They found NET in appendix during my appendectomy
I am a 37 year old mother of two and I recently found out that they found a grade 1 carcinoid in my appendix (thankfully removed now) but I was told by Limerick (no formal meeting with them or appointment just third hand information as I was in a different hospital for a separate issue when the news came through the other hosptial. I was told to find an endocrinologist and this is proving difficult due to long waiting periods even as a private patient. Now my GP has referred me to a doctor that specialises in gastro/colon issues. Nobody has explained what my next steps are and I feel so lost. I never even received a letter from Limerick with the information but on my discharge letter I learned that the PNM is pT3nXmX and that the margins are clear, tumor was 11mm but that the tumor reached the periappendiceal fat.
I have so many questions and I have no idea whats going on. I can't sleep at night but I feel perfect with no symptoms at any stage. Has anyone experienced similar? I can travel to any part of Ireland to be treated but don't know who to be referred to or where to start. I'd appreciate any information as everything I'm looking at is not based in Ireland.
Comments
Sorry I hit send before I finished the message. I think I was saying it is important that you get referred to Vincent's - you may have already been referred, I know you mentioned long waiting lists. That wasn't my experience but my cancer had spread. There are two Facebook groups if you are on Facebook and there is also a website - neuroendocrinecancer.ie
Hope the above is helpful. I'm not sure if you can message me back. Hopefully you can. Ciara
Ok I'll start again. My first message didn't send.
I am also 37 years old and have two young kids, a 3 year old and a 1 year old.
I was recently diagnosed with a very rare neuroendocrine cancer. I am so sorry for how your diagnosis was communicated to you.
I am under the care of the Neuroendocrine service in St Vincent's University Hospital, Dublin. They are the national centre for NET.
Ignore the above. Now seeing the first message had sent. Sorry for the duplication.
Dear seekingsunsets.
Thank you for posting on our online forum. I am very sorry read about your recent diagnosis and the way by which you were informed. I am sure that this must be a very worrying and stressful time for you.
The National Centre for Neuro Endocrine Tumours is in St Vincent’s Hospital in Dublin. They accept referrals from across Ireland and cases are discussed in their NET multidisciplinary team (MDT) meeting, held every two weeks. They have an outpatient clinic every Friday morning. The team who performed your surgery need to refer you to this service, as you will need a copy of any imaging you have had to date on a disc and a copy of your biopsy results.
I am glad that you are currently feeling well, but as you rightly describe, the time waiting for a treatment plan or to have your questions answered can feel like an eternity. If you would like to talk to our cancer nurses we are here and are happy to listen and answers any queries you may have. Our number is 1800 200 700 and we are here Monday-Friday, from 0900-1700.
Kind regards,
Cancer Nurse
Hi There,
I'm also 37 and a mum of two. I was recently diagnosed with a rare neuroendocrine cancer. I am under the care of the NET team in St. Vincent's Hospital in Dublin. They are the national centre for NET. I am so sorry this is the way your diagnosis was communicated to you. I completely understand the fear but I am told people live a long life with these cancers. It is really important that you are seen by Endo