Endocrine Tumour

Hi Suzanne, welcome to the group, but sorry you find yourself here.  Sorry you haven't had a reply yet, I think this is a rare lung cancer, as I haven't come across it before. 

I believe the scan may be similar to a PET scan, where you have an injection of a radioactive tracer before the scan. Sorry I am not help, hopefully somebody else will be along soon to share their experience. 

Hi Suzanne,

My Dad was diagnosed with Neuroendocrine large cell carcinoma in November . It is a rare cancer . The cancer originates in the the Neuroendocrine system . What I have found is that you absolutely must request a referral to one of the 12 centres of excellence in the Uk , There is a specific charity Neuroendocrinecancet.org.uk . There is an excellent Facebook group with nurses who can signpost you . I have found there is information but you have to find it out for yourself and there is treatment options . Insist on a referral to one of the centres of excellence - the list is on the Neuroendocrine cancer org website . You are going to have a scan that lights up your cancer to check locations . It is gold star of scans so it sounds to me like your current team are on it. Do look at the website I have said and joint the face book groups . They have pointed me in the right direction to support my Dad . Wishing you all the best xx

Hi Jom123, many thanks for your lovely reply and I hope your dad is doing well and receiving the treatment he needs.

I have looked on the dedicated Neuroendocrine Cancer UK website which does indeed have some invaluable information and support but I just thought it would be nice to be in touch with someone who has experienced this. Sadly it seems to be so rare that no one has come forward. 

My oncologist is well versed on Neuroendocrine cancers so I feel I am in good hands.  Just waiting for the Octreotide scan now and that in itself is a source of worry for me because I really hate having scans as I am claustrophobic and not too sure what to expect. I am told that I will have the injection at 8.30, then a 30 minute scan ant 10.30, then a scan at 12.30 for one and a half hours! How I will cope with that I don't know.

Thanking you again for your reply and my best wishes to your dad.

Kind regards, Suzanne

Hi Suzanne ,

my Dad doesn’t relish the scans either but just focus on they are doing you good and helping you get the best treatment . Knowledge is power. The face book groups are good for natters about such things . I have my Dad on wheatgrass now frozen sachets you add to juice they have really boosted his platelets through chemo . 
Your current team really sound like they are totally all over what you they need to investigatively . So take it a day at a time . The face book group run by Ronnie Allen is very good . He writes lots of blogs and has lived with neuroendocrine cancer for over a decade . Read his blogs very informative and uplifting . There are treatment paths and there is certainly hope and positive options . You will gradually navigate your way . Just keep reading . Really happy to say in touch . Take care of you xx

Hi Jom123

Yes you are right in that to keep focused and positive is the right thing to do and as you say, "knowledge is power".I intend to have a look at the Facebook group run by Ronnie Allen and i am sure I will find it very informative, especially as he has been living with it himself.

I hope your dad continues to do well through his chemotherapy. I know how gruelling and brutal it is because I had breast cancer in 2002 and was treated with chemotherapy and radiotherapy after having a mastectomy. This time however, my treatment will be monthly injections.

Thanking you for your lovely reply, Suzanne