The Roy Castle Lung Cancer Foundation

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Robertlowe profile image
12 Replies

Too few cancer patients receive care for debilitating fatigue that can last for months or even years after treatment. Fatigue is a factor that not only significantly diminishes quality of life but is also associated with reduced survival. A study included 160 lung, breast, colon and prostate cancer patients who had moderate to severe fatigue. They were asked if their oncology teams had mentioned any of the cancer fatigue treatments recommended such as counselling, medications and getting more exercise. Only 10 percent of patients said they were told to get more exercise or to try other non-medication ways of reducing fatigue. More than 35 percent of the patients were offered sleep medications, even though drugs have been shown to be the least effective way to treat fatigue in cancer patients. The researchers also found that the type of cancer was a factor in whether patients received treatment for fatigue. Only 15 percent of colon cancer patients and 17 percent of prostate cancer patients received treatment for fatigue, while 48 percent of breast cancer patients were told about counselling. The vast majority of patients were not engaging in behavioural practices that could reduce fatigue and potentially enhance quality of life. Almost a third reported napping during the day, which can actually worsen fatigue. There is a need for specialists who focus on helping cancer patient’s deal with issues such as fatigue, depression and pain.

Soul destroying chronic fatigue, must obviously result in shorter survival stats, so surely those in power can’t continue to ignore something so demoralising and outright destructive.

Any thoughts experience or opinions, should this be pursued?

Should or could Roy Castle get behind it and start up a campaign.


12 Replies
beechnut profile image

Robert, I had lung surgery five years ago,and I was never offered any information or treatment for the dreadful exhaustion and depression I experienced afterwards. I live alone and my family live a long way away. I was prescribed anti depressants which I am still taking, because whenever I try to reduce them I feel very ill.I'm not ill now though I am still improving which I thank my lucky stars for but I do still get very tired after any exertion. I have just been put on the waiting list for a oulmonery rehabilitation course which I have high hopes ofI'dlike to be able to stop taking anti depressants but can't deal with the withdrawal symptons on my own, but maybe that's a small price to pay for my recovery?

Robertlowe profile image
Robertlowe in reply to beechnut

Beechnut I know exactly what you are going through in 2000 I lost my lovely wife to oesophageal cancer in 2 weeks after 35 yrs of marriage. My daughter stays in the US and my son lives on the other side of the country and I live alone with no family/ relatives nearby. In 1993 I survived small cell lung cancer then in 2007 I had non small cell lung cancer, had a lobectomy and sank right into a deep depression. My GP handed out anti-depressants like they were sweets and for 2 yrs I was a living zombie just automatically going through life. I eventually got to the point where I’d had enough, I was surviving but with absolutely no quality of life. So I decided to do something about it, I was on 50 mg Amitriptyline and told my GP I wanted weaned off them. I began a regular exercise regime starting off doing about 5 reps of each and gradually building it up by adding one rep every day. It was hard but I persisted and soon appreciated the benefits. I went down to 5mg Amitriptyline and then started missing days. The exercise improved my breathing, stamina and my whole attitude went from negative to increasing positivity. For the last couple of years I have been free of medication and having an enjoyable life eagerly looking forward to each new day.

Ps I found that finding and pursuing a new interest or hobby is amazingly beneficial. Depression feeds on a dormant mind. Mental and physical inactivity leaves far too much time to spend thinking negative thoughts. You can beat this by pursuing/adapting these guidelines. Nothing worthwhile is ever easy, and with no tutorial programme in place in the meantime, your future recovery lies in your own hands.

beechnut profile image
beechnut in reply to Robertlowe

Robert, Sorry about your loss of your wife and then your own poor health, but glad that you are beginning to cope and enjoy life. I do enjoy my garden and hope that the rehab course will get me going again. Thanks for your reply.

beechnut profile image

apologies, that should have read "pulmonery Rehab course"

I do think that there is not enough emphasis on this and it should indeed be looked into further regarding support and help for cancer patients . Although I can't knock the help my husband has had, a lung nurse, an OT and a Dietician have all been really helpful . However as time goes on I think you are pretty much left to manage things like fatigue by yourself . However it's easier said than done, cancer patients need more help with motivation and encouragement . I despair for people without family or friends nearby to help , they need special attention . It can be hard to motivate someone who is just so tired and weak. It's not surprising people end up on anti depressants . Maybe this is something that could be targeted as well through support groups too ?

Georgie1 profile image

Hi Robertlowe,

I was diagnosed with nsclc in July 2012, I live in Spain and so far have seen two Oncologsts and will probably see another one in February for next I appointment. I haven't been told about help with the fatigue/tiredness I just cope with it as best I can. I am however lucky as my husband takes good care of me when I need him too. (I also suffer with osteoarthritis which is in most of my joints) At my last appointment in December I was only told then that I could have prescriptions for something to help me with the spots and rash I have with the side effects from Iressa. So far I haven't needed anything but E45cream for my very dry skin which is now all over my body. I haven't seen or spoken to a Cancer nurse, so am dealing with this without outside help. Thank goodness I have always been a Positive person. I think there should be more help/Information for all those who are suffering/recovering from this terrible illness. X

