Chanez’s synovial sarcoma story

Life as I know it –

The beginning of 2012 I thought:

‘Why is my leg so painful? Maybe I pulled a muscle while playing hockey, I should probably go to the physio.’

 

The beginning of 2020 (pre COVID), I thought:

‘I don’t want to die! I don’t want to feel pain! I really don’t want to die!’

 

These two thoughts seem worlds and years apart but are both related to the same thing, the awful thing I did not see coming – cancer.

 

I was laying in bed one evening in August 2012 when I felt a lump in my left thigh.  It was not painful. Was it there yesterday? I remember thinking it’s weird that I only noticed it now.  I told my parents and I left it of a few days to see if it will disappear.  

 

Beginning of September, after a few days, I went to my GP.  He sent me to the X-ray department to make sure the bone is fine- all clear- but he said he does not know what the mass could be and he sent me for an MRI.  It was late in the afternoon and I was still calm.  

 

On my birthday the next day, the doctor phoned me and said he got an appointment for me to go and see an orthopaedic surgeon regarding the mass in my leg, in two days-time, I was starting to get worried and I was emotional the whole day! So, to keep my story short we dropped the MRI disk at a family friend who is also an orthopaedic surgeon on our way to my birthday dinner that evening.  

 

The next day, she called and said we must meet her at the hospital, Professor Le Roux will see me in between his surgeries.  So, off we went. He looked at the scan and was not very worried – said it is probably a soft tissue mass that is benign. The next morning, he was going to remove it.  I was positive, emotional but positive.

 

I did not expect to wake-up in the ICU and was not at all prepared for the news that I received that day –  ‘It was a malignant tumour called Synovial Sarcoma’.

 

I had just turned 22 and did not completely comprehend the situation. 

 

To make sure it hadn’t spread to areas close by, I went for a sonar where they could not pick up my ovaries, so to the gynaecologist I went.  About 10 days after removing my Synovial Sarcoma, I had the surgery to remove a ‘cyst’, but it turns out it was a ‘Teratoma’.  Luckily, nothing related to the Synovial Sarcoma.

 

So, now I was sent to the oncologist to find out that to do next… 6 weeks of radiation to my upper thigh. Not so bad and it went by very quickly.  So, now I have to go for x-rays and CT scans of my chest and leg every three months for two years.  All of the scans through these two years showed no recurrence.  Now my check-ups were moved to every six months.  So, in March I went for my first six month check-up, first the chest scan, which came back clean, and now a sonar of my upper thigh.  They picked up a mass that was not on any of the previous sonar scans.  I was sent for a MRI and there two tumours presented.

 

Back to step one… I had surgery to remove the tumours 8 April 2015 and it was on my vein and the other tumour into the muscle, so they removed both tumours and a piece of my muscle.  The recovery time was longer due to the radiation I had in that area.  So, again to the oncologist, he was very negative and basically said that there is nothing we can do now and we will just have to wait for a recurrence… that was not good enough! 

 

I went to another oncologist for a second opinion, so there were three options, amputate the leg, in plant radiation or nano technology when the tumour recurs in my leg.  If it is in my lungs, I can go for chemo, but chemo has almost no effect on Synovial Sarcoma tumours, meaning it’s bad news. 

I did not choose any of these options and my orthopaedic surgeon kept sending me for scans every few months.  In August 2016, they picked up another tumour in my left leg (same place as all the previous tumors) and the doctor removed the tumour, and also did an arterial bypass as the tumour was on the artery.  I also went for hyperbaric therapy (10 sessions) after the operations which helped the healing process.  

 

After that everything was great and I carried on a normal life still doing scans of my leg and lungs – nothing!!!

 

I had a baby December 2018 and during my pregnancy I developed bad lymphedema in my left leg – so I just kept on wearing my compression stocking.  I went for a sonar of my leg on 27th November 2019 and they did not pick up anything.

 

Went for an MRI in February 2020 and they picked up a mass in my leg.  On the chest x-ray there was nothing but the doctor sent me for a CT scan of my lungs.  They picked up three small nodules on my liver and a bigger nodule on my left lung (between the lung and plural membrane).

 

So, the plan was to do biopsy of my liver, lung and to then remove the tumour in my leg. The biopsy of my liver was clear, but the nodule in my lung presented the same as my leg – Synovial Sarcoma.

