My mum diagnosed yesterday

Hi Trian spotter, welcome to the online community, but sorry to hear about your mums diagnoses.  Lung cancer treatment has come such a long way in recent years, and there are new things being discovered all the time. There are lots of us who are living with lung cancer, and fall into the incurable but treatable bracket. Many of us are still able to continue to enjoy a good life. 

The early days with all of the tests and appointments are very stressful. The waiting seems endless.  Sometimes the biopsy can be the longest test result you have to wait for. Once they have this back they will hold what is called an MDT meeting, which involves a meeting of multiple medical professionals, including your mums oncologist. They will look at all of the test results, and decide which treatment is best for your mum. There are multiple treatments, and it doesn't mean that your mum wont be offered another treatment if the first one doesn't work, and it is good to have these other treatments as a back up. 

It is important that  you also look after yourself through this time. It is very scary when a family member receives a cancer diagnoses, and the fear of what is ahead, but talking to others who are in a similar situation to yourself does help you through this difficult time. There are 3 different support forums on the community you can join.

Family and friends 

Carers only

supporting someone with incurable cancer group

You will find several people there who are going through a similar situation to yourself.  You can also call the Macmillan support helpline for support 7 days a week from 8am til 8pm on 0808 808 00 00 

Let us know when your mum hears which treatment she will be on. There are many people here who will be able to share their treatment journey with you. 

Take care 

Hiya,

thank you so much for taking the time to read and reply to my post, it’s very comforting to hear that lots of people are living with lung cancer and still Enjoy life

i think like you say it’s waiting for the results of these biopsies, and your mind just goes a million times an hour thinking of every worse situation, 

I was very positive yesterday with my mum and said to her mum it’s not the worse outcome your consultant said it’s treatable and not terminal , 

 but then today I don’t feel so great  x 

and I just keep thinking my poor mum. 

I will look at the other forums and groups 

thank u for your time. Xx 

Hi Trainspotter,

I was diagnosed last June with NSCLC and they had hoped that with Chemo and radiotherapy they could shrink it enough to operate, but at the end of that treatment the lung tumor had shrunk but it had spread to my adrenal glands, I am now on immunotherapy every month for up to 2 years (literally just had my 3rd session this morning). I also had the addition of primary breast cancer which they found during the PET Scan and has since been dealt with.  I have found that since the pain in my arm has significantly reduced that I don't feel ill at all, I have been lucky with minimal side effects and just feel a little more tired and achy than normal - but i'll take that I wish the best for your mum and hope that you are ok too.  Someone is always here if you need to discuss and if I can help with any questions please feel free to ask, always willing to share my experiences.

Good luck

Karen

Hi Karen 

your so very kind in replying to my post,  it’s such a positive reply I’m greatful for your reply, when I spoke to Mac nurses yesterday on phone they said for some reason lung cancer always is attracted to the adreniaL gland, I’m so’ sorry it spread there on you, but if the immune therapy is working then that is amazing, 

I don’t kno much more about my mums lung cancer , other than they can not operate , but I have asked my mum to ask would they be able to operate in future ?, 

what was your treatments like did u have to go every day  to the hospital? Was it on a drip or tablet ? How do they do it ?  That’s if. You don’t mind me asking, 

(Im

Sorry u had breast cancer but so glad they sorted that for you) 

Thank u for your reply x

Hi Karen, I hope you don’t mind me asking you some questions too ? My mum has just been diagnosed with NSCLC too and awaiting further tests before treatment ( DNA for immunotherapy ) .. you mention arm pain . What was causing that ? My mums main symptom is horrific arm pain . They said they are not sure exactly why she is getting pain in the area she is having it since the cancer is a bit below the  area that was cause it . I’m hopeful with what you said that some treatment may help her . Thank you , 

Hi Train Spotter

So very sorry that you have  cause to be on here.  

It may not seem like it at the moment but the Consultant's words of "it is not terminal and very much treatable" is excellent news.  It sounds as though he is looking towards the cancer being curable (or as I prefer to call mine 'permanently stable').

When the biopsy results come back, you will know which  specific type of cancer your Mum has,  The on thing about this group is that between us all, we have experience of most, if not all, types of lung cancer. So please let us know the confirmed type, and In am sure experiences and advice will be forthcoming.

Stay strong and stay positive. Remember that  there have been massive developments in the treatment options for lung cancer.

Kegsy x

Hi kegsy,

thank you so much for such a positive reply, you have made my morning,  what worries me is all the grades and stages and if it’s in my mums top left lung and has gone to her adrenal gland im worried about all the stages and grading , x but like you say see what the biopsies results are, and then can go forward. X

x

thank u x

Hi Trainspotter,

Not sure yet if the immunotherapy is working, due a scan about June/July so will know for definite then.  I had to go to the hospital every working day for 6.5 weeks for the radiotherapy (which took about 5 mins) and once a month was there pretty much all day when I had the chemo.  Chemo was on a drip as is immunotherapy, my chemo took just over 5 hours and immunotherapy just over 30 mins. All in all I feel quite positive about it all, as I feel better and I'm quite stubborn in that I won't give up :) But as I said I have been lucky and feel better than I did this time last year.

Hi Fi 21,

My pain was caused by the tumor being at the top of my left lung behind the clavicle among all the nerves and blood vessels.  Initially I thought it was RSI as it started 2 weeks into working from home on the first lockdown. But most of the pain I first had was down the arm, espeicially around the elbow and caused pins and needles/numbness in my hand.  The pain moved around a bit, so had it in shoulder, in my back, across my chest at different times.  At the moment I have twinges (not outright constant pain) in my back just below the shoulder blade. I still have the numbness etc in my hand - I've not asked much about it but I think I may be stuck with it.  The treatment has definitely reduced the pain for me so hopefully this will be the same for your Mum.  I understand how horrible the pain in the arm is, as I had trouble doing anything either physically or mentally due to the pain.  But fingers crossed.

I'm here if you have any other questions.

Karen

Hi

Don't worry about grades and stages as there is nothing  yu can do to change them: leave that up to the professionals. Focus on the forthcoming treatment plan and how best you can support your Mum through it.

Kegsy x