What is a normal range for Chromogranin A test? Mine was 99 in 2021.

Hi Teresa thank you for reaching out. For the last couple of years I’ve had bowel issues and clear colonoscopies. In the last three months, I’ve lost weight, have increased episodes of diarrhoea, headaches, fatigue and facial flushing. Sometimes I don’t actually know I’ve turned pink and have been told by others. On other occasions I feel heat but these are dry flushes. I asked my primary care if this could all be menopause related as I’m 57 and I know my oestrogen levels are low. She said unlikely and the symptoms as a whole concerned her and a first step and while rare, is to rule out carcinoid. I was shocked but grateful she had the clinical suspicion because I’ve been put in the IBS bucket for the last couple of years. I do my urine test tomorrow and bloods the day after. I feel very frightened.

It is normal to feel frightened, @daisy1907. This is a rare type of cancer and that increases anxiety. It is great that your doctor was aware of the possibility of carcinoid. Not all doctors are that attuned to this type of cancer.

I look forward to hearing from you again as you search for answers. Will you continue to post as you continue this diagnosis process?

Yes I will, because these posts can be helpful to others going through a similar process.

Hi may I ask your symptoms before diagnosis? I’m currently being tested for it but I have facial flushing which I’m told suggests is not stage 1. I’m also in the UK

I thought I replied but if I didn’t here goes . I presented at stage 4 with symptoms of needing to go to loo straight after breakfast and it being more diahrria. Perfectly fit with a bit of flushing occasionally. Was really shocked as j was perfectly fit and healthy. However it I as more important with NET cancer to know the grade not the stage . The grade determines the rate I which it grows it’s a ki67 percentage 0. To 100. 100 being the fasted rate. And it is importsnt to know if it is well or poor differentiated as this determines if the cells are behaving more like normal cells . Finally do not despair until you have the facts as you can live for decades with low grade well differentiated nets even if stage 4.

I thought I replied but if I didn’t here goes . I presented at stage 4 with symptoms of needing to go to loo straight after breakfast and it being more diahrria. Perfectly fit with a bit of flushing occasionally. Was really shocked as j was perfectly fit and healthy. However it I as more important with NET cancer to know the grade not the stage . The grade determines the rate I which it grows it’s a ki67 percentage 0. To 100. 100 being the fasted rate. And it is importsnt to know if it is well or poor differentiated as this determines if the cells are behaving more like normal cells . Finally do not despair until you have the facts as you can live for decades with low grade well differentiated nets even if stage 4.

I appreciate you sharing your journey with NETs, @janmar1960. Could you share about the type of treatments you have had (surgery, monthly injections, etc.)?

How long ago were your NETs diagnosed and are you having good symptom control, now?