NSC adenocarcinoma of the lung

[JeanneLe]

Well we now have a positive diagnosis. NSC adenocarcinoma of the lung Stage IV. its advanced apparently but in the great scheme of this I don't really understand that. I apparently haven't had it that long but its advanced. I will learn as I go along.

I have had the fluid drained and the lung fixed back to stop the fluid filling up again. There is a node somewhere in the middle of the lung that might be the primary cancer. Its still early days yet, they are doing more, I think he said molecular tests on the part they took out for biopsy and I am now being referred onwards to the next stage which will be chemo. I think they are doing the extra tests so it helps decide what is the best way forward.

We didn't ask enough questions as I didn't really know what to ask plus his bit was re inflating the lung and draining it, the next stage is someone else's department. I now await the next piece of paper to the growing folder of everything I have so far collected.

I wish he had said it wasn't cancer but I know that was wishful thinking really, I am not unhappy to have a diagnosis and can at least research the name and ask other peoples knowledge of it.

They cannot operate and remove the lung because I think it is in the lining, therefore it has to be alternative therapies. They also picked up a glowing bit (from the pet ct scan) in my neck glands again perhaps I should have asked more. It could have travelled already but it could just be an infection. They tell you but they don't if you know what I mean. Beginning to waffle now so its time to go.

Thanks everyone for listening, keeps me sane.

Jeanne

[jujuju]

Hi Jeanne and sorry to hear you are in this situation.I have the same as you.Nsclc adenocarcinoma. If the biopsy tests positive for one of the treatable mutations you will be given a targeted therapy to try,which is a much easier road for most people.Otherwise it will be chemotherapy. I have had surgery, chemotherapy, targeted therapy and radiotherapy. Best wishes.Julie

[MrsHDC]

Hi Jeanne, haven't been on here for few days as still recovering from my op but I am doing well. Some good days and some really good days (determined to stay positive!). Sounds like a lot has been going on for you since your diagnosis too and isn't it a lot to get your head around. So many tests and such a big team of people involved in tests diagnosis and treatment plans. Its like it's happening to someone else and you're repeating their story, I found at times it was difficult to personalise everything and that I could only take so much of it in at any one time. Now you have a definitive diagnosis your treatment can begin and you can plan for that. I went into denial at beginning of diagnosis and when I did get my head around it, which isn't easy I then began to organise myself. I can only describe this as like taking back control as much as possible, of something that seemed so uncontrollable, if that makes sense? But this really did help me.

The next few months will be difficult for you Jeanne but try to stay positive and plan for your treatment as much as possible. Whatever treatment you're offered, research it and then try to plan for it, side effects and all so you know what to expect and how to possibly make it more bearable for yourself. The important thing is to be really good to yourself in any way you can no matter how small and to try to stay positive.

So far I've just had surgery and am still waiting for a decision on any other treatments I may need but I found that planning meticulously for that surgery and researching it as much as possible made it more bearable for me. I asked as many questions as possible and the answers helped me to know what to expect. Your Lung Cancer nurse specialist could help you with this?

Sending you as much positivity as I possibly can Jeanne. You be good to yourself. Lots of love. Hilary. X

[Lakeslover]

Hi,

Julie has covered why they do the extra tests and she is the expert there. They won't have given you a definite answer on the glowing bit because even a pet scan isn't that specific so they can't always be certain what it is. It may be tumour, or it may be infection. The thought to hang on to is that the treatment is the same either way. Whether chemo or targeted drugs they wil hit both the original tumour and any spread.

[Bow-19]

I have same diagnosis as you and was diagnosed November 2013, I agree with Julie that it's necessary to be tested for mutations as these make the treatment more specific.

Wishing you all the best xx

[LorraineD Partner Roy Castle]

Jeanne

Hope knowing what you are dealing with is a help. As Julie says they will be looking to see if you have any genetic mutations which will affect your treatment plan. These genes can be a target for particular drugs and are more common in people with adenocarcinoma.

You might find our pack Lung Cancer Answering your questions useful. We can send it to you or you can view our information on roycastle.org

It seems likely you will be seen by an oncologist who will help co-ordinate next treatment options. It is hard to remember your questions when there is a lot to take in, so it can be helpful either to take someone else with you or write them down (I know that is adding to your paper mountain!)

Do keep posting and if you want us to send out a pack, you can call and we will send it on.

best wishes

Lorraine

on behalf of the Information & Support team

Freephone 0333 323 7200 option 2