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[monica91]

Hi there, in February of this year my mum was diagnosed with stage 3B squamous cell non-small cell lung cancer. It's been an emotional roller coaster. The doctors have been very positive about my mum. She was given aggressive chemo and radiation which she completed 2 months ago and recently started on immunotherapy. Her scan shortly after finishing radiotherapy showed a reduction in the tumour by 22mm (almost half). The doctor said that it's excellent news. The doctors also seem so surprised that my mum looks so well for her age and is in such good shape (she turns 71 on Sunday).

My mum is doing really well. She's got her energy and zest for life back. She's very positive and is determined to beat the cancer. I was positive as well, but I'm scared to be too positive. I'm scared what if the immunotherapy doesn't work and if it does, the effects won't be permanent.

The doctors said that they're aiming to cure my mum, which is incredible as typically stage 3B lung cancer cannot be cured. I've been reading a lot on the internet about lung cancer and it's made me feel very anxious. A lot of the articles contradict themselves; some say stage 3B lung cancer can't be cured, others say it can. Others say squamous cell doesn't have as good a prognosis as other cell types, others don't really point out that there's a difference between adecarcinoma and squamous cell. Other sites say that there's been big advances in treating lung cancer especially at an advanced stages, whilst others say that the outcomes are still poor.

This makes me feel more anxious. Would they offer my mum immunotherapy if they didn't think that her cell type was compatible? The immunotherapy they are giving her is part of the treatment plan and isn't experimental.

I want my mum to live for as long as possible. We joke that she'll live to 102. I really hope that she does (obviously as long as she's not in any pain or suffering). If the doctors are aiming to cure her, does this mean that they hope that she'll be cancer-free and it won't come back?

[JanetteR57]

Welcome to this forum Monica. It's good news that your mum is being treated and immunotherapy is still a relatively new treatment for lung cancer so the data and statistics are woefully out of date. There has always been varied discussions about the best way to treat stage iii and it is a regular feature at lung cancer conferences and workshops I attend. It is a lively debate topic as all the disciplines - radiology, oncology and surgery (as well as nursing, radiography and pathology) all have an interest. In recent years the optimum way of treating it has been multimodality - i.e. more than one type of treatment and there are many clinical trials and research globally about which is the correct/best order to give the treatments - i.e. which type first, how much of which, when, when to stop etc hence the lively debate. My diagnosis was in Jan 2011 after surgery to remove half my left lung in Dec 2010 and mine was a 7cm adenocarcinoma. I read about the specific type and asked a lot of questions. At the time there were no online forums, very little research and few treatments. After a couple of years I became involved in cancer research advocacy for lung cancer and have been astounded at the progress made including with stage iv. Do not give up.... I've met patients who have survived 20+ years even with stage iv before most of today's treatments were around.... I was told staying positive helped - and I've also seen where those giving up didn't do so well.... so your mum's approach sounds great. One thing to recognise - which I didn't until I became so involved in research is that when researchers are bidding/applying for funding for their studies, they have to paint the 'bleakest picture' to ensure the message hits home about the need for research but when the data is drilled into, there are many more nuances than the headlines suggest. I used to work in economic development to attract businesses to the region and remember doing the same - when we wanted government support and funding, we had to say how dreadful our transport infrastructure or access to skilled people were yet when we were selling the region to potential investors, our arguments were the opposite. Statistics include everyone with the condition - so many will be much older than your mum, many have other conditions, many have been exposed to carcinogens for a large part of their life (smoke, asbestos, radon gas etc), some may not be at all fit, so as with one size fashion that rarely fits anyone, statistics are not the whole picture.

I'd encourage you to use trusted sites for lung cancer information such as Roy Castle lung cancer foundation that regularly updates its information from clinicians and reviewed by patients. If looking at research papers and abstracts, always important to look at the year and month of their publication and the study itself as things move very quickly in terms of new knowledge on lung cancer.

