I have been reading a few of the other posts on here about the octreotide injections but didn't want to crash anyone elses questions. If the octreotide scan was negative with no uptake, I originally thought that negative was good in all results but am I right in thinking that actually it would have been better to be positive so it could be used as a treatment ? Also even with a PET scan will it just show as negative again and not be able to be used as a treatment. Sorry to ask but I am trying to work out what this all means and for some reason my brain seems to have deserted me. When we first got told about the carcinoids, the GP said that it wouldn't be the carcinoids that took mum but looking into it further, it does seem to be more serious than this and that some people do go from it, so I am a bit confused as to what he meant, has anyone else had a comment like that and knows what he meant by it being something else that would take her, it just seemed really strange at the time?

Hi Ellie

PET scans don't depend on the uptake of octreotide so don't worry about that. They are a bit of a "Rolls-Royce" scan - the scanners are phenomenally expensive - but they are fast and get very good results. If used with a gallium radioactive isotope, they produce the most accurate and sensitive scans available for NETs.

Much better than octreoscans which depend on the cancer cells having much greater concentrations of somatostatin receptors than the surrounding normal tissue. This is fine when it works but it is a bit hit and miss for some patients.

I'm guessing on the GP's comments that this was intended to be reassuring. You might be reading too much into it. Personally, I'd be wary about any GP's level of understanding of NETs - you should listen carefully to what your specialist team have to say at the hospital, 'cos they are the experts. Be sure to make written notes at your consultation meetings and question anything you don't understand.

Best wishes
Tim

Thanks Tim for the reply, it's reassuring to know that the scan doesn't depend on the uptake.I am hoping that the hormone treatment doesn't depend on it either as we are hoping mum can start that after the scan results are back. We haven't come across a PET scan yet. lots of other ones but not this one. Not sure how long it takes to get the appointment but I would imagine it takes a while if a lot of people need to go up to London for one. If I am honest, I didn't really ask many questions at the NET hospital because I am afraid that if mum hears the bad stuff she may get worried and then that may make the whole thing worse and maybe make the things grow quicker. They didn't say anything about how quickly it can all come on or any time prognosis etc, they also didn't say why it can't be cured like other cancers can, if it is a cancer then I thought they would sap it with chemo or something like that and then it would be cured and gone but to just leave it there seems really strange and not at all what I would have thought. If you ask the questions do they put it bluntly or will they dress it up a bit so it doesn't sound so bad. Being very cowardly at the moment and asking questions here when I should be asking at the appointment. Thank you for the info about the PET scan. Best wishes, Ellie.

Hi Ellie
I've been reading your posts and I sense a frustration of waiting for scans before your mum is able to start her injections.
I'm new to the forum my NET tumour with liver mets was only diagnosed in Nov. I'm hesitant in my response as it is all new to me too and very much learning fast! This is very much what happened to me and will be specific for my medical team - please read with care as it may be different for others.

My ocreotide injections were n't started until I'd had body CT scans and ocretotide scans with SPECT - for me it was a wait of about a month - it seemed endless!
I was keen to get started on the injections and felt psychologically this would feel something was happening to prevent the mets in my liver growing. My consultant and specialist nurse took time to explain that this is the information gathering stage of my journey - the multidiscipinary team of Drs would need these scans, 24 hr urine samples and blood tests to be more specific about my 'treatment' (not to make anything better nor go away but stabilize/ slow the growth of the tumours).

The hormone/ ocreotide injections were delayed til after the scans because the cancer cells are 'hungry' (like a sponge) for the ocreotide. The ocreotide injection used during the scan had some radioactive labels which would give good images of the distribution of the cancer cells. Also if the NET and liver mets were hungry for ocreotide this would offer the consultants different options in the future to try and stabilize/ slow the growth of the NET and mets.

Post scans I had a week of 3x day injecting small amounts of ocreotide and am now on monthly ocreotide injections - my second tomorrow!

