17 weeks later and fed up with still no treatment.

Hello LoopyLou63,

I'm very sorry to hear that you are experiencing significant problems.

Macmillan has a publication outlining actions you can take, and how to pursue these, in circumstances like your own. I've attached a link to this below in case you haven't come across it already and hope it is useful for you.

I do hope you can make some progress urgently.

Raising-your-voice-toolkit.

Thank you  

To be honest I don’t have any confidence in the hospital now but I will have a read of the booklet.

Never did I imagine that it would be like this. At no point has anything conformed to the NHS Guidelines, let alone given me any confidence in the system.

 I even went down to the hospital to the Respiratory clinic trying to get some answers only to be told that I needed to phone the Appointment secretary, that’s the number that never gets answered, just a message stating that the line is busy. No answerphone.

i can’t carry on trying, I’m exhausted.

Hello again,

I wondered if you're aware of Macmillan's support lines, there are two that might be of help to you - our support line and raising your voice toolkit.

If not I've attached links below, have a read and contact them for help and advice if appropriate.

Support Line

Raising-your-voice-toolkit.

Hi sorry.to hear this. I too am in the same.position waiting for my pre op, then the operation.  Im about 8 weeks in though. I too feel frustrated. I really want to get it all over and done with, but also feel like ignoring it as.so frightened.  I know that sounds silly but feel like im in limbo, as cant plan anything, and am not enjoying things as have always got cancer in the back of my mind. Hate this!

It’s been like that for me for now 18 weeks. This morning I had a ‘review’ appointment and, surprise, surprise the cancer has grown so I am now waiting for surgery. Different hospital for this so need pre op etc as well.

Hi sorry to hear of your very long wait for treatment.

I thought my wait from diagnosis to beginning treatment, which was 14 weeks, was very long.  As you say, it's no surprise that the cancer has grown.  Mine was originally 2.5cm upper left lobe, by the time the treatment began it was 3.1cm.

I opted for radiotherapy (SABR) as opposed to surgery as I wanted a treatment that was less invasive and did not leave me dependant on people whilst recovering.  I am now two and a half years post-treatment and everything is looking fine, the cancer now looks like a tiny speck on CT scan follow ups, which I have every six months.

I wish you well, and hopefully you are not waiting too long for your surgery.

Best wishes.

Ann

I'm so sorry after all this time of waiting it has now grown. After i had my app with the consultant, with the results.of all the tests, the macmillan nurse said roughly 3-4 weeks wait. Im starting to think that its pointless being told its been caught early, if by the time you get treatment its grown.

Im so shocked at these replies.  I shouldnt be though, as my sister is on her 3rd lot of cancer. She has been referred to different hospitals a few times, and is now starting treatment. For 4 years, one cancer has been ignored, which was showing on the scans. The hospital she was under have admitted liability. Her experiences have been awful, which isnt giving me much hope. 

Im so pleased you are doing well. Were you advised to have surgery at rhw beginning?

Yes, I was offered surgery, but I declined. I personally did not want to be an invalid for 3-4 months, also I thought it too drastic to remove a whole lobe for a small lesion and the risks and complications of a lobectomy.  Because it was left sided, there was the added risk of damage to the heart, i.e. life long arrythmia which meant needing long term medication.

I have an NHS background (PA) now retired, and took advice from a few ex-colleagues.  I researched Stereotactic Ablative Radiotherapy (SABR). It was first introduced in the UK in 2013 for use in lung cancer treatment...then rolled out to NHS hospitals in 2015.  It is usually only available to patients with a 5cm or less mass.  The success rate is comparable to surgery, i.e. Surgery=97% SABR=95%

I informed my cancer care team that I would be declining surgery and opting for SABR treatment instead.  I had to travel 100 miles round trip for the treatment as not all UK hospitals have the necessary equipment.  I had eight sessions spread over three weeks.  I was able to go about my daily life whilst having the treatment with minimal side effects.  That was in December 2023...all subsequent follow up CT scans have shown a 95% shrinkage.  At my last follow up in March this year, the Oncologist showed me my CT images of before and after to compare, and it now looks like a very tiny piece of cotton, he said "what we're looking at could possibly be dead cancer cells or a bit of fibrosis from my SABR treatment.  Either way he said my treatment has been successful.

This is my second time of having cancer, I had right sided breast cancer stage 2 in 1991, my treatment was surgery and axillary lymph node clearance, followed by 35 sessions of the standard radiotherapy and all that entails regarding side effects etc.

Best wishes.

Ann