Radiotherapy

[Raggety]

Hello,I'm a 51 yrs old woman that has just very recently been diagnosed with advanced lung cancer.

Just reaching out and trying to understand from others.

[sassassas]

Hi Raggety

Welcome to the forum. I'm sorry to hear of your diagnosis.

Many people here have also been diagnosed when their lung cancer is at an advanced stage and you'll find people will be very happy to share their experiences. There are lots of excellent treatments now and which you are offered will depend on the stage of your cancer and the exact type of lung cancer it is.

My husband was diagnosed with stage 4 NSCLC three years ago when he was 52. His cancer did not have any relevant genetic mutations so he was not able to have any of the targeted therapies but he was a good candidate for immunotherapy. He had chemo with the immuno initially and now just has the immunotherapy every 4 weeks. He has been "no evidence of disease" for the last 2 years and continues to live his life fully and well.

Have you got a treatment plan yet? I see you're having radiotherapy but wondered if you've been offered anything else?

Wishing you all the best, Sarah

[Raggety in reply to sassassas]

Hi Sarah,

Thank you for your reply. Yes I'm also going to be starting treatment for immunotherapy on the 14th March every 6 weeks if all goes to plan. I will end up having a stent being put in soon aswell as my tumour is resting on my main vain in the airways which is making me swell. Once I have that done I'm sure I will feel a lot better

[sassassas in reply to Raggety]

Hi there, yes, I'm sure the stent will help make you feel better and just knowing you have treatment plan and getting going on it will make a big difference.

In my husband's case, his 3 months of chemo were pretty brutal and came with a fair few unpleasant side effects, but we could see the effect it was having within a couple of weeks. His only symptom was a cough and we could tell it was becoming less severe. I hope this will also be your experience.

He doesn't have any particularly significant side effects from the immuno (he has a drug called atezo, but most people seem to get pembro) and I hope this is your experience too.

Thinking of you ❤️

[Raggety in reply to sassassas]

Thank you so much. That's has really helped x

[laranoreh in reply to sassassas]

It’s inspiring to hear about your husband’s journey with stage 4 NSCLC and his success with immunotherapy. Many people facing advanced lung cancer appreciate sharing experiences, as it provides hope and insights.

If you’re currently undergoing radiotherapy, it’s important to discuss with your healthcare team about potential additional treatments, like chemotherapy or immunotherapy, tailored to your specific situation. Staying informed can make a significant difference in your journey.

[Cockailschemocancer]

Hi Raggety - sorry you’re here. There’s lots of success stories now with the treatment of lung cancer. Head over to Roy Castle they have loads of inspirational stories of people you can read about. I too had chemo and immunotherapy 4 years ago and have been no evidence of active disease for 3 years. Mine was stage 4 and got to my brain too! I call the immunotherapy liquid gold. I had 8 rounds. Wishing you all the best. Kerrie

[Raggety in reply to Cockailschemocancer]

Hiya,

Thanks for your reply.

That's amazing, I must admit I'm looking forward to getting my treatment, Radiotherapy has knocked me about. That's a great saying liquid gold

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hello Raggety,

Welcome to the forum. So sorry to hear about your cancer, this will be a very difficult time for you, but support is available and it is good that you have reached out. I see you have already had some helpful responses.

All our information booklets can be found on this link: roycastle.org/help-and-supp...

These range from diagnosis, staging of lung cancer, treatments and living with lung cancer. This link takes you to the new diagnosis information P48 has suggestions on what to ask your medical team. ManagingYourLCDiagnosis_2019Booklet.indd (roycastle.org)

The booklet on immunotherapy can be found here: roycastle.org/app/uploads/2...

This link will take you to our INSPIRE magazine, the only lung cancer magazine available, where it provides updates, news articles and question and answer section: roycastle.org/help-and-supp...

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... Or by emailing [e-mail]

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

The Maggie’s centres are a great place to have a cuppa and a chat, they provide practical, financial and emotional support; maggies.org/

I hope some of this is helpful Raggety but if there is anything else you would like to discuss you can email ask the nurse at [e-mail] or why not call our free phone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600.

Good Luck with your treatment.

The Roy Castle Support Team

[Raggety in reply to RoyCastleHelpline]

Thank you x

[JanetteR57]

Welcome. I imagine that your mind and imagination are likely to be all over the place. Try not to google as so much information is outdated, inaccurate or from other countries.

There is good regularly updated information in plain English on Roy Castle lung cancer foundation website on all aspects from investigation, treatments, living with different symptoms, helplines, online support groups and much more besides.

As others have said, there are many different treatments for lung cancer even if advanced especially non small cell lung cancer. Even if patients aren't a candidate for targeted agents for specific mutations, there are still chemotherapy and radiotherapy - the latter having different purposes and ways of delivery. Immunotherapy is a relatively new treatment that has good effects for many but not everyone can tolerate it or is a candidate clinically for it.

The treatment landscape has changed beyond recognition in the last 10 years (I was diagnosed in January 2011) although public awareness and even some healthcare professionals' awareness hasn't kept up with what's now possible.

Here's a link to the radiotherapy booklet - they're available to download or have posted to you by the charity but it may help explain better what happens and how people deal with side effects. Good luck.

roycastle.org/app/uploads/2...

[olwman]

I had my upper left lobe taken out, but unfortunately the tumor was crimping a pulmonary artery so some cancer cells remained. Hence I had radiotherapy, Monday to Friday for 4 consecutive weeks. Must say it was quick to perform and totally painless. Hope this eases any worries you have

[Raggety in reply to olwman]

Hi Olwman,Thanks for getting back to me. I have a similar problem to you. I have superior vena cava which my tumour is also pressing on a main artery. I have had 5 sessions of radiotherapy and I'm awaiting immunotherapy next week. I will be needing a stent to open up my airways as I'm swelling that much inside. I really do hope your doing OK.

[ConnectRoyCastle Administrator Roy Castle]

Hey Raggety

Sorry to be a pest but we are starting an immunotherapy/chemotherapy online support group on the 3rd of June. It will be a weekly group and will run for 8 weeks on Monday evenings. Absolutely no pressure but if this is something that may interest you please get in touch.

Ellen (Roy Castle)