 

The doctor removed the entire nodule in my left lung, but not with wide margins.  The doctors also removed the tumour in the leg and was able to remove it without doing another bypass.  

                             

I tried hydrotherapy again, but I was very anxious, so I decided to leave it for a while!  I also had an appointment with my oncologist to work out a plan! They talked about radiation for my lungs and a smaller dose of radiation on my leg again (as I had already had radiation on my leg in 2012). I had a PET scan in March 2020 that showed nothing except surgery scarring and something in my uterus which can be from the pregnancy.  

 

So, my oncologist suggested to wait and if any other tumours occur…. surgery, and if everything cannot be surgically removed, I can start drinking Votrient (Pazopanib).  That did not seem like an option to wait until something else happened, so I went for a second opinion.  This oncologist put me on Votrient to try and prevent it from spreading.

 

11th June 2020, I started drinking the Votrient.  It went well for two weeks but then I started to feel ‘just not me’.  The next day, I started to get a fever and my leg was a painful –  ahhh what now!!

 

I went to see my orthopaedic surgeon and my CRP count was high but they could see nothing on the sonar of my leg.  I came home and had to do the tests again two days later, as he thought an abscess was busy forming and it takes a while.  When I did the CRP count it was extremely high and on the sonar the abscess was visible.

 

Went for COVID test – negative.  And on the 9th of July 2020, I went for an operation to remove it. Stayed in hospital for a week until my blood work was normal and to get IV antibiotics.  I had to stop drinking Votrient and had to wait till the wound closed before I could start it again – another problem.  The wound took about a month to close.

 

Once again started with the Votrient end of August 2020. On 9th September 2020, I didn’t feel ‘myself’ again.  Felt like I had a sinus infection and I was extremely tired – what now??

 

10th September 2020, I contacted the doctor and they sent me for a COVID test and other blood work as well.  I tested positive and my bloods didn’t look great, so they put me on antibiotics to prevent a secondary infection and had to stop my Votrient again.  

 

Well, I started with the Votrient again on 1st October 2020 and went for a PET scan 6th October 2020 and had to wait more than a week to see the oncologist for my results.  The anxiety got really bad but luckily everything came back clear and my blood work also looked great.  ​

 

 

7th October 2021, I went for a PET scan – an emotional day on its own.  From there the emotions just kept climbing…. just kept climbing – and the anxiety also got worse but everything was clear! March 2021, I had a chest and leg CT, my orthopedic surgeon saw something in the leg and asked for an MRI. So, on the 4th March 2021, off I went to the hospital once again! I know the forms and questions….. I know the changing rooms and gowns……I know the faces that work there….. I know the machine and all the marks on it……I know the sounds…… nothing is new to me. Luckily, I know the radiologist very well (as I have been so many times over the years) and I asked him to show me the images, I could not wait to find out of there was yet another recurrence – Iam happy to say that everything looked good!

 

In July 2021, I had sonars of my pelvis, abdomen and upper thigh as well as a chest x-ray. The x-ray was clear and the sonar showed a mass in my ovary and a fatty liver, other than that it all looks good! My next scan will be a PET scan in October 2021. I am positive and feeling great, I love my family and my life!

 

The one thing that I am struggling with is that I have to pace myself and that I have to realise I cannot go 100% all the time. My body gets tired and emotionally, I sometimes feel fragile but that is not going to get me down. I drink my Votrient everyday and so far so good.

 

This is part of my life but it does not define me as a person! I will not be seen as a victim! I am Chanez Erasmus. I am happily married and have the most amazing daughter! My family is the best and I love where I am in my life! I am happy!

 

** This is a story of pure grit, determination and courage. Thank you so much Chanez for sharing such a personal narrative of your journey to date. You have endured so much since the young age of 22, yet here you are still standing and with a beautiful family. I am sure anyone reading this, who is in a similar situation, will be encouraged by your story. I have also learnt so much about Synovial Sarcoma; too often the mainstream media only focuses on certain ‘big’ cancers, however, it is so important to raise awareness for ALL cancers.  There are some charities including Sarcoma UK , Sarcoma Foundation of America (SFA) and The Cancer Association of South Africa (CANSA) which provide further information and support.

Thank you again Chanez and I only wish the very best for you and your family.

With much love, Jojo xoxo