I was diagnosed with nscl cancer in January 2017. I tested EGFR positive and started on Tarceva, which worked for almost 6 years. Late 2022 my scan showed progression.
I have had 4 liquid biopsies to look for a new mutation, all have come back negative. I am now waiting for radiotherapy, I am feeling very low frightened and keep bursting into tears. Though all my treatment I have always been positive. I am in pain now and on oral morphine, which is helping a bit. I’m trying to stay plosive but it is very hard. I don’t know what to expect from the radiotherapy and that is scaring me. Can anyone tell me what to expect from radiotherapy. The waiting for results to come back and waiting for treatment is awful.
Hi Sue
So sorry that you are having to face this after 6 years. Yes, the waiting is always the worst aspect.
Please do not think that radiotherapy is in some way a second rate treatment. Radiotherapy is a very effective cancer treatment in its own right.
The positive effects of radiotherapy are cumulative, so as the sessions progress, so does the impact on the cancer. The down side is that the side effects are also cumulative, with tiredness being the main one.. You will not feel the radiotherapy being applied; all you will need to do is lie very still on the radiotherapy table..
i hope this helps a bit.
Kegsy x
I will pray that you have same results as me I only had radiotherapy because of other health issues.. it was a straight forward no pain treatment..I got a cough after treatment but a dose of steroids sorted that..fingers crossed I have positive response after see oncologist on 27th of this month. Lwill keep everything crossed, it was so nothing to be feared..xx. Good luck stay strong..
Hi Maggie just Maggie
Fingers crossed for a positive result on the 27th. I’m trying to stay strong.
The people on here going through the same as you helps a lot
Sue x
It's so true.you go through the same as all the other peeps, you cry with them,you overjoyed when treatment positive..and absolutely devastated when 8t isn't.. we become human with this disease for sure..suddenly other things important..each other..xx
Hi Sue 822 I had radiotherapy, and like Kegsy and Maggie just Maggie I had very good results. It is understandable that you are anxious, and tearful at the moment. Starting any treatment is scary, but being in pain will be adding to your anxiety.
Having the radiotherapy treatment is very much like having an x-ray. You lay on a table, and the machine moves around you. You do not feel anything, so please do not worry about that. You will get side effects, but like all treatments this varies with people. Tiredness seems to be the main side effect, and your skin will become rec and sore like sunburn. My tumour was blocking my bronchial airway, so breathing was very difficult. Within days of starting radiotherapy I could breath again, it was a miracle treatment for me.
Do please come here and chat with us as much as you need, but if you feel that you need to talk to someone please do call the Macmillan support line on 0808 808 00 00. They are available 7 days a week from 8am until 8pm.
Hi Chellesimo
Thanks for replying, it really helps talking to people on here who have been through the treatment I am waiting for. The pain and not doing anything is getting me down, although the morphine does help, it does make me tired. Hopefully won’t be too long before I start treatment
Sue x
Hi Sue,
Radiotherapy can be brilliant at helping with pain
When you think about it, it's a form of targeted therapy in itself!
I had horrendous pain at the beginning and was on all sorts of heavy duty painkillers for months. As soon as I started Radiotherapy the pain melted away. I don't even take Paracetamol at the moment.
People, myself included, see Radiotherapy as 'lesser' for some reason. I don't think it is.
I'm no Oncologist but I'm convinced that Radiotherapy has helped me far more than chemotherapy.
If only they woyld operate on Stage 4 lung cancer (especially after reading today's news on the BBC online health - how the most aggressive calls are in found main tumour) I reckon that with regular gentle doses of chemo, plus Radiotherapy, plus debulking my main tumour) most stage 4 lung cancer patients would last a LOT longer than they do at the.moment.
Oh, and Radiotherapy isnr painful and doesnt last.last long.
Having lung cancer is very lonely. There doesn't seem go be the same care and compassion shown to other cancers. Expecially by major organisations znd people in general.
Something came up on my newsfeed a few minutes ago about Dame Deborah James (fantastic lady). It was very interesting and at the end it said 'if you have been affected, click here'
Which I did. Guess dhat? There were support groups for loads of different cancers, but bo support for lung cancer.
Yep
Lung cancers a lonely place to be If it weren't for my Oncologist, rhe lung cancer nurses, and macmillan, it would be even lonelier.
It's OK to feel sad sometimes. Xxxxx
Hi Harebelle
i suppose when you think about it radiotherapy is a kind of targeted therapy. Coming on here and reading everyone’s replies has really helped me, in fact I feel fine about starting it now. A big thank you to everyone who has helped me
Take care
Sue x
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