new to this, advice please

Spot on dslippy you need to calm down spurs and be careful who you upset this process takes time. From the point of the endoscopy they are analysing the biopsys of your tumour to work out the best treatment. The ct scan is a lot quicker and they get the results much faster you should be relieved they come back with no spread, not everyone is lucky enough to hear that news. The pet scan takes time and is a lot more detailed you need to be patient.

• It’s a frustrating time. I read the target time from diagnosis to treatment is 62 days just to give you an idea. Mine is about that diagnosed 3/5 and started chemoradiation yesterday 5/7 . You do have to be patient and when you get your results this time you may need further tests too. I needed a PET scan for one remote node which showed as enlarged on the CT scan. In the PET scan it was still enlarged and there was slight colour - grey so one of the lower end uptake of glucose. So I then had to do a endoscopic ultrasound with fine needle aspiration biopsies and wait about 2 weeks for the histoogy results! The good news is that no cancer was detected in that node and I can be put on the chemoradiation and surgery option. I’m so grateful they haven’t simply rushed and said there’s spread so palliative and I’m happy they are not considering surgery when there still might be rogue cells in that lymph node - they’ve been very thorough and have a good treatment plan. Your MDT will get the best one for you too. It’s just waiting. Leave the worrying to the hospital, you can’t control how long that will take try to spend good time with family and friends and look after yourself to prepare for treatment.  Once they get all the test results it picks up pace and you’ll soon be there for treatment. 

es it the waiting that is frustrating, as i have felt this cancer inide me getting worse and more painful, but nothing i can do about it, i just have to wait, what does get me is that no treatment is given for the bits they do know about, surely that would help slow it down

Hi Spurs

I read your earlier posts but didn't respond because others had and there was not much that I could say that they had not already said.  From your very short post today, I feel your fear, and I want you to know that the medical professionals will do the very best for you that they can. Sitting on the outside of something we can always become frustrated and angry as to why this isn't being done or that isn't being tried and our own fears and frustrations can quickly overtake any positives that are happening around us.  

I understand too that you may not feel that there is anything positive in being told you have a 1cm ulcerated tumour, so what I want to say to you is,  although you may not think it at present, everything that can be done is being done. If treatment were to be administered without all the data, you could be given the wrong treatment, which could do more harm than good and that would be terrible.  

My husband had severe pain from his tumour, he could not eat, whatever he tried made him physically sick, he was often awake both day and night with the pain and was exhausted. So although I have not gone through it, I do understand what it is to watch that pain, to be powerless... but then, out of the blue my husband changed my mindset, I was not powerless, I could in fact do anything and everything I could to keep him and our family as positive as possible .. easier said than done, but necessary.. 

Please if you can give yourself some positive attention, whatever it takes for you to fight back the negatives. It is harder to be positive, it does take more work to beat back the scary thoughts that take over most of us at a time like this, but you have that power! 

The Macmillan team are available to you on the end of the phone if you were to feel that discussing things further would help you, the number and times of availability are in my signature. 

Stay strong, the help you need is not too far away now. 

Lowe'