Genie123

Hi sorry to here your sad news, if they hv done a biopsy then they will now if she is suitable for target therapy, and people seem to do well on that, but, also yu can get side affects with this treatment, but some people get very little, so hope yr mum is suitable, all the best. Jean

Yhp22 in reply to Genie123

I forgot to add that she was 52 and my baby sister.

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Yhp22

My sister sadly was stage 4 non small cell lung cancer when she was diagnosed after months of pain in her shoulder and going to see the doctor on a regular basis AND having had breast cancer in her twenties and they didn't join any of the dots up which I still find astounding. This was diagnosed in the January 2013 and she commenced chemo and radiotherapy together in February 2013. It was brutal in every way and for what? She thought as it was non small cell that she had a chance of getting more time with us. I now feel and it is a very personal view that we should have just taken the time left and kept her out of pain and also given her the chance to put her house in order. She had an horrendous end of life which has scarred me for life and caused me huge traumatic stress. To this day I cannot talk about it in detail and probably never will. She was failed in every way. She died in July 2013 but her suffering was immense so in reality we lost her as soon as she started the treatment. We were NOT well advised or informed and the stress and emotion that everyone is going through does not allow you to think clearly. So given that time again and knowing what I know there is absolutely no chance of us making those same choices.

My sister wasn't a candidate for the mutation and if she had it could have been a different story. The ONE thing that I would recommend is PUSH for a brain scan NOW. Lie if you have to and say she has horrendous headaches because my sister went through all that treatment without a brain scan and despite the tumour shrinking by 50% nobody looked at her brain. We will never know but I suspect it had gone to her brain during the treatment or before and in the end that is what took her and very rapidly but the pain was indescribable. If we had known about the brain issues we would NOT have taken anything other than palliative treatment.

So get as much information as you can and if possible try to have someone to help YOU ask the questions and not just the specialist nurses because ours appeared to be good but with hindsight they weren't. I had to PUSH for everything but most of it was worthless in the end and it was exhausting and now 3 years on I still get angry and upset at how useless I felt due to my lack of understanding and knowledge so please ASK ASK AND ASK. It is an horrendous journey but if those you love are not in pain it is easier to bear.

I don't want to scare you but equally I think there is a lot of false hope out there especially with stage 4 lung cancer.

I wish you all the best and hope you get to make the right choices.

Yvonne

wendybsouth in reply to Yhp22

Thank you Yvonne. Fortunately mum isn't in too much pain, just twinges in ribs. It's mainly the breathlessness that is causing her distress. No cough, just more phlegm so needs to clear throat.

I'm a nurse so I'd already asked for CT of brain and abdo. It has spread to pleura, nowhere else as far as we know yet.

I sourced a professor in oncology myself in Liverpool, about 25 miles from where mum lives but his profile is excellent so fingers crossed he can recommend a treatment plan.

Tomorrow mum just gets confirmation of biopsies (of which I know results as the oncologist in Liverpool emailed me) and they will then refer her into oncology, but no need as I sorted that myself.

I agree there is not enough care taken in looking at patients histories. It annoys me that they told my mum she had pleurisy in September but no follow up! Then a chest infection ? Pneumonia in January needing 2 courses of antibiotics and no more investigations! A previous lung cancer patient who is still having checks and they don't follow up!

When I think about this- 10 months of possible symptoms of recurrence but no further tests!

Tomorrow I will be asking for the report of her XRay in September, copies of her routine check up notes also in September. Oh and a copy of her recent CT scans and pathology reports.

I do have faith in her oncologist but not her GP or current DR who's been doing her post cancer check ups since 2012 when he removed a lobe.

I can imagine your pain and anger, sadly stories like this are not uncommon but I know there are some success stories too. X

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Inula in reply to Yhp22

Im so sorry for your loss and trauma Yvonne. What a difficult point you have put across and quite brave too because this isn't what people want to hear but is sadly often the truth. I find myself frequently changing my mind about replying to people with this awful disease because I feel there is very little hope once tou reach stage4. My husband passed away 10 weeks after diagnosis even though he was having chemo and r/t and was booked for gamma knife treatment a few days before he passed away. This is a very unforgiving and often ferocious disease. He went from being outwardly fit and healthy and a strapping 54 year old man interested in weight training to a skeleton in just a few weeks. I remember reading a post by a lady who lost her husband in the space of a couple of months and I thought oh God don't let that be us. Sadly it was.

I know there are people out there who battle on for a number of years. That's what we hoped for. Everyone is different.

Even now I'm thinking of deleting this reply because I would rather offer hope than telling our negative story.

Netty

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Inula

Hi Wendy - just wanted to say that I hope your mums appointment goes as well as possible today given the circumstances. I can't imagine how you must feel knowing the results before your mum gets told them officially.

At times like this people say things like Stay Strong. And how brave. Personally I don't like to say those words as I hated to hear them said to us when my husband was fighting LC. So I will just wish your mum and yourself luck and love

Netty x

pea-green-boat

Hi Wendy,

So sorry to hear your news - hope the appointment was ok. Some of the details reminded me of my husband's case. I'm afraid I've written an essay. Hope some of it is helpful.

