Few weeks ago my brother received information that he has lung cancer (no talks on staging yet). The information we received is that he has a small tumor on his right lung. Currently we are waiting for the result of the tumor sample they took and we should receive it this week. While waiting for the final results he received chemotherapy 2 weeks ago.
However, last week a brain scan revealed that he has 5 small (1mm) brain metastases. On Friday this week he will receive gamma knife surgery for the metastasis.
So... we are in shock. He is only 39 years old, very healthy, never smoked.
Welcome to the forum and sorry that it is under sad circumstances with your brother having lung and brain cancer.
It is understandably a shock for you all and distressing. I am sure you will find plenty support and encouragement from others in the forum.
You may or may not know of our information booklets, and this link will take you to our booklet on brain metastases: roycastle.org/app/uploads/2...
Hopefully the other results will come through soon. They may be testing for cell mutations/proteins that may be present that may offer him the relatively new treatments of immunotherapies or targeted therapies
We have online support groups through zoom if any of the family or your brother are interested and you can register through this link: roycastle.org/help-and-supp...
If there is anything else you would like to discuss 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 0900-1700 and Friday 0900-1600
All the very best
The Roy Castle Support Team
I'm so sorry about your brother minion. You will be in terrible shock.
I have a tumour in upper right lobe and underwent biopsy amongst loads of other tests, including PET scan which showed spread to lymph nodes and couple of small brain mets.
I underwent radiotherapy for these at Salford Royal Manchester, quite daunting because they mould a mask to your face attached to CT scan so they can target precisely the right place. They said they'd zapped it so now waiting for followup scan to see if success.
I've heard of gamma knife surgery, they do it a Christie hospital Manchester where I'm treated. They will do numerous tests to personalise his treatment.
Glad you posted, so much help and support on here. Lots of success stories. Your brother is only young, I'm sure he will do well.
With all the treatments and drug trials it's amazing. I'm on chemotherapy 1st session last week, previous immunotherapy wasn't successful.
Keep in touch and best wishes
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Thank you for the kind words. Let us know how it goes for you.
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I will thank you. This is a great site for help and support.
Hello, I am so sorry to hear about your brother! I know exactly how he feels, as I too was only 39 when I was diagnosed with stage 4 lung cancer. I have had gamma knife twice to treat my brain mets and both times have been successful! I have had chemo and immunotherapy but I am now on targeted therapy tablets to keep the cancer stable! I have recently celebrated my 40th birthday and continue to remain positive. The only advice I can give is to take one day at a time and try to keep healthy, walk as much as possible as this is really good for your mental health!! Please reach out to me if you want to ask me any questions! Much love to your brother and the rest of the family xx
Hello, I'm very happy that the result of gamma knife was successful for you and I'm sure it will also be for my brother. Was the immunotherapy successful for you? What target therapy are you on?
Hi, I only had 3 rounds of chemo and Immunotherapy and it completely cleared the tumour in my lung! The reason I only had 3 is because it was causing damage to my kidney and ended up in hospital for 10 days! I am now taking sotorasib but you have to carry a certain mutation for this! On my last scan I was informed that there was some cancer in my renal lymph node but was stable and continues to respond to the immunotherapy. But when I got 3 more brain mets it showed that the cancer was active so starting taking the sotorasib to control it again!
This is going to be the hardest time for your brother but trust me it will get better! I have continued to work all the way through my treatment and have now signed up to do race for life in the hope that one day we will find a cure for all of us!
Saw your reply locket to minion and just wanted to say I'm so happy for you and you give me strength throughout this awful time. Second chemo in 4 weeks. Immunotherapy unfortunately didn't work.
Hi Hidden Welcome to the forum - and so sorry to hear about your brother. You will be surprised I'm sure how many people get lung cancer who are young, fit, healthy and non-smokers. You may also be surprised at how well people can live with advanced disease - I know I was. Locket39 's story is lovely to read and a great example.
My husband (in his early 50s) was diagnosed a year ago totally out of the blue - NSCLC with extensive metastases in his bones. He has responded brilliantly to his treatment (chemo + immunotherapy for 4 cycles and now just immunotherapy every 3 weeks) and currently has no evidence of disease. When I remember those initial scans and how many tumours there were, I would never have believed this would be possible.
Many people do respond really well to their treatment and we've asked our oncologist what it is about those people - they don't really have an answer (yet) but he tells him to keep doing what he's doing. That's eating well (nothing specific, just a very wide diet, lots of veg, not too much alcohol, avoiding junk food), getting good sleep (really hard at the beginning but it does get easier as you all adjust to the news), exercise - whatever your brother enjoys, and making time to enjoy and appreciate life (again, I know it may be pretty touch during the shock of the initial diagnosis).
The other thing to say is that it does get easier over the coming weeks. When you are waiting for all the results, its just so hard, but it does mean the treatment your brother gets is the very best for him from the start.
Hi. "no evidence of disease" wow I'm so glad to read that. My brother is a very healthy person (ex soccer player). I'm taking walks with him twice every day and every time we walk I have to tell him to slow down because I cannot keep up with him. Because of these walks and also walks with my father it really helps us to stay mentally somehow okay. The wait for the treatment is like hell, but within few days he should get some more information.
That's lovely to hear. His health and fitness will stand him in good stead for the next few weeks.
Yes, "NED" is very possible, and it's also very possible to have disease that is kept stable by the treatment. We know my husband's cancer isn't curable but its all about living with it these days. xx
always a shock but as you say, more so for those of us never smokers who somehow had no idea this could happen - but it does - to many tens of thousands every year. Raising awareness that anyone with lungs can develop lung cancer needs to happen. His fitness will really help him - mentally and physically- I was swimming distances (130 lengths non stop several times a week) when diagnosed in Jan 2011 and after surgery (removing half my left lung/7cm tumour) went onto swim much further over the years. There are many more treatments now especially around specific characteristics (mutations/markers) within the tumour and much more is known about the many types due to research. If it has spread, more 'systemic' approaches are taken to 'zap' the cancer with chemotherapy, immunotherapy or radiotherapy or combination of all or some of them rather than localised treatment which I had.
Our initial thoughts are often really negative but never give up - as well as many treatments already available, new ones are being developed all the time....
Gamma knife can treats brain lesions successfully so it's good he's scheduled to receive treatment quickly.
For now, be there to support him and try not to cry/express your fears to him as that may add to his own mental processing/anxiety.
Find some support for you, too... Roy Castle lung cancer foundation and Macmillan both run nurse led helplines for those affected by lung cancer not only the patient... and Roy Castle also run online sessions to help people learn more. Their website is regularly updated, used by healthcare professionals and patients/public and a trusted resource with information on so many aspects....
I also found reading helped me - back then sites like this weren't around -2 that I found helped were 'anti-cancer - a new way of life' by Dr Servan Schreiber (who detected his own brain tumour and changed his lifestyle and career) and 'cancer is a word not a sentence' by Dr Rob Buckman.
good luck to you both.
An update.
My brother just received the gamma knife surgery for the brain metastasis and everything went great. The pre-procedure scan did not show any new metastasis so at least that's good news. They also managed to perform the procedure on all 5 metastasis so that's also good. Yesterday they also performed a neurological examination and that also went great.
My brother just got a call where he received information that he has ALK mutation and he will start using Alecensa pills on Friday. On Friday he will also meet the doctor an receive all necessary information.
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