Hi I have just been diagnosed with stage 1lepidic cell adenocarcinoma of rt lower lung, I have been offered a lobectomy for treatment but first I am trying to research other options of treatment, radiotherapy, cyber knife etc, I will be greatful to hear back from anybody with similar diagnosis and what treatments you have gone through
Many thanx
Blackkeys
Dear Blackkeys
Welcome to the forum where you will find support and encouragement.
Sorry to hear of your cancer diagnosis and it is encouraging that you have been offered surgery which can be the first choice of treatment if the cancer is caught early.
For alternative treatments, as in radiotherapy etc this would be best discussed with your Specialist.
Whatever decision you make ensure you are well and accurately informed of your options. We would advise websites that are backed by research evidence based such as ourselves roycastle.org
and you may find the UK guidelines from NICE (National Institute of Health and Care Excellence) of use, this is the approved pathway for lung cancer: pathways.nice.org.uk/pathwa...
Hopefully you will receive some responses from the forum from those who have been where you are just now.
This link will take you to our surgery booklet which may be useful in helping you make your decision:
roycastle.org/app/uploads/2...
Our website has a host of information booklets that you can download:
roycastle.org/help-and-supp...
There are some very inspiring stories under our campaign section which may find of interest for you:
If you wish to discuss anything further you can either email us at lungcancerhelp@roycastle.org or call our freephone nurse led helpline number on 0800 358 7200
Kind regards
The Roy Castle Support Team
Thankyou, I will be looking at all these sites, the more informed I am the easier it is to make a decision, as it has been left up to me.
I'm a very positive person so am staying upbeat.
Hi Blackkeys, so very sorry to hear of your diagnosis. It's a scary time for you I know. I am 5years post surgery and have never looked back. I had lower lobe of right lung removed & adjuvant chemotherapy. I had 3monthly hospital checkups, then 6monthly and now its yearly. The first year was difficult post surgery but I had a lot of support from my respiratory nurse team & my GP who were always available at the end of a phone for advice. Gentle exercise such as short walks helped & as i got stronger was able to lengthen these. This really helped with my lung function. Everyone's body reacts differently, I'm not saying it's easy but every day you'll get stronger. Ask lots of questions from your hospital/nurse team, we really do have a fantastic health service. Diagnosis is a shock, it's definitely a biggie & very scary but treatment is changing all the time. This is a wonderful forum for support as well & always someone to help with your questions, so ask on here. Good luck & best wishes with everything Blackkeys & please let us know how your getting on.
Hilary. x
Hi hilary many thanx for replying it is a huge help to hear someone else's experience and you sound like you are doing so well.
I'm v positive & have good lung function I'm also healthy, so I guess I will recover well from surgery 👍
I'm not keen on an open procedure, which my surgeon has warned he may have to do.
So that is why I'm exploring radio etc, but this has a 10%less effectiveness.
Thanx once again & ill keep you updated as to how I proceed.
Take care
Maddy
X
Dear Blackkeys, Good to welcome you on here - and it can be a scary time - I had a 7cm adenocarcinoma removed along with half my upper left lobe through open surgery in Dec 2010 and was back at work and swimming 3 months later. At the time, the specific cancer I had didn't respond to chemotherapy so that's all I've had. I'm now very heavily involved in lung cancer research and had no appreciation of how few people are actually offered surgery at the time of my surgery. This usually due to it being in an inoperable location (too near other structures), too advanced or the health of the patient. There is some really helpful information about lung surgery available on Roy Castle lung cancer foundation website under information/treatments/surgery/my lung surgery and has only been updated in the last few weeks. I'm on the patient review panel for them and wish I'd had such a resource available at the time of my surgery. surgery is still the main treatment undertaken with curative intent and for those less fit for surgery, SABR is sometimes used (radiotherapy) but there are side effects of any treatment that affects the whole body rather than a localised surgery to remove it. The booklet has some suggested questions to ask your clinician so have a read - it will answer a lot of questions. I've gone onto swim further than I ever did before the surgery. If they operate on right lower lung, that is likely to be only one lobe removed out of 3 in the lung (on left side there are only 2 so removing one is half of that long versus one third in right) and some patients have a whole lung removed but recover. good luck whatever you decide but do make sure you are fully informed about the surgical option before disregarding it... take care.
Hi Janette, many thanx for replying, your information is great.
I know that my cancer is only located in rt lower lobe so have been told that lobe will be resected, there is no lymph node involvement thankfully ❤️
It is also slow growing, but at this present climate (covid19), not sure if & when treatment will be offered.
I'm still exploring sabr, I'm not keen on having to have the metal markers inserted into my lung tho 👹
Glad to hear you are doing so well, gives me confidence to maybe go down the surgery option.
Many thanx for replying & take care.
Will keep you posted.
Maddy
X
pleased it's useful - do have a look at the website - much more detail there. good luck.
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