Should I ask for a new assessment - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation

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Should I ask for a new assessment

ginkgo profile image
12 Replies

I was diagnosed with terminal squamous cell lung cancer last October. My upper left lung had collapsed with a 10cm tumour and the tumour was blocking the lower lobe and caused it to overinflate. I had two sessions of palliative radiotherapy, one week apart, in Nov 21 to help keep the lower lobe functional which did improve my breathing a little. I received no further treatment or consultations after Dec 21.

I have improved a lot in the last 3 months. My natural voice has returned, my breathing has improved, my taste buds are getting back to normal and my appetite has improved. When contacted by my regular cancer nurse, she suggested an appointment with my respiratory consultant on 1st June, who arranged a new xray the same day. The xray confirmed that my lung has reinflated without medical intervention which is an obvious relief and is the reason my voice improved too. So far, there has been no report to my GP of the xray findings, and no further assessments or monitoring offered.

Once cancer has been diagnosed as terminal and no treatment recommended, does this mean I will not receive any ongoing monitoring, even if things appear to be improving? I don't want to get my hopes up but I don't want to ignore the possibility of extending my life either. Other terminal patients seem to receive regular monitoring, so what is the criteria?

I don't feel confident enough to question consultants but I feel I have already been written off. I am not claiming I have been written off, just that I feel that way, maybe due to the pressures on the NHS they are being more selective?

Sorry for the long post, but any tips how to question medical professionals without offending them or appearing to question their competence would be very welcome as I am not naturally tactful and am generally a loner. If anyone has had similar experiences I would be very interested to hear them.

12 Replies
RoyCastleHelpline profile image
RoyCastleHelplinePartner

Hi ginkgo,

Thanks for getting in touch with the forum. I'm sorry to hear of your recent diagnosis but glad to hear that the radiotherapy you received had the desired effect and your lung has reinflated and your symptoms have improved.

You should be being followed-up by an oncologist, given that you have a cancer diagnosis and that you have received radiotherapy. Even when a patient is stable and not receiving any active anti-cancer treatment, they should still be offered regular imaging, xray or CT, and appointments to check on symptoms and see how things are going. I would recommend that you call your lung cancer clinical nurse specialist (CNS) and have this conversation with them. They should be able to liaise with the oncologist and arrange an appointment for you. Further treatments may be considered, depending on your overall fitness and the state of your cancer. Sometimes a watch and wait approach is preferred, but even so regular imaging and appointments need to happen so that you can be informed of how things are and what, if anything, can be done regarding any further treatments.

If you would like to discuss anything further, you can call our free Ask the Nurse helpline which is available Monday to Thursday 9am – 5pm and Fridays 9am – 4pm. Tel: 0800 358 7200 or you can contact the nurses by emailing lungcancerhelp@roycastle.org

Best wishes

ginkgo profile image
ginkgo in reply to RoyCastleHelpline

Thank you so much. The reassurance that I should be receiving some monitoring has given me more confidence to ask why I am not receiving any or have been advised that it is available. I will contact the cancer nurse and let you know what she says.

ginkgo profile image
ginkgo in reply to ginkgo

Hi again. I spoke to the cancer nurse today and it wasn't initially very helpful. Apparently. scans are only done if they are contemplating treatment, and as I have been told I cannot have treatment then no point in doing another scan. Monitoring was rejected as I was diagnosed as a terminal patient, so if I feel ok then all good and no point in meeting consultants and if I'm feeling bad then little they can do anyway. Catch 22 comes to mind! 😀

I pointed out that my situation has improved considerably since the initial diagnosis, and this could affect the possibility of treatment. Bless her, she understood my problem and did try to give me valid reasons for my situation being ignored but she struggled. In the end, she offered to email the oncologist with the latest information and see if he was willing for me to be rescanned and see me again.

I am not holding out for hopes of treatment, but even if there is still no possibility of treatment I will have the satisfaction and peace of mind knowing it has been reviewed and considered and I haven't thrown away the possibility of extending my life.

Many thanks for your advice and help.

