Positive Progress: So I've just had my... - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation

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Positive Progress

Ian_cee profile image

So I've just had my 1st Cancerversary, in that I was diagnosed with stage 3b lung cancer on the 12th May last year, I thought i'd share a couple of things i've learnt for the benefit of someone who may be in the same position I was a year ago.

Point 1: If you have surgery don't assume you'll be out running a marathon after a couple of months, At the time of my surgery in June I was pretty fit (I used to run 10k every day of the week) but I don't think I was as healed up as i'll ever be until January. Be patient.

Point 2: My experience of radiotherapy and chemotherapy wasn't that bad, My view is that if you are fit and healthy going in, you'll probably be ok.

Point 3: Look into an integrated therapy approach. Your oncologist will tell you its a waste of time, but its your body, your disease so make you own mind up. A good starting point is the Jane McClelland book "How to starve Cancer", it might be total rubbish but at the very least I wanted to be lying on my death bed knowing that I gave everything a shot. This isn't an advert for the book or the Care Oncology Clinic, but certainly look into it to decide if its for you or not.

Point 4: Don't assume you are stuck with the Oncologist that the NHS assign you, (you may be when you are undergoing treatment, but after that you can shop around). Ask your oncologist what their specialism is (mine was breast cancer, which wasn't much help) and go to your GP and say "if you were diagnosed with Lung cancer, who would you go and see", It's very easy to get the details of an oncologist you've heard good things about, call their secretary and ask if you can be added to their list.

Point 5: Make sure your Oncologist has run the tests to see if immunotherapy will work AND more importantly the tests to see if there are any mutations that targeted therapy with work on. My first oncologist didn't bother with the latter, (at the shock of my second oncologist) and I'm lucky in that there is a mutation so I have targeted therapy in my back pocket should it reoccur.

Point 6: Try not to focus on stats, (easier said than done), they are by definition 5 years out of date, and you've no idea the dataset used, each cancer is different, you can be lucky or unlucky. A better idea is to google "improvements in lung cancer statistics" and you get a load of articles about how doctors are getting better year on year at treating this stuff.

Point 7: Build your network either on this site, instagram, twitter or whereever. Find people who are going through the same thing as you and chat to them, share info, ask them how they are getting on etc etc.

So There's my pearls of wisdom, my hope is i'll look back on my cancer journey as just something that dominated my life for a while when I was in my late forties and will make me more grateful of the years to come.

Cheers

Ian

16 Replies

Excellent post. Thanks Ian.

Brilliant … good luck with your journey xx

Hi IanThank you so much for sharing your reflective points and congratulations! Well done. Food for thought so to speak. Best of luck to you

Best of luck Jan thanks for the lovely advice.

Hi i was diagnosed 5 years ago. decided against surgery as had 2 broken feet and severly broken arm which required a lot of surgery, my body was weak, so to the surgeons anyoyance , i felt i couldnt cope with any more. i asked for other possible treatments. I went for targets stereostatic radiotherapy. 16th person in my area to be given it. I still have to endure the dyes and scans, veins have totally collapsed, but im still here, and kicking, and enjoying every day im alive. I agree do your research, ask questions, its your body to make the the right choice. Take care stay well. be happy.

Wow amazing. When were yo 1st diagnosed? Here is to more anniversaries xx

I was diagnosed in december 2015 . I first had cancer in 1984. and that was extensive surgery of the stomach, but i got through that, so it was a great shock at 65 to find i had it again, but so far ,so good, keep positive keep fighting, and never give in, your brain is your best ally, all the best in the journey keep well, live life the best you can.

Than you, will try and stay as positive as I can, am really trying, but is hard at times

Thanks for posting your pragmatic approach and response to treatment - here's to many more cancerversaries for you. Patience is something we'd all do well to develop - we need it in spades! I had surgery and like you was fit beforehand from swimming rather than running but went onto swim much further than I ever had before by building it up slowly and steadily increasing... I agree about being your own advocate and looking at your life holistically irrespective of cancer diagnosis/treatment. For me the books that helped me were 'anti-cancer a new way of life' by Dr Servan Schreiber and 'cancer is a word not a sentence' by Dr Rob Buckman - the latter stating your adage about integrated approaches - if they make you feel better and more empowered, then adopt new approaches alongside your treatments (rather than instead of!) I went onto become involved with lung cancer research and it's such an ever moving feast of treatments and combinations that most not involved with lung cancer struggle to keep up and totally agree with your comments about googling statistics - most are wildly out of date and inaccurate... so I'd add find a trusted source of verified and evidenced information (often the lung cancer charities) and keep your mind open as well as keeping as active as possible for as long as possible.... having had my 10 year cancerversary from my stage 2b (7cm) cancer in January.... good luck with your continued recovery

Your contributions are interesting. Thank you for taking the time.

RoyCastleHelpline profile image
RoyCastleHelplineAdministrator

Hi Ian,Thank you for sharing your experience and your journey so far. There are some inspirational patient stories on our website which you and members of the forum may be interested to read. roycastle.org/category/pati...

All the best from the Roy Castle helpline support team.

Hi Ian,

Wonderful post. My dads currently recovering from treatment. Like you he’s at stage 3B but was not offered surgery. Instead did chemoradiotherapy concurrently. Wish you all the best.

Annie

Positive thinking goes a long way good luck on your journey. Health and happiness x

Thanks for sharing Ian.

Thanks for sharing, it makes me feel better, I’m frightened and scared.,

Hi I’ve just been diagnosed with G3,2 and active nodes and I’m determined to beat the bugger again!! This is really positive feedback thanks for this, I aim to be proactive xx

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