What to expect when you have little information

[FREAKOUT]

My moms has lung cancer, diagnosed 15 months ago. She couldnt have biopsies as they said her lung would collapse and no chemo as they said she was too frail. They also said people dont do well after 12 months.i dont really know what to expect. My dad had lung cancer too but it was a pancoast tumour and had brain mets. I just want to know what to expect so I can make sure she gets what she needs. It feels like it's been "there you go, your mom has cancer, now crack on"

[JanetteR57]

That sounds very difficult to deal with and I can fully understand your anxiety. Have they said what type of lung cancer your mum has. Pancoast is quite rare and if your mum has non small cell cancer, there may be the possibility of immunotherapy or even palliative radiotherapy. Have you discussed your concerns with her medical team? What does your mum actually want? Sometimes relatives want them to seek treatment at any cost, take part in clinical trials etc whereas that may not be what the patient themselves want. That's a terribly broad dismissal statement of people not doing well after 12 months as there are many on here and in other groups who were told by clinicians they would only survive a matter of months and they are living for years supported by different treatments in a treatable but not curable situation. There is clear information on Roy Castle lung cancer foundation website but it's much better to understand your mum's actual situation as treatments are usually based on an individual's situation and general health and any other long term conditions as well as whether a biopsy shows they may benefit from a targeted therapy. you may also want to call the nurse led helpline at the charity too for more guidance. it certainly sounds as if you don't have enough information - even if your mum decides with the clinician that there is no suitable chemotherapy, there should still be a supportive care package put in place. although the pandemic is putting pressure on the health system, the UK is still following a national lung cancer pathway guidance and related protocols. good luck - it's always hard when dealing with a situation on behalf of another and unless the patient has given permission to the health workers to discuss their case with a relative, some staff are very reluctant to give any details only generic responses. hope you get some support for you both and soon.

[FREAKOUT in reply to JanetteR57]

Thank you. Mom has got a designated palliative nurse but can only have telephone consultations at the moment unless she needs eol care. She gets short of breath easily and is underweight anyway. She has COPD, osteoarthritis and is quite frail. No chemo due to frailty and co-morbidities and would need histology for treatment and a CT guided biopsy would only cause her lung to collapse. Info was cavitating squamous cell satellite lesion metabolically active SUV 9.5. Regular xrays are not recommended as that would cause more anxiety. Mom has a dnar in place and has stipulated her wishes now. It feels like a rollercoaster. Most days I think oh God this is the decline, then she'll have a good day and I'm relieved. She doesnt need anticipatory medication just yet and GP has given her yet another lot of antibiotics

[JanetteR57 in reply to FREAKOUT]

Thanks for explaining the situation as this is why she's in palliative care pathway. Is she at home or in a care home? I'm guessing from your response that you are with her? One of the difficulties of being in supportive/palliative care is that we can assume it will be for a short time but for some it can be longer with good and bad days as you describe. It's good if you can be there with her and that she has a designated nurse even if only via phone at this stage. If her GP has given her antibiotics that may relieve whatever have made her worse at the moment.... although they can sometimes take a day or two to have any effect. take care

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Freakout

Welcome to the forum and so sorry to hear about your Mum and your Dad, you have had a lot to deal with in the past few years.

As you know everyone is different and no one can say for sure any time that is left. General signs would be that your Mum's health starts to do down, perhaps more tired, needing to sleep more, short of breath, no appetite or weight loss.

Feel free to use or not use the links below, it may not be what you want to read but equally you may find them very useful

If you are wanting information about what to expect at end of life, cancer research UK go through some stages:

cancerresearchuk.org/about-...

Macmillan Support online have some information on what to expect as time goes on. I have placed the link below:

macmillan.org.uk/cancer-inf...

If your Mum does not have a palliative care nurse/Macmillan nurse this can be requested from the GP, even if your Mum does not need it just now, it is good to have a contact person now, so that when your Mum needs more assistance or care they are known to your Mum. It may be worth considering, if you have not done already, what your Mum would like if her health starts to go down, or where she would like to be cared for.

Make sure you have plenty support for yourself and if you wish to discuss anything you can either email us at [e-mail] or call our freephone nurse led helpline number on 0800 358 7200

We are offering a new support service during this period of isolation, where one of our dedicated team members will either call or email once a week to provide support, if you would like to take advantage of this or if your Mum is interested, this is the link on the information and how to register:

roycastle.org/covid-19/info...

Kind regards

The Roy Castle Support Team

[FREAKOUT in reply to RoyCastleHelpline]

Thank you so much for this information. Mom has got a DNAR in place and I have poa should it be needed. The links will provide much needed support. Thank you

[RoyCastleHelpline Partner Ask the Nurse Roy Castle in reply to FREAKOUT]

Dear Freakout

If there is anything we can assist you with or provide more information on please do not hesitate to contact us either by email at [e-mail] or our freephone number on 0800 358 7200

Kind regards

The Roy Castle Support Team