NotK profile image
NotK

Cancer is quite unpredictable so I don’t see why you can’t be hopeful. Hope is a very powerful thing. Pls do breathing exercises and eat right. If your mind and body are happy, you never know, some miracle might happen. Many people beat the odds and you can be one of them! Talk to your doctors, read books to educate yourself and put up a fight! After all, have nothing to lose. Wish you the best ahead

ginkgo profile image
ginkgo

Thank you NotK. I am feeling very well at the moment, even better than before diagnosis so I think I have had a little miracle already. I do still get breathless with exercise but it has improved a great deal, and I am trying to build up my stamina and my general health. Eating is much more pleasant now my taste buds don't make everything taste foul. Long may it continue. :)

JanetteR57 profile image
JanetteR57

I'm quite confused by your story - where are you based? If you've been diagnosed with advanced cancer and terminal, you should certainly be referred to supportive services - not having active treatment still means you should be eligible for palliative treatment and also for any support you might need in the community in terms of benefits, social services/care support. Anything less once you've been clinically diagnosed suggests almost negligence or abdication of your care..... contact your consultant if you're dissatisfied with the nurse's response and if still no joy, contact the lead for lung cancer in your hospital..... nobody should be abandoned even if they choose not to have any treatment which doesn't seem to be the case here. also no treatment doesn't mean a peaceful end .... there may be symptoms to alleviate with treatments even if no curative intent - I'm baffled at the responses you've had so far. If this was the normal, none of the trials, or many many interventions that have been given in recent years to those with advanced cancer would never have happened... and the landscape has changed beyond recognition..... in all types of treatment for lung cancer and people living longer with such interventions - worth asking why they don't deem you eligible for such treatments or support. what happens if it spreads anywhere else if they're not monitoring you? do ask the questions - it's good that your lung has re inflated but it sounds from what you've said that they have much more to explain to you about your position to clarify what will happen in future. ....good luck.

roycastle.org/about-lung-ca...

ginkgo profile image
ginkgo in reply to JanetteR57

Sorry if I confused you.

I am in Mid Yorkshire NHS area. I have been offered 'end of life' help at home by the district nurse, but I don't need it and I hope I am a long way from needing it. I feel very well in myself and am doing everything I did before being diagnosed, but maybe a little slower than before, ie. cooking, cleaning, gardening, shopping ... all the normal stuff! I have even started the Roy Castle exercise regime (Circuit A).

The point I am trying to get across to the nurse and the consultants is that my symptoms, and my health, is better now than when I was first diagnosed. I had a collapsed lung, I lost two stone in weight, had taste and appetite problems, my voice changed, and I was unable to even shower or dress without gasping for breath. My lung has re-inflated without direct medical intervention, I have put on weight, my taste buds have improved and so has my appetite, and my voice has returned to normal. My breathing has improved a lot but I still get breathless with exercise, but then, doesn't everybody, to differing degrees. The respiratory consultant put the improvement down to the palliative radiotherapy, but that was it. My request for ongoing monitoring was ignored and I was told to 'see how I feel', which my cancer nurse tried to explain!

The oncologist has agreed to see me again, but so far no mention of a scan, but I'll be patient and see what he says. As the palliative radiotherapy was so very successful, I am hoping he will agree to more radiotherapy. Maybe not now as I feel well at the moment, but when my condition deteriorates again. I would like to extend my life as long as possible, especially if I can feel as well as I do now. I am not taking any drugs or treatment, and don't need any just now. I am not asking to be 'cured', but I am asking if relatively simple treatment will extend my useful life, ie. more palliative treatment, if needed. I didn't get any treatment other than the palliative radiotherapy because the oncologist said I was too frail for chemo (in his defence I was quite ill by the time I met him, and had lost a lot of weight), and I was unsuitable for the other treatments.

I haven't had a scan since my radiotherapy in Nov 21, which was 16Gy in two fractions. My research indicates that I could have more radiotherapy, as it is the total dosage that counts, not the number of fractions, but of course this was just research and I need confirmation. I do feel that I have been written off already by the NHS and my asking for more information is an inconvenience, but I hope and I do truly TRULY hope, that I am wrong.

I hope I stay well for quite a while yet, but this may be as good as it gets, for me. I am not unrealistic and I know full well what a terminal diagnosis means. I just hope to delay it. :)

If you need more information that may help, please don't hesitate to ask.