Treatments now for lung cancer are much more targeted and personalised based on the tumour characteristics and genomic characteristics of the patient and immunotherapy and targeted agents are used to attack the specific parts of a type of cancer and get the body's immune system to trigger a response. In the same way, several people could walk through a field of grass and be ok and others may sneeze/stream eyes/nose due to their body's immune response, doctors can never predict who will respond better to immunotherapy than others. There's no magic formula - none of us has a definite 'sell by' date stamped on us. I remember worrying when I was in my 20s about my dad who developed bowel cancer in his late 50s (twice) that he wouldn't reach 60. He's now my mum's carer (alzheimers), had another bowel cancer in 2016 (another radical resection) and was 90 in February.

Good luck to you and your mum and hope she continues to respond well to her treatment. It's a lesson to make the most of life and our loved ones whilst we have them.

[monica91 in reply to JanetteR57]

Thank you so much for your reply JanetteR57. There does indeed seem to be a lot more advances in treatments for lung cancer, which is positive. My mum's oncologist seemed very positive and made it seem like treating lung cancer was a piece of cake. When my mum asked whether it's true that lung cancer is one of the hardest cancers to treat, she said that it isn't. She also said that they're aiming to cure my mum. And another doctor confirmed that they're aiming for a cure when I asked. I really hope that they manage to.

I worry about what if initially the treatment is successful but the cancer returns again. I really hope that it won't but I hope that there are lots of treatment options if it does. I think that I'm more bothered by my mum's cancer than she is. My mum tells me to stop worrying and that she's not worried. She's far more worried about her aneurysm than the cancer. My mum is extremely positive and she's been in really good health lately. Touchwood that it continues. I too think that a positive attitude is important as those with a positive attitude are more likely to do everything that they can to get better and take opportunities. My brother and sister-in-law are struggling to have kids and have a 5% chance, but my mum keeps telling them that it's still a chance and to go for IVF, which they are being offered, but they are unwilling to try. Both are really negative and have given up before even trying, so I can see what a big difference attitude makes.

Thank you for also giving me hope. A lot of sites say not to read too much into statistics (the more reputable sites) and that every person is difference and stats don't take into account latest treatments. I hear more about breast cancer related deaths than anything, despite breast cancer supposedly being the easier to treat with a good prognosis.

[JanetteR57 in reply to monica91]

It's often about general awareness and perceptions - we grow up hearing a lot about breast cancer as women - every magazine features regular articles and a whole month dedicated to fundraising, awareness raising has brought a general discussion point to most people for over 20 years. Sadly we have much to do to raise awareness about lung cancer and the developments made in treatments as well as the fact that many people who develop it are never smokers so the public needs to know that anyone can develop it. The facts are that lung cancer is the largest killer cancer of both men and women in the UK and many other countries but the amount of people who develop breast and prostrate cancer is higher but they live longer so at any given point, there will be more people with the other two than lung cancer. In recent years the ability to treat it more as a chronic condition has become a reality for some and every treatment mode has changed to become 'kinder' or less damaging - from surgery now being majority keyhole for lungs, fewer radiotherapy sessions or oral chemo to tablets and IV immunotherapy, using the body's own defence mechanisms, there is a global race on and concerted effort to share best practice. Sadly as your oncologist there are other cancers where the same progress hasn't been made. It's understandable to fear recurrence/return of the cancer - I found the book 'cancer is a word not a sentence' by Dr Rob Buckman helped me with this as for a while every symptom I had I thought may be related to it returning and this helped me put it all in perspective.

[monica91 in reply to JanetteR57]

There is far more information about breast cancer than any other type of cancer which sucks as other cancers are just as important and should be funded just as much. It's good though that there's been progress and advance in treating lung cancer. The first doctor we saw who suspected that my mum had lung cancer said that 10-15 years ago it would have been bad news for my mum. I really hope that she becomes a success story. I'm trying to hold onto the positives.

