Shocked & scared & confused now

[Clairwadey12]

Hello everyone my name is Clair & I am new to the site.

I have lung cancer for which I've had a Lobectomy on my righthand side. The tumour was attached to two sides of my pleura & was 7cm. My surgeon wasn't going to undertake surgery if it tumour was attached to the pleura but did so as he said I wouldn't have long if he didn't. Anyway I was getting ready for chemo, appointments to see my lovely oncologist yesterday & suppose to of had pre assessment today ready to start chemo Monday. Well my oncologist started to explain my CT Scan & then those words, "we think you either have fibrous tissue in the lung area or another tumour" but as they have their meetings on Thursdays my oncologist wanted the radiographer to take a look & if it's another tumour then I'd be having combined chemo & Radiopherapy. So my oncologist would ring me later to tell me the result & next step.

The phone call came & it's either a tumour in my pleura or my original tumour has rapidly returned so I'm to have another PET Scan to establish it & will require combined chemo & radiotherapy though I only had surgery 8 weeks ago.

I was unable to think of what I needed to know so am now wondering if my cancer will be restaged & my prognosis. Do I have a fighting chance & how long will I need treatment etc.

I am scared as it's the uncertainty.

Please I could really do with some friendly advice & I also look forward to meeting everyone on here.

Clair xx

[Hidden]

Hi Clair,l cannot reassure you at this point but hold on tight I am sure your oncologist will come up with a plan once all the correct information from your scan is back .Just concentrate on getting as well as you can be post op as that is hard enough to do and keep in mind that your oncologist is working on a treatment plan .My thoughts are with you as you must be feeling terribly stressed .

[frank7286]

clair stay positive the onc now their stuff you have to trust them , and yes from my case they only tell you so much but not all but don;t go down the what if road live life have some fun daily how knows whats around the corner ,new drugs and treaments all the time ,chin up .

good luck

[Myquest]

It seems to be a good sign that they order another PET Scan. It really is a very good diagnostic tool that will not only tell you what is really going on but also the doctors. It sounds as though they have some doubts about what they are seeing. My husband has Stage 4 lung cancer and we are handling all aspects one day at a time. Try not to talk to too many people around you because everyone knows someone with some type of cancer affliction. You are special and your oncologist wants to give you the very best treatment for you specifically. Oncologists do care and they know their business. They would never subject you to something you could not handle. Our oncology group has a mental health therapist on staff and I availed myself of her services-it was a good move. Please don't be afraid, dear, and you are never alone in this fight-the bully is cancer but we are all after him. Love and best wishes to you. Barb

[LorraineD Partner Roy Castle]

Clair

You are in a tough situation hoping for the best and fearing the worst. It sounds as though your clinical team are geared up and keen to get you the most effective treatment they can. This is a positive, they are not being complacent and the early planning and delivery of what is best to deal with your cancer is the best way to manage it.

We produce an information pack called: Lung Cancer Answering Your Questions which might be a useful way to reflect on what you have been through and organise your thoughts for the next, unexpected stage of treatment. It is a lot to deal with. If you need a copy we can send one free of charge if you call our helpline on 0333 323 7200 option 2 or you can complete the form on our website, roycastle.org

As Barb says you have had a lot to deal with the in the last few months so it is worth finding out what other support there is in your area. There are many great cancer support services, both NHS and those run by charities such as ourselves, Maggies and MacMillan. If you want to find out what is available in your area do get in touch.

meanwhile best wishes for the pet scan,

Lorraine

on behalf of the Information & support team

[Littleannies]

Hi Clair u are doing great, I feel the same as you very u certain of what's to come and still coming to terms with having ling cancer. This page and the people on here have been great. In the end we all have a fighting chance .

[SunshineAhead]

I had a lower left lobectomy in June this year. At my pre-op I was told that the tumor which was then 5. 7 cm(post op 5.1cm) was right up against the pleura and that as well as removing the tumor and all usual relevant lymph nodes, once in it may be considered necessary to also remove the pleura which would mean removal of 2 ribs and a full chest reconstruction in that area. During the op it was apparent my tumor was close but not touching the pleura and post op biopsies of the lymph nodes AND the pleura fluid indicated no cancerous cells in either. Is there any reason that was explained to you why they did not consider doing that type of operation at the time and were tissue samples of the pleura etc not taken and biopsied post op? I think it's important you ask this question as if not why not given the circumstances. If the pleura was clear then it would seem unlikely in my humble opinion, the same tumor has returned already so forcefully. It may be this would at least in part have avoided you being where you are now? I know everybody is different but I'm a little confused with my knowledge of lung cancer chest ops that this wasn't an option at the outset. Maybe this was explained pre op?

As everybody else has said though it is right that we are all unique in our own actual cancer specifics, whether it recurs or not, rates of growth and spread and how we react to different treatments. It is correct that the oncologist is looking for the best pathway for treatment for you so be confident in that and do not hesitate to email your lung cancer nurse with any questions or concerns you may have -he or she will revert to you quickly and helpfully. I think the main questions at this time should be to the surgeon as the oncologist appears to be doing his job at this time.

I am a firm believer of self advocacy and asking questions should not cause nuisance or offence to anybody but they should expect it. Good luck and stay positive.