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?

I would also be very willing to go with you for your appointments if you can say where you are without being too outing. Otherwise, is there a hospital League of Friends that could help - it seems so very hard for you to be going through this by yourself.

Thanks all but I wasn't alone, my sister is currently here and came with me to A&E. I've asked if she can come to my biopsy tomorrow and she said she'll try (she'll need to get time off work). I haven't told her any information just that it's breast cancer.

Hi @badnews943

I'm really glad your sister is with you and am keeping my fingers crossed that she will be able to be with you for the biopsy.

Good luck tomorrow. I will be thinking of you xx

Good luck to morrow , don't forget not to look things up on Google, l went to the hospital with chest pains and as l lost my lovely wife in feb , l had scans and heart trace ,etc blood tests ,the A and E said l did right it was what they call heart ache . My sister had breast cancer ,with Lymth nodes and lung as well . They cured her that was 3 years ago don't give up yet ,all the very best to you .

I hope it goes well for @badnews943 and is good news.

Having seen my beautiful ballsy DM do the biopsy without sedation because she didn't want to have to hang around while it wore off, I would advise opting for it.

She managed it well but I think those that had sedation had an easier time. x

Best wishes

Thanks. My sister is coming tomorrow which is a relief. Results on 24th which she can't come to.

Off to my biopsy in an hour. I'm starving and not looking forward to it.

Hope all goes OK thinking of you .

Have you got to wait for the results

Thinking of you.

Thanks, just got back. It was awful. I have an appointment with Respiratory on 24th, which I presume is the results. Im not looking forward to that conversation.

I'm so sorry to hear it was awful. Biopsies are absoultely no fun at all and then there's the psychological terror on top of the physical pain. We are here for you.

The wait will be hard. You said your sister can't join you on 24th. Would you like someone to go with you? If so, I would maybe consider phoning Respiratory and telling them that and see what they can do; they might provide a nurse, or know of another person who can support you.

Yes, the biopsy was awful, delayed for hours, then had a canula which was painful as I'm currently like a pin cushion, then I was knocked out. I've been coughing since yesterday and have a sore throat.

My sister couldn't stay so brought me back with her and I'm at my mum's. My next appointments are next Monday (bone scan and liver). Not ideal as my mum needs looking after and I can't do it.

I'm still weak and feel faint if I do much, so am just lying on the bed.

I'm so sorry @badnews943 . That sounds awful. You can only look after you right now. Take good care and all the best for Monday ❤️💐

So sorry to hear that @badnews943

Who usually looks after your Mum? I was looking after mine when I was diagnosed and started my long cancer treatment. The hospital asked if I had children to look after but never asked about parents, so they didn't realise till over a year into the treatment plan. Sometimes all I could manage was dragging myself downstairs certainly not going to my Mum's house, so I had to book carers. It might be worth telling the hospital your Mum needs care and see if OT / social services can get something arranged asap. You can't be responsible for her you need to focus on yourself now 💐

I hope the bone scan goes smoothly. I found that ok certainly not as bad as biopsies. I don't know what liver test you're getting, but I hope that is also easier to cope with than the lung ones were.

Thinking of you on Monday x

@MrsKypp Thanks. My mum has dementia and lives with my other sister, she's OK during the day but as you can imagine, can be difficult to be around if you're trying to rest. I don't have the energy to deal with her.

I contacted Macmillan today and finally feel listened to. They're looking into a travel grant and contacting my team and asking about a porter to take me to appointments.

Im trying to contact the practice manager at my surgery as my Dr was absolutely crap. I want to discuss a more suitable Dr going forward but she's not returning my calls. I've left a message with PALS and contacted Maggies as well.

Im thinking of putting off my results appointment until my sister can make it as I don't want to go through the horror by myself again.

@badnews943 well done, you're doing everything the right way already. I wish I'd been so clued up as you are now earlier on in my cancer treatments. You are right to contact the people you mentioned and I'm glad you felt listened to.

I've put off the biopsy results appointment until 30th July. I'll see if I can organise my other results then as well.

I spoke to Maggies and they said just choose another Dr from the surgery. I sent off an econsult this morning as my surgery need to be involved.

The more I ask advice from charities regarding my condition the worse I feel.

@badnews943

In that case you don't need to speak to the charities. Do what helps you and avoid what doesn't, whenever possible.

You are super organised already.

Can your sister join you on 30th?

I put off the appointment as my sister can join me then and Im also hoping to arrange my other results then as well.

A Dr from my surgery is contacting me this afternoon and I'll ask about a needs assessment and care at home as well as what other support they offer.

Im also thinking of a second opinion but that will obviously delay treatment.

The charities just give long pauses and aren't saying anything reassuring. Makes me feel like I've got days.

The charities haven't seen your scans, and the biopsy results are not back. The charities give long pauses because they have no information and need to be very cautious what they tell people. Please don't think that means anything other than they have no information yet to say anything concrete.

Once you have all the information from the scans, biopsies etc your MDT will create a treatment plan for you. My oncologist gave me the plan, but I believe most only let their patients know step by step. I mean things like which chemos and when, surgery, radiotherapy, other treatments such as immune therapies etc. Very often, in more complex cases like yours and mine, they will see how the initial treatment works - they will scan to see our body's response - then plan the next thing.

The charities have too little to go on, and are correctly cautious. Cancer is incredibly heterogenous even within eg breast cancer there are multiple types - all with different levels of aggression (grade), different things driving the cancer (for example oestrogen, her2, etc) and unending variety of genotypes and phenotypes.

You are doing really really well thinking of the practicalities of what support you will possibly need. Planning ahead about needs assessment, care in the home etc.

xxx

Hope things go OK. Don't forget to apply for p.i.p.after you have a diagnoses in writing claim , l work for dwp please get that sorted and as you claim that's not that you won't be cured the thing is you need to move to the treatment phase all the best to you

Thanks. I've organised a call from Maggie's regarding benefits.

Well done badnews 943

I seem to have a new Dr. I feel so relieved and she's proactive and has already made several referrals.

One to SS, one to the local Macmillan nurse and one to some kind of coordinator who apparently knows what's available in the area.

It feels good to have someone on my side and she's organised another appointment towards the end of the month for a catch up.