Adenocarcinoma lung cancer

[SharonTan]

hi my mum has just been diagnosed with possible stage3-4 Adenocarcinoma if the right lung and her lymph nodes are inflamed, the cancer is contained in the lungs currently. We are waiting for an oncologist appointment to discuss treatment. We are all in shock as the consultant says mum may only have months unless she has treatment. Anyone else been in a similar position & had treatment? Mums 79 & in good health, this just came up after a chest X-ray following Xmas chest infection, love t hear about anyones experience

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear SharonTan

Welcome to the forum, all be it under the news of your Mums lung cancer. It is understandably a difficult and distressing time for you all.

Adenocarcinoma is the slower growing type of lung cancer, and thankfully, in the last decade there has been great progress in new treatments such as Immunotherapies and Targeted Therapies. Although not a cure, these new drugs can provide extension to life.

These drugs require specific cell mutations/proteins present from the biopsy, which will possibly be discussed at the next appointment with the oncologist.

Surgery is usually offered at early stage 1 diagnosis, so it may be radiotherapy, chemotherapy or the new treatments of Immunotherapy and Targeted Therapies, It is encouraging that your Mum is in good health and always a good starting point for any treatment.

All our information booklets can be found on this link: roycastle.org/help-and-supp...

These range from diagnosis, staging of lung cancer, treatments and living with lung cancer.

This link will take you to our booklet on 'Managing your lung cancer diagnosis'roycastle.org/app/uploads/2...

If you are looking anything up online, we would advise that you keep to the following websites, that provide accurate and up to date information:

roycastle.org

cancerresearchuk.org

macmillan.org.uk

We have a range of support services, from one to one support to online support groups through zoom , if you are interested in any of these you can register through this link: roycastle.org/help-and-supp...

Our campaign section provides encouraging accounts from those living with lung cancer: roycastle.org/campaigns/

The Maggie’s centres are a great place to have a cuppa and a chat, they provide practical, financial and emotional support; maggies.org/

We offer a one off grant of up to £150 for anyone with primary lung cancer and you can apply for this through this link: roycastle.org/patient-grant...

To qualify for the patient grant, the lung cancer has to be a primary and it is means tested.

If there is anything else you would like to discuss you can email ask the nurse at [e-mail] or call our free phone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600

If you would like any of our booklets posted out you can request this online or send us an email to [e-mail]

We hope you hear from others in the forum and find support and encouragement.

Kind regards

The Roy Castle Support Team

[IanM1957]

Hi Sharon,

I'm so sorry to read of your Mum's condition.

I was investigated for possible lung cancer in September 2019 after a CT scan for something entirely different showed a mass in the base of my right lung. I was immediately referred to a lung clinic where the speialist told me he highly suspected it was a lung cancer. He arranged a biopsy but that was unsuccesful as they couldn't retrieve a viable piece of tissue for analysis so the next step was a PET scan in which the lower lobe of my right lung lit up. I was then referred to a lung surgeon who told me he would remove the lobe of my lung - that was done in November 2019 and I received the results of the analysis of what had been removed in January 2020. Early January I had a call from an oncology nurse who had "jumped the gun" asking me to go in the next day to schedule my ongoing chemotherapy treatment so my worst fears were confirmed. Later that day I had a call from a MacMillan nurse who apologised that the news had been delivered in the way it had - she scheduled an appointment with an Oncologist and the lung surgeon to follow on from the oncology nurse appointment the next day. I was told by the Oncologist that I had non small cell lung cancer - an adenocarcinoma which had split into two but otherwise did not appear to have spread beyond the right lung - the cancer was staged at T3N1M0 meaning it was stage 3, had spread to lymph nodes in the lung but no further. The Oncologist also told me that the cancer had been caused by a genetic mutation called an Exon19deletion . I was given curative treatment (i,e. the lower lobe removal and 3 cycles of adjuvant chemotherapy) I am followed up regularly and so far the signs are good but it will be a few years before they'll say I'm cured.

All the best to your Mum for a positive outcome.

[SharonTan in reply to IanM1957]

Hi Ian,

Thanks so much for your response. I’m sorry glad surgery was an option for you and it sounds like you’re on a positive path which is amazing. Sadly they’ve discounted surgery for Mum. I imagine it will be chemo or immunotherapy for Mum. I’m worried about the side affects for chemo for Mum who is not really symptomatic, how did you cope with Chemo?

Sharon

[IanM1957 in reply to SharonTan]

Hi Sharon,

Sorry to hear that surgery is not an option.

To be honest I found the chemo' pretty tough going at times, I was on a combination of Cisplatin and Vinorelbine - I tolerated the first cycle reasonably well but the next two cycles made me really sick to the extent I felt I just wanted to curl up and die and it really wiped me out and all I could do was mostly sleep.

If a biopsy of your Mum's tumour does show a genetic mutation, as the Trust has said there may be a targetted therapy available (Google search egfr mutation for a wealth of information from UK & US experts in the field). Don't get your hopes up too much yet until you know for sure that your Mum's cancer has been caused by a mutation but equally, don't give up hope

Ian

[SharonTan in reply to IanM1957]

thanks Ian, as you say we need to know more from the oncologist and then we will know what our options are. Thanks for the advice.

[Cockailschemocancer]

hi Sharon - really sorry your mum has been diagnosed with lung cancer, as the nurses have said treatment has really changed. Best thing your mum can do now is get as strong as possible which means eating lots ahead of any treatment this should help. I wish you all the best xx

[Kasuku]

Hi Sharon.I am very sorry to hear about your mum's lung cancer diagnosis.

