Stages of NSCLC

[Elaine141]

Good morning everyone

My husband was diagnosed with NSCLC in May 2016 and I joined this wonderful web site straight away for help and guidance. Over the last few months I see many off the followers are able to put a stage development to this awful disease and I asked my husbands consultant what stage my husbands NSCLC was at and he said unfortunately he was unable to answe this because it doesn't have stages and I wondered why my husband was any different. When he was diagnosed we were told with out treatment he had 3 - 6 months life expectancy and with treatment maybe 6 - 24 months life expectancy, my husband was able to tolerate 5 of the 6 treatments and now we have been told they can't give a time indication due to the treatment being incomplete. My husband has recently started complaining of pains in his stomach and his appetite is decreasing, he is becoming very lathargic and spending time in bed most days. He had a PET scan last week and we are awaiting the results on the 19th January. I have been off work due to anxiety exhaustion for 11 weeks due to my husbands diagnosis, my father spending 10 days in ITU due to renal failure and then my daughter having my first grand child and having no support network from her husband. I have been told recently that I am disgrace as I should be at work because it will take away some of the anxiety because I will be with other people and be distracted from talking or thinking about, these cruel people don't know what it is like to live with the fear of losing two of the most precious people in your life and caring for them on a daily basis whilst they are poorly. These people have now scared me because I am frightened I will lose my job due to this and I am at my wits end as I need my job to pay my mortgage.

Sorry for rambling on but I just wondered why my husband was any different from other people with NSCLC because we want to know what's going on so we can build our memory book together.

Thank you for your kindness and support.

Xx

[tilstongal]

Hi Elaine,

I am not sure why your husband hasn't been given a staging - like you I thought everyone got that. It sounds as if you need to see a different consultant if you can. I am not medically qualified so all I can do is offer you a virtual hug, it really does sounds as if you're going through the mill.

Hugs,

Lorna x

[Ribeye79]

Hi. I too can't think why a staging wasn't given. Staging is linked to localised, and then metatastic spread, of the cancer in the body from its original location. So whether it has or hasn't spread determines the staging. If it wasn't clear to you in discussions with the consultant then it may be clearer in the follow-up letter you should have received. It's usually standard to received this correspondence. On the issues of job, mortgage, stress and possible caring support I think it would be really worth talking to a Macmillan cancer support nurse.

macmillan.org.uk

I know there is lots going on with others close to you in need of support and care. But you need support and care too at times like this.

Take care and I hope things take a turn for the better soon.

[Elaine141]

Thank you for replying to my message, it's so kind of you to do this. We have an appt at the hospital on Thursday for further discussions about my husbands pet scan so I will ask again and the staging of the disease. We haven't received any letters from the oncologist since we were told of the diagnosis but I am determined to find more out. Our Macmillan nurse is due to call this week and I will speak to her about my fears. Thank you again for your kind words. Best regards Elaine x

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Elaine

So sorry to hear about your Husband and the stresses and anxieties that you have. It is really sad to hear you have been criticised in your anxieties, which are very real and completely understandable.

As you can see from the encouraging replies there is a lot of support for you and people that truly understand what you are going through.

Ribeye79 gave great advice on sourcing information from the macmillan organisation. There are also other benefits to perhaps consider, attendance, carer allowance, universal credit for your Husband and for yourself statutory sick pay. We have this information on our website

roycastle.org, where you can also request information booklets to be posted out to you.

If your Husband has a lung cancer specialist nurse, they will also have local information , sources that may be helpful for you both. If your Husband does not have a specialist nurse you can request one with the Oncologist.

Hopefully you will be provided with more information and staging at the appointment on Thursday.

If you wish to discuss anything your can call our free nurse led helpline on 0333 323 7200

Wishing you all the very best.

The Roy Castle Support Team

[Elaine141]

Hi everyone thank you for all your replies and kindness. My husband and I went for his appointment on Thursday and the consultant is pleased that the cancer has shown no new areas of concern and has made an appt for three months with ct scan to be done just before. I asked the consultant regarding the phasing and he tried to explain in simple terms as he did say that people with NSCLC don't normally receive a phasing diagnosis but with me asking he said my husband is phase 4 extreme, but told me not start worrying about it. I am not concerned but just wondered what does it really mean. I understand my husband can't be cured and that the life we have together is limited and I hope to now build a few more memories before we see the consultant in April. Thank you for all your kindness and support xx

[Virgi]

Hi Elaine141, What do those people expect, you are sole carer to two sick people. I know how you feel I'm sole carer to my mother-in-law, her son very little help.

May I ask, is your husband on intravenous chemo. I was given intravenous chemo after two lots they had to give me tablets, as a third dose and I would have popped off. I was given

Getfitnib by Arissa, I haven't looked back since, that was over two years ago. I refuse to go this year as my real dad and my mother both died at 78. I thought bugger that.

I'm sorry about you dad as well being sick. I have a dipstick like your daughter is married to.

I have no grandchildren never wanted any.

I pray your husband can be brought back to better health.

Virgi.