Spinal Cord Tumour Forum

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Benign Spinal Cord Tumour Support & Information

Your Stories

Christine's Story

Hasn't had surgery 

People said to me “Chris, just have the surgery and get it over and done with”. If only it were as simple as that!

Five years ago (in Oct 2013) I was told I had a sacral tumour at S1/S2, the pelvic area. The 5 ½ cm tumour has been biopsied as a Grade 1 (benign) Neurofibroma, but is sometimes described as a Schwannoma on my medical notes. Although surgery has been offered to me, I have opted to watch and wait, for reasons I will relate.

It all started back in April 2012 (prior to my 52nd birthday) after we had been away for a once only weekend at a spa hotel. I must have spent too long in the Jacuzzi and Sauna because, after, I suffered the most horrendous urine infection. I then developed pain down my right leg and I was in a ridiculous amount of pain. The Dr said the leg pain was sciatic pain and incidental to the urine infection. The pain went on for days and I couldn’t sleep.

Over the next year and a half I experienced another three bouts of similar pain, that lasted about a week each time, almost always accompanied by a urine infection. During these episodes I was unable to lie down in my bed or settle to rest for long; pain killers just seemed to make me feel bunged up and sick. Luckily for me, these episodes came on quickly and only lasted days. Still, when I had them, I felt completely distraught as I was unable to function normally and was exhausted with the pain and lack of sleep.

I had some treatment by an osteopath to try and ease my sciatic pain. She was mystified as I had a good range of movement in my hips and was quite fit. After a course of treatment, which helped but didn’t cure things completely, she wrote to my GP suggesting an MRI scan.

It was after my fourth bout of horrendous pain that I was finally offered a “precautionary” MRI. I shall never forget that first MRI in a local, mobile scanner, most notably because I went in unaided and suddenly two people arrived to help me get up! I caught a glimpse of something, that looked significant, on the screen as I walked out and asked what it was. The chap seemed nervous and gave a vague response, I said to my Mum, who was waiting for me, “something isn’t right” and a few days later, that was confirmed.

This all happened just before Christmas 2013. I am sure there are people reading this who share this part of my story, the waiting and the uncertainty of diagnosis. At the start there seemed some confusion as to whether my tumour was a nerve sheath tumour or a bone tumour, benign or cancerous. So I spent Christmas and New Year conjuring up all sorts of scenarios in my head and wondering if I would even see another festive season!

In January 2014 a CT guided biopsy was carried out and several weeks on I was told the biopsy showed a large, grade 1, Neurofibroma. The biopsy results were given to me over the phone by the consultant and I was then called for another CT scan before I saw the consultant face to face. I have never quite worked out the reason for this CT scan; I think the consultant thought I was bound to opt for surgery and the scan was preparation for it.

I came out of my face to face meeting with the consultant feeling rather bemused. He suggested I required surgery soon because the tumour was large and may turn cancerous. He explained resection would take two major operations and that nerves may have to be sacrificed in the process, which included the possible loss of urine, bowel and sexual function. My GP later said that maybe I should add mobility to the list as a precaution. By then, on a day to day basis, my symptoms were at the level of mild sciatica and I wasn’t sure I wanted to risk losing functions that I still had. I was actually quite fit. I told him I had just lifted and shifted a lorry load of logs for the winter. He voiced caution at keeping up strenuous activities like this. The consultant said he could arrange a second opinion for me with the person who had trained him. I decided this was the best plan.

The second opinion was rather different. I was told that the kind of tumour I had was at low risk of turning cancerous and slow growing. I was asked why I was reluctant to have surgery and I said it was because I was fit and healthy and there seemed to be risks in surgery that might leave me worse off than I was at present. By then I was 54 years old. He explained that, given my age and the existing size of the tumour, it was very unlikely that I would reach my dotage without the tumour impacting on my life. Therefore, waiting was an option, but that I seriously needed to consider surgery while I was young and fit enough to withstand the two major operations required. I opted to watch and wait, not just for the reasons I have given, but because our daughter was in the midst of GCSEs and college applications.

To remove my tumour I require posterior and later anterior surgery. The first surgery involves drilling a hole through my sacral bone (with the risk of sacral collapse, if the bone cracks) to facilitate excising the tumour from where it arises at S1/S2. The second surgery is to remove the bulk of the tumour which sits within the pelvis in the region of the cauda equina. I have had three caesarean sections, so this will involve working past the scar tissue of those operations to reach behind the womb and bladder. The risks of spinal surgery will be familiar to you. Additionally, in my case, they do not know, until they operate, whether nerves will have to be sacrificed to remove the bulk of the tumour. As far as I understand it, this is because the tumour could have adhered to the many surrounding nerves and removal may mean severing them.

I will fast track to the present situation, five years on (Nov 2018). Since diagnosis I have experienced no further bouts of excruciating pain. I have some tingling in my legs and various low grade pains. I am fit and well and am back to my keep fit classes, after a recent operation to fix two hernias. I have also gone back to winter log shifting, but maybe with a little less gusto!

I opted to have my care transferred to the second consultant, who I have not met face to face since. Instead, I have MRIs and am seen annually and more recently six monthly by one of his staff. Until recently, my tumour seemed to have remained stable and no change had been observed. However, last year I was told that there is a cyst inside and outside my tumour and that the internal cyst seems to have increased in size, although the overall size of the tumour remains the same. The discussion has therefore shifted towards surgery sooner rather than too much later. They are unable to say whether the cysts may have grown and burst before and thus caused me the pain I have experienced in the past. They say they would have to observe during a pain episode for this.

It is such a dilemma. Still, I am reassured that it seems unlikely that my situation will deteriorate suddenly, but obviously elected surgery is less risky than an emergency scenario. Therefore, I take each appointment with an increasingly open mind that surgery may be imminent. I feel grateful that I have had five years of relative stability, although the worry of it all is never far from my mind.

So it hasn’t been an easy five years. When you don’t opt for surgery people soon assume that there can’t actually be anything seriously wrong; especially when you look as fit as they are! I have found it is only my closest friends who have really tried to understand the predicament I am in. This forum has also been invaluable. Through the forum I have been receiving help and support for almost as long as I have known about my tumour; without it I wouldn’t have coped nearly as well. Most notably, at the start, I was put in touch with a lady, by e mail, who has been there to support me at times I have felt low or unsure what to do. Just having someone to listen, is often all you need; someone who has some notion or how you must feel and how difficult the situation and decisions are. I have attended several meetings in London, but until now, have not posted anything on the website. I can only guess that I am not alone in this and that far more is going on and support being given than is reflected on line. Therefore, I feel I owe a debt of gratitude to the courageous ladies who were inspired to set the forum up and for those who work tirelessly to keep it going, THANK YOU.