Hi my fellow NETs patients, I’m hoping someone can help.
I was diagnosed with small bowel NETs 15 ( 2010)years ago had small bowel resection was discharged after 5 years (2015) . 5 (2020) years later I didn’t feel well and after numerous tests diagnosed with metastatic liver and carcanoid syndrome. For 5 years I have been on 120mg lanreotide injections administered every 28 days. The disease is stable and I am doing relatively well.
Unfortunately just before Christmas I found a lump in my breast and have been diagnosed with breast cancer, I got in touch with my NETs consultant as I thought my cancer had spread, it turned out it is a totally different cancer altogether. He recommended that if surgery was needed I would have to have prophylactic treatment before having an anaesthetic.
The breast consultant ( at a different hospital than the NETs consultant) made an appointment for me to see an anaesthetist. The anaesthetist said that according to the NETs guidelines I don’t need Octreotide before surgery as this surgery is no where near the liver and I am responding well to the treatment I’m on. I said that I wasn’t happy about that and that I wanted her to get in touch with my NETs consultant as it was he who said I would need it.
She did write to him and his reply has left me quite confused. It reads:
Thank you for your detailed review of UKINETS perioperative management guidelines for patients with neuroendocrine tumours.
I certainly would agree with your interpretation of the guidelines and I think that is a very pragmatic way of approaching this case. However the anaesthetic team at the hospital where he works prefer to go direct to intravenous infusion despite the national guidelines. As far as he can tell there is no evidence for this and that the anaesthetist is right she should be following the national guidelines.
So at the start he was the one that said I needed it now he’s saying I don’t. The anaesthetist said they would have it in the cupboard incase I needed it. She won’t be the anaesthetist on the day of surgery it would be someone else.
Has anyone got any experience of anaesthetic and surgery and if they had the Octreotide perioprative management or not I am not sleeping worrying about it as it’s major surgery I need a mastectomy. I am also going to a hospital that has no ICU for the surgery. My husband doesn’t want me to go ahead with the surgery as he is terrified about me having the anaesthetic. I just don’t feel I’m going to be safe.
Hi NanaJac and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.
I’m Anne, one of the Community Champions here on the Online Community and, although I'm not a member of this group, I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.
While you're waiting for replies, it would be great if you could put something about your diagnosis and treatment to date into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
