Radiotherapy for lung cancer

[Lizzielock]

After an oncologist appointment I was left deflated. I did know the risk of extra damage to the lung and possibly needing oxygen. She was talking like she didn't want me to try. At the moment they said I have 18 months to 2 years left and the Radiotherapy would give me an extra year . All of this is approximate I suppose but please anyone who has had this please please tell me your experience good or bad, many thanks for reading

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hi Lizzielock

Sorry to hear you have been left feeling quite down after your appointment. Sometimes when the oncologist provides a full disclosure or any side effects of treatment, it can certainly impact the person and understandably cause anxiety. The oncologist will only offer treatment in the hope that it will provide the best outcome for you.

Accepting treatment can be a very personal decision, to perhaps consider what is most important for you, your current quality of life or the chance that you could have an extension to life; there may be changes in your health but equally they may settle down or be quite manageable, any side effects.

Everyone has a different experience of radiotherapy; it can depend on the location in the lungs that they are treating, your current health and symptoms at the start or treatment and if you have any other existing lung condition.

It may help to be well informed of what is involved and our booklet on radiotherapy may assist you with this: roycastle.org/app/uploads/2...

We offer support through our online support groups via zoom and you can view these and register through this link: roycastle.org/help-and-supp...

Hope you hear from others of their experience on the forum and if you would like to chat you are welcome to either email ask the nurse at [e-mail] or call our free phone nurse led helpline on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600

Kind regards

The Roy Castle Support Team

[Lizzielock in reply to RoyCastleHelpline]

Many thanks for replying. I did just want other people's experience good or bad. My cancer has returned to the upper right lung . Appreciate your reply, thanks again

[58trinity in reply to Lizzielock]

keep your spirits up Lizielock, i was told that my stage 4 lung cancer could give me as little as 6 months to go, i'm still here 18 months later thanks to Mount Vernon cancer unit and their radiotherapy treatment, it shrunk my tumour enough for me to breath easier, i am now on immunotherapy for both lung cancer and terminal metastatic liver and bone cancer for a max of two years (halfway through) Radiotherapy was a breeze for me as i could not have (and didn't want) chemotherapy due to failing kidney. I feel very positive at the moment because apart from a new as yet undiagnosed mass in lung cavity the rest of the nasty bits have stayed the same size. I wish you well and wish you a long life.

[Babydolltina]

Hi Lizzielock, sorry to hear about your cancer. My late wife had SCLC, and had Radiotherapy after her Chemotherapy ended. She had 28 sessions to her lung and 8 to her head. Her oesophagus was cooked resulting in it splitting and needing Glueing. Her tumor was blown to bits resulting in it attaching to different parts and organs in her body. Please think long and hard about your treatment plan and ask more questions if you need to. Ask for a second opinion and also a third.

God Bless you and stay safe. Sorry for the negativity I have shared.

[Lizzielock in reply to Babydolltina]

So sorry for what your wife went through and also what it put you through. Don't apologise, I wanted to know positive and negative experiences. Best wishes and many thanks x

[Elt79]

Hi - I was diagnosed stage 4 NSCLC with brain and adrenal mets - I’d akready had 2 lobes and 2 ribs removed in 2008 (another story as I didn’t have cancer - no biopsy done!). However this left me compromised when I was then correctly diagnosed in 2018. So had immunotherapy from November 2018 and was offered ablative radiotherapy in November 2019 as the tumour in my lung had shrunk. Have to say I was not really told anything negative about long term effects i.e. oxygen - I had the usual side effects tiredness well exhausted to be honest but then carried on with a further year of immunotherapy which ended in Nov 2020. The radiotherapy has left scarring in lung, which is only one lobe, however, to date, I have never needed oxygen. I have COPD but managed with preventative inhaler and salbutamol wgphen needed. I had SRS for brain mets twice and likely may need again but have been NED since 2021 with no treatment other than for brain in 2021, I have been very fortunate that I can manage immunotherapy side effects which continue 3 years on but 8 have survived 5+ years from what was a very poor prognosis. I just wanted to post something positive for you - the possibilities of damage are always there but we are individuals who will react differently to treatment but worst case scenario is not inevitable- wishing you the best of luck x

[Lizzielock in reply to Elt79]

Oh gosh you have suffered. My worries seem nothing. Be proud of how positive you are and many thanks for your message x

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hello Lizzielock,

As we previously posted everyone will have a different experience of radiotherapy, for most people side effects are moderate, the team will normally make you aware of any potential severe side effects which they think may be a possibility. We have many patients who have gone through radiotherapy on its own or combined with chemo/immunotherapy and who have had a positive outcome, I have added a link to patient stories page, where patients talk through first hand their treatment journey which often includes radiotherapy, some talk of the side effects that they have experienced both good and bad, this will give you an idea of what to expect from treatment

roycastle.org/category/pati...

