Stomach neuroendocrine cancer

[EmpressSuiko]

Hi everyone, I’m posting a bit prematurely but yesterday my DH was diagnosed with neuroendocrine cancer.

He isn’t great at remembering conversations but the doctor seemed to say that right now the tumours aren’t a great cause for concern but my DH will be needing another endoscopy next week to confirm what stage they are at and then will see the specialist who will explain everything to him.
The dr also mentioned drugs that my dh may need to take and that he will need annual check ups to monitor the tumours.

I’m assuming he is in the early stages and wondered if anyone has had experience with this cancer and how it may effect him going forward? The dr said he has paitients who’ve had it for years and are still living healthy lives so it’s sounds like he could have a positive prognosis? I know it depends on the individual but thats why I thought I’d post and ask others of their experiences as well.

They found the tumours due to my husband having bowel and stomach issues for years now, he finally went to the doctor last year but Covid delayed him being seen by several months, they mentioned polyps in his stomach which are the tumours.

I’m a mix of emotions and unsure if my DH is downplaying it for my sake as he knows I’ll stress, he handles these sorts of situations so well, he is so calm and has a what will be, will be attitude and that fretting changes nothing which is true but it’s difficult to not worry about the future, we had two dc and I don’t want to imagine a life without him.

Many advice or information is much appreciated.

Sorry that your DH has been diagnosed with a NET.
My MIL was diagnosed with a small intestine NET about 5 years ago. She had monthly somatostatin analog injections which worked really well for several years. They did try her on a course of chemo tablets 3 years ago but unfortunately she had a terrible (and unusual) reaction to it so couldn’t continue with that treatment.
We went to a couple of talks about the condition and there were a couple of patients also talking about their experiences. They had a treatment called Peptide Receptor Radionuclide Therapy. Several of them had the treatment 10 years ago and still doing well.
My MIL was supposed to have the treatment this year but sadly it was cancelled due to Covid.
There are some support groups on Facebook, one in particular is run by a man called Ronny Allan he has had a NET for years and still going strong.

Thank you for your reply, I’ve found Ronny to be very informative, I’m sorry to about your MIL, I hope she is well and will soon be getting the treatment she needs. It’s all been a bit of blur and we are trying to gather information and questions that we want to ask the specialist when we see him. DH had a bit of a moment today when he realised he has cancer but we are staying hopeful that any treatment needed will have a positive result and not impact on his life, obviously only time will tell but we can only hope for the best.

Sadly my MIL passed away 8 weeks ago mainly because the treatment was put on hold due to Covid which we are very upset about. She was nearly 80, I gather that the younger the patient is the longer they can live well with the disease. From what we were told by the oncology professor MIL was under it doesn’t spread as rapidly like a traditional cancer would do or to areas that other cancers would. The professor said that in general this cancer is less aggressive. Wishing your dh all the best.

We are only an hour from London. The London Royal Free was the hospital which specialises in NET’s which is nearest to my MIL. Is your dh under a hospital which has an interest in NET’s? As it’s quite an unusual cancer it’s worth getting info from as many specialist sources as possible. We found that some of the gastroenterologists at our local hospital weren’t that knowledgeable about the disease.

Oh I’m so sorry to hear she passed, my condolences to you, my dh is early 30’s so it’s been quite a shock for us. We’ve been told the same, that it is a slow spreading cancer. The main aims to confirm what stage the tumours are at so they can decide what treatment is best, upon googling I’ve seen a DR from the royal free hospital works at our local hospital and she specialises in neuroendocrine cancer, I’m unsure if will we be seeing her as I don’t think we’ve been given a name yet but hopefully he will be assigned to her.
Thank you for giving my so much information, it really is very helpful to me

Thank you. That must have been a huge shock to you both. There were a few young patients at the meetings we attended. They were all doing very well and looked very well too. We were told out of all the cancers to get it was one of the best ones (as wrong as that sounds!).

Sorry, me again! If you haven’t already found them there is a good support group on Facebook called NET patients & PRRT.

Don’t apologies you’ve been so helpful, I truly appreciate it! My husband is seeing the specialist from the royal free hospital so that’s reassuring and we are both trying to stay hopeful that it’s in the early stages and can be managed for many years to come, I do have the odd moment where I panic but I’m trying to ignore those thought and focus on the good points. I’ve requested to join a couple of groups but I’ll look at that one as well, thank you.

Hello, although this is an old thread, I wondered how your husband is doing, as I have recently been diagnosed with stomach NETs. Thanks.