Below she shares her story to give hope to osteosarcoma patients.
I found a lump in my lower left leg in 2004 while living in my native Germany. I had the lump removed and it was found to be benign.
A year later in the summer of 2005, the lump returned in exactly the same location as before. I had no pain or other symptoms, just the reappearing lump. By this time, I was living in Scotland and I went to see my GP, who did not take my concerns seriously.
She told me it was scar tissue from the previous surgery and I was put on a non-urgent waiting list for a dermatology appointment.
I had to wait 26 weeks for the dermatology appointment and during that time I fell pregnant. The pregnancy was planned, as I believed the GP that there was nothing to worry about. I nearly did not go to the dermatology appointment as it was taking so long, and I had been assured it was nothing serious.
When I finally got to see the dermatologist, I believe she knew straight away that something was seriously wrong.
Within two weeks of my initial dermatology appointment I had a biopsy and received my diagnosis. I was diagnosed at age 22 years old, 15 weeks pregnant, with osteosarcoma in my left tibia.
I was adamant that I did not want to start chemotherapy until after my baby had been born, and I wanted to wait until at least 34 weeks for her to be delivered. My surgeon and oncologist agreed.
I had my surgery during my second trimester and was anaesthetised with a spinal block. Luckily the anaesthetist specialised in both orthopaedics and obstetrics. I had the tumour and part of my tibia removed, followed by a skin graft. After the surgery, my daughter was born by caesarean at 34 weeks gestation.
I then had two weeks to recover from my surgery before I started chemotherapy. I was able to breastfeed my daughter during those two weeks, but had to stop before the chemotherapy started.
The first few chemotherapy cycles were not too bad as my daughter tended to sleep when I was sleeping, but I was not able to hold her at some points, which was difficult.
As the chemotherapy went on, the side effects got worse, to the point where my oncologist decided to give me a reduced dose for my last cycle. I was given cisplatin and doxorubicin, and it was the worst thing I have ever experienced. I'm not sure I would go through it again if I had a recurrence. Luckily, the treatment worked.
I have been given the all clear and I am not on the caseload of my oncologist anymore. This followed the usual years of regular check-ups, and some irregular scares. I was discharged around eight years ago in 2016.
Luckily, I have been able to fight my way back to being active. I play volleyball, go to the gym, and have managed a half marathon. My daughter is turning 18 this year and is thriving. I am currently in my last year of studying occupational therapy and cancer care is one of my interest areas.
I find it frustrating that, despite my medical history, I do not feel taken seriously by my GP whenever I have concerns. I usually get in touch with my oncologist who supports referrals, even though I am not on his caseload anymore. With his support I have needed to get a mole removed which did not show any abnormal cells. My GP practice, preceding this, told me that the referral was not necessary. My oncologist told me that if the mole had not been removed it could have become a bigger issue.
Over the years I have recovered enough to lead a normal life. After the chemotherapy, for several years, I had to cut down on activities due to my leg still healing and due to ongoing fatigue and tiredness. I still have nerve damage to my hands and feet from the chemotherapy. I lost my job because of my cancer and I had to adjust my education and career goals.
I have chosen not to have more children, as I am too scared that the cancer will come back and the children will be caught in the middle of treatment, or I would die.
My daughter has been a huge source of strength to me. She gave me a reason to persevere with the treatment and tolerate all of the horrendous side effects.
I know that everyone is so different with their approach to an illness, but my advice to other bone cancer patients would be to not hide how bad you are feeling and to allow yourself to wallow and be sad from time to time. Allow yourself time to grieve what you have lost. I used to hide this as I did not experience a lot of emotional support or understanding.
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