Send visit to the clinic today, first was last Monday. Talked about surgery etc etc. Had pet scan Tuesday last. The consultant had said she woukd phone me with the result so surprised when I received a call to come in.
Upshot is in too late for surgery as I have bone secondaries. A bit shocked! Worried about my husband, sad, relieved I won’t get dementia like my dad, angry that it wasn’t picked up in xrays in last February and last November
Not 100% sure I want to endure much chemo
A bit lost and alone
Written by
mundy
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Very sorry you’ve had this new development. Please know that this is no longer the automatic death sentence it once was. Treatments are not nearly as harsh and debilitating as they once were. There are meds that manage the nausea that once made it so rough.
It’s not a walk in the park but it’s doable. I’m 9.5+ years with stage 4 lung cancer. I have a very good life. There are some long term side effects but I would gladly go through treatment again.
That is encouraging. I retired early in 2014 I spent a good part of 2018 laid up with an osteoporotic vertebral fracture and last year I had 4 squamous cell skin cancers removed and 11 basak cell skin cancers ( more waiting for treatment) I am somewhat despondent
You’ve had some serious health challenges already! I had 4 vertebral fractures (osteoporosis), am on fosamax which has strengthened my bones tremendously. My doctors did a surgery called kyphoplasty which was near miraculous.
What have they staged your lung cancer at? If it’s 3 or 4 insist on genomic testing. I’m not sure what the staging required there in the UK is for that but if you do qualify you might also qualify for an immunotherapy or targeted therapy and a pill might be called for rather than a traditional chemo.
Why don’t you have a look at immunotherapy , this seems to be working wonders with a lot of people and does not destroy all your healthy cells like chemotherapy x good luck x
Please take a wee while to take all of this news in , listen to your medical team and talk to your loved one's .
People are living a good quality life for years with stage 4 lung cancer and treatment is evolving all the time . You could be someone who responds extremely well to the treatment and have many years before it's your time.
I have had the same thought about Dementia and I get how your feeling right now ,but please just give things a little time and consideration before you decide not to have any treatment .
Sorry to hear of your recent diagnosis which must have been quite a shock for you all. It is understandable the range of emotions you must be feeling and perhaps wondering what happens next for you.
As you can see from the replies on the forum, there are encouraging new treatments called Immunotherapies and targeted therapies, which can be offered to some who have spread from lung cancer.
These treatments are dependent on certain cell mutations or proteins being present in the biopsy. You have not mentioned if they are awaiting results from your biopsy or if they are still deciding on what treatment you will be offered.
If you would like more information on these treatments they can be found from this link:
There are many inspiring and encouraging stories found in this link which you may find useful: roycastle.org/campaigns/lik...
If you would like to discuss anything you can either email us at lungcancerhelp@roycastle.org or call our freephone nurse led helpline number on 0800 358 7200
it's a roller coaster for you emotionally - we've all been there.... for many combination or radiotherapy/chemo and/or immunotherapy are doing a lot to manage the condition.... but lung cancer these days is treated very much in a personalised way and if you have the mutations for which targeted agents exist (they'll find this out in the biopsy) there may be several options. I don't know how anyone can talk about 'months' prognosis at this stage.... I was diagnosed in Jan 2011 and in Nov 2012 attended a conference for Roy Castle and met a nurse who'd been told she had less than 6 months to live with stage iv lung cancer. Hers had also been missed as the tumour was behind her heart. She lived 4 years and 4 months after finding out she had EGFR mutation and taking part in two clinical trials and receiving treatments that are now standard or even old fashioned these days. She died a few years ago and I've met others given similar timelines but had the condition 'controlled' with agents that hadn't even existed at the time of their diagnosis and also gained many years... and that was all before immunotherapy came along. Many patients are considered 'terminal but treatable' and there are many online too. Do not give up..... I've been involved in lung cancer research for over 5 years now and have met people who are 20+ yr survivors even with advanced cases before any of today's treatments came along.... it's a lot to take in and I confess I didn't think I'd get to approaching 10 years with some of the things I'd read but older now and more informed..... once they have the biopsy results and can explore treatment possibilities, it will be easier to deal with the situation - wondering 'what if' is always harder than dealing with 'what is'..... good luck. have a look at the info on Roy Castle website especially roycastle.org/about-lung-ca...
Waiting for investigations and then the results can seem like the longest time , especially if you say they have mentioned months as a prognosis.
However, stage 4 diagnosis is not the same as it used to be with limited time left, targeted therapies have given many a longer length of time with a fair quality of life. Everyone is different in their response and hope you hear from encouraging experiences on the forum.
Targeted therapies, although not a cure, can stop the cancer cells growing, shrink the tumour and lengthen your life. This is the link to our booklet on targeted therapies which may answer some of your questions:
Hope your biopsy shows that you are eligible to receive this treatment.
Our booklet 'managing your lung cancer diagnosis' explains the EBUS if you wish to read about this on page 16: roycastle.org/app/uploads/2...
If you wish to discuss anything as always you can email us at lungcancerhelp@roycastle.org or call our freephone nurse led helpline number on 0800 358 7200
So sorry to hear you have bone cancer which is to late for surgery but hopefully you get the treatment needed and without to much pain best wishes for the future
Hi Mundy this is a horrible place to be so my heart really does go out to you. We are feeling from the shock of a 2 month prognosis - wish I hadn't known but it is giving my husband purpose to plan things. Its all such a shock isn't it?.
I am a wreck at the moment - I wake up in tears and go to bed in tears which is not good. If you ever need to talk, I am here
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My brother
Any input/advice please on radiotherapy post immunotherapy? 
Sharing my good news
Surgery Over
Still in shock,
