Any help please

[Newbie270]

Hi all

My father just recently been diagnosed with lung cancer, waiting for biopsy staging he’s in pain, low mood and feels depressed I’ve asked him today does he want to take anti depressants - what can we do how can we help him?

[HopefulAnnie101]

Hi Newbie, I’m so sorry to hear about your dad. Roy castle have a help line, perhaps your dad might find comfort in talking to the nurses about his diagnosis? Macmillan also have an emotional support line too. That not only helped me but my dad during the first few months of his diagnosis. I think not knowing what’ll happen next and the waiting is the most frustrating. I hope you’re keeping well too. All the best to your dad x

[Newbie270 in reply to HopefulAnnie101]

Thankyou so much, yes we all feel numb and it’s like a bad dream and my dad is very strong but it’s getting to him now never seen him so down

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Newbie270

So sorry to hear your dad has lung cancer, and it is understandably an emotionally difficult time for you all.

You may find this link useful from Macmillan support on cancer and the emotions: macmillan.org.uk/cancer-inf...

If your dad is still in pain, this can bring his mood down and equally any low mood can make pain worse, hopefully your dad will discuss this with his GP , lung cancer nurse specialist or oncologist, so he can have adequate pain relief. If your dad does not have a specialist nurse yet, this may be allocated to him at his consultation.

Lung cancer treatments have improved in the past ten years with immunotherapies and targeted therapies. These drugs only work if there are specific cell mutations/proteins present from the biopsy. The waiting is very hard, not knowing what happens next, and we have plenty of information and support available, which is detailed below.

This link will take you to our booklet on 'Managing a lung cancer diagnosis' : roycastle.org/app/uploads/2...

All our information booklets on the different treatments and living with lung cancer, can be found on this link: roycastle.org/help-and-supp...

If you are looking anything up online, we would advise that you keep to the following websites, that provide accurate and up to date information:

roycastle.org

cancerresearchuk.org

macmillan.org.uk

We have a range of support services, from one to one support to online support groups through zoom , if you are interested in any of these you can register through this link: roycastle.org/help-and-supp... , alternatively you can email our support coordinator at [e-mail]

It can be a very frightening time for everyone involved, and please feel free to contact ask the nurse if you would like to discuss anything at [e-mail] or call our free phone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600

Kind regards

The Roy Castle Support Team

[Newbie270 in reply to RoyCastleHelpline]

Not good they are treating him for small cell and non smal cell but mainily small cell it’s gone to his brain cerrebleeum can this be treated if I’m this part of the brain??

[Cockailschemocancer]

Oh gosh, it's such a hard time the bit between diagnosis and treatment, when there is a plan, it does start to get a little easier. Just go with the flow with what he wants, support from counsellors, anxiety meds, whatever it takes, it won't be forever. I wish you all the best with the future treatments xx

[Keepingstrong]

Hi Newbie,I'm sorry to hear your dad has lung cancer. The waiting is the hardest for him and your entire family. It can feel very lonely. When my husband was first diagnosed we went through the fear and the unknown with so many tests and appts. I hope for some good news and that it is in the early stages. Focus on things you can do now to heal and get better. We seeked out a MD who also does natural therapies. We focused on strengthening the immune system, eating healthier, exercising and seeing a psychologist. All the best for your father and your family.

[Newbie270]

Thanks everyone for your messages as well my mum is been accessed for Alzheimer’s at the same time they need district nurses and an OT assessment I mentioned to my mum today about having some care workers to come in she said she doesn’t want any it’s difficult to know what to do next

[JanetteR57]

always hard to watch our parents suffer in this way - my dad had bowel cancer twice in his 50s within 6 months and we didn't think he'd get to 60. he was 92 in February and had another bowel cancer in 2016 when he was 86 and another major surgery. my mum has had alzheimers' for 17 years..... we can feel so helpless. One of the problems with lung cancer is that public awareness hasn't caught up with where treatments have been developed so most automatically think it's a death sentence. It was 2 weeks after my 52nd birthday when I went to A&E and some months later after surgery to remove half my lung and a 7cm tumour I was told it was lung cancer. I was back at work and swimming by the end of March - that was in January 2011. so much has changed since then in terms of knowledge, research and new treatments and even treatments like I had have changed - so now the majority of UK lung surgery is keyhole not open as I had.

Our minds can take us into dark places and imagine all sorts of outcomes but we have to work it through - GPs/primary care are rarely up to date with the latest on lung cancer so specialist lung charities like Roy Castle lung cancer foundation offer regularly updated patient information that's easy to read and understand and also suggests some questions he may want to ask.

