Other people’s experience of locally advanced lung cancer?

Hello Deli

i was diagnosed with very similar in May this year. I had a 7cm mass in my left lung and a nodule in the centre of my chest. Again it was inoperable . I was told it was due to the location , to near  major arteries and organs. I also have had the chemo/radiotherapy. I had 4weeks of radiotherapy 5days a week and chemo every week. So on one day each week I had both. I didn’t find the chemo to bad and the staff are excellent, you get plenty of medication to deal with the side effects. I finished my treatment at the end of August and I am doing fine at the moment. I  have no further treatment planned currently . I was told my tumours had shrunk a little and that it was controlled. For the moment I will just be having 6monthly scans. It is a shock when you first find ou and waiting for treatment to start is hard t but once you know when your Dads treatment starts it will be easier, it is not a death sentence. Treatments have come on in leaps and bounds in recent years . 
Good luck to you and your Dad

x

Hi Granny8 

thank you for responding to me. I am feeling so overwhelmed at the moment. I rang the specialist LCN this morning and left her a voicemail asking to ring me to discuss yesterdays apt as I was so upset I couldn’t take anything in and my dad just sort of nodded and I’m not sure how much he took in either. 
we have been advised by the respiratory dr that my dad will need to go for an MRI scan to show no spread to the brain- did this happen for you too?

when my dad had the pet scan it showed up some positive cells in his appendix which they have said that they will follow up with a CT scan- they don’t seem too worried about that at the moment?? The LCN just said that we need to tackle the lung cancer first. 

I can’t believe how many hurdles there are to get through on this journey. I am exhausted so far I don’t know how we are meant to get through it?? 

I am eager for us to see or speak with the oncologist. We will be seeing someone from western park which is the closest specialist hospital to where we live. 

I have read a few stories about chemo and radiotherapy combined to stabilise the disease and even shrink the tumour. I am sure there’s lots more out there I feel like hearing other people’s stories can be reassuring 

take care 

Adele xx

Hi Deli Yes I had the MRI scan on the brain.  I also had the guided lung biopsy, All the tests seem to come one after the other and it is a very scary time and the waiting is hard.  I found I felt much calmer once the treatment had started. Don’t forget to make a list of things to ask the oncologist. I also found the lung cancer nurses very helpful . 

Hi Granny8 

We have the MRI booked for Saturday afternoon and we have received the apt for the telephone call with the oncologist for the 2nd January. 

would you be able to advise me what kind of questions might be helpful to ask? 

I was wanting to ask ones about staging, prognosis etc but I’m not sure these will be particularly helpful. What do you think? Any thoughts or ideas would be appreciated. 

I wanted to ask clinically why they do not operate on locally advanced lung cancer but these I think are big questions which won’t necessarily change the outcome. I work as a mental health social worker and I am very pragmatic plus a chronic over thinker so I go into work mode xxxx

Hi, firstly, all people diagnosed with lung cancer have a CT\MRI brain as that is the route lung cancer cells travel to first. 

Regarding surgery, surgery is not usually performed if the tumour is close to major organs or the cancer has spread. If your father has had a CT guided lung biopsy the Oncologists will know what type the cancer is as there are two types; SCLC and NSCLC.  Surgery for SCLC is very rarely performed unless it is very early stage.

I think you need to list all the questions on paper, including what type of cancer it is, then you can ask the Oncologists.  With regards to prognosis, I think that is up to your father whether he wants to know or not, that's because a lot of people don't want to know and it is personal to them.

Best wishes to you and your father, and I hope all your questions will be answered.

DELI said:

We have the MRI booked for Saturday afternoon and we have received the apt for the telephone call with the oncologist for the 2nd January. 

How did the phone call with the oncologist go?

Hi Lolie 

thank you for checking in. Dad had MRI which hasn’t been formally reported on when we spoke with oncologist last Thursday but she did have a look at it and said she couldn’t see anything which was of a concern.  Oncologist is suggesting concurrent Chemoradiotherapy 12 weeks treatment altogether which will be cisplatin and vinoelbrine and then after 12 week plan, 1 year of Durvalumab immunotherapy as dads PLD1 was 100%
I am just struggling as it was 2/11/23 we found out about this and it’ll be almost 3 months from initial concern of cancer to starting treatment which feels like a very long time. I am worried about what’s happening to that cancer whilst we are waiting treatment to start. 

I have spoken with oncologist secretary just now who said it’s just a case of seeing when day unit can fit dad in for his chemo and then we have to go in to sign the consent form. It’s hard managing all of this anxiety 

best wishes

adele 

Hi Adele, so sorry you're going through this. My dad was diagnosed with localised S3 lung cancer just over a year ago. It's so scary and overwhelming, I know how you feel. There's so much new information and facts and words you don't know. I really reccommend phoning the macmillan nurses before appointments to ask what sort of thing to expect to be told, and what questions you should ask. This really helped me. Feel free to message me and happy to talk about my experiences. It's not a death sentence and the treatments are really advances nowadays. Bethany x

I had the exact same treatment as your dads going to receive, was diagnosed january 2021 finished treatment may 2022 cancer responded really well to treatment tumours shrunk considerably that I only go for a ct scan every 6 months, I was told from the beginning that the cancer is treatable but not curable its tough going but you get there 

Evelyn