A Smooth Muscle Tumour of Uncertain Malignant Potential – 9 Months Later

There’s a title you weren’t expecting to see there. Today I want to talk to you about health, specifically my health, specifically my health after a diagnosis of Smooth Muscle Tumour of Uncertain Malignant Potential.

If you’ve followed my blog for a while now, you’ll know that the last eighteen months for me has looked like lots of tests, lots of surgeries and lots of general health issues. Whilst I was in the throws of treatment, the last thing I wanted to do was talk about it – online certainly, but even with my family and friends. At the time talking about it was too real, too raw, I just wanted to get through it, I didn’t want to dwell on the details. 

Now, 9 months post surgery, I’m by no means out of the woods, and I’m still beholden to my GP and consultant, but I feel a bit more ready to talk about things.

Back in August of 2016, I visited my GP complaining of dizzy spells, light-headedness, achey limbs, an aversion to food and being exhausted all the damn time. A course of blood tests came back to show anaemia, and not just a little bit, I had almost no iron in my blood, very little B12 and next to no Folic Acid. I was exhausted all the time, because my blood wasn’t strong enough to keep me going.

I was pretty quickly referred to a specialist gastroenterologist, I should point out here that I’m very lucky to have private healthcare, private healthcare that meant within a day of getting those results I was sat down discussing my options.

The long and short of it was that anaemia to that extent usually suggests one of two things, abnormally heavy periods or some kind of digestive issue – terms like Coeliac and Chron’s disease were batted around. Because my bloodwork had also shown a high number of inflammation markers, I was told the only way we were going to get to the bottom of things was for me to have an endoscopy and colonoscopy.

Now I know in the scheme of things those procedures aren’t the end of the world, but to me who’s TERRIFIED of anything medical, and had never experienced anything scarier than a blood test, I was a mess really. I refused to talk about the procedure, except to pretty much demand I be completely knocked out for it, and went in for it a bag of nerves.

Now at the time this procedure flagged up a lump in my large intestine. They called it a polyp for a long time, just a mass of cells that shouldn’t be there. I was scheduled to come back in for another procedure to remove it, but told it was unlikely to be the cause of my problems. In the meantime I had a capsule endoscopy, a large tablet with a camera inside that you swallow, and it travels your entire digesting track taking two photos a second. It showed nothing out of the ordinary and we were still stumped.

Another procedure to remove the ‘polyp’ and I woke up to be told they hadn’t done it. The team had been surprised by the size of the lump and hadn’t felt confident in removing it. I was scheduled for another procedure, this time with a surgical team on standby, to remove that section of my intestine should the procedure fail. Basically, I wasn’t waking up with that lump in me, whatever it took. The surgery was successful and ‘Nigel’ as the lump had been dubbed, was out, all five and a half centimetres of him.

The whole time I was going through this I was repeatedly told by all the medical professionals that this lump wasn’t anything scary. I was told it was just a common old polyp, unusually large and unusual in someone so young, but nothing to be scared of.

Fast forward to a month post surgery, the lump was out and I still hadn’t been told what it was. Consultant appointments were rescheduled, pushed back, and with hindsight I probably should have known then that something was wrong, but hey it was gone, I had nothing to worry about, seemingly.

I concentrated on getting my body to recover. The toll of three general anaesthetics in under three months was larger than I’d expected, I was groggy constantly, unable to concentrate on anything at all for more than a few moments. I was extra sensitive to light and sound, my head pounded constantly, and my digestive system was a mess. The three procedures had all involved a course of strong laxatives, my organs being pumped full of a foreign gas, and I generally had this feeling that everything had been prodded and poked and moved around. I couldn’t keep food in, my stomach hurt constantly and I had this bizarre feeling of contractions, every time a little more of the gas would try and pass through my system. It would move past my scar tissue, stretch it and cause pain that took my breath away.

Eventually I was back in my consultant’s office for answers. Old Nigel had been sent to labs all over the country, and they came back with the diagnosis ‘Smooth Muscle Tumour of Uncertain Malignant Potential’. In short, it was a tumour, a tumour with characteristics of both cancerous and non cancerous tumours. A tumour that’s so rare, they can’t predict it’s behaviour. They classify tumours as cancerous if they have the potential to come back. They have no idea whether this will come back.

