Has lung cancer affected you, a family member or friend?

[BLFCommsTeam]

If you are living with lung cancer or have been affected by it, directly or indirectly, we’d like you to share your experiences.

- What made you or your friend or family member go and get checked out?

- How were you or your friend or family member diagnosed?

- What kind of treatments did you, or they have and how affective were they?

- How have you coped living with, or caring for someone with, lung cancer?

- Were you or are a smoker or are you a non-smoker?

Lung cancer often develops slowly and it is thought that cells first become abnormal at least five years before the cancer can be detected.

It can develop in anyone, but people who smoke, or used to smoke, are more at risk. Those who have been exposed to passive smoking over a long period of time are also at risk. Non-smokers develop one particular type of lung cancer, called ‘adeno’.

Common symptoms can include: a cough that won't go away, breathlessness, wheezing from that side of the chest, blood in your sputum (phlegm), pain and weight loss.

We've had a great response from the topics we've started so far so we are interested to hear your answers!

[fredsell]

I was diagnosed with lung cancer in Nov. 2004. My generalist noticed that my finger nails had changed their shape and sent me for a scan immediately. I was able to see the specialist within the week and he did his tests. I started chemo before the end of 2004. I was operated April 2005, but they did not remove any thing as the PET scan had failed to spot a further infection. More chemo and radio therapy was then clear for the next 18 months. In 2007 I had to have more chemo, and was then operated in June 2007 they removed my right middle lobe. I had final chemo sessions a month later, it was a heavy dose and it really hit me and I took a long time to recover. I was diagnosed with COPD in 2009. I have been on O2 since then. Things are now coming together again.

I have been clear of cancer since 2007. I was lucky that I had non-small cell cancer. All this took place in France.

[BLFCommsTeam in reply to fredsell]

Thanks for sharing your story fredsell. Congratulations on being clear from cancer since 2007! It was an unusual spot by your generalist – did you have a cough or difficulty breathing as well? So glad to hear things are coming together since your COPD diagnosis and oxygen use – do keep us posted.

[fredsell in reply to BLFCommsTeam]

I have never had a cough up to now, I was beginning to get short of breath before I was diagnosed. I forgot to mention that I was able to walk three or four times per week and on average walking six km in around 60 min. Unfortunately I cannot do this today

[Hidden]

Yes, my lovely Dad died with lung cancer, many years ago, was told there was no treatment so just had palliative care, including morphine. Was hard for my Mum even though he was an excellent patient - they so oved each other . Think he finally went to Doc as he was really poorly and losing weight. He went into rapid decline soon after diagnosis. The hospice staff were wonderful, even moving his bed to see the trees he loved and used to paint...he appreciated nature's beauty till the end. He began smoking as a teenager when the army supplied them to soldiers in WW2.

[BLFCommsTeam in reply to Hidden]

Thanks for joining the conversation Julie and sharing your story. It just shows how important it is to get an early diagnosis. Glad to hear the hospice staff were so helpful and made your dad’s time with them comfortable. As more money is being invested into the research of lung cancer, hopefully in the future better and more effective treatments will be available to those living with lung cancer.

[tanyamarie]

My father in-law was diagnosed with benign brain tumor and had it removed. He had the all clear. We believe that during the op, he suffered some nerve damage because he started having difficulties with his right leg and having to use a walking stick. This was December 2009. Then early next year he was travelling in a car that skidded on black ice and knocked his leg which seemed to aggravate him further. He knew something was wrong and went to his GP.

Cancer was diagnosed and we were told that he would be treated with radiotherapy. This did not work and he was placed in a hospice but apart from using O2 and being confined to a wheelchair (his legs would not work by now) he was okay. He clearly wasn't "ill" enough to be there and they "kicked" him out or so we teased him and this gave him great hope. He was moved to a care home where pallative care was provided and week by week he declined.

He was in alot of pain by this point and totally bed ridden but he refused to give in and even though I was heavily pregnant now, my husband and I would take him out in the wheelchair or even struggle and get him in our car and take him to his favourite fishing lake.

Every day we would visit and he would see my bump walking in the room before me and complain that he or she hadn't arrived yet. The night before my due date we sat with him in his room and he watched the golf on tv. I held his hand and stroked him but sometimes he wasn't with us mentally, he would drift off someplace. We explained we wouldn't be there the next day as it was the day the baby was due and the next time he would see us he would see his new grandchild.

He died the next day.

I like to think that he held on for that reason so we gave him the honour of calling our new baby daughter Leah Toni after my father in-law Tony. Shee arrived 4 days before his funeral.

