New to the forum- in a complete spin

[Draigo]

Hello I have just joined the forum after much searching for a community that related specifically to my diagnosis. I am grateful to have found The Roy Castle Lung Cancer Foundation.

In November 2020 I was diagnosed with brain metastasis in total there were 12 tumours, 2 were surgically removed and I was referred to an oncologist. Histology showed that the primary tumour was in my lung. The oncologist recommended whole brain radiotherapy which would give me between 3 and 12 months to live and that there were no other treatment options. I changed my oncologist and was referred to a neurologist as well. I received targeted CyberKnife treatment to the remaining tumours. The oncologist found a small area on my lung that appeared inactive. I was treated with chemotherapy and immunotherapy and responded well. I returned to work in mid-2021. Regular CT and PET scans showed no changes so all was going well. Then 3 weeks ago a check up CT showed that one of the old tumour sites had become active and there was a new lesion further investigation showed an additional 3 areas which needed treating. I had CyberKnife treatment to all active areas 2 weeks ago. I had a PET scan yesterday to check my lung and am awaiting the results.

The recurrence has put me in a complete spin. I knew that there was a possibility that the tumours could return but was not expecting it to happen so suddenly when everything looked like it was going so well. I have taken some time off work to ‘re-group’ and am trying to be positive but am finding it difficult to find a path forward not knowing what the future holds. My rational side says take it step by step, day by day but my emotional side is in a state of panic!

Any thoughts or experience of similar situations would be most welcome.

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Draigo

Welcome to the forum and so sorry to hear you have had quite a journey already. It can feel quite isolating and overwhelming, especially when there is a recurrence, am sure you will find support and encouragement from others in the forum.

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...

Our campaign section provides encouraging accounts from those living with lung cancer: roycastle.org/campaigns/

Hope you have a good report from your PET scan and if there is anything else you would like to discuss you can email ask the nurse 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

Take good care of yourself

The Roy Castle Support Team

[Eglingham]

Hi, welcome to the forum ☺ I understand your confusion over this journey. I was diagnosed with lung cancer January 2020, I had my right lung removed in two stages and was told they got it all and needed no further treatment. In October of 2020 a nodule was found on my left lung that they kept an eye on, September 2021 it showed growth so sent for a pet scan. The nodule did not light up that time but showed a reaccurance on my right side, the lining of what my lung was in so had radiotherapy in January 2022. The ct scan 3 mths after was inconclusive so sent for another pet scan which showed a further three tumours on the right and the left lit up this time. I am currently having chemo and immunotherapy and so far so good. It's one hell of a journey full of ups and downs but never give up hope, they have so many treatments now and there is always new ones being released. You just have to keep going and fighting this awful disease, so many people live years with it now. You can do this! Sending positive thoughts. X

[Draigo in reply to Eglingham]

Hi Eglingham, thank you for your response. Wow what a journey you are having it gives me hope and determination to fight this unpredictable disease. I hope your chemotherapy and immunotherapy go well and you don’t experience too many side effects. Stay strong sending positive thoughts back x

[Elt79]

Hi Draigo - I have had simIlar experience re brain mets. Diagnosed with Stage IV NSCLC with brain and adrenal mets Oct 2018 my brain mets were treated in February 2019 with SRS (same as Cyberknife) anD treated with immunotherapy, Pembrolizumab, for 2 years. Was doing really well the MRI in December 2020 show reoccurrence of brain mets. I was absolutely floored and after nearly 2 years didn’t expect this, although always knew it was a possibility just hadn’t been in anyway expecting it as felt so well and had no symptoms at all. Fortunately I was successfully retreated in February 2021. Am currently on no treatment and have been moved to annual scans and no appointments for a year, I have found this particularly nerve wracking. Scans were my comfort blanket if you like and that has been taken away I just try to remain as positive as I can on on this very bumpy journey of ours! Wishing you all the best going forward x

[Draigo in reply to Elt79]

Hi Elt79,Thank you for your reply our experiences are very similar I have felt absolutely floored but am jumping back up! I will just need to learn to live with the uncertainty between scans for a period of time. Many congratulations for getting through to yearly scans on the bumpy road. It must be hard to not have the security blanket for such a long time between scans, but it is a positive step😊

[Elt79 in reply to Draigo]

Hi Draigo glad to hear you’re bouncing back’! I am truly grateful that I’m outliving all expectations by my oncologist so onward and upward!! Best of luck x

[Gymbuddie]

Hi Draigo. Good to have you on this forum. I am sure you will benefit from it. I have read some helpful and positive posts. I am so sorry to hear about your predicament after progressing so well. As you are aware, with cancer you always have the ups and downs. I know it is always endless an worry when you are awaiting result and that it is easier said than done, but as you said, you got to try and take one day at a time.I was diagnosed in March 2022 with Stage 4 primary lung cancer, which has metasized and spread to my spine, liver bones and brain. I am on Brigatinab which is shrinking the cancer. I still work and do weight training and aerobic exercise. I have decided that I am not going to worry about it, but enjoy life while I can, as I do not know what is around the corner. However, I do have my bad days, but every day is another day. I wish all the best.

[Draigo in reply to Gymbuddie]

Hi Gymbuddie,Pleased to meet you. It is so good to hear your positivity. I relate to not knowing what is round the corner but it is important to have the best days you can. Take care.

[sassassas]

Hello Draigo - pleased to meet you.

I have total admiration for everyone living with cancer. As I watch my husband's journey, I have become painfully aware of how life changes for ever after that moment of the diagnosis. But then you all pick yourselves up, decide what you want to do and face it head on. You are all so brave and inspiring ❤️

I see Roy Castle have written about the support they can provide, which I'm sure will be excellent. Did you know Macmillan offers 1 to 1 counselling through Bupa for cancer patients? Its free of charge, and you can read about it here

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

I really hope your PET scan results are good. We just try to remember that if it does show something active, a treatment plan can be put in place.

Thinking of you x

[Draigo in reply to sassassas]

Hello sassassass,Thank you for your message and recommendations. I hope your husband is doing ok x