I can't seem to find any statistics on the likelihood of lung cancer returning. Some say it's around 30% and other 66%. It's hard to know. I'll try out the book. I hope that even if the cancer does return that it can be gotten rid of again and that there will be more treatment options.

It seems like a lot of non-smoker get lung-cancer and adencarcinoma occurs most in non-smokers. My mum was a smoker; she used to smoke quite heavily but gave up 14 years ago. The type of cancer she has, squamous cell, is linked to smoking. I'm happy that my mum no longer smokes and doesn't plan to go back to it. I just hope that not smoking helps boost her survival.

[JanetteR57 in reply to monica91]

Breast cancer managed to gain some very powerful and rich influences into their early lobbying - I don't take anything away from the great work they do - I'd just like other types of cancer to do the same in helping us all understand the current situations so diagnoses are met with realistic thinking rather than outdated attitudes.

I don't raise the point about smoking in any negative way - we all develop conditions throughout our lives - some are lifestyle related (my partner has diabetes for example) but actually smoking often increases the tumour mutation burden so provides more targets to aim for with targeted therapies. Not all smokers develop lung or other cancers and many non smokers do but at last research has provided the evidence that lung cancers are more complex than previously thought and developed treatments for some types and others in development all the time.

I've met patients who were told they stage iv 8 years ago and told they had limited life - one told less than 6 months but due to her mutation, (EGFR) took place in two clinical trials for agents that are now standard of care for lung cancer. She lived 4 years 4 months and died a few years ago - long enough to see her daughter marry. Another was encouraged that if it returned, there would be new treatments available and if eligible, he would have them. He did... and also lived several years beyond initial suggested prognosis. Both had widespread advanced lung cancer and as your oncologist said, a few years ago their outcome would have been different. Both died before immunotherapy came on the scene to the extent it is now offered - used to be kept back until all other types of treatment had failed....

The evidence is that giving up smoking helps general health but also that cancer treatments work much better by not smoking and damaging the lungs/airways further. Long may she continue her recovery and return to a vibrant life.....

[monica91 in reply to JanetteR57]

It's good that there's more treatment and longer survival rates for people with stage 4. My mum has stage 3B where it hasn't spread so hopefully her outcome will be even better. My mum knows people with stage 4 cancer who are still alive after many years. She knows a woman who has had metastatic lung cancer that keeps returning for 8 years and she's still alive and doing really well. Another friend of her has had cancer come back three or four times (different types of cancer). His latest cancer spread, but he had immunotherapy and has been NED for three years. It gives me hope, but I don't want to get my hopes up too much. It seems like this decade has seen the most advances in cancer than ever before. Hopefully cancer will become more and more like AIDs; no longer a death sentences; a condition that can be cured and if not, can be lived with and controlled.

I think that certain lifestyle choices can cause cancer like smoking, but like you said many people who don't smoke also get cancer. I've heard that obesity can cause cancer but I don't know how true it is and there are people who are not obese who get cancer. There are people who are fit and have extremely healthy diets and still get cancer. My friend's dad died from pancreatic cancer; he was a healthy BMI, never smoked or drank. One of my brother's friend's got aggressive breast cancer; she was normal weight and didn't smoke or drink to excess. Whilst things like smoking, drinking and tanning excessively and being exposed to chemicals definitely can and often does cause cancer, a lot of people who don't do these things also get it too.

Thank you for your positive wishes about my mum; I too hope that her recovery and good health long continues. What stage were you when you were diagnosed with lung cancer? How did you fair after the surgery?

