Hi all,
Well 19 months since I had my right lung removed and we are off again 😔 a 25m area on the lining where my right lung was has lit up 😔 a biopsy is not possible so they are just going to go ahead and treat it with 5 rounds og radiotherapy (sabo) has anyone had any experience with this? Trying so hard to be positive.
Dear Eglingham
Sorry to hear of your news which must be so very disappointing for you.
SABR -Stereotactic ablative radiotherapy is where they use high energy x-ray beams to destroy and prevent spread of cancer cells, only certain hospitals have the machines that use this treatment.
This link is from Macmillan support and details what to expect with this treatment: macmillan.org.uk/cancer-inf...
We also have some information on SABR in our Radiotherapy booklet: roycastle.org/app/uploads/2...
Hope your treatment goes well and you hear from others on the forum who have experienced this.
If you would like to discuss anything you can either email us at lungcancerhelp@roycastle.org or call our free phone nurse led helpline number on 0800 3587200 Monday to Thursday 0900-1700 and Friday 0900-1600
Kind regards
The Roy Castle Support Team
Thank you for your reply. I will read through the info you have provided. Thank you.
I am not quite in the same postion as you but one thing we do have in common is that I had my original biosy in 2015 had more treatment in 2017,2019 I completed a two year round of immmunotherapy December 2020 and responded quite well .I have only just had my second biopsy in 2021 via a bronchoscopy as they felt it had by this time mutated into something different .I am now awaiting results to see if I can have target therapy .I am hopeful .Perhaps you don't require new biospsies just yet .Hope it all goes well for you Diane .👍
Hi Diane,Thank you for your reply. Your story gives me hope as I am struggling to stay positive at the minute and the oncologist I went to see did not leave me feeling positive at all I have to say. I biopsy is not possible due to it being to small, I didn't even show up on a ct scan, it's right on the surgery area from my lung removal. I hope all goes well for you, sending positive thoughts and 🙏. Thank you again ♥
I am now in a similiar postion and wondering how you made out. I was reading yours and hoping it was just scar tissue that was causing the pet to light up. thinking of you
Hi, after the radiotherapy I had to wait 3 months before having another scan and unfortunately another 2 areas lit up, I have been undergoing chemo and immunotherapy for the last 15 months and this shrunk them initially and is now keeping them stable. I am still working full time and getting on with life now living with the disease.
I am so sorry to hear this and know how hard this might be for you. I hope you are tolerating the treatment and have figured out how to get on with living. For me this is the hardest part - 5 1/2 years ago had R LL lobectomy and R UL wedge (50 year old non smoker). Last November thickening on the suture line near upper lobe surgery. Had PET in May and he wasn't convinced it was a recurrence since only very faint. Had a broch and only a few "atypical cells" but still nothing definitive. Put me on antibotics and went back in September for repeat PET - lit up again ( had covid in July). Have been a mess worrying it was back after all those years. He didn't want to repeat bronch and knew I wasn't going to be able to "watch and wait". Having surgery Wed and 4 options on the table - goes in and it is nothing, another wedge, takes remaining upper lobe and leaves me with just R middle (he said not common to do) or worst case take the enire R lung. I have had a really hard month and some days scared me with what I might do if get more bad news. Praying for you that you have many more stable days.....
Managing to tolerate the treatment thank you. Completed 26 mile mighty hike in July so just shows life can go on. I opted to go back under and have the rest of my lung taken, the recovery was a little slower but was back to work 2months later and walking 3-5 miles a day. I know it sounds scary but stay positive you have done this before and you can do it again, stay fit eat well and be kind to yourself. Here if you have any questions or just need a chat.
surgey done. Took out 1/2 remaining right upper lobe. No evidence of carcinoma - will send out but great news so far!
My mum is newly Diagnosed
Treatment withdrawn, do we have any more options? 
New on here
Life goes on around us while we go through hell. How can we make it bearable? 
Lorlatinib 
