Firstly, let me say that I have no intention of advising you how to lose or gain weight!  Rather, I’d like to discuss what factors might be involved and why people with NETs might lose or gain weight either at diagnosis or after treatment.  Clearly, I can talk freely about my own experience and associated weight issues. If nothing else, it might help some in thinking about what is causing their own weight issues.

I once wrote a patient story for an organisation and the headline was “Did you mean to lose weight”.  Those were actually the words a nurse said to me after I nonchalantly told her I thought I’d lost some weight (….about half a stone).  I answered the question with “no” and this response triggered a sequence of events that led to all the stories in all the posts in this blog (i.e. my diagnosis).

I annoyingly can’t remember at which point I started to lose the weight, but I was initially reported to have Iron Deficiency Anemia due to a low hemoglobin result and my subsequent iron test (Serum Ferritin) was also low and out of normal range.  This, combined with the weight loss, the GP was spot on by referring me to a clinic.  The sequence of events during the referral led to a diagnosis of metastatic NETs (Small Intestine Primary). If I had been a betting man, I would have put money on my GP thinking “Colorectal Cancer”.  So, my adage “If your doctors don’t suspect something, they won’t detect anything“ applies.

Why did I lose weight?

The drop from 12st to 11st was clearly something to do with the anemia symptoms (the NETs). But after my diagnosis, I had major surgery about 10 weeks later.  When I left the hospital after my 19 days stay, I was a whole stone lighter (14 lbs or 6.3 kg).  I guess 3 feet of intestine, the cecum, an ascending colon, a bit of a transverse colon together with an army of lymph nodes and other abdominal ‘gubbins’ actually weighs a few pounds.

However, add the gradual introduction of foods to alleviate pressure on the ‘new plumbing’, and this is also going to have an effect on weight.  I remember my Oncologist after the surgery saying to use full fat milk – the context is lost in memory, but I guess he was trying to help me put weight back on.  I also vividly remember many of my clothes not fitting me after this surgery. In fact, since 2010, I’ve actually dropped 2 trouser sizes and one shirt/jumper size.  I did spend a lot of time in the toilet over the coming months, so I guess that also had an impact!  However, what I wasn’t aware of was the side effect of my surgery.  I started to put on some weight in time for my next big surgery – a liver resection.  The average adult liver weighs 1.5 kg so I lost another 1 kg in one day based on a 66% liver resection.  I didn’t really lose much weight after the liver resection, probably because my dietary regime had stabilised following the big operation in late 2010.

Eating is good for you – but only if being absorbed

What was also going on in the first couple of years after surgery was something that took me a while to figure out – malabsorption and vitamin/mineral deficiency. My new ‘plumbing’ wasn’t really as efficient as my old one, so the malabsorption. issues caused by a lack of terminal ileum was slowly starting to have an effect. The commencement of Lanreotide in Dec 2010 added to this complication. That knowledge led me to understand some of the more esoteric nutritional issues that can have a big effect on NET patients and actually lead to a host of side effects that might be confused with one of the several NET syndromes.  What it also confirmed to me was that I could still eat foods I enjoy without worrying too much about the effect on my remnant tumours or the threat of a recurrence of my carcinoid syndrome, something I was experiencing prior to and after diagnosis.

Armed with the ‘consequences of NETs’ knowledge, I did eventually adjust my diet and my weight has now ‘flat-lined’ at around 10 st 7 lbs (give or take 1 or 2 lbs fluctuation).  Amazingly, the same weight I was when I left hospital after major surgery, looking thin and gaunt and not very well at all!  The difference today is that I have adapted to my new weight and look fit and healthy.

There are other reasons for weight loss

I actually lost another half a stone (7 lbs or 3.5 kg) in 2014 whilst training for an 84 mile charity walk in 2014 – many commented that I looked thin and gaunt despite feeling extremely fit from all the training. Perspectives!  It took several months to put the weight back on but at least I knew what had caused the loss and then subsequent gain.

What I’ve discovered over the years is that 2 or 3 pounds is nothing to worry about, I found you could put on or lose that amount in a day, depending on time of weighing and food intake. I’m looking for downwards or upwards trends of 7lbs or more (3kg). I try to weigh myself at the same time of day, wearing the same clothes and using the same scales.

I don’t have any appetite issues although I try to avoid big meals due to a shorter gut, so I snack more.  With the exception of the 4 months of intense training for the 84-mile hike and a bad chest infection in 2018, I cannot seem to lose or gain weight.  As my current weight is bang in the middle of the BMI green zone (healthy), I’m content.

Summary of my Weight Challenges

I guess that weight loss or weight gain can be a worry. I also suspect that people might be happy to lose or gain weight if they were under/overweight before diagnosis (every cloud etc).  However, if you are suddenly losing or gaining weight, I encourage you to seek advice soonest or ask to see a dietician (preferably one who understands NETs).

Edit:  I changed my blood thinner in May 2017 and lost 2kg (4 pounds) after 6 months.

Edit: I started Creon at the beginning of 2018 (read about this here) and almost immediately put on 2kg (4 pounds) to offset the 2kg loss from 6 months prior.  However, no real change after 3 months of Creon (March 2018).

Edit: In March 2018, I was formally diagnosed with Hypothyroidism, one of the symptoms can be weight gain.  Clearly that has not applied to me.

Edit: Due to a bad chest infection in June 2018 and the effects of that illness, I dropped three quarters of a stone (~10lbs).  My lightest weight for over 30 years (I have my medical documents from the military covering 1972-2001).   To me that is a significant loss of weight in such a short space of time. This was a worry because I need the weight!

Edit: 4 Sep 2018. After the 10lbs (~4.5kg) loss following the chest infection, people who see me regularly have noticed the visible difference. My trousers feel loose. I’m still struggling to get back beyond 10st after 2 months. Monitoring this really closely.

Edit: 28 Nov 2018. I’m back at 10st after increasing my dosage of Creon.

Edit: 10 Jan 2019.  I’m back at 10st 3lbs, my approximate weight before the chest infection.  It’s taken 7 months and the recent acceleration coincides with Creon dose increase.

Edit 7th Feb 2019.  Changed from Creon to Nutrizym on a trial basis.

Edit: 17 Mar 2019.  It appears my trouser waist size is back to 32″.  Is the use of Pancreatic Enzymes making me eat more, or getting more nutrients through, or making me eat food which makes me put on weight? Perhaps I’ve got the dosing better?  Still monitoring.

Edit: 29 Nov 2019.  Back to 10st 7lbs – which was my ‘flatline’ weight for several years before and the “you look really ill” weight after my surgery in November 2010, i.e. I’m the same weight I was 9 years ago but looking much healthier!

Edit: 13 Jan 2020.  I’m now running at 10st 9lbs but the holidays might have something to do with that.  However, I suspect I need more exercise and the pancreatic enzymes are having some kind of weight gain effect.

Edit:  11 Feb 2021.  I’m now running at 10st 11lbs, only a kilo over 12 months but the trend over 2 years is still up.

For those wishing to see the output from an online discussion with Tara Whyand on the subject of ‘Weight’ issues for NET patients – please see this link inside my closed Facebook group.