[JanetteR57 in reply to monica91]

as you say, treatment responses and recovery vary considerably. there are links to diet and some cancers (e.g. bowel) but again this is a blunt instrument. I've stopped being so focused on obesity - having lost 6 stone without dieting due to adrenal chaos due to steroids having been stopped suddenly and gained weight again due to meds/thyroid now showing some issues. My wardrobe goes from size 8 to 20.... and know that obesity is also a multi faceted result not just from lifestyle but also medication or health conditions that prevent all of us from being olympic athletes. I'm part of a group looking at nutrition and cancer and lung cancer is one of the few not related to diet/obesity. My dad never smoked, drank and has never been overweight yet had 3 lots of bowel cancer... Life is a lottery.... a year ago we lost my niece aged 33 from a bleed on her brain just 17 years after losing her mum (aged 40) when she was 15.... so none of actually know how long how life will be - but need to make the most of it.... mine was 7cm stage 2b (would now be considered 3 due to reclassification of the specific type I had). I was back at work and swimming 3 months post surgery but struggled with breathlessness going up stairs or hills for some time. generally I feel very luck to be alive and thank the surgeon and even more the person who sent me for a Chest x-ray in the ER without whom I believe I would not still be around.... good luck .

[monica91 in reply to JanetteR57]

Life is indeed a lottery sometimes. The most important thing is to enjoy life though not to excess. Obviously I don't advise anyone to smoke, as it not only can cause cancer, but many other problems. It's important to eat healthy and do exercise (it's good for overall health and for feeling better and healthier within yourself), but no special diet is proven to work against cancer. It's important to enjoy life; eat, drink and enjoy yourself.

What was your TNM stage if you remember? My mum was diagnosed as T4, N2, M0. Her tumour wasn't that big; 3.7cm so I don't know why it has such a high T stage. At her last scan in May, shortly after finishing radiotherapy it shrunk to 2.2cm.

I always thought that tumour grew as big as they could and then started spreading to lymph nodes and elsewhere. 7cm is pretty big for a tumour. A lady who I work with said her mother had lung cancer and the tumour was a size of a fist. She said it couldn't be removed but they got rid of it and 10 years later her mother is still alive.

I don't know if you know the answer to this question, but how do doctor's get rid of cancer in the lymph nodes if they can't operate? Is chemo used to get rid of it from the lymph nodes?

[JanetteR57 in reply to monica91]

My T stage was T2, N0 M0 - the 4 could be due to it being in lymph as well as lung. Since my diagnosis the organisation that determines these measures (IASLC) has reclassified things twice adding much more granularity now to the categories - they're currently using version 8 TNM8 if you try to look it up online.

There is more detail in Roy Castle lung cancer website about dealing with a diagnosis. roycastle.org/about-lung-ca...

some tumours don't grow so large but spread - there are different types and they react differently - some tumours are a mix of more than one type which is why pathology is so important from the biopsies. I work with a colleague in patient advocacy who had a tumour the size of a football that was removed from his stomach then told it wasn't that dangerous (GIST) so generalising isn't always useful as patients can have different conditions too - some of which mean they aren't eligible for say immunotherapy is they have an autoimmune condition like Crohn's, arthritis, Lupus, etc.

There are many ways of treating cancer - once it starts travelling around the body whether in lymph or blood, systemic treatments are usually used which can be radiotherapy, chemotherapy or immunotherapy that blitz the whole body rather than being specific like surgery. some types of radiotherapy are very focused beams so again important to understand the specific type that may be offered. for some targeted agents work well on a systemic basis - some of these are intravenous and some oral tablets but depend on patients' own tumour and genome characteristics to determine eligibility.

Such a complex field now - all I hear at workshops/conferences is that lung cancer has much more 'heterogeneity' than anyone ever imagined and a lot of this detail is only now being discovered. until a few years ago less than 5% of all cancer research was invested in lung cancer whereas thankfully that is now changing around the world.

[monica91 in reply to JanetteR57]

I feel really stressed as I worry what if my mum's lung cancer will be more difficult to treat and what if her TNM numbers aren't good. The doctors don't seem discouraged by those numbers and where the cancer is. The first doctor was saw was a lung specialist who predicted my mum's cancer and said it was treatable but not curable, but the oncologists say that they're aiming to cure it. Also another doctor said that the cancer wasn't aggressive when I asked.

