My mum has non small cell lung cancer... - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation

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My mum has non small cell lung cancer that has spread to the bone in her leg. Has anyone got any information or experience regarding this.

sarahlou1 profile image

My Mum who is 55 has recently been told that she has terminal non small cell lung cancer. This has completely thrown us as she hasn't really had any problems with her breathing. What made her go to the GP was because her leg had swollen and was very painful. After scans on the leg the Drs spotted abnormalities in the bone and a shadow on her lung. It turns out she has lung cancer that has spread to the bone. She has recently had a pin fitted in her leg to strengthen the bone. Her leg remains swollen and very painful. Has anyone had any similar experiences? she will hopefully start radiotherapy and chemo in the coming weeks.

Thanks for taking the time to read this.

Sarah

12 Replies

Hi Sarah

Sorry to hear of your mum's situation. I'm afraid I can't give you any advice, other than to get in touch with the lung cancer nurse specialist where your mum is being treated, and they'll give you the best advice possible.

Best wishes, Bill

So sorry to hear about your Mum, I also can't give you any advice apart from to contact The Roy Castle Lung Cancer Foundation as they are great and will be able to help you out as well as your Mums lung cancer nurse.

Good luck and take care x

Hi Sarah,

Sorry to hear about your mum, I too have stage 4 lung cancer diagnosed when I was 49. That was now 15 months ago. I haven't got secondaries in the bone so can't advice there but just want to say that it ius early days for you at the mo and very scary. I didn't have any breathing problems at all, just a persistant cough. In fact my lung function was higher than average!

Just because it is not curable doesn't mean it is not treatable. I am now stable. I don't like the word terminal (that was said to me too) at the end of the day we are all 'terminal' . I am very postivive and that is what I have in common with other survivors.

Since my diagnosis I have been to Spain twice, Majorca, Cannes, Jamaica and on Thursday we are off to USA for 3 weeks. I am living life to the full and not a day go's by that I don't fully enjoy. Stay postive and encourage your mum to do so, make the most of eveyday you have.

Good luck and stay in touch

Lyn x

Hi Sarah, I am sorry to hear about your mum, I was diagnosed with non small cell lung cancer stage 3b at the age of 37, 4 and a half years ago I too am stable although I do have a few bad days I have many more good days! I agree with Lyn about a positive attitude although I know some days it might be difficult for both your mum and you.

Some people choose to research and find out everything they can about lung cancer I choose not too even though I am a nurse! there is alot of support from lung specialist nurses, the roy castle and Macmillan and on this site too which will be invaluable especially just now, write down all your questions as you think of them and take them with you to your appointments.

Take care of yourself and your mum,

Chele x

sarahlou1 profile image
sarahlou1 in reply to chelemc

Hi,

Thanks to all of you that have replied to my question. My Mum does have a lung cancer nurse specialist and she is a lovely lady but she only works part time so she can be quite hard to get hold of.

My Mum has told me that if it wasn't for the swelling and pain in her leg she would feel fine so I am hoping that they can give her some Radiotherapy to help with this.

I am trying to be positive as is my Mum. It does help to come on sites like this and find that there are others who are managing/living a life with this horrid illness.

Thanks Again

Sarah x

Hi Sarah

As in the case of your mum my husband's lung cancer was found because he had bad pain in his hip which happend within a couple of weeks. He too had an xray on the hip which found abnormalties, leading to a chest xray also finding a shadow. He also has it in his bones, liver and an adrenal.He has never smoked, has always been very fit and this was the last thing we expected.He had no other sysmptoms;was a total shock !

When we went to the oncology dept the consultant wouldn't

let hm go home as, if he had broken his hip he would never have walked again.

He also had 2 pins in his hip and a dose of radiotherapy.

He was tested for the EGFR but unfortunately proved negative and is now awaiting his first course of chemo.

I send you and your mum lots of love \nd best wishes.xx

sarahlou1 profile image
sarahlou1 in reply to sandra123

Hi,

My mum has been having problems with her leg since last October. The GP kept saying it was wear and tear or arthritis. It went from a dull ache to finally being so swollen and painful that she couldn't put any pressure on it. The Doctors kept fobbing her off until she had finally had enough and refused to leave A&E until they had done something. Within a couple of days they said they thought it could be Cancer. I was totally shocked. The thought had crossed my mind that it could be Cancer but I thought it might have been bone cancer. It never crossed my mind that it would be lung cancer as she has had no obvious symptoms. Once she was admitted to hospital they wouldn't let her mobilise at all in case she fell and broke her leg. She had surgery 3 weeks ago to fit a pin in her leg and her leg is more swollen now than what it was before and she is in agony. She should find out today her proposed treatment plan. I really hope that they start treatment soon as she is getting really down and I hate seeing her this way.

Thanks again to you all.

Sarah x

sandra123 profile image
sandra123 in reply to sarahlou1

Hi Sarah

My thoughts are with you and hope that you get the treatment plan today. Her symptoms and lack of them are the same as in Brian's case. It was a total shock that he had got lung cancer!

The hospital should test her for the targetted chemo and I'll pray that it proves positive for her.

Brian's first course of chemo is the week after next.

Keep in touch and try and stay positive.

Much love

Sandra x

sarahlou1 profile image
sarahlou1 in reply to sandra123

Hi Sandra,

Thanks again for the reply. How long did it take for your husband's leg to start healing? Hope that the chemo goes well for your hubby.

Take care

Sarah x

sandra123 profile image
sandra123 in reply to sarahlou1

Hi Sarah

It's hard to say. He had the op on 1/5/12, was out of bed on the second day. He is still walking, sometimes with a stick, very slowly but has managed to cut the front and back lawns for the last month.

He had the first bisphosphonate infusion 2 weeks ago and will have the rest when he starts chemo.

How did it go today and whereabouts do you live, we live near Bromley, Kent.

Take care.

Sandra x

sarahlou1 profile image
sarahlou1 in reply to sandra123

Hi Sandra,

My Mum had her operation on the 3/6/12. Like your husband she was out of bed the next day and mobilised well and was very determined. She was sent home 3 days later with walking frames and various aids etc. She did quite well for the first week but then her leg started to swell more than it was previously and she is in a lot of pain. She was rushed to hospital last week with chest pain and breathing issues. It transpired that she had internal bleeding in her leg and this resulted in her having a blood clot in her leg which travelled to her lung. She had some of the fluid drained off her leg which she said was extremely painful and was sent home that night. Since then she has been back to the hospital a couple of times with breathing problems which they are saying is due to her taking Morphine. The lung cancer nurse rang today and said that basically they can't do anything with her leg until she has seen the oncologist who she will hopefully see next Thursday.

I live in Birmingham. I am a psychiatric nurse as was my Mum and I have 1 sister who has just had a baby. Its so surprising how many people are suffering from this illness and some people are so young.

I really hope that your husband responds well to treatment and I will be thinking of you both.

Sarah xx

hi sarah,

ive just read your post i know it is a couple of yers ago was just wondering how your mum is with regrds to the cancer as my mum has been diagnosed with virtually the same thing as your mum, hope to hear from you, xx

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