NSCLC - how did you get there?

Hello, I have been recently diagnosed with stage 3 NSCLC in my left lung and lymph nodes. I am definitely up for a fight, and (rightly or wrongly) can see a life post-cancer in my mind. But the thing is - I have nothing to compare to, and just don't know what to expect. I'm initially baffled by my diagnosis, I'm 'young' at 51, have never smoked and have spent an active outdoors life, cycling 1000's of miles a year. I'm not angry (yet) and fully accept the random nature of the disease. With the distinct possibility of surgery and any damage to my lungs, I don't know what life is going to be like after. I know we are individuals, and everyone's story is different - but is there anyone out there that has returned to a physically active life (diminished or otherwise) ? Clearly treatment is the first priority, but it would help me to understand what may happen later on. Thank You.

[GainesH]

I'm so sorry to hear you have NSCLC. I'm Teddys wife Lisa. On April 23, 2016 Teddy started out with NSCLC left lung with top left lung collasped & Lympnodes, Stage III A. He did 36 Treatments of Radation and Chemo. It didn't even phase his cancer. Petscan showed it spread to his liver & right rib bones. After waiting on insurance to approve clinical trials or immunotherapy they did a brain scan. It was in his right frontal lobe of brain. Cancelled him out of clinal trials so they put him on Opdivo. They did an SRS on his brain. After 3rd Opdivo Treatment they did Catscan and it spread to right kidney & spleen. They said his cancer was negative to everything so they put him on Hospice. He died 2 wks ltr. December 7, 2016 I lost my sweet husband to this horrible disease. God bless you & prayers for you. I pray you have better luck. Stay strong & positive.

[Jkrico1]

Hi there. I was diagnosed with stage 4 NSCLC just over a year ago. I was pretty active too, cycling, hiking etc. I've had radiation and chemotherapy. I've kept up with walking through most of my treatment, I do a couple km a day usually and have recently started swimming weekly. It's slow for sure but just do as you're able and rest when you need to.

Keep fighting and all the best to you!

[Bow-19]

I can't say that I cycled miles before my diagnosis but I was 49, had smoked 10 cigarettes in my life, ate a healthy diet and didn't drink much alcohol if any. I was diagnosed 3 years ago and have an ALK mutation. This was found after a biopsy. It seems that people who are younger and non smokers are more likely to have a mutation. Just wondered if they have checked you for this, as it may affect the course of your treatment? Wishing you all the best Xx

[Neil-SueD]

How cancer strikes is indeed baffling. In Spring 2014, I was in a similar position with NSCLC. I was 59 at the time. I had the upper left lobe removed by VATS procedure at Papworth on Friday 13th (!) June and was back home on the Sunday! I got over the surgery very quickly and had no obvious chest problems thereafter, although I've never been an athlete, so nothing to be lost there. Fingers crossed you will feel much the same as before too. My cancer was not in my lymph nodes and I was pronounced clear of cancer with no further treatment needed although chemo was perhaps suggested: I forget what was said now as it was a very stressful time and I was like a rabbit in headlights. Two years later, the cancer slowly reappeared across my lungs and was told it would be terminal. I declined the "palliative chemo" offered as it was no cure and had its own problems I preferred to avoid under the circumstances. However, I'm on Gefitinib now which is buying me time, but my word, I'm a happy chappy to have enjoyed the time I've had. So maybe chemo after surgery will be the way for you. All cases and individuals are different. You sound strong and just right for surgery. I was never angry, just disappointed, especially for my loved ones who have supported me so well and will have to carry on after me, but we have the time to try and come to terms with it all unlike those taken in fatal accidents, etc. I still feel remarkably well and really value life in a quiet way, looking back with pleasure; finding and having found joy in what I have and have done and not misery in what I will not have or do. Maybe that's just me. The very best of luck to you. All is not lost by any means.

Neil D.

[pollyalison]

Hi,

I am quite active and have stage 4 nsclc being treated with gifitinib targeted therapy. Before, I went to the gym and although I do not go into the gym any more, I still do aquafit three times a week and walk the dog and hope to build up to going back into the gym. It all depends on your treatment really as some treatments are more debilitating than others. As Bow19 said, if you are successfully tested for a mutation and can have targeted therapy then you remain more active as although it can make you very tired other side effects are bearable. I am not suitable for surgery as my condition is terminal but some in my support group have had surgery and said that although it is debilitating at first, recovery does happen and a fulfilling life achieved after. Hope all goes well, keep up the positivity, that is the most important thing.

Alison x

[Shan_E]

Hi, I had surgery six months ago and had part of my lung and lymph nodes etc removed. I've been lucky and haven't needed other treatment (so far), but as far as surgery is concerned, I was really afraid that I might not recover full fitness afterwards but I'm happy to say I'm now as fit as I ever was and my lung capacity is actually better than it was before surgery - I suppose that's because of the breathing exercises, which I did religiously. I kept fit by daily (uphill!) walking before and after surgery and I did all the exercises they recommended and I think this really helped. I know everyone's experience is different, but it's certainly possible to have the surgery and be as active afterwards as you were before. Also, I found being actively involved in my own care really helped me to keep positive and make the most of every day. Your cycling and active outdoor life will certainly help you to make the best possible recovery if you're offered surgery. I wish you the very best of luck.

[Hidden in reply to Shan_E]

Hi Shan_E, really appreciate the positive response-just the kind of thing I've been wanting to hear. What you're saying fits closely to my own view. Being active has always defined who I am, and I hold a small fear that I will lose some of that-but I can adapt if necessary. Good news for you if you've improved your lung capacity and are as fit as ever. I'm guessing you don't live in Norfolk, there aren't many hills to walk up in that part of the world All the best, and keep at it. Jonathan.

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hello-Man-in-a-shed

Welcome to our forum, I am very sorry to hear of your diagnosis, this will be a difficult time for you and as you can see from the previous replies everyone's story is very different. It is good to hear that you have such a positive attitude and intend to keep as active as possible. If you would like to speak with someone or require any further information we have nurse led helpline freephone 0800 358 7200

Kind regards the Roy Castle Helpline

[Hidden]

A big thank you to all that have replied and I gratefully take up all your wishes and advice - and would like to offer the same in return, and wish you the very best that you all clearly deserve. I'm heartened to hear your stories of getting back to an active life, and look forward to wobbling off down that road once again.