Finally a consultants appointment

[Loki19]

So since 26th March we finally have an appointment with either mums consultant or a member of the thoracic team. Really hoping after all of this time we get a diagnosis and if our worst fears are realised they’ve at least thought of a treatment plan which can be started straight away. Just hope my nerves hold out until then ........

[Tcam]

Good luck 🍀

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Loki19

This must feel so daunting for you all and am sure you have many questions you want to ask.

Whatever the diagnosis is they should have a treatment plan proposed already and will discuss this with you all, unless further investigations are required.

At any appointments like this and not knowing what will be said, it is very common to only take in the first 5 minutes, therefore it may be helpful to have your questions written down.

If it is lung cancer, there should be a lung cancer specialist nurse allocated to your Mum who can provide you all with information and support.

Hopefully all will be well and keep us posted.

All the very best

The Roy Castle Support Team

[Loki19 in reply to RoyCastleHelpline]

Thank you.

Mum got a letter today telling her where the appointment is which is a ward specialising in Oncology and where out patients receive Chemotherapy so it’s very hard to not assume the diagnosis. 😞

She has been told that she may also have another ecg, lung function test and a couple of other tests whilst there 😢

[JanetteR57 in reply to Loki19]

I wouldn't draw any conclusions from that necessarily. I originally turned up in A&E with a number of symptoms but was discharged after 7 hours then readmitted the following day and kept in for 6 days - despite them having found a 'lesion' on my left lung the previous day. I was misdiagnosed and treated for 'uncontrolled asthma'. At the time I was moved into a side room with literature in it about cancer concessions for parking/macmillan information and I asked whether there was a link. I was told absolutely not as this was the only quiet place where there was a bed. The CT scan revealed the 'lesion' to be a 'large mass' and after a PET scan, I was called in urgently to see a surgeon who said 'this mass needed to be removed from my lung' then determined what it was to determine any future treatment. I had surgery to remove half my left lung and the tumour that was lung cancer but as I'd never smoked and had childhood asthma (but not had it in decades), they had followed a different path. In follow up clinics, the consultant I see has days for 'TB and lung cancer' but will interchange patients if they're unable to see on the relevant day but it doesn't necessarily follow they have the other condition. Many patients are given their diagnosis within the chest clinic at our local trust - that doesn't mean that everyone attending that clinic has lung cancer. Much better to wait and see what the situation really is - our imaginations can run riot - and whatever it is, there are now many treatments out there. My diagnosis was 8 years ago in January and I've become very active in lung cancer research and met patients who have survived 20+ years at times when such treatments were not available . The main advice I would give is not to give up - either as the patient or relatives - things are changing all the time. Also to be patient - due to the specific treatments now given for lung cancer (if it is) all manner of pathological tests and imaging have to be done in order to determine what the treatment options might be. The wrong treatments will only harm. Good luck.

[Loki19 in reply to JanetteR57]

Thank you for taking the time to write to me and with such sensible and caring advice too.

We won’t give up neither will mum she has a really positive outlook even telling us that if she has this awful disease and if they can’t cure her she won’t let it kill her 🤞🤞

We will know soon enough and then we will deal with whatever as positively as we are able x

[JanetteR57 in reply to Loki19]

You're welcome. When I asked my surgeon what would help me, he said 'a positive attitude'. Unsure whether it has or not but I do believe that giving up has a negative impact. Sure, there will be days when we all feel like giving up whatever the condition, but your mum sounds as if she has a fighting spirit. good luck. x

[Loki19 in reply to JanetteR57]

Mums amazing!! She has battled a few illnesses in her life and never lets anything get to her, at least not that anyone would know!

She currently has rheumatoid arthritis which she’s had for many years but it’s well managed that’s as a result of all the steroids she thinks she had to take when she had ulcerative colitis, they removed her large intestine and bowel and she’s been fab since!! She also had breast cancer but beat that as I say she’s a fighter so hopefully she will do the same “if” she has this now. X