Feeling low: Hi I am usually a very... - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation

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Feeling low

Antrobus2021 profile image

Hi

I am usually a very positive person but feeling lost at present, had my PET scan a week ago and waiting results and treatment plan (had to wait 6 weeks for PET scan following operation on fractured femur). I have also now had confirmed I have Covid.

Has anything with stage 4 lung cancer and secondary bone cancer had to have treatment stopped/paused due to catching Covid or will this delay my treatment plan further.

8 Replies

Hello Antrobus2021,

It sounds as though you have had a lot going on all at the same time and it is completely understandable that you will be very concerned about any further delay in starting treatment. Before starting any cancer treatment the team who are looking after you will want to weigh up all the risks and benefits of commencing treatment, they will closely look at your general health and blood and other test results and from this discuss the best way to proceed. Do you have a specialist nurse? these nurses are a great way to keep in contact with your team and will be able to talk over any concerns you have about a potential delay in treatment. There are lots of variables with all the different treatments available I have added a link to cancer research website which has information on cancer treatment's in general and covid-19

cancerresearchuk.org/about-...

If you would like to discuss anything you can either email us at lungcancerhelp@roycastle.org or call our free phone nurse led helpline number on 0800 358 7200

Kind regards

The Roy Castle Support Team

Hi

Many thanks for your helpful reply and the link to the cancer research website. It is just that I was told I was an urgent referral but things just seem to be going nowhere. I will contact my McMillan nurse as there is no other contact I have been provided with.

Regards

You're already dealing with a lot and now the Covid. It's understandable you'd feel low. Don't beat yourself up. Try to rest & relax as much as possible. Sending best wishes for healing.

Antrobus2021 profile image
Antrobus2021 in reply to Lyubov

Thanks, always a good site to come to for reassurance.

Hi Antrobus2021 Its such a tough time and the added covid must be another worry for you.

I can't help with your covid question but it might reassure you to know that my husband waited from mid Feb for 7 weeks before his treatment began. It took all that time to investigate and rule out a neuroendocrine tumour, blood cancers and bone cancer, until finally confirming the diagnosis. Once the lung biopsy had confirmed malignancy, we then had to wait for the genetic analysis to come through which took a further week. I remember talking to the nurse about if we could speed it up as we were so desperate to avoid further delays but she was totally relaxed about it. She basically said that in their world, a few weeks delay wasn't anything to worry about (it had already spread!) and how important it was to get the best treatment decisions before starting treatment. It didn't stop us worrying of course.

But she was right. It actually didn't matter that the cancer will have grown in those weeks because the systemic treatment got to it wherever it was - and the results have been amazing.

We took those extra weeks to make sure he was as fit and healthy as he possibly could be ready for the treatment - great diet, yoga, gentle exercise, sleep.

Lots of people take breaks in their treatment too, whether for a special holiday, family events or just to take a break.

I hope this gives you some reassurance. Look after yourself (I'm sure you are!)

Best, Sarah x

Hi Sarah

Thanks so much for you very reassuring message. This is all new to me and 8 weeks ago I thought I was in really good health.

I had to visit fracture clinic last week had X-ray and Dr said ok and asked whether cancer in bone was primary or secondary but gave me no further information. Good news is that he does need to see me for another 4 months.

Just need someone to tell me prognosis and treatment plan, so I know what I am up against rather than be in limbo. I know just a blip, but thanks again for your positive response.

Hope your anxiety is lifting a little - when we're being investigated our minds go into overdrive thinking every day's delay is making it worse. lung cancer treatments have changed so much in recent years that a whole raft of tests are done then results gathered for discussion by the team before giving the patient results and discussing treatment options. This time of year reminds me of my 'limbo' experience -A&E Oct 15th with strange symptoms and a chest x-ray revealed a 'lesion' on my left lung but discharged after 7 hours with antibiotics and steroids. The next night breathing was no better and large swelling on left side of my neck I called hospital who told me to call an ambulance. admitted and diagnosed as 'uncontrolled asthma' although having had asthma as a young person but not in at least a decade it felt completely different. I didn't respond to meds - it took a week to get breathing good enough for discharge and told I'd be invited for a CT scan. CT appointment 2nd Nov but on 1st called as scanner had broken and they had to order parts. I asked if I could go to their other site but told only consultant could move appointment - he was on a fortnight's holiday. My anxiety was high... eventually had CT and called in for results on Tuesday, told likely to be cancer and when told 'lung' I said that I knew the outcome could be poor so she said 'it might not be' as she 'couldn't interpret the scan'. I asked what happens next? told my case would be discussed by multidisciplinary team in 2 days' time but may be sent for radiotherapy or another scan and they'd be in touch. On Thursday afternoon called by the PET team (different hospital) to go first thing next morning. That weekend a letter arrived for a consultant appointment on 2nd Dec. However on 26th Nov called by consultant's secretary to go first thing the next day (PET results had come in) He told me my only treatment pathway - 16th Dec had surgery but didn't get results until 13th Jan. 7cm adenocarcinoma (NSCLC) tumour removed with half my lung. That was in Oct 2010- Jan 2011.

Things have improved in so many ways since but one aspect has increased. As a result of so many different treatment options depending on biological and imaging results, they gather all results into a 'bundle' for discussion like bringing different pieces of a jigsaw together which takes time - not helped by pandemic as the same staff who would be looking at cancer cells also working on covid cases.

I found distraction helped. Keeping busy gave little space to waste emotional energy on the 'what if' as I'd deal with the 'what is' when it came - which was in January by which time I'd had my treatment so worrying wouldn't achieve anything. Writing Christmas cards, buying presents, seeing friends, I worked full time and even fitted in a few swims.

Over the years I've tried to deal with any unknowns in a similar way - I've had some nasty chest infections as many people with lung conditions do even when covid isn't around and it can delay or pause some treatments but medics are used to dealing with such interruptions to care and can usually reassure patients of the impact of any delays to treatment.

It's natural to worry, but it doesn't change the outcome and can get in the way of doing other things... hope you can find a way through and recover quickly from covid. good luck.

Dear Janette

Many thanks for your detailed and reassuring response. I am normally a very positive person and have not let the diagnosis get me down so I think it is probably the covid and the constant coughing, lethargy and tiredness which has led to my current low feelings.

I also keep telling myself that the MDT may not have met yet to discuss the PET scan results and a treatment plan so could be next week before I hear any news. It's just that my last notes were marked urgent referral and all previous scans and xrays were carried out 7 weeks ago, so last piece of the jigsaw and I was hoping would be fast tracked as indicated by my respiratory consultant.

Just impatient I guess but thanks again for your helpful response.

Rob

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