I have a supportive GP but she knew nothing about NETs but is keen to learn! She suggested I consider it like a chronic disease rather than cancer as it is very indolent and slow growing. My consultant explained that cancer cells that were taken in my liver biopsy are slow growing and therefore not appropriate to be treated by chemo. (Chemotherapy is more appropriate for the more aggressive types of caner.) Where as radiotherapy may be appropriate and is being considered.

This leads me to adopt the concept of 'living with cancer' rather than 'dying of cancer' - Easier said than done and the emotional roller coaster continues!!!

My thoughts are that information can be powerful and may give you a better understanding and certainly has been better for me than reassurance and accepting all will be OK or staying in the unknown.
Does your mum have a specialist nurse who you could talk to to and share your fears or glean more information?

I hope this may offer you some insight - the information leaflets on this site have been helpful in explaining to other family members and friends as they too have similar questions as I and helped us unravell this new situation together.

Hope your fog will clear and the journey for you and your mum become easier,

Linda

Thank you Linda, I'm glad your injections are going well and you are onto the monthly ones, it must make it less painful to only have one a month, you have a great attitude to all this which is fantastic. You are right about having more information and I will try and see if there are nurses I could speak to on the phone rather than with mum so I can get all the questions out of my system lol. I think you are probably right that it is frustrating on how long things take, we wasted so many months in the beginning before I found that there were specialist NET centres, it took about 10months to get to London and we are 1yr on next month since first finding out about it, so it just seems to go so slow . It's about a month now waiting to hear about the scan so fingers crossed it will be any day now and then we can start doing something with it. Thank you for replying, you hear all the time about how acting quickly can make all the difference with cancer, that you think it should all be happening sooner rather than later but I suppose you have to get your head around the fact that it's a different type and you can take longer to do things, thank you again, best wishes, Ellie.

Hi Ellie

Linda's post is spot on about the seeking of information - and the fact that you are doing the "digging" rather than your mum is incredibly valuable to her, though she may not realise it at the moment. Some people choose to leave all in the hands of the medics but I'm a believer in the philosophy that information is empowering, especially in the fight against cancer.

I'm not saying that this approach is for everyone but you will feel a bit more in control and less stressed through understanding what is going on rather than being completely in the dark.

Best wishes
Tim

Hi Ellie,
So sorry to read about your Mum but pleased you are doing such a good job of supporting her and tryng to obtain information. When I was first diagnosed my daughter had to ask all the necessary questions as I was so scared of hearing the answers. Your Mum is probably in a little "bubble" at the moment as she tries to make sense of it all.
Tim and Linda have given you excellent advice and info - particularly liked Linda's take on the mechanics of it all. The disease is totally illogical and whereby sufferers of more conventional cancers can ask G.P. and Oncologist nurses we only have M.D.T. to answer our questions and sometimes it seems an age between appointments. I was diagnosed with it in 2008 but they think I have probably had it about 20 years ,unfortunately I was misdiagnosed for many years. It was only when I was experiencing carcinoid crisis on regular basis they decided to look further and the rest is history as they say!!
The people on here are wonderful and if you are worried or frightened just come and share it with someone. We all understand exactly how you feel as we have all been there and waiting for each scan result I would say most of us go to pieces ... you are at the early days of diagnosis and haven't had time to come to terms with the shock so don't be too hard on yourself.

You sound a wonderful daughter and your Mum must be very proud of you....

Take Care pet
Lin x

Tim and Lin

Thank you both so much for your kindness. I have taken your advice on board and arranged a telephone appointment tomorrow with the NET nurse at mums hospital and will ask the questions we need to and see where that takes us, I think you are right that information is empowering and being able to take back a tiny bit of control will probably help mum feel more in control of what is happening instead of everything just happening around her with her having no idea what or why. Thank you for the gentle push, I needed it as I was too worried that I would offend the medical staff if I asked too many questions. I'm glad your daughter was able to help you through the beginning bit Lin and I wish both you and Tim the very best.

Best wishes, Ellie