confused

[Jade1jack2]

hi everyone my name is glynis i was diagnosed with lung cancer at the end of january i dont have cancer in the lung i have it in the pleural linning of the lung saw the ongologist in feb was told i had 6 to 8 months without treatment ,ive had no treatment because of covid 19 there choice not mine i still feel quite fit and healthy im begining to have a few aches and pains more so where my biopsy was taken as its been since day 1 ,i sit and wait for things to begin drives me around the twist.I think it was unfair of the dr to give me a time scale i thought death was immenent after what i was told i have litteraly been waiting to die for months as my family have ,i know everyday is a blessing but it doesnt stop what goes on in your head had a scan 3 weeks ago i will see dr on friday to see how much it as spread i can cope with whatever is thrown at me we all die at some point but it breaks my heart seeing my children suffer.I have a autistic son who relies on me for everything not sure how he will cope my partner of 30 yrs as turnt to the bottle for comfort doesnt understand that its driving me insane,i just want my family to be settled and sorted b4 i leave.My head is mashed i was told id be dead by now ,i still feel ok only take paracetamol to relieve pain im not sure where im at or whats going on,feel like one day it will hit me and there will be no going back.I should be starting pallitive chemo soon things happen for a reason that should of started in march am i lucky or unlucky as anyone eles been in a simular situation.

[Charliek1]

So sorry sweetheart I’m in lreland and I’ve been having my treatment all trough the covid I would ring the hospital if I were you ask about other treatment I’m on a tablet called tarceva and doing very well.i m not sure if it’s an option for you but loads of people on here have had all sorts of different treatment and doing well. Ask your doctors about other treatments I’m sorry I can’t be of more help but please get back on to your doctors I don’t think it’s right just leaving you this long with no answers in my taughts and prayers xx

[5lupins]

I think you should ring round. You should have a cancer nurse you can talk to . Maybe speak to Roy castle help line nurses as well. Take care.

[Goingcuckoo]

Sorry to hear your story. I think it was heartless of your oncologist saying that and not starting treatment because of Covid. Definitely speak to your cancer nurse. She should have contacted you by now anyway. My husband was diagnosed with cancer in the pleura 18 months ago. No time line was given and we didn't ask for one. Saying that, for the first month or so, due to looking at Google, we were thinking in terms of months. My husband is due to start his 3rd type of treatment today. Wishing you all the best and that your treatment starts soon.

[Becky130777]

I am really sorry to hear this and what your going through. Do you have contact details of the consultant and doctor? I would call them back to get further advise and support, this is obviously effecting you and your family. Roy castle lung foundation are also a good source of support it may be worth calling them to have a chat with one of their nurses. I hope you get some support, as some of the other people have advised you should have a cancer nurse you can at least contact for support. X

[JanetteR57]

nobody can predict with accuracy how long a person has to live.... many like my niece die suddenly without warning (33) last summer from a bleed on her brain. my dad had bowel cancer twice in his late 50s and we were told he was unlikely to make 60, he was 90 in February and has had another bowel cancer in 2016. when I was told I had to lose half my lung in Dec 2010 and it turned out to be lung cancer, all the stats suggested the odds were very poor. since 2014 I've been involved in lung cancer research and met patients who survived way longer than suggested and there are many treatments that have been discovered and tried in combination with other treatments since then. your treatment doesn't sound good - you have the right to a second opinion. a friend I've made through research had malignant melanoma and that spread to her lungs and she was told she wouldn't make it, her son was doing his A levels at the time and it affected his results. 18 years on, she is still here and finds it hard to forgive herself for telling him..... another patient advocate I met was working overseas and told when he had a chest x-ray for his medical that he had lung cancer and should go home to die - that was 26 years ago. never give up..... your family should want you to live if not in pain so don't beat yourself up that they're waiting for you to die... that sounds absolutely awful to me..... contact the hospital as services have restarted and did so some time ago so you should not have been left in this position.....

[Jade1jack2 in reply to JanetteR57]

thank you for your reply i see the oncologist friday for the results of my scan wich i had 6 weeks ago everything seems to take so long my family and friends are so happy his predictions back in january havent happened yet as i am,i will wait and see what he has to say friday,my daughter did raise concerns with pals and they were really helpfulli just worry that the time scale could be shortening any time i have left.I was told at 1st app i wasnt able to have any off the other treatment avaliable i wouldnt benefit from it something to do with mutations i wasnt suitable even though he spent half an hr telling me all about them.thank you for all your replys gives me insparation hearing other peoples storys.

[JanetteR57 in reply to Jade1jack2]

At the time of my diagnosis the only mutation that had targeted treatments for it was EGFR and that was new and only available on clinical trials in Dec 2010. Many who've survived didn't have mutations with targeted therapies but that doesn't mean no treatment at all. Many people have chemotherapy, radiotherapy, surgery even if no targeted therapies and in the last few years immunotherapy has also been offered to some with a specific PDL1 reading but covid 19 has meant that it's been offered to many who usually would be ineligible for it in the UK. Covid 19 poses a serious risk for anyone with lung conditions so the recommended lung treatment pathway was modified in the UK at the start but has since been modified to include some procedures previously delayed including obtaining biopsies. at all times the results are slow even without a global pandemic but often this isn't explained at all to us and we imagine that our bodies are being ravaged every minute.... that's not the case usually.... so if you can spend your time making the most of whatever you have, it can be less exhausting than worrying over what might have been, or what might be and try and live more in the moment if you can... mindfulness techniques can help.... good luck with your appointment with your oncologist on Friday.... and always ask him any questions you have....

[KT22]

Hi Glynis,

So sorry to read your post, my husband was very badly let down by an uncaring oncologist & oncology department. How I wished I’d challenged him about other treatments or had a second opinion

I wish you good luck for Friday, please ask lots of questions & don’t be fobbed off like we were.

Xxx

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Glynis,

Is there someone who can go with you to the clinic on Friday?As others have mentioned write down any questions you may have beforehand. If you are unsure about anything discussed at the clinic you should be given the number of the lung cancer nurse specialist who can go over what is discussed. Hopefully she will be at the outpatient clinic on Friday.Please don't hesitate to contact the nurse led helpline 0800 358 7200(option2) if you would like to speak to one of the nurses after your appointment.

Kind regards,

All the support team at the Roy Castle Helpline.

[Nel107]

That’s most disappointing that you’ve had no support. I hope you get a good treatment plan in place.

Please let us know