honeypolly profile image
honeypolly in reply to Georgie1

Hi Georgie

I am currently taking tarceva for nsclc & am suffering the skin toxicity that comes with it. I was given no help or advice prior to starting this treatment so have had to research & try things myself. I am a recently retired nurse specialist (not in cancer), so I know how & where to look for relevent information. I have posted my research so far on this website, which you may find helpful. Products like Aveeno cream, aqueous cream, & E45 products can all be obtained on prescription from your G.P. I have found that you need to ask direct questions & insist on answers if you are to receive any support, so don't be afraid - these are professionals its their job to knoe or find out for you if there is any help support or knowledge that will help you. I hope you are recovering & that you remain positive. Good luck. Kind regards Honeypolly

dmg337 profile image

Hi Robert

This matter of fatigue should definatley b persued. On the 20/12 my mother who had small cell lung cancer was suffering from fatigue 3 wks post final cycle of chemo. She was so desperatley fatigued that she had to crwa upstairs to get to bed . She was admitted to hospitaldue to her fatigue. Sadly she had a fall in

hospital trying to access the toilet and sustained a brain stem injury. She sadly died 2 days later.

So fatigue is an issue for cancer patients and more needs o be done to educate patients on options . Nobody even mentioned any possible treatments to my mum she just struggled on as best she could with daily living. Hope awareness of the issue is raised.

Regards dawn.

honeypolly profile image

Hi robertlowe

I agree completely with your post, & its not just regarding fatigue where post tretment support is sadly lacking. I have posted my research into managing skin problems while taking tarceva, based on my own current experience. I don't know if it will be helpful, but prior to retiring I was a nurse specialist in occcupational health & came accross people suffering from chronic fatigue syndrome who were trying to get back to work. There are very few dedicated programmes for these people but there is information regarding graded exercise programmes that gradually increase one's activity from as little as 5 mins to hours & consequently "normal" activity levels. I'm sure with a bit of thought this type of programme could be adapted for cancer patients.

Robertlowe profile image

Thanks for your experienced support HP.

JanetteR57 profile image

The whole issue of living with and beyond cancer is finally gaining momentum and at last for lung cancer patients (who in previous years did not survive in sufficient numbers for large scale studies unlike other cancers such as breast, skin, testicular etc). Quality of life is so important for us all. Agree with the comments about tiredness creating a vicious circle as with no energy, the temptation to sit around and do nothing is great, and the 'fear/anxiety' of activity especially for those with reduced lung function can also lead to inactivity. I was a regular swimmer prior to my lung surgery and despite a 6 month break whilst I was diagnosed and had surgery to remove half my lung, and whilst recovering losing a dear friend suddenly to previously undiagnosed LC that had spread to his spine, liver and brain, I used the combination of all this to re-start my gym membership and swim regularly - increasing each visit to raise money for RCLCF. The combination of having a challenge, announcing to others through my Just Giving page what I was doing, paying out a regular gym membership and having gained weight from steroids/inactivity, all played in as motivators. I have gone onto swim more frequently and greater distances in the last few years than I ever did before and really believe it improves my health and wellbeing. I certainly feel more stressed when I don't go! I know it's not for everyone but as it's non weight bearing and the water supports you, even walking up and down the pool or doing aqua exercises might help. I've also found helping others a great distraction from getting self absorbed so advocate this - I try to keep off medicines as much as I can as I find they all have side effects that are just as bad to live with as the conditions they're meant to help. Macmillan has undertaken several studies about lung cancer patients recovering after surgery, chemo or radiotherapy and asked lifestyle questions which include fatigue as it's becoming increasingly recognised how much this affects our overall health and wellbeing and ability to live a 'more normal' life. good luck.

Brewster24 profile image
Brewster24 in reply to JanetteR57

Hi I too used to enjoy swimming and yoga ,obviously lock down has stopped that for a moment .Unfortunately my lung cancer has moved to several other areas of my body ,my heart (I now have a pacemaker and have to take beta blockers to keep things stable)it also has visited my brain and I now have epilepsy and have to take medication for that .I am currently trying to get off dexamethasone which is proving difficult I started taking this when my latest brain tumour was treated with stereotactic radiotherapy end of last year. I walk with a limp and use a stick or rollator to get about .I too quickly fatigue hence the rollator .I am disappointed that my condition has has not returned to a resemblance of normality .I can no longer ride a bike as I am unsafe and brain tumours have deemed me unsafe to drive a car .I have never been a sports person but I have always tried to keep healthy .I weigh 2 stone heavier and I am constantly on a diet. It seems when I lose weight cancer returns somewhere else.

My point is I suppose, so far since diagnosis in 2015 I have climbed many hills and experienced many dark days .I have endured most treatments available including lung surgery just 'target therapy left '.I think for several years I was missing the lively individual I once was ,now I am just grateful I am still here .I do several different small exercise regimes from old yoga poses that don't include balance poses ,as I have no balance, also to the likes of 'Jo Wickes for seniors' (I am now sixty not that senior)and also exercises given to me by the local physio department .I join groups knit badly for charity ,gorilla garden in the local council park and my own tiny back yard .I walk even short distances most days .Getting out helps me to get past negative days ,just having a brief conversation even behind a mask ,lifts my spirits somewhat. I am lucky as I have a loving family and a husband who has angel wings and I feel for anyone on this cancer rollercoaster doing it alone it is not easy .

Fatigue is a problem but a little daily exercise does seem to help a lot and a good varied diet .We are here that is a positive thing .Just a few years ago before immunotherapy that was probably unlikely ,if your having a bad day, just let it be just that and then tell yourself tomorrow will be another day and things may feel better , that has worked for me .Good luck and I hope things improve for you soon,


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