Am new to the forum.It is not me who has lung cancer,but my beloved husband Alan.
Our story begins when we came back from a fantastic holiday in May,a few days later my hubby had sharp pains in the right side of his chest and I urged him to go to the doctor.He was sent for a chest X-ray and a couple of days later,his doctor rang him up and said he wanted a closer look at something on his X-ray and he would send him for an ultrasound,then he had a letter to go for a ct scan on 5th ofJuly,less than 3 hours later the doctors receptionist called to say that his doctor wanted to discuss his results and we were booked in for the next day.
To cut a long story short,he told him he had a mass in his right lower lobe and the met team had been informed and he would be fast tracked.
The next day we had a call to say he had an appointment at the lung fast track clinic on the Wednesday,yesterday.
We went,hoping that the consultant would be speaking about operations,which the doctor had been talking to us about.Well,we were told he had a3cm mass in lower right lobe,but there was fluid in the pleura on the scan,he did show us,and there would be no operation,just chemo.
He was going to try and get some fluid off by ultrasound assisted needle biopsy,but it was a bit 50/50 he said when he looked,so he is sending him for a ct needle biopsy.
Any information would be gratefully received,we both feel like we,ve been hit with a ten ton truck.Sorry for going on and on.
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Ruth65
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Thank you for posting, though sorry you and Alan are in this situation. No need to apologies for the length of your post, many hear understand what you are going through.
From your post it looks as though there is a suspicion that the mass and fluid are malignant, i.e. cancerous. However, this may not be confirmed until the ct biopsy results are back. This can be a really difficult time for people, trying to prepare for what might be ahead but not knowing for sure.
We have a pack entitled "Lung Cancer: Answering your questions" which might be useful for you both. It can be viewed or ordered from our website roycastle.org or by calling our nurse led helpline on 0800 358 7200. At this stage, it may be information that is not relevant to you, as we can't assume that lung cancer is the only or likely outcome of the biopsy results unless the Consultant has been definite.
It is good to hear that your GP and consultant have acted rapidly to find out what is happening. This will mean the right course of treatment can be put in place once the results are gathered and you have had time with the doctors to discuss what treatment might be best. You should also be allocated a Lung Cancer Nurse specialist who will be able to answer any questions and join up some of information you are being given.
We know from those affected that this can be a very hard time to cope with the uncertainty and worry of what you are facing. I hope you don't have too long to wait until your follow up appointment. I am sure you will get some helpful suggestions from members of the Forum and do please call our helpline or visit the website if this is useful.
Alan is very positive and I pray that things will turn out better than we expect,but you are right,the doctor and consultant,everyone at the NHS have been marvellous.
Will look up the leaflet,thank you for everything and will keep you posted.
This is what happened to my husband last year... we went for a walk after a few minutes, he had severe chest pain.. he had the X-ray, CT scan, I rang the GP for the results as I demanded them..
He was diagnosed with a few mass's in right upper lung.
We were distraught for days...
We could not share the results with either of our family members,. but eventually we did,
It was a huge burden lifted from both of us by sharing it..
Then we had plans to start chemo after having a biopsy to see what type of cancer it was.. initially they did not know, so they assumed it was squamous cell carcinoma, gave him 4 rounds of chemo, in between treatment he had a temperature.. he was in hospital for 12 days, they re biopsied him to find he had adenocarcinoma, they then changed the chemo treatment, which did shrink the tumour, significantly, if it had shrunk some more they would of operated on him.. but in my husband's case it was no small enough to operate..
However at the beginning we were told, no surgery, no chemo, maybe radiotherapy... so we were distraught...
However the chemo my husband handeled better than the radio..
So as long as your husband has targetted treatment the tumour may shrink a good size.. 3cm it's smaller than what my husband's was. My husband's was 7cm.
Ruth you have to have your cries, it's ok to cry, it's ok to talk about it.
Something I will advise is have a vice near you to reach out to..
My vice was chocolate ( dairy milk) and a good cry.
I was my husband's rock, this kept him strong and positive... he did not know, I cried so much, but in front of him I never shed a tear...
I sat down and told him, please share your thoughts I am your wife, I am hear to take your worries, your burden, your fears...
He did let out his feelings, he did cry, I did hug him if he wanted that hug, my husband ( as most men are) was very private, never wanted to go to lung cancer meeting groups, but I really wanted too.. so we never went.
I don't know which country you are in, i am in the U.K.
The way things are done abroad in terms of actions and treatment are different.
Some cancer centres work much quicker, combine treatment..