My husband had stage 4 diagnosis (aged 39) with thickening of the pleura and had pulmonary embolisms diagnosed after chemo had started. Also used clexane and though it's a hassle, it helped him. (his breathing was really bad with the PE). They do have to lower or increase the dose depending on body weight.

Definitely fingers crossed that mutation testing result...I understand that some of the targeted treatments sometimes have a positive effect even if you don't have the mutation, not too sure about that but I think the oncologist said it.

We had put all our hope following diagnosis in getting onto an immunotherapy trial (worth asking about it) or a targeted therapy but drew blanks on both after a really long wait from July to September 2014. Such a tough time as you feel that your actions could make all the difference, and so they could. I was my husband's carer, protector, shouter, pharmacy checker - it was draining but still proud that I tried everything I could think of. Nearly 2 years on, I look back wryly at some of the battles. There were a lot of things that were unnecessarily hard.

If I were there again, there are some things I would put more energy into, but I probably would still try everything again. There was a lot of admin distraction and tests and results took too long to materialise. If you have a really good Nurse specialist, they can make a big difference. Ours was a bit hit and miss. We went for a second opinion at a different hospital and although the opinion was the same, the lung cancer specialist nurse was a superstar and helped get us a prescription of appropriate pain meds.

Hindsight would have had us take a good holiday in the Summer with the expectation of needing to go on palliative chemo when we returned; then any trial or targeted therapy news would have been a good surprise that we could have come back for, rather than putting important family time together on hold. We did do some nice things as a family close to home, but the wait before chemo was very tough. Everyone is different and some people have extremely good responses, even to palliative chemo. It's impossible to predict and the doctors are putting in their best guess, but they don't and can't really know.

My husband died in January 2015, almost 6 months to the day from diagnosis and 9 months from getting pneumonia and chest infections that wouldn't go away. He was very fit and energetic. Still seems insane.

So for things that helped:

If the pain starts to become a problem (sounds like it's not too bad at the moment) then get the pain doctors on the case - these people are incredible in hospitals - really amazing folks in the palliative care departments. They made my husband's life more bearable again after painkillers we had been prescribed didn't work. They also took time to help us understand how the medicines worked. We were panicking about morphine.

If breathing becomes more difficult, then you can get the oxygen machine at home - we piped it upstairs and hung the tubes on cup hooks, but the best was the rucksack thing that you could take with you. It meant he could get out of the house again and a bit of independence and sunshine. There are also things you can rent to travel overseas that actually generate the oxygen.

Hope you have some happy times in between the bleakness of it all.

Lots of love Kx

wendybsouth in reply to pea-green-boat

I agree the wait for the test results is far too long. The stress and worry of that alone is awful for anybody to go through.

Sadly mum can't have the targeted therapy as she doesn't have the mutation where treatment is available. It will be standard chemotherapy.

I'm hoping she will be able to be part of a trial too, fingers crossed and praying x

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JeanneLe

My Lung cancer was diagnosed in November 2014 at stage IV. The doctor said I hadn't had it for very long. Sometime later I queried the actually time scale and he said I'd only had it about 6 months. How accurate this was I don't know. What I do know is I started dancing, rock n roll jiving in the April and was diagnosed in the November. I had no symptoms at all. We had a summer break and when I went back in September I realised I wasn't recovering from the dance very fast and then I had a very sharp pain up my right side when I breathed in really deeply. I went to my GP and she listened to my chest and sent me for an X ray. I was called into the surgery 24 hours after the x ray. I was told it was fluid on the lung but I was put on a 2 week response time for appointments which set alarm bells off. I started off with a CT scan and then the Doctors appointment at the hospital. The official cancer diagnosis was 18th December which is when the biopsy result came through but he had said it probably was lung cancer in November. I did ask as I had done quite a lot of research by then.

I was given about 6-12 months and 18 months on I'm still here and no intention of going. I had 4 sessions of Chemo finishing in April last year and 5 sessions of radiotherapy in January of this year. I was put forward for a trial but I'm not suitable as its not aggressive enough. The pain has increased and I am due to have another CT scan with the probability that I will go on another chemo.

I feel I'm very lucky so far and will keep fighting it but I discovered it can appear very quickly.

I've done it again and written a book when I just meant to give encouragement. It must be good to get it out of my system and I hope it gives you some hope. But just reading everyone's stories you realise it treats everyone of us differently.

Keep Fighting

Jeanne

wendybsouth in reply to JeanneLe

Thank you for your reply. It's comforting to hear so many people are fighting the same disease but also sad so many have to!

I'm confident in the oncologist I've found. I sourced him myself as I wanted the best in the area for my mum.

Wishing you all the best for your journey! Continue to fight! X

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Hidden

Hi Wendy

Could you push for the lung matrix trial, it is personalized to your mother's cancer. If she does go for a trial then she would need a new biopsy as lung cancer can mutate.

I want to give you some positive thoughts, my husband was initially only given six months and with palliative chemo he is no evidence of disease. He is two years and three months from diagnosis in Feb 2014.

