Joining the club no one wants to join

Hey girls. New here, got my diagnosis last Friday (a week ago). I knew at my biopsy the week before it was cancer as the doctor was very direct, but it was just last week I had the official sit down. 

I’m terrified but (just about) coping. I just found out (after I called to see if they had the results) I’m HER2- and am now waiting to hear when my CT scan will be as it’s in my lymph nodes as well as my breast.

Having gone a week since diagnosis without hearing a thing (apart from when I called the hospital to see if they had the HER2 result) I feel a bit like I’m stranded at sea. Is it normal not to have had any contact? I know the NHS is swamped with covid and it being winter but I’m sort of surprised I’ve not had any communication from the hospital at all since my appointment a week ago. They said a CT scan would be urgent, does anyone know what the expected time span is?

(You know that feeling when you absolutely do not want to complain but feel like you might have been forgotten about? That’s me, right now). 

Hi Firecracker

So sorry you’ve had to join the group. The diagnosis turns your world upside down and, to be honest, anything goes in terms of how people react.

Waiting is one of the things you will have to get used to, I’m afraid. When they send samples off to laboratories, it’s beyond their control too, but at least you know you’ll get a detailed diagnosis eventually. Sometimes we worry about the time between diagnosis and surgery, or between surgery and treatment but there are factors we just can’t control. There are NICE guidelines but the waiting times sound horrendous, time for agonising, trying to keep off Google (take that as a warning lol, it’s dangerous territory) and letting your imagination go into overdrive. Breast cancer won’t be running rampant in your body - it doesn’t work like that unless you are very late diagnosis.

My oncologist told me the waiting time for a CT scan was now 13 weeks, they are so overstretched. In fact, they’ve put on extra clinics over Christmas so my CT scan is now Bank Holiday Monday, more like 5 weeks than 13. Oncology has no control over when you get your scan - that’s up to Radiology, so the best they can do is email and ask what’s going on. If it’s urgent, I’d expect it to be within 2-3 weeks of the request but you now have to factor in the Christmas period too, I know that may not sound good enough but that’s how it is. Any delay certainly won’t put you at risk in any way - it’s just the waiting can feel agonising. Then you have to wait for results. It feels cruel but again, that’s just how things are. Their contacting you when they have no information is a unlikely - and it extends to the private sector too (I had my diagnosis and surgery done privately, a mistake in my opinion).

Chasing things up is a good idea if you’ve been given a timescale and that has passed. Otherwise, you have to let your head rule your heart - you will hear as soon as they have information, possibly by phone, possibly by appointment letter. It may feel unacceptable but there are many thousands of patients in the same boat. Each hospital has a PALS (patient liaison service) through which you can lodge a complaint but, from the details you’ve given, I’d say you’re on track and just need to be patient, hard when your adrenaline is all fired up and you want things to get moving. You can use the time to work on your emotional wellbeing, which you are going to rely on in the coming months. There are loads of things you can do, running, baking, Mindfulness, whatever works for you. 

So yes, this is normal. As treatment progresses, you will get used to it and go with the flow. I recall my longest chemo stint being over 6 hours because they forgot about me and then couldn’t find my notes, then had no vacant treatment bays… and if a radiotherapy machine breaks down, the wait as they try to fit everyone in can be most of the morning. When you see the staff’s faces though, you know they really are doing their best. So maybe wait another week or so before ringing your breast care nurse to ask if any progress has been made. She’ll certainly chase it up for you.

I hope your results come through soon and you start treatment asap. All the best xx