His death certificate said lung cancer. So it had spread all over his body and we didn't even know. But we were told that it had no connection to the benign tumor in his brain. He was on morphine for the pain but it was so severe at times he would cry with every movement. He was a smoker so maybe that was the cause. It was hard seeing him suffer and there was nothing we could do. Now my own father has Pulmonary Fibrosis and is declining rapidly and I know how hard the journey will be for him and agian there is nothing I can do.

[BLFCommsTeam in reply to tanyamarie]

Thank you for posting Tanya. So sorry to read about your father in law. It was a lovely idea to name your daughter after him. Indeed sometimes people are listed as dying of something other than what seems to be the main problem and it can be a shock. Remember BLF are always here to provide support for you and your father – we’re only a phone call away. The Helpline number is 03000 030 555.

[lescudjack]

I started smoking while still at school around 1950, when it seemed that everybody did. My working life brought me into contact with what are now classed as hazardous materials. In the nineteen eighties while working shift work for a surface mining company and renovating our family home I had the first symptom of a health problem. Whenever I sat in a high backed seat there would be a slight pain under my left shoulder blade and breathing would be restrained. I ignored this for five years, after all I felt all right, hadn’t lost weight, no cough - must be a shoulder muscle I reasoned to hide my growing doubt. In the hot summer of nineteen eighty nine, within weeks, a twenty four hour cough developed and my temperature was swinging up and down - at this time I stopped smoking and was sent to see a consultant. A broncoscapy revealed, surprisingly, a cancer on the right hand side and I was given three options - chemotherapy, radiation or surgery. It was in my favour that my condition was thought to be operable so I chose it and was given a right pneumonectomy. Follow up procedures found no evidence that the cancer had spread and within six months I was back at work. However I didn’t manage to escape completely the surgery had left bacteria in the chest cavity and within twelve months I was back in hospital again for more surgery. Over the years since I was admitted many times with chest infections until five years ago my GP set me up for “treat yourself at home” and so far it’s worked well and I haven’t required an admission since . Next month I will be seventy four with an FEV1 of around 16% I don’t get up to much but my wife sees I’m well looked after and we see our grandchildren most days - all things considered I’ve been fortunate to get this far - no complaints.

[BLFCommsTeam in reply to lescudjack]

Hi lescudjack - Thank you for sharing your story. So glad you’re able to manage your condition from home and that your wife is able to look after you. It’s inspiring that you have been through so much and still have no complaints! Belated birthday wishes for your 74th.

[al1969]

Hello ,reading this question made me think....yes i have

I lost my eldest brother last year in 6 weeks to lung & kidney cancer.The hospital in telford were terrible,ill mannered, not caring, left him in A&E for 11 hours ,asked for a pillow as he also had a collapsed lung got told no. SO SAD really.

He died in the same ward as my dad did the year earlier & to top it off my middle bro was getting over loosing a kidney due to cancer...........................

That's why I'm here after all that i was fast tracked with with the doctor,so apparently no cancer but under a cancer specialist still, but i was diagnosed with Alpha 1 Pizz instead,all the look..My health has deteriorated over 4 months really struggling & always on steroids & puffers,its hard.

My fev is 44 % and classed as severe alpha obstruction."such is life". every time at at-the specialist my 02 is 92=94% i walk to the car park I'm cream cracker ed but no oxygen assessment yet.

hopefully next time

currently looking for a bungalow as stairs & steps are doing me in .

apart from that I'm happy ,i have my 2 girls 7 top wife.

thanks for asking & thanks for listening

[BLFCommsTeam in reply to al1969]

Hi al1969 - So sorry to hear about your brothers and dad. It sounds like you’ve had to deal with a lot of health problems in your family all at once! Despite the fact you say you’re struggling with your breathe you sound like you have a really positive attitude, which is really important! I hope you find a bungalow that suits and you can stop tackling the stairs. Keep us up to date with you progress and if you need any advice and support, and you haven't already, get in touch with our Helpline team on 03000 030 555.

[BLFCommsTeam]

Hi Gordon57 – Thank you for sharing you and your mother’s story. Sometimes it is difficult for people to challenge a doctor’s opinion and ask for more information – well done your mum for persisting with her point! The campaign was only launched very recently but your mother’s story is a great example of going to get checked out and persisting with diagnosis. Hopefully with this campaign and the growing awareness of lung disease and cancer in general, people will get diagnosed earlier and be able to receive treatment or spend more time with their friends and family.

[BLFCommsTeam]

Thank so much for all your fantastic and insightful replies. It’s been really interesting to see this blog develop. Keep sharing your stories! As you can see from the stories here – lung cancer can affect all sorts of people in all sorts of ways.