How long are we expected to wait

I got diagnosed 6th April this year and start my treatment Monday

It does seem like forever

mine is in my lung and non operable, it’s also in my lymph nodes I’ve had it 4 years already I found out, but the hospital missed it back then, It’s a big roller coaster but you just have to ride it

Just stay strong, hope it all goes well for your mum

Hi Shazzer, thanks so much for your reply I really appreciate it. 

A rollercoaster is right. Hard to stay positive all the time when we seem to be getting nowhere. Hopefully not much longer.

I‘m so sorry the hospital missed your diagnosis, that must be so frustrating. But I’m sending you all the positivity and strength for your treatment! xxx 

Hi Gracie90  welcome to the group but sorry to hear about your mum. That must be so frustrating to know your mum has to have a second biopsy. I have heard of this happening to other members, so frustrating that it lengthens the wait to treatment.

There are NICE guidelines which the NHS have to follow. Every new “suspected” cancer patient is put on a pathway where there are targets of 62 days wait between the date cancer is suspected and referral sent, and the start of treatment.  There is also no more than 31 days from when treatment is discussed and treatment starting. 

It sounds like mum would have been within that timescale if it hadn’t of been for the 2nd biopsy, but I am sure they will get her a treatment plan as soon as possible. It is unfortunate about the biopsy, but that is so important to get mum on the right treatment, as all cancers react differently to different treatments. The waiting is definitely the worst bit. X 

Hi Chelle, I really appreciate your insight. This is all so new to us and I expected (and hoped) things would move quicker, but it’s good to know this isn’t unheard of. This group has brought me a lot of reassurance the last few weeks so thank you! xx

Hi Gracie

I have just come back online after a being off for a year. I'm very sorry to hear you have had such a long wait and hopefully things will fall into place for you and your mum. It's not nice being told you have cancer wether it's you or a loved one because we all fear the worse.

I have Nsclc and Sclc and I couldn't have any operation to remove the mass from my lung either due to having both. I was diagnosed in 2020 and the time for my cancer is 2 to 5 years but I'm still here and refuse to go anywhere as I have to much living to do .  I don't say I'm in denial but I don't think about it, I have it and can't do much about it except listen to the expert's. I had 20 doses of very high radiation at the very beginning and have CT scans every 3 months, my last one was 7 weeks ago and I'm still waiting for the results of that.

I hope you and your mum have now had a treatment plan and can see where you a going from here. I will keep you and your mum in my prayers, all the best

Love Jean xx

Hi Jean. Thank you for your reply! Unfortunately we are still waiting as she went for another biopsy and they couldn’t do it due to a chest infection. So she’s booked to have another one next week, third time lucky hopefully! 12 weeks since diagnosis and still no plan, I just never imagined it. 

I’m really sorry about your diagnosis, but your positive attitude is inspiring! These are the kind of stories that have got us through the last 12 weeks, so thank you. Sending prayers for your latest results I’m sure they will be positive and you can continue living your best life! xxx

Hi Gracie

Never say never I know it's easier said than done, keep on going with life and look forward to new things you can do to put in your memory box. Could you let me know how mum goes on I'm sure she will get there next week, keeping all fingers and toes crossed for all the family especially your mum.

Love Jean x

Hi Gracie I too had to have a second biopsy but the results of this meant I could have targeted therapy which meant chemo tablet each day . Avoiding the chemo that killed all cells They found I had a specific gene they could target. Not everyone is suitable so maybe they do not want to get your hope up to be dashed . 17 months later and my lung xancer and metsis stable. I have seven months left on the treatment providing it continues to work. I have spinal mets which I have received radiotherapy for. 

Hi Tina thanks for your reply! I understand they need all the info before they come up with a plan. I just never expected to still be waiting on answers 12 weeks later. Your story seems positive though so thank you for sharing! I hope we have a similar outcome. Sending you loads of positive thoughts and prayers that your treatment continues to work! xxx

Hi, I’m still waiting for my treatment plan almost 8 weeks down the line. I also needed a second biopsy which really delayed things. This was so they could work out which treatment to give me which apparently can take a couple of week as they have to do a lot of tests and they didn’t get a large enough sample the first time. The waiting is the worst thing ever. Each day seems like a week. They said a few weeks won’t make any difference to the cancer but that’s easy for them to say I suppose. Try to keep positive and keep ringing the lung nurse and asking for the results, I do all the time and this prompts them to chase them up!  Good luck xx