I was diagnosed with stage 4 non small cell lung cancer last year May. It was a shocking rollercoaster. I initially had no symptoms at all, and in good, active general health. An abnormality was seen on my right lung in a scan I had for an abdominal pain.

I was referred to respiratory consultant who further investigated, but could not confirm with a biopsy. I had two failed biopsy attempts through CT guided biopsy.

The Thoracic Surgeon planned surgery to remove my right lower lobe and take biopsy at the same time. But unfortunately the cancer had spread, they only did a wedge resection biopsy.

After 3 weeks of waiting for my biopsy report and staging of my cancer,. Mine showed a genetic mutation and only responded to Targeted Therapy. I have been on Targeted Therapy Osimertinib since June last year. One tablet once a day. I am seen every four weeks by the wonderful Oncology team and the Lung Nurses. I have had two scans that have showed positive results that the Targeted Therapy is working. I am happy and staying positive, continuing with my active life, walking, going to the gym, eating well staying hydrated.

I have gone back to but not full time working one or two days a week. I take one day at at time. I pray, meditate.

The Maggie's Cardiff has been of great support mentally for me.

I wish you and your mum all the best. Don't give up. There is hope.

Kasuku.

[SharonTan in reply to Kasuku]

kasuku thank you so much for sharing your journey and it’s so amazing to hear targeted therapy is working so well for you. Do you have many side effects with this type of therapy?

Thanks

Sharon

[Kasuku in reply to SharonTan]

Hi Sharon.So far I occasionally get small painful ulcers on my gums which go away with the mouthwash I get.

My finger nails have become brittle and splitting, but I keep them moiturised and short. I thank God, so far so good 👍

I am closely monitored for any side effects, regular ECG heart monitoring, every 4 weeks blood tests, every 3 months CT scan of my chest and abdomen.

[SharonTan in reply to Kasuku]

thanks useful to know, appreciate it.

[Elt79]

Hi Sharon - I’m to hear sorry about your mum’s diagnosis. In September 2018 I too was diagnosed with Stage IV non small cell lung cancer which had already spread to my brain and adrenal gland. Surgery was not an option and I remember one consultant telling my daughters the aim was ‘to keep me as well as possible for as long as possible’. We were all devastated and assumed months - however as you can see I’m still here over 4 years later!

I had targeted radiation for my brain tumours and then started immunotherapy, Pembrolizumab, for two years. I also was able to have targeted radiation to my lung in 2019. I have had no treatment since November 2021. Treatment has definitely improved over the last few years. I know we all respond differently and have differing options. I so remember how my two girls felt but I sincerely hope there are good treatment options available to your mum x

[SharonTan]

That is so great to hear, I’m so pleased you are doing well. It feels hard to be positive at this stage, but it’s so nice to hear how well you’re doing, we are hoping that there will be a treatment that will keep Mum well too. Thanks so much for sharing your journey with me, it’s appreciated!

[e-priestman]

Hi Sharon, my husband has lung cancer. He was diagnosed 5 years ago aged nearly 48y he was stage 3.

He has had surgery twice, been on chemotherapy, and 2 target therapies and has just finished 15 sessions of radiotherapy. He is now stage 4. We are awaiting scan results.

So I just wanted to say, don’t loose hope there are treatments available out there and if one stops working like with my husband there can be other treatments to try.

Wishing her all the very best in this next chapter of life x

[SharonTan in reply to e-priestman]

thank you so much and I hope your husband continues to do well

[21_er]

Hi Sharon I had a similar experienced to your mum 2years ago I was prescribed a targeted therapy call gefitanib I have experience side effects I am still here I hope your mum starts treatment soon.

[SharonTan in reply to 21_er]

that’s wonderful to hear! Are the side effects with targeted therapy better than chemo or similar?

[Ellejayb]

Hi Sharon

So sorry for your mum’s diagnosis but I’d like to add my note of optimism to others here. I was diagnosed with Stage 4 NSLC in January 2019 - and I’m still going strong, living a full life. Yes, the chemotherapy bit of if it was tough but in my head I reimagined it as about the same level of toughness as pregnancy - feeling nauseous, food tasting rubbish and fatigue. That’s how I dealt with it anyway.

It is very hard for loved ones but to have a daughter like you who does full research on sites like this will help enormously - to know the reality that, underneath the grisly headlines, there are lots of positive stories and outcomes.

I hope she is one of the many who benefits from the amazing treatments now out there -and I am pretty sure with you by her side, she will get the best possible treatment available to her.

I wish your mum and your family well

[SharonTan in reply to Ellejayb]

sorry just realised I read your messages out of sync, I’m sure your mind set is helpful in your recovery and my Mum is strong so hopefully she will cope with treatment well. It just seems so bizarre as she’s actually very well with no real symptoms. You and other people on here have given me hope which I’ve not felt, so thank you. I wish you all the best too!

[Ellejayb]

Also, please don’t get too alarmed about the statement that she’d have months to live if she didn’t have treatment. I think we were probably all told that.

I think it goes for many ‘normal’ medical conditions that we’d possibly die within months if we didn’t have medical intervention. To normalise it, if I broke my leg and didn’t have any medical treatment, a few months down the line I’d probably be infected with gangrene, etc. But doctors don’t say how long you’d live if you don’t have treatment when you break your leg, They do say it when you have cancer. I’m saying please don’t worry about that.

[SharonTan]

that’s a good way to look at it! Thanks for the reassurance, appreciated