Hope you receive answers form you mother's scan but I have found with my husband's oncology care, a radiologist report can vary from each radiologist.

wendybsouth

Thank you. That's encouraging. Had the cancer spread to it be stage 4? X

hilde

Hi Wendy, so sorry to read about your mom. I am 73 was diagnosed with lung cancer November 2014 had 60% of right lung removed followed by 4 lots of chemo. In January/February was having severe pains in back and under bust on my old scar area. After lots of tests and a scan they diagnosed Neuropathetic pain and was given Gasapentin which helped the pain but I was still getting very breathless. Had another CT scan which showed my tumour had returned, a little larger than last time. I saw an oncologist, the same Dr I saw before, she was amazed it had returned so quickly. So I was offered 4 lots of different chemo, after the 3rd session I was to have CTSCAN which I have had and now waiting for the review on Monday, I hope it has worked but fear in case it hasn't. I can feel for you and your Mom, we have to be here on this site and give each other all the support we can. I luckily have two daughters, one very close by but the other in South Wales I live in Shropshire. You mention your Mom has a partner, that is good because we all need someone to lean on. Good luck with the treatment, never give up, I can't advise or give information about her treatment as you think it could be stage 4 , I believe mine is 2 or 3 have never asked. It's a big decision about the chemo as to whether she takes it or not. This last chemo has been very different to the first, but of course like your mom, this time it is attacking a tumour not mopping up any nasties as they put it. Whatever her decision, my thoughts are with you both, take care and good luck

Hilde

wendybsouth in reply to hilde

Thank you for your reply. I hope you get good news on Monday.

How are you feeling generally in yourself? My mum sees her oncologist on Friday so we will discuss treatment then.

She feels in her mind if she leaves it it will continue to grow and she will die sooner than if she had some treatment that could shrink it and stop it growing.

Fingers crossed and prayers for us all. It really is such a worrying and stressful time. X

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hilde

I understand your dilemma, it's a difficult one but there is the chance the chemo coukd shrink the tumour, see what the oncologist advises, but of course you have to decide almost before you see her. It did knock me about but I don't know how I woukd have been without having any chemo, I know part of mine is an aggressive one. Good luck to all of you. And hopefully congratulations with the wedding coming up.

Hilde x

Dayle

So sorry to hear about your mum. I think cancer at any stage should be hit hard with everything the first time, since that is your best chance for survival. They wait and use all of the good stuff as last resort, should be used as first resort!!!!

jonnyd01

So sad reading these replies...but the odd positive outcome so hang on to that...My own personal journey is that my beautiful wife died aged 45 last year 13 weeks after being diagnosed with stage 4 and mets to the brain and a horrible 13 weeks that stopped us from doing anything as she got really ill within 2 weeks ....she had been treated for sciatica and megrane for the past 2 years with no thought of a scan.. i still stop in my tracks at that one as i feel let down by everyone in the nhs...i know there are wonderful caring people in the nhs but sadly we didn't get to see them and because your on a journey you are so not ready for you look back and wish you had fought harder for your loved one and not just accepted everything fired at you. I could go on forever with this but just remember to ask ask and ask again and if your not happy go higher in the chain..knowledge is indeed power. john x

RoyCastleHelplineAdministrator

Hello wendybsouth,

It is good to see so many replies, it helps when going for an appointment to be armed with as much information as possible, the stories in the above posts are honest, it can often be a harsh disease, the experiences of others can guide you in questions that you would like to ask. It is important to remember that everyone's journey is different.

Regards Roy Castle Helpline

Nanna2u

Hi Wendy

After a year of mis diagnosis of late onset asthma for my husband, similar story to your mum, chest infections, xrays show nothing, gp ignoring pleas to be referred, told he has stage4 lung cancer. 1st chemo was last week, told the cycle would be 4 cycles every 21 days (but had appointment for next cycle and its 14 days) first 3 days after chemo was hell, and as his carer and wife of 41 years I mirrored his response. Bad dreams, sleeplessness, poor appetite, exhaustion. He has slept for about three days nearly 24/7, very tearful, feeling confused, constipated, puffy, thrush on his tongue, however reading the literature with the steroids he has been given it seems these are the side affects of this tablet. Yes nausea comes too but tablets for this very good. Day 4 a different man, steroids not needed today, not so tired but still had 2 long sleeps, mood and appetite improving, may even try a short walk later. The oncology centre give an emergency number and advise you to ring whatever the problem, and they are good, pineapple for thrush (it works). Not looking forward to next cycle but they will scan after this session, if tumour not shrinking then its immunotherapy.

Hope your Mum is ok hugs to you both

Molly456mandy

Sorry to hear about your mum. Devastating news.

Last year my sister had similar symtoms and her GP treated her with antibiotics and took a while before sending her for and x-ray. She then had a scan and was diagnosed with Stage 4 but it was confined to one lung. They decided on Chemo but only gave her one session. She lived for 10 months. She would have been better healthwise without the Chemo she had too many side effects.