Bad news today

[badnews943]

Had a nightmare today. Received news that I have type 3 breast cancer which may be in my lungs. I'm having a lung biopsy next week but the Dr seemed pretty certain.

I'm not sure what to think. Any advice or support?

OP, citizens advice can also help with PIP applications and as PP said, it can be fast tracked.

Good advice. Especially AI - it responds in different ways depending on how you ask for information and sometimes it can give doom laden results when the reality is very different. I actually asked my consultant if there were any website which would be useful and he gave me a list - you’re also bombarded with leaflets after a cancer diagnosis so there are plenty of reliable resources in them without the need to go down the rabbit hole !!

I posted on this upthread a little OP. You’ll be eligible for PIP and it’ll be fast tracked. It’s a bit of a tricky application form and there are time limits for returning it so may be a good idea to start collecting medical evidence now - you should be getting copies of clinic letters which go to your GP so all you’d need for now is one confirming the diagnosis. I’ve lots of experience of PIP applications from professional capacity so if you need any help please PM me. Keep positive OP, they won’t have the full picture until all the test results are in and then you’ll have the reassurance of a treatment plan.

Can you contact social services to see if you would be entitled to care or a home help - they can organise an assessment of your needs. That would be my first port of call. MacMillan will be able to advise on transport - this will be especially important during treatment and there are several options for hospital transport, including taxies where necessary.

Thanks all. I contacted social services today but they weren't very helpful. They said to contact my GP or go through a charity for support unless I become incapacitated.

I contacted Macmillan about PIP but they said wait for the full diagnosis. I contacted Breast Cancer Now and they said to go to A&E because I feel so weak and breathless and no one seems to be helping with that. I don't want to sit in A&E for hours though.

Oh gosh, that must be so frustrating, @badnews943 and especially hard as you are feeling so weak and breathless. For what it's worth, I think you've been amazing in how you are handling this.

I'm not any kind of expert in this, so will let those who are more knowledgeable of the "system" advise you on how to proceed getting the help you need, but I just wanted you to make sure you know you have people rooting for you and who care. xxx

I'm sending you a huge hug, what a shock. My only advice would be....wait until your medical team proposes their treatment plan and then talk all your worries and concerns through with them. The cancer charities are great for hand holding and practical help but only your oncologist's team can see the whole picture. It may not be curable but it may be treatable and you will have some input on what that plan will look like. Good luck 💐

I would question the advice to wait for a diagnosis before you apply for PIP, simply because it takes so long for the application and assessment process to take place. To apply you have to make a phone call to request the application form and they will run through a quick check with you to make sure you’re eligible. Normally there is a three month qualifying period, during which your symptoms have to be present and affecting daily life. However, you can still apply for PIP and get your evidence together - your application will be considered but if you’re successful you won’t get benefit for three months. The exception to this is if you have a terminal diagnosis, in which case the application is fast tracked and you get benefit straight away.

I do think it’s a good idea to go to A&E. I did it a few times after some distressing symptoms and I was seen fairly quickly after explaining the cancer diagnosis at triage. I got the help I needed much quicker than if I’d waited to go through GP services. Once you have your diagnosis and treatment plan, your clinic will deal with any effects from either the treatment or the cancer itself while you’re in their care.

Not sure why social services have refused to help. Anyone can ask for a care needs assessment and you don’t need GP involvement. I would ring again and ask for Adult Social Services and say you would like to request a care needs assessment. They should then get the ball rolling. If you are still refused contact your GP and ask them to help.

You said you were really struggling with breathing and feeling faint, did the hospital give you a number to ring out of hours? If not I would chance it seeing it is the weekend and call NHS 24 and explain the situation to them. If nothing else it should mean you be able to get some oxygen, are you drinking enough liquids, it's hot in the UK I think now so this is so important as will affect your blood pressure too...
Do please let us all know how you are getting on

MacMillan can help you with all of this
financial and practical help as well as disease specific advice
big hugs 🤗 to you, call them when you can they will help xx

What an awful shock, go to A&E if you are really unwell xx

If your breathing is really that bad call999 , having breathing difficulties is bad , if you where asthmatic they would send an ambulance any way . William l am asthmatic really don't take a chance

I contacted 999 and they refused to come out. Am waiting for a call from NHS Direct,it's been nearly 2 hours. I'm very weak and wouldn't be able to get to A&E by myself. I'm just about managing to drink water.

I’m sorry to read this OP. I hope you get a call back soon. Is there anyone with you?

Thanks. I'm alone and am exhausted, I just want to go to bed.

Oh OP, you sound poorly.
Is there anyone with you? I think you need oxygen fast. Hopefully an ambulance will be sent ASAP.

OK, so a call back from NHS is in the pipeline, that’s something.

In the meantime, a back-up plan- taxi to A&E. I know it is far from ideal OP but you sound very poorly and I think you need to be seen asap.

What about setting a cut-off point? No call back by 22:30 say, call a taxi.

Take care OP.

Excellent advice.

I can't get a cab. NHS Direct said the hospital might be able to organise an ambulance to take me there but I'm waiting to speak to a Dr. The problem is I had very little sleep and am so tired. I just contacted NHS Direct and they said I'm in their queue.

I hope you don’t have to wait much longer for NHS direct. It is frustrating. You don’t sound well and it’s not surprising you haven’t been able to sleep.

I've nearly passed out a few times, not at home but at the hospital.

I hope this isnt a silly question and do hope it doesnt offend.
if its found in the lungs isnt that metastatic? and level 4?

my sister has just been diagnosed with this. We are all very worried about her.

best wishes OP.

Keep us posted OP
Take care

Yes, if its moved to other parts of the body it's stage 4.

Another who is in the breast cancer club. AM so very sorry you're one of us now.

OP, stay away from Google or anything really until your MDT (multi-disciplinary team) give you all the information. Things shift and just because you're having a liver scan, it does not necessarily mean it's in there. It's pretty standard to have a liver scan when you're diagnosed with aggressive breast cancer. Tbh, I wish they would be more open about this as the panic I went into when I was called in for one was dreadful.

I recommend this book but please, only read the chapters as and when they apply to you. No point reading it now. Indeed, what you need to concentrate on is not driving yourself potty and googling. Take each day as it comes and concentrate on the positive that you will be walking along a well-trodden, very well-researched road. Treatment, even metastatic breast cancer has come a long long way. You can live for quite a few decades with it, and it can be managed.

If you haven't already, call Macmillan, They're wonderful. I found them way more helpful than Maggie's.

Wishing well 💐

Am sorry to read about your sister.

First things first, what kind of primary cancer does your sister have?

By level 4, I think you mean stage 4. Stage 4 means the cancer has spread from its original site to distant parts of the body - cells from the initial tumour have broken away and have traveled via the bloodstream or lymphatic system to form new tumours.