Firstly, I wanted to thank everyone for sharing their story here. You’re all so strong. Inspiration and supportive, and it’s been really reassuring reading them so thank you for being open.
We’ve had a recent diagnosis of lung cancer which has spread to my Dad’s brain, and potentially lymph nodes in the past 3 days and we are obviously devastated. He had no symptoms until the brain tumours so we feel as though it’s advanced and thought the worst. He is having a bronchoscopy tomorrow to biopsy the lymph nodes and hopefully in 10 days time will come up with a treatment plan. It was a comfort to know that this was an option.
My Dad is so strong right now, and we are doing everything we can to rally around him. Does anyone have any advice or anything that may help us on this journey? I’m going to show him this group later on today as I think this will give him a great boost knowing the support around him.
Thanks 🙏
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Wolfie03
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My family have been very supportive by encouraging me to live as normally as possible during this challenging time. I’m not fully diagnosed yet. My dedicated nurse can be there for my children if they want to ask questions, as are the nurses on the helpline here and MacMillan. Anyway, we all keep life as normal as possible. They are encouraging me to have a good diet in a gentle way. My husband tried to wrap me up in cotton wool but eventually we agreed that this wasn’t good for anyone.
My daughter, employed as a counsellor for children with cancer suggested we all had ‘cancer free’ days to give everyone’s brains a rest from the anxiety. The one thing I didn’t want was to continually talk about it and go down the what if path.
Dr. Google can be very unhelpful so stay with recognised sites such as this and MacMillan for information. I’ve been listening to Professor Robert Thomas on UTube. He’s a well respected oncologist and talks about treating the whole person.
I hope this is a bit helpful and I’m sure others who are further down the line can help. I wish you and your family love and all the best. 💐
This is the worst part waiting for tests to work out the best treatment. Once the treatment starts there is a sense of calm. I had very similar and took medication to assist with my anxiety. I was also referred to a hospice and given counselling as I wasn’t very good at the what if and waiting. I read loads of patient stories on RCLF they gave me hope so maybe pick out a few that sounds similar. Wishing you all the best xx
Thanks for this, it’s reassuring just reading these stories you’re completely right. We thought the worst and now our outlook has changed because of this forum so thank you. Wishing you all the best and love xx
I know it's difficult. I had tumour in lung six years ago it then spread to my lymph nodes in the neck. I had superb treatment chemotherapy then radiotherapy. Followed by two years of immunotherapy.
Treatment by NHS has been Fabulous. It took six years but my cancer is currently in remission.
Kevin your story is an inspiration to me. I have Stage 4 NSCLC that has spread to lymph nodes, diagnosed last year. I felt I didn't stand a chance until I read your story. First on immunotherapy, followed by radiotherapy, now chemotherapy. I try and stay positive I know it must help.
Hi Wolfie,Always scary watching our loved ones go through such things - I was in my mid 20s and he was in his late 50s when my dad had his first bowel cancer and surgery then it returned so more surgery 6 months later and we didn't think he'd reach 60. He was 92 last month and had another primary bowel cancer in 2016 and more surgery.... each time I want to protect him and ask loads of questions but noticed many differences in his curiosity and 'will to survive' at 86 than when his first experience...
it's so important to be there for him but also find support for yourself.... either Roy Castle lung cancer foundation helpline, online group support or Macmillan helpline - all set up not only for patients but those affected by cancer.
As others have suggested, it's important to see beyond the condition, diagnosis and treatment - he's still your dad.... so share the time with him doing things, making memories, talking, letting him know you're there rather than dwelling on the 'what if'.... which can be so draining....
You may find this link helpful especially the downloadable booklet which has advice and information for different aspects and their materials are regularly updated to take into account changes in treatment but keeping up these days with lung cancer treatments is almost impossible as new treatments are being introduced all the time as much more is learnt about the different types.... good luck to you and your family..... roycastle.org/about-lung-ca...
Hi Wolfie03 Your dad is very lucky to have you on his team 💕
There's lots of brilliant responses to you already. I can only reiterate that it gets easier once his diagnosis is complete and he has a treatment plan. Make sure you're getting genetic and PDL1 tests. If you're at a big cancer centre, these should be routine.
It does feel like forever to get the full results in but its the right thing to do, to get the very best treatment for your dad's specific tumour type from the start.
A couple of things that have been really helpful for us - we have a 'curfew' at 7pm so that we never go to bed thinking about cancer. And getting out for walks in the woods, enjoying nature, a little exercise and nutritious food can all have a positive impact on mental health and boosting his immune system.
I do so agree. I generally stop doing any cancer related stuff by this time in the afternoon. Today is different as I had a lung biopsy this morning and needed to let everyone know the score. I still have to talk to my husband. It’s no good phoning as his hearing is not good but I’ve told him I’m ok and there’s every chance I’ll be able to go home a bit later. I messaged my family but will need to write to his family a bit later. I was quite wound up this morning, understandably but will be better once I know I can go home.
I think communication and honesty is so important. Not just to children but from children as well. Letting them know I’m ok means they can stop waiting for news. I also took the opportunity to get some advice about visiting family. Radiologist was very helpful and suggested I took it easy tomorrow with no lifting. Every little bit of information is important as we all want to do the best for ourselves and our families.
So glad you are finding this site so helpful. I do as well.
Welcome to our forum, you will find as I am sure you have seen from all the previous replies that its a friendly and very helpful crowd who are supportive and always happy to share their experiences.
I am very sorry to hear of your dads recent diagnosis, this will be a very stressful time for you, going through all the tests and waiting for results and treatment plans understandably causes great anxiety.
If you are looking for information on cancer treatments it is best to avoid Google as often information found here can be inaccurate or out of date, stick to web site such as our own, Cancer Research UK (CRUK) or MacMillan, I have added the links below.
roycastle.org/
cancerresearchuk.org/
macmillan.org.uk/
You may find this booklet helpful on 'Managing a lung cancer diagnosis'
roycastle.org/app/uploads/2...
Once you have been allocated a consultant a lung cancer specialist nurse will be allocated to you, she is part of the team and will be an excellent source for information, answering your questions and can act as a go between with the consultant.
We have many booklets on the different treatments and living with lung cancer which you can find here: roycastle.org/help-and-supp...
We have an online support group through zoom and if you are interested in this you can register through this link:
roycastle.org/help-and-supp...
There are many encouraging accounts from those that have gone through similar and these can be found on this link: roycastle.org/campaigns/lik...
Please do not hesitate to contact us if you would like to discuss anything, you can email ask the nurse at lungcancerhelp@roycastle.org or call our free phone nurse led helpline number on 0800 358 7200 Monday to Thursday and Friday 0900-1600
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