For your part, a book called 'what can I do to help?' by Deborah Hutton may help you.... the information, helplines and online group sessions run by Roy Castle charity are available to anyone impacted by lung cancer not just the patient so your dad may value support from another family member in the appointment. good luck to you all... the uncertainty and waiting for tests, results can be hard to handle but they're all very necessary to ensure the most appropriate treatment can be offered... roycastle.org/about-lung-ca...

[Newbie270 in reply to JanetteR57]

Thanks for sharing this

[1973Ren]

Prayer is the best

[Newbie270]

Hi allMy dad has got to see the consultant the MDT team next Monday he should have gone today, but he didn't feel well infact he's been sick all day, can a symptom of lung cancer be sickness he's started some anti sickness meds today, the lung consultant called today to say it's stage 3 and in some of the lymph nodes and theybare still awaiting the full report, they said they can't do surgery because its advanced and want to start him on chemo so we still don't know what type it is or what mutation the cancer is my dad is sleeping all the time and week with no energy how will he able cope with the chemo? It's very stressful at the moment with everything going on including my mum who's got memory issues

[JanetteR57]

nausea/sickness are more often a sign of anxiety or treatment effects than lung cancer.... worry can impact the gut a lot - with either sickness or diarrhoea. Stage 3 is the stage which clinicians discuss most often at lung cancer conferences/education events I attend - as surgery is used as one of several treatments in some places and not in others... however combinations of targeted therapies, immunotherapy, radiotherapy and chemotherapy can all play a vital role in dealing with the symptoms. I also know of patients who had treatments and their tumour reduced sufficiently in size to be surgically removed so never give up. Sleeping all the time also can be a sign of low mood and anxiety - and most people are unaware of the many and different treatments available now for lung cancer - it isn't the devastating outcome that many had in years gone by. GPs and other clinicians not involved with lung cancer are often unaware too.

Please don't google as so much information is out of date, inaccurate and often from other countries - Roy Castle lung cancer foundation as the UK's major lung cancer charity has information on all sorts of aspects of lung cancer including diagnosis, treatment types, tumour types and staging, living with lung cancer including dietary/eating well, keeping active, breathlessness, working and travelling with lung cancer. It's 11 years since my diagnosis (stage 2b) and I've remained active and working ever since my treatment/diagnosis.... and met and worked with others (now involved in lung cancer research) who survived 10, 15 and 20+ years before many of today's newer treatments or treatment combinations even existed...

Roy castle charity also offers online support, nurse led helpline as well as group sessions and printed information to download or have posted which is clinically updated and regularly reviewed by a patient panel for 'readability'.

I understand how stressful it is - my mum has Alzheimer's and when my dad had his third bowel cancer in 2016 (aged 87) I kept asking him questions to ask his medical team but his response was 'I'm not interested - I just want to get home to your mum' so even a patient who when first diagnosed in his 50s was keen to get back to work and take part in research had changed his approach - so hard to watch our parents suffer like this.

thinking of you.... roycastle.org/help-and-supp...

[Newbie270 in reply to JanetteR57]

Thanks he's not on any treatment or chemo yet? Donate you saying other hospitals in the UK would operate? She said today the consultant that it's a large mass tumour in the right lung and gone into the lymph nodes, we don't know yet what stage or mutation just been told if he's fit enough the will oy do chemotherapy?? Is this correct ?

[JanetteR57]

If it's spread into lymph, it's correct they'll attempt a systemic treatment to try and reach all the cancer cells wherever they are such as chemotherapy, targeted therapy, immunotherapy and radiotherapy or even a combination. Then they'll assess response to the treatment to work out next steps... hope this helps.... good luck.

[Newbie270]

Hi all, just wanted to say thank you all for been so helpfulWe went to see the oncologist consultant today he was a senior reg r he showed my dads lung scans and he said they can’t see the tumour it’s covered with fluid however they said it’s definitely stage 4 and it’s spread to the lymph nodes which they said are quite large next to the bronchial he said they still don’t know wether it’s small cell or non small cell and still don’t know what protein or mutation

He said he will either call me later today or in the week, he then said if your dad has no treatment six months (we are all deverstated ) he said if he has combination of chemo radiotherapy and he could have imunotherapy as a second line treatment prognosis two years or more and then he said everyone reacts to treatment differently my dad is really tired now and just wants to sleep we asked him he said he doesn’t want treatment we hope he changes his mind we all feel numb

[Newbie270]

Not good they are treating him for small cell and non smal cell but mainily small cell it’s gone to his brain cerrebleeum can this be treated if I’m this part of the brain??