Hello
I’ve had lower right lobectomy followed by chemo last year. Today I’m going for a follow up chest X-ray and having just looked at the form it’s says T3 Muc. Adeno. I knew I had NSCLC adenocarcinoma. So I’m assuming the MUC is mucinous, which I wasn’t aware of. Does anyone have/had mucinous adenocarcinoma? I know little of this type, so just interested to hear if others had same and their experience. Thanks
Dear Mog2
The mucinous adenocarcinoma is a sub type of adenocarcinoma; it is an overexpression of the protein Mucin which is associated with cancer and there can be an increase in mucous which causes a cough.
Hope your check scan goes well and you could also discuss, have more clarification of this with your lung cancer nurse specialist.
If there is anything else you would like to discuss you can either email us at lungcancerhelp@roycastle.org or call our free phone nurse led helpline number on 08000 358 7200
Kind regards
The Roy Castle Support Team
Thank you for the reply. I will ask the consultant for more info when I get my results.
When I had my upper left lobectomy in Dec 2010, my diagnosis in Jan 2011 was mucinous bronchoalveolar carcinoma (BAC) which has since been reclassified by the international standard to invasive mucinous adenocarcinoma for what I had (7cm tumour classified as T2 at the time but the reclassification also moves it to T3). The latest international standards TNM8 did a lot of work to 'reclassify' in more detail some types of adenocarcinoma to AIS adenocarcinoma in situ, MIA minimally invasive adenocarcinoma and IMA. I was told at the time that the specific type of cancer I'd had didn't respond to chemotherapy so I only had surgery (not keyhole) and was back at work and swimming by the end of March 2011. I've been involved in lung cancer research since 2014 and learnt a lot more than I knew or was available at the time of my diagnosis 10 years ago. Lung cancer treatments and research have increased exponentially in the last 5-6 years. At the time of my surgery the only targeted treatment available was on clinical trials for those who tested positive for EGFR mutation which I didn't. Now there are a host of targeted agents, immunotherapy and most treatments now are a combination of treatment modes rather than single mode for chemo/radiotherapy. My follow up treatment was regular chest x-rays - initially after 3 months then 6 months then annual. My involvement has led me to meet many patients involved in research and several of them survived 20+ years post diagnosis. Much more has been evidenced now about the wide variety of types within types... non small cell lung cancer has an amazing number of variant factors (called 'heterogeneous) but many are able to be targeted these days. Good luck with your recovery....
Thank you so much for the reply Janette. I gather from the little research I have done so far that mucinous adenocarcinoma is quite rare. May I ask have you been totally clear for the last 10 years?
I don’t know what gene mutation I may have. I’ve recovered well and keeping fit with walking and yoga. Its been a year since my surgery which was followed by chemo that I finished at the end of August.
Are there any particular questions you suggest I ask my consultant?
I was told it was rare and more common in SE Asian never smoking women... yes, I have been clear for more than 10 years - it was Oct 2010 when I went to A&E, had surgery in Dec 2010 and diagnosed in the January 2011. I've had some severe chest infections in the years since and been put through scans, bronchoscopies etc just in case there was recurrence and thankfully not... at the time the only targeted agent was for EGFR mutation and I know the test came back negative so never did find out exactly what mutations I had despite asking several times for a copy of the pathology report. The last time I asked I was told it would have been archived as it was paper and they're now digital and despite asking again, not had it. well done for keeping active - I was an active swimmer beforehand since 1990 but have gone onto swim much further than I did before - initially to raise funds for Roy Castle charity and improve my fitness but kept it up and it's an essential part of my wellbeing strategy!I asked my consultant what I could do to prevent recurrence - any diet or lifestyle changes and he said there was no evidence but in the intervening years, more evidence has been found that maintaining a 'healthier' lifestyle is better. I found the book 'anticancer - a new way of life' by Dr Servan Schreiber helped me in my outlook and 'cancer is a word not a sentence' by Dr Rob Buckman helped me stop thinking that every symptom/niggle or ache I had after my surgery/diagnosis was related to my cancer.... ... you could ask how often you'll be followed up... some centres do 3 monthly, then 6 monthly then annual - I was moved onto annual check too soon he said afterwards - but that was due to my then fitness... I have been reassured that any time I've had something wrong since, the consultant (surgeon) and respiratory consultant when I developed nasty infections have been responsive.... I'm guessing that as you had chemotherapy, your consultant is an oncologist so you might want to ask who you should contact (unless you've been allocated a lung nurse) if you develop any late effects from your treatment in future.... hope that helps... good luck with your appointment... btw I've met patients who were resected 25 years ago and no recurrence - who knew?! I had no idea until I became involved in lung cancer research that there are patients who survive beyond the 5 year mark as that seems to be where all statistics stop..
I do have a positive outlook overall, however, after the oncologist told me I have 26% chance of survival past 5 years, I do worry(quietly!) a lot about recurrence so I am regularly giving myself a good talking too! I’d had quite a rollercoaster prior to my final diagnosis, having been told I had cancer in February then told I didn’t and it was something else in March as bronchoscopy inconclusive , then 5 weeks later after a follow up CT and then CT guided biopsy, cancer was confirmed and was having surgery a week later. I only saw oncologist at the cancer centre during chemo and I’m now back with my Respiratory Consultant. I’ve contact with CNS and have been having checks every 3 months, alternate CT and chest X-ray. Keeping well generally, just get tired, maybe due chemo. The added worry of Covid has exacerbated everything I think too. Hearing yours and others stories of survival and good health is really reassuring, so thank you for that. It really does help .
I will check those books out too. Many thanks for the helpful advice.
Good to know you're feeling more positive - I had a raft of similar tests several times in recent years but I try to put things in context. I didn't have a bronchoscopy or ebus or biopsy before surgery so had been told various things including misdiagnosed as asthma despite clear imaging. I'm curious where your oncologist has 26% from - did he mean recurrence rather than survival?
depending on TNM8 cancer stage , 60 month survival rates vary from 92% under 1cm (stage 1A1), 83% 1-2 cm,(stage 1A2) 77% 2-3 cm (stage 1A3), stage 1B, 68%, iiA 60%, iiB 53% and even iiiA 36% (rare for stage iii to be offered surgery) - these figures extracted from a UK Lung Cancer Coalition Millimetres Matter presentation by Dr Neal Navani of UCL in 2017 -are a few years old now....many treatments since been introduced and keyhole overtaken open surgery in the UK meaning more patients are able to have it than before. His slides show survival rates.
I had no idea how few patients were detected early enough to even have surgery when I was diagnosed so am eternally thankful and involved in lung cancer research since 2014, much more informed than when diagnosed.
Even if it were as low as 26% (which it isn't) that's a 1 in 5 chance - so why write yourself into that group? I remember having a similar conversation in 2015 with a patient in the same ward crying having been told she had a 20% chance of recurrence which she took to mean she wouldn't see her grandchild grow up. Only when I reframed it that it meant 80% wouldn't experience this - i.e. 4 out of 5 that she stopped crying to work through the logic.
Nobody is a percentage or statistic but this statement may have added to your anxiety.... my surgeon told me to get on with my life so I'd encourage you to keep up your activities, live a balanced life (sleep, diet, activity, social activities) and hopefully your fatigue will reduce and you can move on from this concentrated time of treatment into a more 'regular' life. good luck....
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