A lot of positive stories are told from lung cancer victims from the mayo clinic ( Texas)
I wish I opted for this at the beginning..
Ruth I hope wish and pray, this whole journey becomes a positive one for you both.
May god give you both strength through out.
Take care and makesure you eat, as this will be your energy and strength... please let others help..
thanks for that lovely email.I am trying to stay positive,it is this pleural effusion which I am so worried about,as it gives a poor prognosis,but we are hoping for good news when we get the biopsy done.What frightened me most was that the consultant seemed so certain,I asked if it could be anything else and he said no,how do they know all this just from a scan?
You and your husband are so brave,I hope you are both still fighting.
My husband puts his head in the sand,wants to know the bare minimum,but he is very strong willed.Thank you once again for a lovely email.x
Don't apologise - it's a frightening experience for you both and the forum is here to help.
Whether a tumour (mass) is operable depends on where it is (proximity to other organs) as much as anything - not always related to size. Your consultant is doing all the processes necessary to get as accurate a diagnosis as he can at this stage. Since many lung conditions have similar symptoms, a myriad of tests are usually done to determine what is going on and these all take time to get the results which can result in ever increasing anxiety for you all whilst you anticipate the worst, no doubt use Dr Google and terrify yourselves even more -
I'd suggest you try, if at all possible, to distract yourselves from being immersed in this 'cancer world' and do something pleasurable. Watch a film, go for a meal (if he's able to go out) or something to get your minds off it.
Many of us had similar scary journeys - mine - an emergency presentation that showed 'a lesion' on my lung on a Chest x-ray, misdiagnosis and a weeks stay as asthma another month to get a scan, another month before CT, follow up, PET and its follow up with consultant by which time they'd decided they weren't wasting time to do biopsies as 'it has to come out together with half your lung, we'll then determine what it is and where we go from there'. My tumour was 7cm and malignant but I didn't know that for almost a month after losing half my left lung. That was more the 6 years ago - statistics I read at the time were that not many people survive. Please remember if you can't resist the internet,many stats are out of date, many relate to older, very sick people with damaged lungs.
It's good that you sent him to the doctors for the sharp pains in the chest - we tend to know about that symptom as 'heart' symptom so take action. however many lung cancer patients don't feel pain - there are no pain receptors in the lungs which is why so many people's tumours are found on emergency presentation at hospital (due to other symptoms) or during investigations for something else.
It's good he's being fast-tracked as whatever is wrong with him, it sounds as if the consultant is doing everything to ensure whatever it is, he'll get the most appropriate treatment. Treatments have come a long way in the last few years for many lung conditions and many are now personalised to individual traits within the condition. The mass could also be a benign lung nodule.
If you do want to research information, I'd suggest you use trusted internet sites dealing with lung conditions (Roy Castle, British Lung Foundation, European Lung Foundation, CRUK/Macmillan for cancer related info) as there is an abundance of information unverified and unproven and it's easy to get overwhelmed and confused. You need to know about your husband's specific condition (there are many) so advice from others with different situations may help or add to your confusion. However the moral support from an online group can be very helpful.
This and other forums have many patients, carers and moderators able to answer your questions but you can also telephone their helpline at Roy Castle or Macmillan if you want to speak to somebody in person. At this stage, you won't have been allocated a lung specialist nurse (they only do this once the condition is determined if cancerous) but if this is the situation, I'd suggest you use them to field your questions. In the meantime, write down or record your questions and ask the consultant when you see him. If you can write down or record the answers that will help as if mine have been anything to go by, they pass by in a bit of a blur! He'll be part of a multidisciplinary team so your husband's case is likely to be considered by a team of experts if it escalates even if at this stage you're only seeing one of them.
Good luck. Try and think of the great holiday you've had - which is what I had to do recently - our holiday was in April and a week after return I was hospitalised for 14 days with a chest infection so kept thinking back of the good times I'd just had. Distraction can help you all. Wishing you well and keep us posted.
Thank you very much Janette,this is all good advise and I am glad that yours was a success story,you are very brave!
If you saw Alan you wouldn't,t think anything was wrong,he is very slim and fit,potters about doing gardening etc,takes the dogs out for a walk,he can,t believe he is ill,but I,m not going to stop him doing anything he wants to do.
