I am new to this forum, and I'm new to dealing with cancer. My mum is due to go to a diagnosis meeting tomorrow, after 7 long, dark, torturous weeks. After extensive tests – X-ray, CT, PET, EBUS and MRI, we know that she has a tumour on her right lung and a spot on her spine. I have read some of the posts within this group and I feel as if I am going through everything with you all. I did feel unsure about posting because I know there are people who are dealing with far more complex issues than mine, and I’m trying ever so hard not to feel so bereft at this point because we don’t really have any concrete answers. I am trying to stay upbeat, and along with my amazing husband, focusing on my mum and dad and helping them to stay upbeat, although understandably they feel anxious, confused and scared.
I have read so much around the subject of lung cancer, positive case studies, and patient stories and have tried to ignore the stats because I know that everyone is an individual and responds to treatment differently. I am just so scared. Am I being realistic to think that my mum can live with this awful thing if it is incurable? It is strange how I have gone from hoping that it is not cancer, to hoping that it can be cured, to praying that it is incurable and not terminal. The doctors have said in a roundabout way that what they have found on her spine can be treated with radiotherapy, but will not say anything else until the meeting tomorrow. Is this usual? My mum has jumped to the conclusion that this will be because it is terminal. I have reasoned with her that this is not the case, it will be because the diagnosis is more complicated and treatment will be nuanced. But is this being naïve?
I hope it’s ok for me to ask these questions. I know that there are no certain answers but any advice or words of wisdom will be so appreciated.
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Marshmallows28
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When diagnosed with stage 4 lung cancer in 2010, I was told I had 10-15 months to live.
Please know that we were all new at this once. You are here because you need to be and a lung cancer diagnosis is scary for patient and family.
For me, hope came when I met a man who had stage 4 lung cancer that had metastasized to his brain. At the time I ‘met’ him he was a 13 year survivor of metastatic lung cancer. Since then I have met others.
You might want to get her to meet other patients in her position. Do go to the Roy Castle website and see if there’s a meting convenient for her.
Thank you Denzil for sharing. Great hope for others reading that you are a nine year survivor and your friend with a brain met is 13 years. I will be about to embark on my third year in 2020 and I also had brain surgery for a brain met this year. Both of your long term prognosis gives me a guy hope I need right now.
Thanks both, you are inspirational and I appreciate that you found the time to respond to my post. I hope I can pay it back to someone who is in my position at a later date x
I agree with Denzie if anyone can help you it would be her,she's really up to date. Tell mom not to be afraid I know it's hard to do were all going thru the same thing. You try to be strong. I had stage three and I had adenocarcinoma stage three in left upper lobe it was in my lympnodes. They removed upper lobe I didn't have radiation because I felt too weak. Did six months chemo I'm now a seven year lung cancer survivor... Let your mom read these pos vs it may help. There is hope,keep fighting don't give up they have new treatments out that are letting stages 3 and 4 live longer and more coming out. We will all help you and your dad get thru this and the one who really needs is your mom. Please let us know what's going on we will talk to the whole family and help. If y your mom needs to talk were all here. To talk to her. Love susiejo1948
Thank you Susiejo. My mum has been diagnosed as adenocarcenoma. It’s feels like a relief to put a name to it. Every piece of advice and kind comment is so greatly received. I hope I can also be of help when or if I’m needed x ❤️
I have found that the oncologists consultants are reluctant to say very much until they have absolute answers rather than it being bad news. If you are pushy with them and ask lots of questions they do give more information but just don’t offer it. I wish you and your mum all the best I have just been through it with my father and it is very very difficult.
sorry to hear about your mum, I was ill last September, and I'm very rarely ill, then told I had lung cancer but could live with it, then told when I met the oncologist it had spread further than they thought, and I had an average of a year to live, I went vegan and 5 months later my cancer is dormant, 14 months later I have some cancer in my rib and pelvis, but I think it was a bit the chemo missed, I feel good and am looking forward to a long and happy future, do take a look at the Follow My Lead campaign on the Roy Castle Lung Cancer foundation website, lots of inspiration there, mines David's story, be strong, always 100% positive, and wishing you and your family all the best with this, you can beat it, whatever the doctor says.
So sorry to hear about your mum. There are so many of us now who have been diagnosed as stage IV terminal actually living well with cancer! It is so hard at first coming to terms with the diagnosis but stay strong and positive. I’m just over 1 year and had mets to my brain and adrenal gland - one year in my mets can’t be seen and lung tumour is less than half the size. So please don’t give up hope - best of luck for meeting xxx
Thank you. I’m so pleased that your outlook is so positive. You give me so much hope. My mum has read your response and is now looking forward with hope too. X
You can see from the posts on the forum that there are others who have been through the journey you are experiencing with your mum and they are living with lung cancer,not dying from it. Research is ongoing and there are many different treatments available depending on the stage and type of disease.