Maybe tumour size doesn't matter too much. I measured my mum's tumour at it's original size 3.7cm and that still seems pretty big when you put it into perspective. I feel so much anxiety; my mum doesn't even worry about her cancer that much. I always compare her to other people like my friend at work whose mum survived lung cancer. I think; was she in a much better stage with the cancer, did it spread to the lymph nodes and grow into other structures. I think that my mum is also a T4 because the tumour grew into other structures within the lung.

Sorry for blabbing on, I just want my mum to beat this wretched cancer. I feel mad at myself that there was no way that I could have predicted her cancer. She didn't have any symptoms apart from wheezing and breathlessness but she had that for years and I didn't think it could be related to the lungs. I should have been more intelligent and thought that it could be to do with the lungs and encouraged her to have a CT scan. Then maybe it could have been caught at an earlier stage like yours.

[JanetteR57 in reply to monica91]

Gosh Monica - you sound such a good daughter and rightly worried but none of us were experts when we were diagnosed and things have changed so rapidly in the area of lung cancer knowledge and treatment in the last few years, there's no way any article or measurements or positive clinician can accurately what will happen. It's fine - you're not blabbing on - concern and curiosity are healthy to have...

However what they have said is that for many lung cancer is more like a chronic condition - terminal but treatable is how many are living for years with it.... and having to adjust their mental headspace and that of their loved ones to adjust to that. People with HIV had similar adjustment some years ago to move on from the 'automatic death sentence' they had known previously.

What isn't known is what people's response to treatment will be - there are averages, there are predictions, there are models but like any such plans, not that many of us fit the exact criteria used in a particular trial or pattern. My tumour would now be staged as T3 but I don't fret - it was removed by surgery. I've had more episodes in hospital in the years since then than at any time in my life - only previously hospitalised for tonsils to be removed when a toddler and 16 for asthma. Whilst it was hard not to think about whether these were the cancer returning, none have turned out to be (thankfully). but we have to move on with our lives or we would forever be stuck at the fearful diagnosis stage. Apart from these I returned to work, travel and swimming within months and by and large, live a regular busy full life. It's not your fault your mum developed cancer and there is nothing you could have done to prevent it..... please don't blame yourself. I know where you're coming from - we lost my partner's father suddenly one year, his mother a year to the day then my younger sister the year after that.... none of them foreseen and all relatively young 70, 69 and 40. Then last year losing my 33 year old niece to a bleed to her brain just 17 years after cremating her mum.... but we cannot build up these as a pattern and blame ourselves. Life is full of ups and downs and none of us know what is in store for us - appreciating life's rich pattern, and sad losses is a part of it all..... remembering the things we loved about those we hold dear is important, creating memories and precious times with those whilst they're here amongst us and not being too frightened to venture to live our best life are so important.

I've lost friends and colleagues and fellow patient advocates along the year and yes, sometimes I feel guilt at surviving but deal with it by believing that things happen for a reason.... and now put a lot of energy, time and passion into advocating and improving services for others and raising awareness.

Hopefully by supporting your mum and recognising the importance of a balanced life in terms of health, you'll find what matters to you. Wishing you and your mum the best of luck as you come to terms with her diagnosis and recognise that treatments are sometimes to control symptoms, sometimes to reduce or remove the tumour and sometimes to create a response in our body to trigger its own healing mechanism.... I'll keep everything crossed that your mum continues to respond well to the treatment and that you can support her with her continued response and recovery...take care.

[JanetteR57 in reply to JanetteR57]

Incidentally the helplines run by Macmillan and Roy Castle lung cancer foundation offer support to relatives not just patients so you could always give them a call and explain your concerns and hopefully they can reassure you too....

[monica91 in reply to JanetteR57]

I've tried MacMillan before but they weren't that great. One of the nurses I rang and spoke to was really negative and made me feel even worse.