He has been appointed a specialist nurse,so we will ring her with any problems,thank you so much Janette,you have cheered me up no end.x
That's part of the problem, Ruth. Many of us can look fit and healthy (especially if given steroids) - I work full time and did at the time, swim regularly (several times a week for several hours) so looking sick isn't an indicator. Unfortunately what we expect people to look like from images we're fed about certain conditions are flawed which can stop us seeking help. Many patients I've met have looked quite well even if on the inside of their bodies very serious things were happening. On my recent (and others in the last few years) hospital stay doctors comment on that - but it's all relative - on a ward of patients in their 80s, all very frail with multiple conditions, anyone 25-30 years younger looks well comparatively. I'd also just returned from holiday so that makes us look better than usual skin tone. Several patients on the ward had pleural effusion and had various treatments for this. I had pleuritic pain due to the infection so unrelated to previous diagnosis.
Whatever it turns out to be, the experience will hopefully encourage you to do whatever you can whilst you are able. Also recognise that when he needs to rest, he should! Sometimes the 'ostrich head in the sand' approach can help as it doesn't put the obstacles in our way, we just think we can and get on with it. That was my approach but others are different. It's not 'denial' but a coping mechanism. My role model was my dad who took this approach in his 50s when diagnosed with bowel cancer (twice) and last year - he's now 87 and my mum's carer (she has dementia). We didn't think he'd reach 60 and I must say it's harder being the person watching rather than the patient! I'm a believer that our attitude can impact our response to illness - positively or negatively so good luck to you all.
I'm pleased you've been allocated a nurse - do use her as she's there to coordinate the others and as likely to have seen/heard all your concerns and more and is there to help you both. In many centres (Including my local hospital), there are not enough of them so they tend to get pulled in many directions so not allocated locally until a diagnosis is given. That's wonderful you've been given one in advance of a diagnosis as the anxiety and questions are many at this stage - possibly the scariest part of all. Once you have some solid information and options/decisions about treatment, hopefully the journey will become clearer. Wishing you well.
I Janette. I am new to this forum or indeed anywhere where there are people in my situation ...Cancer in right lung plural enfusions and chest glands on same side ...i look perfectly normal on the outside and I don't even have a cough.. early June of this year was when I first got diagnosed ..you are the first to mention the effusion and to read about someone the same as me gives me some comfort ..I am so sorry that you are unwell but to be able to talk to someone in the same situation who understands how I feel is such a help ..I have had no treatment whatsoever but am now waiting for results of new tests on my earlier biopsy .'s lung and fluid to see if I am suitable for trials ...I feel good and I am going to grab this chance if offered with both hands and battle my way through ...may I ask how long has your diagnosis been ..I wish you continued strength health and love and positivity ..
Hi, welcome to the forum. Thank you so much for your kind wishes.
Sorry to learn of your diagnosis. On my recent hospital stay, I'd worked all day and been active yet in the early hours of the morning, had insufficient breath to even call for an ambulance! This is why these situations can shock us and others - as we 'appear well'
I'm recovering well from my recent chest infection - even if it did result in being in hospital for 14 days and on meds for many weeks afterwards. I've had several suspected recurrences since diagnosis (BAC 7cm tumour) in Jan 2011 (and surgery Dec 2010) but thankfully, none 'sinister' but serious chest infections including pneumonia just before Xmas (in hospital for a week). I didn't have pleural effusion but others in the ward did and they were being drained. This time I had severe pain from chronic dry cough with the infection which caused muscular spasm (cramp like pain) through my rib cage/chest area and what the doctor said was 'pleuritic pain" from the strain the cough was causing. Many patients I've met have looked 'well' or ''normal' for much of the time which can be good but can mean others assume everything is ok. That's why we must keep asking for answers and explaining what 'our normal' looks like although clinical test results will also be evidencing to the medics what's going on for us.
I'm so pleased to hear you're considering suitability for trials - that can be one way of gaining additional monitoring and knowledge about your own condition and it's the only way that scientists/researchers can advance new treatments so we owe a debt of gratitude to all patients who agree to this. I know several patients who've had positive experiences on such trials.
What my whole experience so far has taught me is that we have to do what we can whilst we're well enough to, accept that some days we'll feel better than others and that a positive attitude can help us (although we can't be positive all the time). take care and good luck x
Thank you So much it's very lonely to feel that you don't know anybody who really und erderstands our feelings and thoughts ..I have 2 grown daughters who are terrified for me and I am trying to accept that it is what it is and I will try all I can to keep well as long as I can ..I lost my dear sister last Sept to cancer and she was an inspiration in how she handled 4 and a half good years ..if I thought I even had half that time I would be great full ....bless you all ..x
I agree how lonely it is. It was only when attending a Roy Castle conference as a fundraiser almost 20 months after my diagnosis that I joined in a workshop where patients/carers were discussing feelings. I'd never heard of a CNS let alone been allocated one so had no clue that clinical nurse specialists existed to help liaise between multidisciplinary team members and the patient/carers. I also recognised from that that my experience was totally different from almost everyone in the room.
