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?

It feels like a waking nightmare. I keep thinking of everything I'm never going to experience again and wondering how long I have. I'm so glad I travelled when I had the chance.

No one knows yet apart from my sister and I don't want anyone else to know. I can't deal with it.

I have no idea what Respiratory are doing. Surely they know that chemo can't start with an active infection. I'm contacting my Dr tomorrow and PALS so I can get some treatment.

Thanks. Not much as I need to rest. I had to go to A&E a couple of weeks ago as I was too weak to get off the sofa.

I've put on some washing and the dishwasher. I need to take out the recycling later which is always exhausting. The kitchen needs to be tidied but I don't have the energy.

Just do what is necessary and hang the rest. What distractions work for you?

Being online really. I just keep distracted by looking at my tablet and not looking medical stuff up.

You are in control of who you choose to tell. Sometimes less is best. That way, you don’t need to worry about their emotions, which frees up space to manage your own feelings.

Definitely rattle some cages tomorrow.

Looking up medical stuff is so tempting OP. I’ve been there. The problem is that without medical knowledge you don’t know what’s relevant to you and what’s not. So it’s really easy to panic if you come across even the smallest detail that you think could apply to yourself. When your see your consultant ask if they can recommend websites that you can visit for information. Mine did and it was really helpful because it gave information in layman’s terms and I could discuss what I’d found at my appointments.

OP you shouldn’t be doing anything more than you have the energy for. Can I recommend that you go on your local council’s website and look up home helps. Ours has a list of trusted people you can contact to ask for help. Social services should be able to point you in the right direction too - if you’re having trouble ask MacMillan and see if they can help.

I think you’re doing all the right things to advocate for yourself OP. But you need help. When is your clinic appointment ? Because when it comes, you need to ask for the best way to point you in the direction of the help you need.

I know it's tempting but I was reading some awful stuff and it was just adding to my fear. I have found Breast Cancer Now really useful for asking questions.

I'm confused about who my consultant is. The BC Dr said I'd only see her again if it hadn't spread and I'd be with oncology otherwise. Is the oncologist my consultant then? I was planning on asking questions at the appointment so I'll ask about useful websites. Good tip, thanks.

I can book a cleaner while social services sort this out. I'm meeting up with occupational therapy soon to discuss help around the house and equipment. My oncology appointment is 4 August. My GP has referred me to a 'proscriber' I'm not too sure what that means but they can help in some way. She's also contacted the local Macmillan nurse but I haven't heard anything yet.

I know. I'm desperate for help as my breathing difficulties are debilitating. I'm just dragging myself around and can barely do anything. I'll chase up tomorrow.

My best guess is that the BC doctor you saw is an oncologist. These are specialists who arrange ongoing treatment based on test results, but they are not surgeons. It’s really confusing because most BC treatment involves a mix of of surgery, chemo and radiotherapy. I saw a breast cancer surgeon whose speciality was BC surgery, mastectomy and reconstruction. His job was for surgery which would give the best chance of survival. After lumpectomy he advised that the margins (the places where the skin is closed after surgery) weren’t clear of cancer cells and that mastectomy was the best chance of survival.

He did that - he would have done reconstruction at the same time but I decided against this for various reasons. Then I was was referred to oncology for assessment as to what the best follow up treatment was because surgery is only part of it. I was told radiotherapy in the first instance but then called back to see the oncologist again because the MDT wanted some of the tumour to be sent for testing to see if chemo would be suitable. It wasn’t, so I had radiotherapy, was signed off by oncology and referred back to the breast clinic to see the surgeon for monitoring. So you may well have more than one consultant and it’s important to be clear who is responsible for what. BCC nurses are really helpful and if you have any questions your BC surgeon will refer to you an oncologist who can help with anything outside his expertise.

First port of call is your GP. If you can, go to the surgery and explain the situation and ask for help. In my experience cancer patients take priority so don’t be fobbed off.

Do you have a card with MacMillan BC nurse numbers on it ? This was the first thing that was given to me, so if you haven’t got one, ask. The numbers will put you in touch with the nurse clinic. It may just be an answering machine but in my experience it doesn’t take long for them to get back to you and if they don’t know the answer to your query they will find someone who does.

OP in my experience with other family members it’s really difficult to secure oxygen - it’s done through district nurses and I know they have to follow protocol but my sister had COPD really badly and it took about eight weeks during which she really suffered. Again MacMillan can help with this as they can confirm the circumstances and bypass many of the protocols necessary to secure an oxygen supply at home.

