parent I know with a different solid tumour.

Dropping by to offer a hand hold as well. We haven't had an experience of prompt, predictable results appointments so we've had to wait several weeks many times and it's awful. I'm hoping for a straightforward explanation for you as to why this time it's taken longer than normal. May has been very on and off this month with extra bank holidays etc possibly affecting the workload of the radiographer. I've got everything crossed for stability.

Any news yet @Somuchgoo ? We've got ours coming up soon🙄

Thinking of you and hope results are with you soon

Thank you.
No results though the neurosurgeon has had a quick look and 'seems content '. Which should give me some reassurance but I can't really relax until the report is in, the measurements have been made etc. I just know it's nothing really terrible, which we shouldn't have been expecting anyway.

They are so behind they are sending their results to other hospitals to help them out.

I'll phone up the nurse again early next week. I'm slowly going crazy here.

Its been a rollercoaster of emotions here.

We eventually were told from the nurse that the report came through, all good, no growth. She gave some measurements, but they seemed odd.

I went back to her with a query about the measurements. She was also puzzled, passed it up to a colleague. That colleague was also puzzled.

I was assuming though that the conclusion of no growth was right, even if the data was odd. I didn't want to get my hopes up until we'd spoken to the consultant though.

That happened today. It turns out there is a small amount of growth after all. Its not an emergency of any sort, but if it continues we may be looking at surgery in the new year.

Glad to hear you got some news back, even if it raises a few more questions its on the slightly better side.

Thanks.

I'm not sure it counts as on the better side though if I'm honest. This is the first scan we've had showing growth, and the idea of being propelled back into neurosurgery is a bit terrifying at the moment.

I know it could be a lot worse, and in grateful its not a more aggressively tumour though.

I'm so sorry to hear this. Also, that's a long long time you were having to wait with massive uncertainty.

Has the scan been formally reported and run through the MDT? Have you got a plan for the next scan date? If it's 3 months, you're already about 6 weeks in so not too long to go. I hope the team turn the results around quickly next time.

I'm so hoping that although there's been growth, the tumour now becomes dormant again. These tumours are unpredictable, I hope it was a momentary burst of slow growth. Also, there may be other options other than further neurosurgery. I remember one call we had with my dc's oncologist where he said they may need further neurosurgery, but it hadn't been run through the MDT and when we spoke to the neurosurgeon, he said that wasn't what the MDT would recommend. I completely get the fear of further surgery, the thought of going back there is hideous.

How are you doing this morning?

Thanks.

I'm ok. I'm frustrated that we were categorically told there was no growth, when that wasnt the case. I'm weary.

The next scan is 6m (so I'm guessing the growth is pretty small), which because of results is 4.5m away. Although we had a good chat with the neurosurgeon over the phone, he's arranging for us to come down to discuss in person etc. I'll probably know more then.

I think his preference is the surgical option, but that's neurosurgeons for you I guess. I'd like to discuss all options before we make any decisions. Surgery was such an ordeal for her last time, with so many complications that I'd like to avoid it, but I'm not sure the alternatives are much better. I'm glad he's approachable and we can discuss it though.

Oh no I'm sorry to hear this. Are they confident it's growth and not pseudoprogression? You must be so stressed. Frustrating to get two different answers after waiting for such a long time. Really makes no difference if it's fast or slow growing if you are facing neurosurgery again 💐