JanetteR57 profile image
JanetteR57

Thanks for explaining and it's great that you're feeling well and better than before your treatment. I experienced similar although I was already relatively fit prior to my diagnosis and surgery to remove half my left lung with open surgery in Dec 2010. However worrying sudden onset symptoms sent me to A&E and a chest x-ray revealed the large mass which was misdiagnosed and delayed any scans/investigations due to my age and never smoking history so when the scanner broke down and took over 5 weeks to get a scan, there seemed little urgency on the part of clinicians. However the CT led to a rapid PET then an appointment with a surgeon was brought forward by 2 weeks and a few weeks later I had surgery. Immediately after surgery I gained the weight I'd lost in hospital due to inactivity compared to my usual active lifestyle but losing a friend in the June suddenly and unexpectedly to widespread lung cancer led me to take up my swimming with a vengeance to raise funds for Roy Castle lung cancer foundation in my friend's memory and recover my lung fitness. I also read 'anticancer a new way of life' by Dr Servan Schreber and learnt that my hard working/always on/ burn the candle at both ends lifestyle certainly wasn't helping and tried to get a better balance with my life. I went onto swim much much further than I ever had with 2 lungs and generally felt much more appreciative of life.

These experiences can often cause us to go 2 ways - to feel grateful for another chance and do everything we can to maintain that or some give up and feel there is nothing to be done and worry about everything... most find a balance somewhere in the middle with the various ups and downs that a lung cancer diagnosis brings. Over the years since my diagnosis I've had some really good periods of health and some not so - regular hospitalisations with severe chest infections became quite frightening pre-pandemic and I'm thankful the lockdown and all manner of measures to improve general health/hygiene in the population - social distancing, sanitising/washing hands, mask wearing, improved ventilation have so far resulted in better winters for me...

Several patients I've met at conferences live very full lives, still running or cycling endurance events for their own health and to raise awareness/funds for lung cancer charities, others continue their physical work (e.g. farming, manual work) and golf or like me swim.... it's good for us all to find something that keeps us active to keep all manner of conditions at bay as well as improving our lung health

Nobody should be written off by the NHS - even end of life should be supportive - even if there are sometimes issues about who locally is responsible for end of life care -local authority, hospice or NHS but nobody should feel abandoned so it is worth explaining to them how you feel. good luck with your continued relative good health despite your diagnosis... long may it continue.

ginkgo profile image
ginkgo in reply to JanetteR57

Thanks, Janette. You have been through the wars, but pleased you came through it and are living life to the full.

The lack of ongoing care may be partly my fault. I just accepted whatever I was told, and didn't really question anything. My miraculous (to me, anyway) improvement has made me more determined to try and stay that way.

Again, thanks for the advice, and I wish you a very healthy and very happy future.

JanetteR57 profile image
JanetteR57 in reply to ginkgo

Thanks - same to you. When I asked my consultant if there was anything I could do to make a difference or prevent it returning, he said there was no evidence for any particular diet or activity but a positive mind could make all the difference.

I've not forgotten that although I also think losing my younger sister when she was 40 and 3 years ago, losing her oldest daughter (33) suddenly and unexpectedly also shifted my thinking.

Taking for granted that everyone will live a long and healthy life is a very flawed belief - but making the most of every day and taking opportunities when they are offered can also take us into new directions and stretch our horizons. Stay safe and well.

ginkgo profile image
ginkgo in reply to JanetteR57

We all suffer losses. I lost my Mum at 60, and my sister at 70, my Dad who was a teetotal non smoker and cycled all his life got to 76.

At least I have been able to organise our finances, and do as much as I can to make things easier for my husband. He is brilliant at making things but hopeless with paperwork and he hates the telephone, but I have tried to think ahead and have people organised to help him through it, when the time comes. Meanwhile, I am enjoying life and hope to continue enjoying life for a very long time. I'll post again after seeing the oncologist. I have been looking at clinical trials but need more up to date information before I can enquire further. Fingers crossed.

JanetteR57 profile image
JanetteR57

Yes, it's part of life - but losing my sister and her daughter at such young ages was quite a wake up call.... as you say, at least with some warning with a long term condition there's a bit more time to organise things ... but enjoy life for as long as you can.

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