Am I being silly?

[lesley51]

My husband was diagnosed as terminal in Dec and was supposed to get chemo in Jan. The pleural effusion was not malignant when results came back so then stage 2-3. He had brochoscopy, Pet scan, another bronchoscopy and was referred to Papworth where he was told removal of lung was a curative option. Surgeon wanted to do exploratory first which he did, then two weeks later husband went in to have lung out. Had chest x-ray then CT, admitted to ward, signed consent forms and then told cancer spread so the could not operate. By this time it was March and he had had no treatment at all, We decided to move to be close to family so he started chemo in April. All that goes round in my mind is that if they had started chemo in Dec or Jan it would not have had a chance to spread. Does anyone know if this is true or am I just being silly. We went from terminal to curative to terminal again in 4 months.

[JoannaHoyle Roy Castle]

Hello Lesley

I think you are bound to be looking for answers but I don't think anyone can give you an assurance that it would not have spread if the chemo had been started earlier. This is a difficult time for you both and naturally you need reasons, answers, support and reassurance to help understand just why and how this has happened and the obvious question of what will happen now? I suspect there is an elemant of shock about everything too. Please speak to your husband's lung cancer nurse and his oncologist as they are the experts and can give the best information as they know his case etc. Try not to let these thoughts dominate as you need your energy for your husband and your own wellbeing. I understand this will be difficult but take each day as it comes and get as much support and information as you can. Family, friends and the MDT will be your first contacts but for yourself sometimes talking outside of the immedient circle may help. Being in contact here is just one way but there are other avenues such as a carers group, talking therapies or even your GP. I wish you both well and thank you for sharing with us. I hope the chemo goes as well as possible for your husband.Take care. Joanna x

[katw]

Hi Lesley

I think we all look for answers, we all do 'what ifs'. But I agree as Joanna says not to let these thoughts dominate. The tests really do take a lot out of you both and all the uncertainty is frustrating, I understand your frustration with the different outcomes. All the way through we were told to expect the worst as cancer was stage 3; in the end they did operate and husband is waiting for chemo. This said I do think you should speak to the pals service at your hospital as it may help you to voice your concerns and get some sort of an answer as it seems awful that you were told the op was possible just to have your hopes dashed. Try and talk to someone about it as this may help you stop turning the thought around - which will be detremental. Your concerns need to be heard and answered, so do seek out someone to help. My thoughts are with you and I hope the chemo goes well and you can both find some peace of mind. Take care.

Kath. X

[Hidden]

Its very hard to come to terms with a diagnosis of lung cancer. They cannot always be sure of the stage until all tests are done and then the best possible treatment plan will be decided. Even when they operate sometimes it is not until then that they can see any spread. I went in for a lobectomy, had a thoracotomy and once inside (and only then, I had had 2 CT scans and a chest xray) did they see the spread throughout my lung and in the pleural space) So I had a double whammy of having to get over a major operation that didn't remove anything apart from a biopsy aswell as come to terms with a diagnosis of a stage 4 ung cancer and start chemo. That was now 14 months ago! I had my first CT scan 5 months before the surgery, they saw the mass then and diagnosed pneumonia (even though I had not been ill!) so I went 5 months without treatment. INon small cell cancer is slow growing so I don't think a few months would have that much bearing on it being operable or not. Don't waste tie with the 'what if's' you have to concentrate on the 'now' make the most of everyday and be positive, look at me, I still feel great and a doing really well. I don't use the word 'terminal' everyone is terminal, even 'non curable' cancer is 'treatable' they treat it as a chronic illness.

As the days go on you will feel better and will be more able to cope, I proise you. In the mean time positive and make sure your husband stays active. I've done alot of research and the eople who see to be doing the best are the one's who stay active and positive.

Lyn x

[lesley51 in reply to Hidden]

Thanks Lyn, that really helps. We retired when he got the diagnosis but we make sure we are both active and have plenty to look forward to.

It is good to hear from someone going through the same thing as him and thank you again. Lesleyanne x

[Hidden]

Hi Lesleyanne,

we both retired too and are trying to everything we thought we would have 20 years to do! Glad to be of help,I'm always here if you need anything.

Lyn x

ps. the letters on my keyboard are sticking and I've noticed there are lots of letters missing from my previous message lol