My mum not being around is inconceivable and I know it's not her time; she has too much life left in her. I will never give up on her and helping to make her better. If things don't work, I will research to get her the best treatment. For me doing nothing is not an option. I have a brother who was born with a very rare brain tumour and my mum fought endlessly for him. He is very severely disabled and it is not the outcome that my parents strived for but he is still alive and has defied many odds.

My late cat was diagnosed with two brain tumours in October 2016 and the vet gave him 2 months, 3 max but he survived for 3 years and 2 months which is remarkable for a cat especially such an old cat (he was 19 and a half when he died in December last year). My mum and I refused to give up despite my other brother and vet telling us that we should put him down. We absolutely refused! He had his periods of good and bad health, but he had a good quality of life up until he died. We had to put him down then because he was in such a bad way and we knew it was his time.

I can't lose my mum; she is my everything. I know that one day she has to die but it's not her time. I lost my dad when I was 14; and even though I'm 28, I can't lose my mum.

I really hope that treatments in lung cancer keep progressing and increasing survival further and further. All I can do is pray to God and hope that the doctors and latest treatments will heal my mum.

[JanetteR57 in reply to monica91]

your strength and fortitude will serve you and your mum well as it has done so far. keep supporting your mum. sorry to learn Macmillan weren't so supportive for you.... hope you fare better with Roy Castle if you try them...good luck.

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hi ,

I have been reading your posts and replies from JeanetteR57. Please don't hesitate to contact the nurse led helpline 0800 358 7200 from 9.00am-5.00pm Monday to Thursday and 9.00am-4.00pm Friday if you would like to speak to one of the nurses,or email [e-mail]

Regards,

All the helpline support team at the Roy Castle Foundation

[flatterycat]

Hi monica91

I have just read your posts and wanted to say that I’m in a similar situation. My mum was also diagnosed with stage 3b LC. From Feb to beginning of April she had xrays etc, then was told it was lung cancer. I, like you, was devastated. Although my mum is 74 she doesn’t look it, is still really fit and is actually still working too! Like you, I don’t see my mum not being around, it seems unthinkable. My mum’s nsclc is adenocarcinoma, so in that respect different to your mum’s. My mum was also told it wasn’t curable. She has just had her third round of treatment- two chemo drugs and immunotherapy. The only side effect so far has been severe fatigue around 4 days after each session. She is due a scan after her next round, so we will get an idea then if it’s working. My mum’s obviously worried, but she’s very positive and getting on with things. The only thing that really bothers her though is her weight loss. She lost her appetite long before her diagnosis and put it down to other things. Since then though she struggled to eat which just made her lose even more - she’s already naturally slim, so this doesn’t help either. Her appetite is now much better, but the weight is still an issue for her. I just hope that it will get better soon as I know she will feel much better if she can see that she’s gaining weight again.

Anyway, I wanted to say hi and let you know that I understand the anxiety you are feeling x

[monica91 in reply to flatterycat]

Thank you for your reply flatterycat. It's tough but it's good that both our mums are strong. I think that strength and positive attitude always helps. I'm sure your mum will get through it.

The first consultant (he was just the lung consultant not the oncologist) said it was treatable but not curable but my mum's oncologist and her team are aiming to cure her. I think it depends on the doctor. Some doctors don't like to use the word "cure" for cancer. Even if cancer can't be gotten rid of, it can be managed like a chronic illness. My mum has met many people at the hospital with stage 4 cancers and have been living with it for many years.

My mum finished her main treatment and is now having immunotherapy. I've heard really positive things about immunotherapy. I'm just glad that my mum is elligible for it.

[flatterycat]

It’s great that your mum’s oncologists are aiming for a cure. They must feel very positive to say that. My mum’s oncologist is very good, but he has agreed that it’s a case of managing it, rather like a chronic illness as you say. If I think of it like that it makes it easier to think about. My mum is having her immunotherapy at the same time as her chemo. Each session she has the chemo first then the immunotherapy. Unfortunately her PDL1 expression was less that 1%, however they obviously felt it was still worth giving her the immunotherapy.

X