@Rosscameasdoody

It's confusing but the BC Dr was a breast surgeon. She told me that if it's spread I won't have surgery and won't see her again. She said I would be seen by oncology.

The BC nurses, said that I need chemotherapy as even if it's not advanced, they need to do chemotherapy before surgery. So I don't know who my consultant is and won't know until August.

I don't have the Macmillan nurse's number, so I can chase that up. I'm not sure I need oxygen. All my oxygen tests have been normal. IMO I need antibiotics and possibly steroids to reduce inflammation but obviously I'm not an expert. I also read that they don't like to give steroids as it can mask infection...

Huge sympathy. I also have extreme breathlessness and exhaustion. This is partly due to my main issue which I learned last week is liver disease and partly due to an asthma like condition, amongst much else.

I've been referred to respiratory and in the meantime had a lung function test and now have a ventolin inhaler which really helps. My cough is non productive however and I don't have a chest infection. Wondered if it might be worth mentioning.

I am under six different departments now and it is impossible to co ordinate anything.

Forget about the housework and conserve your energy. Sometimes I know I need to lie down but have no energy to get up and sit there like a zombie so I totally understand.

Thinking of you.

@Words Thanks and sympathy to you too, breathlessness is debilitating.

I tried the blue inhaler but it only made a tiny difference and I could only use it 4 times a day which wasn't enough. I am breathless when I do anything.

I'm doing my best to conserve my energy. Before I was diagnosed I completely decluttered and redecorated the house. It's no wonder I was completely spent. I rested for a week and felt a lot better, so I'm not doing much but it's difficult when you live by yourself.

Yep, you’re right, steroids can mask infection so that’ll be why they’re reluctant. If your test results show that the cancer has spread it doesn’t necessarily rule out surgery but may just indicate that radio or chemo therapy is required first. My cancer didn’t respond to chemo but I had hormone therapy for six months before surgery to try to shrink the tumour. I saw a BC surgeon for the initial results but saw a different one when the time for surgery came around. That’s possibly what she meant - not that surgery was not a possibility at all.

It’s really confusing and as you’re finding out, if things aren’t made clear it can be very worrying. Sometimes unnecessarily so. The trick is to not be afraid to ask questions - you need to be clear and it’s the responsibility of the people looking after you to make sure that you are.

She was pretty clear that I would have palliative care only and no surgery. She said it would be chemotherapy for the rest of my life. The appointment was horrific. Of course there's always the possibility that she's wrong.

I saw a 'navigator' today who said I can get a taxi card and blue badge for free parking. I had no idea and have spent a fortune on cabs recently.

I've got an appointment with my GP tomorrow to discuss treatment for my breathing and have contacted respiratory to chase up treatment as well. Occupational Therapy are coming next week.

I'm trying to organise a cleaner as the navigator said SS don't see help around the house as a priority. He also kept asking about POA, which is frightening but obviously needs consideration.

I'm also going to contact Macmillan at the hospital as they apparently serve my borough. I'll enquire about the local nurse.

It sounds as though you’ve been really productive today, OP. I think being proactive, gives you a sense of control in difficult situations ( if you see what I mean?)

I'm trying to keep occupied. Macmillan said they don't have a local nurse, and didn't know what I was talking about. Perhaps my Dr meant a point of contact in the community.

They've referred me for psychological therapies, apparently you can get 6 weeks of therapy but she said there's a long wait.

I've heard back from respiratory and they said it was a mistake to cancel the appointment and I've made another one. It's difficult not to overthink at the moment.

I also spoke to a helpline and they said that the MDT would figure out the best course of action re infection and treatment. So that's reassuring.

The person on the helpline, was right. The MDT will definitely take into consideration your current health issues and will put together a plan for you. This is their bread and butter, they are doing it all the time.

Also good news re: the respiratory appointment. Hopefully that will be soon?

Sometimes when a cancer diagnosis is given, you are assigned a nurse specialist; someone you can call to ask questions or chase up appointments/ test results. Was the helpline person from Breast Cancer Now? They seem to be quite helpful and reassuring.

Unfortunately there does seem to be a wait for therapies. Are you anywhere near a Maggie's Centre OP? If so, I would highly recommend you drop in. They can help with so much, including benefit advice, psychological support, complimentary therapies and a whole load of other stuff. Well worth a visit ( if not too far away). You can even just go in and sit in silence, no one will bother you.