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MIL and Neuroendocrine tumour - is this cancer?

(11 Posts)
Twoweekcruise Sun 29-Apr-18 15:24:02

I posted about this a while back as MIL has been unwell for a year or two. She was diagnosed with a Neuroendocrine tumour of the small bowel and had monthly injections which seemed to help her.
However, she’s been quite unwell since Christmas with weight loss, very tired and in pain. She had various tests and scans but still no appointments to see anyone?!
Two weeks ago she was rushed to A&E with extreme pain sent away with pain killers and an appointment to see a liver specialist the next day. The specialist has given a newer diagnosis and sent a letter confirming this and treatment plan.
The problem is that both mother and father in law are adamant that the consultant has said the condition is benign and definitely NOT cancer but being is being treated like cancer?! But the letter reads like a cancer diagnosis so, as a family, we are confused and not sure if mil and fil are in denial, haven’t grasped the info correctly or are correct and this isn’t cancer but she is to start chemo tablets in two weeks time and has a Macmillan nurse visiting tomorrow?!
We are confused and worried 😟
Can anyone understand this letter?

OP’s posts: |
Mymouthgetsmeintrouble Sun 29-Apr-18 15:29:47

It is cancer im afraid , it doesnt respond to normal cancer treatments , the monthly injections are hormones to help with symptoms , its very slow growing but can cause other organs to struggle

Twoweekcruise Sun 29-Apr-18 15:40:23

Thanks My it’s exactly as I had thought. What I can’t work out is if my In laws are in denial or haven’t grasped the information given to them. I don’t want to mention the word cancer incase it comes as a complete shock. It they are going to have to know sooner or later. I even heard mil say to the Macmillan nurse on the phone, ‘it’s not cancer you know!’, hopefully she will gently inform them?!

OP’s posts: |
earlybirdhasanap Sun 29-Apr-18 15:45:06

It sounds like she hasn't understood properly or is playing it down to you. From what I read I understand it to be a slow growing cancer that has spread to her liver and lungs.
Have you tried phoning Macmillan to ask for advice?

Twoweekcruise Sun 29-Apr-18 17:05:47

early yes that exactly how I’ve read it. We are seeing them tomorrow night, I will see what the Macmillan nurse has said to them and take it from there.

OP’s posts: |
Mymouthgetsmeintrouble Sun 29-Apr-18 21:22:11

Its quite rare and not many doctors understand it , specialists tend to be very upbeat about it as the prognosis is usually quite good , unless it causes problems for other organs then it can make the patient very poorly indeed , i think that because they do not recommend chemo and radiotherapy the patient can look extremely well even when they are not at all well , im sorry your family is going through this its good that macmillan are taking care of her

Yvest Sun 29-Apr-18 23:38:57

I’m terribly sorry but it is cancer. However, looking at your report I can see she is under the Royal Free. My understanding is that this is an excellent hospital for this condition. Is she under Professor Caplin? If not, she should be as I believe that he’s a world expert and would be giving excellent advice. Hope she manages treatment well

Yvest Sun 29-Apr-18 23:41:42

By the way I don’t think she is starting chemo tablets. Everolimus is a targeted therapy which works differently and is unlikely to have such severe side effects. The dr looks like he would move to chemo as a later step

IJustHadToNameChange Sun 29-Apr-18 23:45:17

It is malignant cancer, it's in the lymph nodes and the liver mets are worrying.

It means the cancer has spread.

Take it one day at a time, OP. flowers

Twoweekcruise Mon 30-Apr-18 08:19:52

Thanks all, it is worrying and just as I had feared! Yvest I’m not sure who mil is under at the Royal Free, she hasn’t actually seen anyone from there, it’s all relaid back to our local hospital but thanks for that I will make a note of his name.

OP’s posts: |
Yvest Mon 30-Apr-18 10:59:45

twoweekcruise please do. I have a friend who has been living with metastatic neuroendocrine cancer for the last 5 or 6 years. I don’t think it’s much fun and the treatment has been hard but they still work full time and live well. I know that they’ve been on a few trials all through Professor Caplin so he’s definitely worth trying to get into contact with.

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