Neuroendocrine tumours

Neuroendocrine tumours are a rare type of cancer that affects the neuroendocrine system, which produces hormones. This group is for anyone affected by neuroendocrine tumours to come together, share experiences and ask questions.

New here.

Alibearkins
Posted by

Hi all. 

I am new here, looking to educate myself on neuroendocrine tumors and treatment ... I was just recently told I have a lung carcinoid tumor... 

I will share a short version of how I got here. At the start of this year, I started coughing. A bad, persistent dry cough that made me vomit at times. Nothing touched it. I've had asthma symptoms on and off for about 6 years, but it was deemed allergy induced, but no one could say what the allergy was. It responded to treatment so I just moved along. 

About 3 months ago or so I had an asthma attack that didn't response to my inhaler. Went to A&E and got treatment, but they kept me when I mentioned the cough, and that the treatment didn't fully resolve my breathing. Ended up getting a chest x-ray, after which the doctor rushed in, looking wide-eyed, and said there was a mass. He seemed very surprised, and kept stressing the importance of chasing up my GP to get a CT scan right away, but he wouldn't give me an idea as to the size of the mass or what it could be. 

I eventually got the CT scan, at which point the consultant said she felt it was a benign lesion. She said she would be happy to call it that if I didn't want to pursue further tests to confirm. I wanted that peace of mind, so I had a bronchoscopy and a needle biopsy.... when I went back for results, I was so upbeat, thinking this would confirm that nothing is wrong, and I could move on. When I saw 3 people in the room I was brought to, I knew it wasn't good news. 

I was too stunned at the time to ask questions, or get more info. I'm seeing the surgeon in 2 days, as I was told surgery is really a must. I am terrified of the very thought of surgery, and told them so... but they said if we don't remove it now, it will eventually cause more issues and maybe spread.

has anyone here had a lobectomy? what are some good questions I should ask? Is anyone willing to share their experiences, or give me any helpful information? I just want to live a full life and there is so much I've not done .. I am really afraid, truly, and don't know what comes next...

Thanks for listening. Time for me to explore other posts in this group. 

Lots of love and healing to you all. 

Ali 

Ronny.a
Posted by

sorry about your diagnosis.  Many NETs are slow growing, I guess that's why the consultant felt it was a benign lesion.  However, they always have malignant potential thus why you need to be seen by a NET specialist if possible. I have an article with 10 questions which might be useful for you to crib from.  It also contains links to NET specialists in UK - 10 Questions and NET Specialists

Bluejuice11
Posted by

HI Ali

I have a very similar story to you  ( have posted in' lung carcinoid' thread today ). I had a bi-lobectomy in March 2016. Have you had your op yet - how did it all go? C

Alibearkins
Posted by

Hiya .I will have to check out your post! 

I'm five weeks post op today .It went very well actually... Better than I expected... Healing well at home and trying to plan when to get back to work. How did yours go ? Any recurrence? What kind of monitoring do you get ? I know every case is different but I am always curious to know about the "what happens next" aspect of this disease...

Recently found our mine is "atypical" and I haven't yet met with the surgeon or anyone after my surgery to hear more details or see what happens now .

Best of luck! 

Ali 

Bluejuice11
Posted by

HI Ali

I met with the surgeon about 6 weeks after op and all was ok  - no chemo etc which was a relief.  Since then  I have just had monitoring - meeting with surgeon or oncologist every 3 months ( down to 6 months now)  and just chest x rays every time I go back. So far so good and no spread. They do ask me about any other symptoms such as unusual diarrhoea, flushing or palpitations that are features of carcinoid syndrome. It's hard to know what is normal anymore as I honestly thought I was fine before, despite having a lung tumour with collapsed lung!

There was a lot of confusion when I first found out about what it was. Very scary scenarios such as a cancer that had spread and when an ovarian cyst showed up on PET it looked bad. Also the confusion over what a carcinoid tumour was-  my GP told my husband it was benign at first and I was so relieved only to then meet a consultant who told me it definitely wasn't. I wish I had been able to find this forum earlier as it would have helped a lot...

 I went back to work full time after 3 months and still  very active - can't believe it happened and feel very lucky so far. Best of luck to you too.

Mitzie10
Posted by

Morning 

Not sure if you have found netpatientfoundation.org which is a site specifically for patients and carers of those with NETs.

It is a great resource and you can access the Specialist Nurses by phone or email and they run local support groups.

I am Lung NET primary with Liver Mets and found them invaluable when I was first diagnosed and struggled to understand the complexity of NETs

Best wishes on your journey and please ensure you are seen and monitored by NET Specialists for a good few years

 Christine x

Bluejuice11
Posted by

Hi - thank you for this! It looks really useful as honestly I have been in the dark about it all since my diagnosis in 2016. The info I was given was mainly for lung cancer with just a mention of the rare one 'carcinoid'. I would be interested in your own story ? How are you now?

Mitzie10
Posted by

Morning

Such a shame you were not given better information. Please feel feel to read my profile, just click on my name, top right and I keep it up to date.

Firstly NETs are different to any other Cancers and patients can be misdiagnosed for years, depending on their primary. Also they affect us all differently, just because we both have NETs doesn’t mean we have the same treatments. So much depends on the pathology of your specific Tumour.

The most important thing is being under the care of a Specialist Team and ongoing monitoring. Where are you being treated?

Please feel free to ask any questions and if you want you can message me privately 

Best wishes

 Christine x

Mitzie10
Posted by

Morning  Alibearkins

I have posted a reply to bluejuice11 with some information below....or it could be above x

 Christine x

Mitzie10
Posted by

Hopefully you have seen my previous post x

 Christine x

Garden Daisy
Posted by

Hi Ali

Your story is quite similar to mine and I am writing this  6 days after my operation and  still in hospital. I am a fit and active 64 year old woman. I was diagnosed with asthma out of the blue at 50 but in the past few years have had no symptoms. I moved house in July and shortly after coughed up some blood a couple of times. I was sent for X-rays and CT scans and then eventually a bronchoscopy which showed a tumour blocking the entrance to the 2 lower lobes of my right lung. I saw a Thoracic surgeon and was shocked to learn that he was going to remove the tumour and the two lower lobes and would try to save the top part of the lung. Given that I felt fine and was still walking and swimming I could not believe there was anything so seriously wrong. The operation took place on Monday and it was technically quite complex, they removed the tumour, the two lower lobes, then reconnected the top lobe using a “sleeve”, this not apparently a common procedure. I am surprised at how well I feel, I am doing breathing exercises and walking around now. It’s early days but I feel optimistic and have been told I may not need any more treatment as they think it’s likely to be a typical Neuroendocrine tumour but I need to wait for confirmation. The only advice I would give is to walk to get as good a lung function as you can before the op, I also had hypnotherapy for pain beforehand and I have managed to keep calm and the pain has been not nearly as severe as I was expecting. I hope this helps! Gill