Hi all, my beautiful mum is getting her biopsy results tomorrow (Friday) but has been told she has a tumour and there is potential spread to lymph nodes and that the plan will be chemotherapy and immunotherapy. She has had two x rays, a chest CT and bronchoscope/biopsies but no further tests just yet.
We only found out last Tuesday after her CT that they believe it’s Cancer so it’s been a huge shock to us. I think lots of people will have been caught out the back end of last year with this ‘100 day cough’ - that’s what we thought she had.
Just posting as a newbie for advice and ways I can support her / prepare her for Chemo. My dad passed when I was 18 so it’s just the two of us fighting this together. I’m terrified of a scary prognosis on Friday and have told her whatever timeline we get we’re ignoring it and working towards her being here as long as possible.
Not sure what wait times are like for Chemotherapy at the moment on the NHS but hoping it’s not too bad - have been reading mixed things depending on the area / hospital.
Laura x
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DaughterofDiane
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Totally agree with ignoring any timeline - I was diagnosed in Oct 2018 with Stage 4 NSCLC with adrenal and brain Mets. My prognosis was very poor however as you see 5+years I’m still here! I had stereotactic radio surgery for my brain Mets in 2018 then again in 2021 and at the time Immunotherapy was given to me as single treatment - I had 2 years treatment finishing in November 2020. So apart from brain Mets no further treatment so far and my latest CT was NED. Had my ups and downs with side effects but all manageable so far! I am on my own but my two daughters who live away have been such a support to me throughout. I wish you and your mum all the best for tomorrow and going forward x
I know it sounds obvious but try not to google, like Elt I had chemo and immunotherapy in 2020 and since 2021 have had no evidence of active disease! I was told it was stage 4 and 2-5 years prognosis but the stats are out of date as they haven’t been done on immunotherapy! Side effects immediately after for me were sleep but I did develop colitis which can happen and I had to stop treatment but the immunotherapy I liken to it reboots your immune system! The other thing I would say is don’t be afraid to say how your feeling and that you want the treatment to start quickly as the waiting is the hardest part. I wish you both well.
Welcome to the forum, and so sorry to hear about your Mum. This is understandably a difficult and distressing time for you both.
Everyone is different in both their response and reaction to any treatment and thankfully lung cancer treatments have improved greatly over the last decade. Although a stressful time for you both, sometimes knowing about the lung cancer can ease a little of the anxiety, I have placed some links below which may help.
You may find our booklet on 'Managing your lung cancer diagnosis' helpful, it provides information on the types of lung cancer, treatment options and there is a section on what questions to ask at the consultation (on page 48) roycastle.org/app/uploads/2...
There is a lot of inaccurate and dated information out there on the internet and we would advise to keep to the following websites:
You are welcome to contact our ask the nurse service if you would like a chat about anything, you can email ask the nurse at lungcancerhelp@roycastle.org or call our free phone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600
Ensure you have plenty support for yourself and am sure you will find encouragement from others in the forum.
Sorry to hear about the shock you naturally felt when you heard what your mum is being investigated for.
Treatments for lung cancer even if it has spread have changed considerably since my diagnosis in January 2011 when immunotherapy didn't exist for lung cancer nor targeted agents (which some patients have if they have certain mutations within their tumour for which there are specific treatments).
I've been involved in lung cancer research since 2013 and even more traditional treatments have changed - and many patients now receive combination of treatments which seem to work better for many.
As others have suggested, try not to google as so much outdated and inaccurate information comes up first. To find out more, do use trusted sites like Roy Castle lung cancer foundation as their information is regularly updated by clinicians and reviewed by a patient panel to ensure it's in terms and language that anyone can understand. Their information covers all aspects of the so called pathway - from suspicion for cancer tests, awaiting diagnosis, the various types of treatment with each type having detailed as well as general information online and downloadable or in print that can be posted. They have a lot of information on living with lung cancer including eating well, travelling, managing symptoms like breathlessness, finances and working with lung cancer and much more besides.
They also offer a nurse led helpline, online groups and in some places support groups in person for patients and relatives. Macmillan also offers nurse led helplines and online information for all cancers, all stages of cancer and information on how to support a loved one with cancer that may help.
Your mum should also be allocated a clinical nurse specialist so ask about that if it's not raised as these can be invaluable in having more time to explain things and support you. You can also ask them about any local support for patients and relatives. macmillan.org.uk/cancer-inf...
Cancer services are supposed to have priority and there are national guidelines and targets about treatments. There can sometimes be differences in waiting times dependent on where patients are treated - cancer specialist centres or general hospitals. Times can be affected more by staff availability, pathology turn around times for the biopsy results which can affect which specific treatment she is offered.
As she's getting her results tomorrow, hopefully a treatment plan will be outlined and you can all begin to plan. For many it's the uncertainty and waiting when told 'investigating for suspected lung cancer' that creates anxiety and can be a stressful time. Wishing you and your mum luck
Hi, sorry to hear about your mum the waiting I think is the worst. I was diagnosed with stage 2 lung cancer in January 2020, had my right lung removed in the March but unfortunately 18 mths later a reaccurance was found so I had SABR radio therapy but more was found after. I have been on chemo and immunotherapy to start then just immunotherapy as maintenance, July this year will be my 2 yrs of treatment 🤞 I'm still working full time and even completing challenges like the 26 mile mighty hike for Macmillan. Keep a positive attitude your mum can fight this with your support 💪 many people live years with this disease treatments have come so far and getting better all the time. Sending positive thoughts xx
hey I don’t have any advice but just wanted to say that we were in limbo all summer not knowing what my mum had, turned out it was lung cancer, she is fine now thankfully. Just wanted to offer a virtual hug as i know how crappy all of this is xxxx you girls give it your all!!!! Punch it in its face 🙌❤️
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