I realised that I'd never really talked about my situation with anyone else who might understand, had shielded my partner from details the consultant had discussed with me, hadn't shared anything with family and limited who I discussed it with to protect them and me as I felt unable to cope with all the questions, tears, pitying looks etc.
I've become involved in cancer research world (in the last 2-3 years ) and am expected to advocate for all types of LC patients so I'm keen to understand what others are going through who receive or consider different treatments from mine, and their reactions/responses to certain treatments so I can contribute the broadest views when I respond to questions at trial discussions/board reviews. I find chatting with patients at clinic, others attending cancer conferences, and these online forums invaluable to a) contribute my experience if it helps others, b) learn the areas we commonly experience and c) feedback thematic issues that arise (anonymously) to clinicians/researchers/medics when we review information for trials or potential design of future trials.
I do understand yours and your daughters' fear. I was terrified for my dad when he had bowel cancer in his late 50s and that contributed to my decision to shield family members from that ordeal (visiting every night for 12 weeks of uncertainty thinking he wouldn't make 60) - he's survived 28 years since then! Another friend who had stomach cancer successfully treated with no evidence of the disease 8 years on, fainted on a train journey with his daughter and like yours, she is terrified that he is terminally ill and might pass away at any time. I guess that they and you need to be kind to one another - them to find another way to share their fears rather than adding to your burden of thoughts to consider at this time - and you, in reaching out to forums like this and any other specialist help available so you're able to talk to professionals and share your concerns. there are often people on this forum at all hours day and night - not all of us sleep well! good luck.
Thank you and I don't sleep much but I know I was never a big sleeper so not that much of a change there ..again although I know my situation is different It gives me a lift everytime anyone mentions years ..funny how elated I felt when the consultant said if I was suitable for this trial I could possibly have a year or if I reacted very well even 2 years was possible .after having been told 2 days earlier that I probably won't get to Christmas not in those exact words but the same meaning ..my husband passed away just over 7 years ago front liver cancer but he sadly had other health problems which didn't help him .and my sister last Sept after 4 and a half great years with melonoma .so to me even 1 year at the moment is my goal ....hope you continue to keep living with this disease which I am sure they are on the cusp of finding a cure meanwhile head up and one foot after the other till we all reach the finishing line healthy .and happy ..x
I met a clinical nurse specialist (for GI cancer) at the roy Castle conference who'd been told she had stage iv lung cancer (never smoker so a shock to her) and was told she had 6 months to live. She took part in trials (arissa and tarceva) and lived 4.5 years - long enough to see her daughter marry and to start up a patients forum (moderated by Roy Castle) on Facebook. She inspired me as she said that I could 'do more with your experience given that you are familiar with the NHS'. I often think of her and another patient advocate I met (from Teenage and Young adult cancer group, Stephen Sutton) as both were an inspiration. They both campaigned for greater awareness and consideration of different types of patients (in Lyn's case, never smokers and in Stephen's, young cancer patients) despite knowing they had limited life. In the last few years, I've met several lung cancer patients in the UK and europe who were told they may have just months or a year at most yet several years on, they're still around. New drugs are being trialled all the time and the understanding of lung cancer has improved no end especially with the increase in genomics and immunotherapy so each new finding can offer hope to patients…. many patients are now being treated with different ways almost as a chronic condition - (not a cure) but still a way of living longer and with better quality of life. Here's to many new discoveries about the different lung cancer types and new treatments….
Janette THANK you so much for that incouraging post ..it is exactly what I think yet I don't know anyone who has gone through trials ..but I felt their has to be people out there who took the oppertunity and got more that the few mts originally predicted ..you have given me more determination to nit give in to this illness God bless you with good health xx...
Thank you so much I hope you are feeling much brighter today ..regarding the trials it is my only option so I will give it my all with belief and hope ..when I was told I would not see Christmas then told I might be suitable for a new trial it was like winning the lotto lol lol ..light at the end of the tunnel even if it is a long hard road ..50 out of 100 is very good odds so if
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Treatment plan day for me today at 10am. Wish me luck I'm so so scared 🙏🤞
Mum diagnosed with stage 4 lung cancer which has spread to pleura
After two negative biopsies doctors still believe is lung cancer.
Hoping for some advice
