I was having shoulder and arm pains on the left side since December 2014. Originally my doctors thought the problem was in my shoulder. I had a tear in one of my tendons, but my collar bone was also not okay. In April 2016, I had an operation on my left shoulder, but the pain continued, so in July 2017, I had a bone scan and by coincidence the doctors saw a tumor in my left humerus, very close to my shoulder.
Following the scan, I was diagnosed with chondrosarcoma grade 1 or 2 (inconclusive), and I was told that an operation was the only treatment. The doctors told me that radiotherapy or chemotherapy would not work to destroy this tumor.
Several acquaintances and some members of the further side of my in-laws would not believe that I have/had cancer... because cancer without radiotherapy or chemotherapy?? That could not be cancer...
After surgery in August 2017, I had an MRI every 6 months. The pain continued and got worse and worse. I went to the pain clinic, they gave me several antidepressants to try that could work on the nerve pain, but in the end, they could not help me. I had several examinations done on my arm/shoulder (SSEP test, EMG tests…).
They said it was likely that I had scar tissue pains and nerve pains, due to the surgery.
My surgery involved scraping the bone out and then filling it up with bone cement. My original tumour was about 11cm x 2.5cm.
On my 6-monthly MRI of February 2020, they again saw little lightning points, that pointed to recurrences of the tumour.
I again was operated on May 25th 2020, I had to wait a few months due to the Covid-19 pandemic.
The second surgery was more severe than the first one. Instead of a surgery of 2 - 2.5 hours, it became one of almost 6 hours. Doctors faced some difficulties during surgery.
I’m currently recovering but still having bad pains in my arm and shoulder. This time, they removed all the bone cement and when they wanted to fill up the bone again, they could not re-use the bone cement because they accidently made a little hole in my bone. If they had filled it with bone cement, this cement would run through that little hole. So, my doctors filled up my bone with some scrapings of donor bone.
After one recurrence, I am very very afraid, that I will have other recurrences.
Since July 2017, I still am at home, can not work because of this painful arm and shoulder and I have a few other health issues too. Alongside my chondrosarcoma tumour operations which were in 2017 and 2020, I have had back, shoulder and neck surgery in and amongst. These have lead to me having fibromyalgia, a condition that causes widespread pain and extreme tiredness, autonomic dysfunction, a condition in which the nervous system does not work properly and arthritis in my back, neck, shoulders, hips and pelvis and due to the ongoing problems in my left arm and shoulder, I have a tennis elbow in my right arm.
I try to live with the daily pains and discomfort, but I still cannot go back to work and that is hard. Because of the ‘pain frustration’, I often can take ‘it’ out on my closest family members, my husband and 2 sons (who are now almost 16 and 19).
I live in Belgium and I think that chondrosarcoma is still very unknown because of the fact that is very rare... People who say to me, that I can't have had cancer because of the fact that I did not get chemotherapy or radiation...that makes me very sad and angry.
My advice to others is to not do this alone, seek help from your family and closest friends. Talk, cry with them, share your thoughts.
Awareness is important, because if you have an early diagnosis, there is so much more that can be done and mostly, the treatment is more easy but realise that this IS cancer and that you are allowed to grieve, to cry, to be down, to have a hard time, to be sad, to be afraid….