The doctors will be wanting to speak to your mum when they have all the results and information at hand and they have discussed the findings with their colleagues in the multidisciplinary team and then discuss with her how best to manage her care. Hopefully things will be clearer tomorrow. Write down any questions or concerns you have before you go to your appointment. If you would like to speak to one of the helpline nurses please don't hesitate to call 0800 358 7200.
thank you. It’s good to know that there is somewhere to turn. We are feeling so much more positive after the meeting today, and I can’t think everyone enough for their supportive words.
Thank you all so much for the responses below. It is so amazingly kind and thoughtful of you, and is so reassuring and helpful to know that there is certainly hope. To update you all, following the meeting today, I am now hoping someone may be able to give me some information/ advice about the SARON NSCLC Trial? My mum has been diagnosed today, and along with conventional radiotherapy and chemo, has been identified as a potential candidate for this trial. We are talking to Trial docs later, but first hand accounts are always much better for giving actual details of treatments and/ or success. Mum is fit and healthy and they are confident that conventional treatment will halt, shrink and stabilise the tumour. So the question is, do we consider the trial but further to travel (peterborough to Cambridge) and it looks a bit more intensive but could potentially eradicate the tumours and prevent reoccurrence, or go with conventional treatment and possible immunotherapy?
any help greatly received. Thanks in advance yet again. Hoping I can repay your kindness further on down the line.
Hi - I’ve just completed 5 sessions of Steriotatic Ablative Radiotherapy in addition to my immunotherapy. They called it SABR here in Leicester but have looked the trial up and it’s the same. Mine was not part of the trial as my consultant put me forward for treatment as she classed me as oligometastatic and only cancer left was my lung tumour. It is very high dose radiotherapy targeted at the tumour. I went every other day for 11 days finished on 20 November. Each of my sessions was about 30 minutes. Side effects have been some shortness of breath and tiredness which will get better as weeks go on. They told me 6 weeks recovery and I have appointment in January just to check I’m ok but results probably 2/3 months I’ve been told. Best of luck to your mum xx
Thanks so much for that info. It’s exactly the kind of anecdotal feedback I need. It sounds promising and I’m really for my mum trying this. Best of luck to you too and sending good vibes your way x
It is 9 years ago since I had surgery to remove a 7cm tumour in my upper left lobe (adenocarcinoma) and I'm now very involved in lung cancer research. At the time there were far fewer treatments than now and much less was known about the different types and drivers/mutations that are now targeted. Do not panic, do not give up - I've met patients who are 20+ years out - and that was before the newer treatments. Unless you look at UK trusted websites (such as Roy Castle lung cancer foundation), a lot of the online information is very out of date and inaccurate. There are survivors in every stage - and if there are clinical trials available, then that can also offer different treatments - they're not on offer everywhere. good luck in helping your mum. yes, it's scary - but by supporting her, you're already doing a great job. take care
Hi there not sure if you have already spoken to the trial doctors, here is some general information on clinical trials that you may find useful.
Your Mum will have been given a patient information leaflet (which may be a few pages long) detailing the trial.
The SARON trial (comparing the addition of stereotactic ablative radiotherapy and radical radiotherapy with standard chemotherapy alone for oligometastatic non-small cell lung cancer) is a phase 3 trial which means it is designed to assess and confirm the safety and effectiveness of the previous phase 1 and 2 trials.
The patient information leaflet should detail the benefits and any risks involved, it is voluntary and will not affect your Mums care or treatment if she decides not to take part.
Being in a trial allows for a longer follow up period than normal (this trial is a 3 year follow up) and is very well clinically monitored. You will be provided with a research nurse and doctors contact details.
If you wish to discuss anything you can either email us at lungcancerhelp@roycastle.org or call our Freephone nurse led helpline number on 0800 358 7200
Brilliant. Thank you. We spoke to the lung specialist on Thursday, who gave us more info, and he has arranged for us to see the trial consultant on Monday 30th Dec. This all looks quite promising, so we are hoping that it will go ahead. Thanks again. Its great to know we can call on you if we need to.
That sounds good, the more information the better and where you feel you can make an informed choice. Good luck with it all and as always our email is lungcancerhelp@roycastle.org or Freephone nurse helpline 0800 358 7200
Hi Marshmallows. Very sorry to read your story especially at this time of year.
I was diagnosed with NSCLC in my left lung and a lymph node. The surgeon concluded it was inoperable. I was given with what they term aggressive treatment - 3 weeks of chemo and 6 weeks of radiotherapy at the same time. This was 12 months ago. Apart from being v breathless I feel fine. So there is always hope for everyone - the BEST treatment is to remain positive. Your Mum must believe she will be cured and lead as normal a life as possible. I try not to talk about it with family and friends not talking about it. I am convinced I will become an octogenarian! And still be able to play golf!
Thanks for your response. Your words are so positive and give me every reason to be hopeful. Please have a wonderful Christmas and im sending you peace and love x
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