The tumour was large, blocking most of my large intestine, explaining why I found difficulty eating, why my stomach hurt a lot. It was also bleeding quite a lot for a long period of time, explaining why my blood levels were so low. It was doing a lot more damage than they’d anticipated and despite their earlier observations, was the cause of all my problems.

So where does that leave me? Well, in a grey zone essentially. My consultant was very careful to use pretty vague language ‘you don’t need further treatment…right now’ ‘we don’t need to operate again…yet’. Basically, nothing reassuring at all. He explained to me I’m kind of in the same position as someone who has had a diagnosed cancer, because I’m basically waiting around to see if it will come back. I’m resigned to having annual MRI scans and Colonoscopies to check on the site of the tumour, and regular blood tests to keep an eye out for anything out of the ordinary. Each time I return to the doctors, I’m waiting to find out if I have cancer, and that is nothing short of terrifying.

And now, nine months down the line? My six month check up (colonoscopy and blood panel) was clear, I have another in the books for March. If that’s clear they’ll drop my surveillance to yearly, a colonoscopy and MRI scan once a year for ten years. This type of tumour is so rare, and previously only seen in uterine cases, so they really have no idea what to expect from it.

And so I sit and wait. And in the meantime, I still feel crappy. My iron levels are taking their time to regenerate, and they’ve been so low for so long that my red blood cells are misshapen now, not carrying enough oxygen round my body. This means I’m tired all the time, and that the slightest amount of physical activity is almost impossible. My stomach is still incredibly sensitive, I struggle to eat a lot of foods, and most of all, I’m worried all the time. Worried that every little twinge is a new tumour. Worried that every bit of tiredness is more blood loss. Worried that every trip to the doctors will end in a cancer diagnosis.

It’s hard to make longterm plans when I don’t know what my life will look like post check up. Even if best case scenario and I’m clear of anything nasty, my body doesn’t cope well with the procedures, they leave me sore and even more tired and take me weeks to recover from. It’s hard to agree on plans when I worry that if I need more treatment come March, having to cancel the plans would be even harder on my mental health than not having them.

I feel endlessly frustrated. Frustrated that my body can’t cope with the stuff a normal 23 year old should. Frustrated that my diary is full of doctors appointments and checkups and little else exciting. Frustrated that one day I feel great and the next awful. Frustrated that I can’t work a full time job, or exercise, or eat whatever food I fancy. Frustrated that I didn’t find the lump sooner. Frustrated that I spent years feeling crappy and not being listened to by my GP. I feel let down by the NHS, who I’ve been going to complaining of stomach aches since the age of nine, and didn’t get any results for.

And I feel scared. Scared for what the future holds. Scared of more hospital appointments, more needles, more uncertainty. Scared that this could be happening to others who aren’t in as privileged a situation as me, and might also be being overlooked by their GP. I don’t blame my GP, they’re overworked, underpayed, in a national health system that’s stretched past it’s limits. But what if I hadn’t had access to that private healthcare? What if I hadn’t been able to push for a private referral, and had instead sat in the NHS system for months, even years more.

I was one of the lucky ones. I’ve been treated, I should only continue to feel better. But I’m still living with the long term effects, still struggling everyday, still missing out. Even with my friends I think I’ve only touched on all this stuff and how I feel now. I’ve lost touch with a lot of people because it’s hard to explain how I feel to people who can only imagine. I’m sick of being the sick one, cancelling plans, feeling down, only having bad news to share. I relish days like when these photos were taken, hanging out with friends in London, drinking coffee, pottering round the shops, feeling normal – and then I pay for them with a week out of action after.

I’m not sharing any of this for the sympathy factor, but rather in the hopes it will spark some understanding. With my friends, who have no idea the extent of the mental impact my treatment has had. To my readers, who may understand why I’m not always the most consistent when it comes to content. To any of you who may have friends or family living with long term illness. I hope that I can feel a little like the world isn’t solely on my shoulders, and that there’s light at the end of the tunnel.

If you made it this far, I salute you. Thank you for your endless support, I can’t begin to explain what it means.

And thank you to Kelly, who took these photos that made me feel great for the first time in ages.