Sorry new to this site " HELP NEEDED AS TO WHAT HAPPENS NEXT ( 2ND ATTEMPT )

Hi Paul - sorry to hear everything you're going through. I can't help with any practical information but I just wanted to say that I hope you get some answers. My brother already had cancer so when they found something on his lungs via the xrays they were fairly sure right off the bat that his cancer has spread (which they turned out to be correct) but I guess no-one here wants to start worrying you with that until you have the diagnosis confirmed. I think the oncologist got involved after the xray - then he had a scan followed by an operation where he was put fully asleep and they inserted an endoscope/camera down his throat. They took a biopsy but it turned out that it wasn't 100% conclusive - however at the same time he also had a lung infection and couldn't breath too well so they also started draining his lungs down and put a special powder in between the lung linings to shut them together to stop the lungs from filling up with fluid again. But as you can see this story is far different from where you're at this moment - so it's as near as useless in helping answer your questions. If I were you at this stage, I'd start looking at getting yourself as healthy as possible using a diet designed to beat or slow down cancer - combined with any other natural stuff - just so you can feel like you're doing "something" while you're having to wait because the inaction will probably make you even more stressed. I'll keep my fingers crossed that it isn't cancer. Big hug. Nic xx

hi paul, im mark age 40, i dont know if i can help much but here goes with what i know.

I went to gp and after several months of inhalers and breathing test for astma i started coughing up blood,

i was then refered by mt GP to a doctor who specialised in chest and breathing and got CT scan which they though was clear but later found not to be. still being unhappy with results the doctor carried out a bronchoscaphy during which he found a tumour in a bronchial tube. He removed some of the growth there and then as a sample and done a wash sample which is adding fuild to the area of the lung and then sucking it out to get a sample. I know this sounds very uncomfortable but it was not really too bad.

even before it was confirmed it was cancer i had an appointment with the surgeon and discussed what he wished to perform in the operation (in my case because it was in the tube it had to come out anyway). then the operation was performed a few weeks later with what has been a sucessful outcome in follow up tests so far (only one more to do). the team which i was refered to by my GP are still in contact as follow up care.

hope that helps paul and keep us informed of how you get on. I will hope and pray you never have to experience that sinking feeling again.

mark

Hi Paul.

Sorry to hear of your problems, i am also Paul 57 with bladder cancer for just over 1 year now.

Although i dont have the same problems as you, i have been through the mill in a similar way to yourself and i know what you are saying and going through.

All i can say is either take someone with you when you visit the hospital so they can understand and digest what you are being told, or make notes yourself, go prepared with written down list of questions, it doesnt matter how relevent they are really, if you have written it down it must mean that you want an answer to that particular item of concern, I have found that all these consultants and registras are very busy people, but when they see you have taken the time to think about some pertinent questions they are only too pleased to go through them with you, you will also find that all the Cancer specalists are very well able to explain what and why etc. however i find that within a few mins of leaving the hospital i have forgotten what was said, so write down the answers or have someone with you that is not emmocianally involved, its quite normal for you to be extremly worried, i know i was which is why you will not be able to retain the information, you can also research on this site your condition, that will explain what happens next and so on, you have come to the right place, and will find many people to help you along the way, so you will not feel alone.

Try not to worry too much as treatments these days are very effective in quite a lot of cases, and wait until you have all the facts and information before jumping to any wrong conclusions.

I had written a few blogs when i was first diagnosed which you might like to look at, i am sure you can understand the way one feels being told straight out this information, for me i was on my own, had just gone for a routine check up having passed some blood in my urine a few times, it was not in my mind that i would be told i had cancer, to say i was devastated would have been an understatement, and it has affected me, but i am dealing with it.

I hope i have been of some help, and if you want to chat get in touch.

all the best

Pauli.........

Hi Pauli, Mark and Nic,

Many Thanks for your replies, they have been of great help.

I am so sorry to read about your problems, I didn't realise just how many people must be going through this terrible course of events in their lives, I suppose you dont until it directly effects you. My father died of lung cancer and was the same age as me when he was diagnosed and died when he was 50. This was very hard for me as I was looking after him at home right up to the day before he died, he had asked me quite early on not to send him to hospital until the very end. I wish I could have found this sort of support back then.

Mark : I too have had lots of tests for Astma and have always had chest infections from a very early age, some worse than others one particular time causing a collapsed lung. Result of testing for astma was negative.

Paul : I was wondering what to do about who to take with me as most of the people around me will be emotionally involved. I was thinking of taking my phone and recording the consultation as I think it will be my wife who will be with me and she is, lets say more of a wreck than me at the moment. Do you think they would mind me recording. I know I will just switch off at some point and then be wondering what was said.

Nic : I too have been struggling to breathe on occasions over the last week or so and my voice has now become hoarse and gravely, Jackie ( wife ) finds it quite sexy  lol.

Was up until 4am pondering as Im sure many people in this situation do, up again at 7am and still pondering. Its now 12 noon and still no call from the hospital re CT scan appointment, how long does it normally take ? I thought they were going to calll me on Friday. Should I call them or just wait.

From what I can gather there will quite a lot of waiting for appointments and results etc. Not good.

Once again many many thanks for your posts they are very much appreciated

Hi Paul,

I hope you have heard from the hospital by now, but if you haven't phone them,  It is christmas week and they will be very busy, but you need to know to put your mind at rest, and the more of a pest you are the quicker they will deal with you.  Of course,  with all the bank holidays it will throw their schedule, but they should still see you within the 2 weeks that they use as a marker for emergency cases. (Orange tagged I'm told).

As Pauli said, take someone with you that can remember all the information given, (I have heard of patients recording it ), and write down all the  questions you have and write down the answers as well if you are llikely to forget.  I think once you have recovered from the initial shock you will find it easier to assimilate the information you are given, but Please make sure you include your wife.  You will need her support so don't shut her out.

I'm afraid I can't tell  you the order of the tests,  not having been that way involved, but I woudl be surprised if anybody gave you the results before you see a specialist doctor, probably for respiratory problems.

I wish you all the luck in the world and hope they sort you out soon.

Love n hugs

Viv