A few weeks before I was diagnosed in July 2010, Chris and I flew off to Barbados on holiday. Both of us were looking forward to a nice break after a hectic start to 2010. When we got back, we both agreed it was the most relaxing holiday we had ever been on.
However, what I didnt know all the time I was lying on a sunbed soaking up the Caribbean sun drinking ‘pina coladas’, was the fact that Neuroendocrine Tumours had been growing in my small intestine, had spread into my mesenteric lymph nodes, into my liver, into my left armpit and into my left clavicle area. I also had no clue that the excess serotonin released by these tumours was causing a dense fibrotic reaction (desmoplasia) in the mesentery and in the retroperitoneal cavity having encircled the major blood vessels of the aorta and inferior vena cava almost blocking the latter. That problem alone might have been the end of me.
WTF! I had no idea or did I?
Just prior to going on holiday, I knew I had an issue with a low haemoglobin blood test and was waiting to be told what would happen next. However, I wasn’t even the slightest bit worried, this was ‘something and nothing‘ (this too shall pass) despite the fact that I’d been ignoring a minor flushing sensation for 6 months and sporadic and infrequent diarrhea for longer. When we returned from holiday, there was a letter of referral to a local anaemia clinic 5 weeks ahead. To cut a long story short, I bypassed that and went straight to a private appointment and was diagnosed very shortly after with metastatic Neuroendocrine Cancer.
Neuroendocrine Cancer can be quiet and it loves when people ignore its devious and vague signs. Fortunately I was able to get to NET Specialists and I’m still here to tell the tale.
The saying “what you don’t know won’t kill you” is not always accurate in the context of cancer. Any cancer can kill, cancer was trying to kill me and I had no idea.
Education and awareness reduces the risk. Listen to me talk about these issues here.
If you know anyone who thinks they may have a Neuroendocrine Cancer but are having trouble gettting a diagnosis, send them this artilce – click here.
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Ronny, my husband had a major surgery for his NET cancer and they removed part of his pancreas.. He had this surgery done almost four months ago (he also had tumors removed from his liver and his pancreas. This is his eighth surgery in 15 years for Carcinoid/NET). He had the surgery done four months ago and is having terrible problems with his digestion and discomfort when he eats any food. All of the docs keep saying “it will take time…maybe up to 1 year!”. He takes 18 enzyme pills a day and he is still a mess. We are trying to find any other people who might have experienced this type of surgery or pancreatic problems. Do you know anyone we can contact or any sites to check? He has been to GI docs, nutritionists, his regular oncologist, etc. etc. Any help would be appreciated Thanks so much,
Mary.
Mary, currently on holiday, will contact you shortly
Mary, this sounds so much like many other issues I read. Personally speaking I didn’t really see any major improvements for over a year but I’m not a pNET and I know there are big differences with midgut NETs and pNETs in terms of digestion etc (although the principles are the same). Whilst I’m not a doctor or indeed any medical credentials …… I would say you need a radical look at diet to work out which is least problematic. Everyone is different in this area though – what works for one, might not work for another. Do you have access to a nutritional expert, preferably one with experience of living with NETs? Not sure where you are based?
Thank you Ronny Allen for all the information and words of encouragement you post here. 2 years ago on July 107 my 33 Year old son was diagnosed with metastatic NET – primary unknown, and mets in liver. This was found during an ultrasound for gall bladder. We were devastated, and presumed the worst. But since then, we have learned you can live with this if you are treated by doctors who understand it. He is being treated at Dana Farber in Boston by one of the two specialists there. They did pinpoint the suspected origin to his left lung, although there is no activity there at this time. The tumors are grade 1 indolent.. 15 months on CAPTEM and 2 embolizations later, things are looking much better. His oncologist is optimistic for the long term. He works full time and has been sick maybe 5 days in the last 2 years. We are so grateful. But it’s still scary, and many days I read your blogs for more reassurance. I hope you continue to be well – know that you are helping so many! Thank you, thank you!
thank you so much word the kind comments. I’m glad to hear your son is doing OK. You’re right of course, important to be treated by those who understand the disease. I hope he continues to be well. I’m OK but I keep a close eye on things and I also read my blogs to make sure they’re up to date but they do sometimes gives me support when I see lovely comments like yours!
thanks again Diane
My husband was ill in February 2015 and diagnosed with cancer of pancreas. Whilst in surgery for a Whipples at Southampton a biopsy on the liver diagnosed liver mets. In June he was given the diagnosis of pancreatic net and spread to liver. He was a fighter but we lost him on May 1st. Have asked for funeral donations to go to hospice, Macmillan & NET Foundation though didn’t request help from them, went once to a local group in Horsham, West Susex (which helped us as no-one around us knew about NETS).
I have been reading your articles and think you are such a help to people with this ‘rare’ disease.
He was only 58 and I miss him & his positivity.
Thank you. Julie Nicholls
So sorry to hear about your husband Julie. I’ll keep going to the best of my abilities to spread awareness.
It really amazes me, Ronny, that you had that much of a tumor load by the time you were diagnosed, and here you are, nine years later, still ‘kicking sand’ at this disease. It has got to give a lot of people real inspiration. Thanks for working so hard to help the cause.
Well said Ronny! I think our bodies try to tell us but we just don’t want to listen (sometimes)….
Reblogged this on Tony Reynolds Blog and commented:
Be aware of possible holiday blues that can happen anytime in the year
I so love to read your recollection of the primary details, so reminds me of my journey with nets. Sounds a little weird perhaps to say that, but I’m saying it from the point of view that by having another person on the same bus with me makes me FEEL considerably less alone.
Your ability to so accurately yet succinctly write about our challenge is really appreciated ! As always, thankyou !!!!!!!!!!!!!!!!!!!!!!!!!!!!!
More to come!
Ronny,
Been following your blog periodically for awhile. Not sure what to do next, but have been living with NETS, primary Ileum, gone to part of liver, left breast one lymph node. Doctors here at Siteman Cancer Center in St Louis won’t operate unless its very invasive. Have been on Octreotide for almost 2 years now. Little change in NETS tumors. Have been taking some infusions of Vitamin C twice a week. Latest CAT scan showed a small increase in one of my liver tumors.
What to do next? Find a clinical trial for PRRT or have an ablation of liver done to get rid of most of the tumors there? Not getting much guidance. I feel pretty good, have little flushing and no diahrrea. Any suggestions?
Head in the sand
Emma
2nd opinion, Liu is to the west, Woltering is to the south?
Worth a read https://www.nanets.net/2013-nanets-guidelines