NSCLC EDFR Migration Stage 4 LC at 37. - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation

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NSCLC EDFR Migration Stage 4 LC at 37.

AdamLaver profile image
5 Replies

Hi guys. I'm Adam, I was diagnosed last April at the age of 37 with Stage 4 Lung Cancer which had spread to my spine. It was caught on an X-ray of my throat completely unrelated to the cancer. As a lifetime non-smoker it was a complete shock (and still is). Turns out it was due to DNA mutation). Ive been on Afatinib ever since and scans have been stable, albeit with a single lymph node that seems to be active. I have private medical cover through my work so have been see privately, but I don't have any real support through them. I visit my local Macmillan Centre but have never been given a dedicated Lung Cancer nurse - should I have one if I'm not on the NHS?

Also - happy to hear from anyone else on Afatinib to share experiences and tips on the side effects.

5 Replies
esmaleyla profile image
esmaleyla

HI Adam I was treated on the n h s I was given a lung cancer nurse in respect off any questions or concerns you may have however this was never explained to me so I felt very much on my own it was a chance conversation whilst I was having chemo at Wythenshawe hospital that I should have been allocated a lung cancer nurse upon making enquiries this was the case in respect of wether your receiving private health care or not a lung cancer nurse should be allocated to you it maybe worth speaking to macmillan they should be able to find the relevant information for you wish you well take care

Michelle

RoyCastleHelpline profile image
RoyCastleHelplinePartner

Dear Adam,

Can I suggest you call the local cancer nurse specialist in your local hospital and explain your situation.I am sure you would be able to attend a local lung cancer support group.Please give us a call Freephone 0800 358 7200 if you have difficulty obtaining the number as I don't know where you currently live.

Kind regards,

All the team at Roy Castle Helpline

Bow-19 profile image
Bow-19

Hi I am ALK positive not EGFR, but I use an American Website called Inspire and people post on there from around the world about their treatment and responses. It's worth joining. I am also a non smoker and was 49 when diagnosed. Wishing you all the best Xx

JanetteR57 profile image
JanetteR57

Hi Adam, Understand your shock - I was also diagnosed with adenocarcinoma 2 months after presenting at A&E and being misdiagnosed as asthma - also a never smoker so I was also caught unaware as the medics had kept reassuring me that the 'anomaly' on the chest x-ray was more likely due to previous infection. Think there is a lot of awareness raising to do as many lung cancer patients have never smoked but the general public and many medics believe it to be almost exclusively a smokers' disease. I wasn't given a lung nurse either - this was in December 2010. I was treated on the NHS but as there was no theatre capacity for surgery (mine was operable - 7cm tumour - lost half my left lung), so the surgery was carried out in a private hospital on the NHS. It was a couple of years later when attending a conference as a fundraise for RCLCF that I first heard about lung specialist urses and when I asked at my check up with my consultant whether there were any, i was introduced to the two at my hospital. I explained that I'd found it useful exploring/hearing/airing feelings in the workshop at the conference and whether there was any opportunity to do this, they referred me to a local counselling support service for cancer patients which I found immensely helpful. There are several online support groups - including the Facebook page 'I am the face of lung cancer' by former cancer nurse specialist, the late Lyn Barrington (moderated by RCLCF), Patient Power, Inspire, and others. The online forums aren't always moderated by clinicians so it can be easy to think that what one person has had might work for another but as the condition has so many variants (which medics/scientists call heterogeneity), not everything is suitable for everyone so it is easy to get alarmed, hopeful or confused. Dependent on what you want to talk about, I'd suggest asking for individual support through your own clinician/nurse/department, phoning the Macmillan or RCLCF helpline and supplement with online support if you're unable to access a face to face group. I found it helpful recently to attend a CRUK workshop about how lc patients had been diagnosed as I came across other 'younger' patients who were still working as the majority of patients I'd met had given up work or were retired so some of the issues facing different age groups were not always considered. Patient groups can be useful to find out how people have experienced certain treatments from a quality of life/side effects perspective and how people are feeling in themselves (which often is paid little attention by clinicians). good luck.

Wilfapoo profile image
Wilfapoo

Hi Adam, my husband is in a very similar situation to you. He is 47 and also on afatinib, since Nov 16. He was treated on NHS for a while where he had a lung cancer nurse then was able to be treated privately through insurance. He now goes to the royal marsden and sees a lovely oncologist there as well as a lung cancer nurse. The nurse Is present in all his appointments with him and we have her direct number so he is able to ring her when he has a questions or concerns. She has been really helpful and I would recommend you ask at your hospital if they have one.

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