You are welcome to contact us to discuss anything , 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

Kind regards

The Roy Castle Support Team

[mikee2all]

Hi Lizzielock......have you been on any medicine such as Tagisso? Has anybody else that has answered you?

[Lizzielock in reply to mikee2all]

No nothing else just to start radiotherapy. Never had any anything after my op for 1st lung cancer x

[mikee2all in reply to mikee2all]

Depending on what type of lung cancer you have, Tagrisso is a medicine that pinpoints the cancer cells. Google it and read all about it. But Tagrisso is extremely expensive. Close to $10,000 for a box of 30. But, what is your life worth.

[JanetteR57 in reply to mikee2all]

In the UK we don't pay for cancer treatment in the national health service so many patients are unaware of the cost of treatment.

[mikee2all in reply to JanetteR57]

It's same here in Costa Rica but they will spare no expense. I'm taking Tagrisso and they're paying for it.

[Alisondee]

I got good shrinkage with radiotherapy and now all seems stable.

[Lizzielock in reply to Alisondee]

That's amazing I am do pleased for you but my consultant has convinced me I'm going to need oxygen after . I know the chances but came across very negative. I am so pleased for you x

[Lizzielock in reply to Alisondee]

Excellent news so pleased for you x

[Alisondee]

I think they do give you the worst case scenario, I hope you get some good treatment and I’ll be thinking of you x

[Lizzielock in reply to Alisondee]

Thankyou Alison x

[Lizzielock]

Wow what an inspiration you are. I am so pleased for you. You have gave me the kick I needed I think. I was OK until my last oncologist appointment with a doctor I hadn't seen before. She even said to my daughter when we was leaving (not in my earshot) " good luck ,, you are going to need it". You can imagine, she was sobbing mainly in temper leaving the hospital. Thankyou so much for your reply and many best wishes x

[PMint]

Dear Lizzie so sorry to hear that the oncologist’s words have upset you - sometimes they aren’t as supportive as they could be. I have recently had treatment for secondary cancer in lung. Chemo and more recently SABR which is a very targeted radiotherapy. The radiotherapy left me very fatigued but partly because I had Covid before it and another virus at the end! Amazingly I am starting to return to normal now after just 4 weeks but still need to rest in between activities. I will have a PET scan to see if it has worked in couple of months. How can I support you best? Read Radical Remission by Dr Kelly Turner - an optimistic and inspiring book about people whose diagnosis/prognosis wasn’t good but who recovered. Research nutrition and supplements that can support your body through and in recovery from treatment. Find ways to calm your body. I listen to meditations on a free app called Insight Timer every day. Get outside in a green space as much as you can and breathe fresh air ( there are good things in plants which support our immune systems)

Wishing you lots of luck and love xxx

[Lizzielock in reply to PMint]

An amazing message thankyou. I will look at what you have mentioned. So hoping that your pet scan goes well . Much love and best wishes to you ❤️ x

[Leniko]

nobody knows how long Anyone will be here. Treatment is a personal decision. Will you still have quality of life etc.? I would go for it, but that’s me. Saying prayers for you. ❤️🙏

[Lizzielock in reply to Leniko]

You ate right we don't. Actually dieing is not my fear it is how that is my fear. Yes I am almost certain that I am going to go for it. Many thanks for your message x

[deni-123red_]

hi I’m sorry to hear of your experience with the oncologist. I had the choice of surgery or radiotherapy. I chose the latter and had 7 sessions of SABR a targeted therapy and 15 sessions of radical radiotherapy. I was diagnosed with SCLC and I’ve had 2 scans since finishing my treatment. They showed a shrinking of the lesions so I was very relieved it had worked. I wish you the best of luck with whatever decision you make. My only side effects were exhaustion which soon passed. So my experience was positive. I hope this helps you.

[Lizzielock in reply to deni-123red_]

So pleased you had a positive result. Many thanks for your message and lots of best wishes x