Help Jo kick cancer's ass

My 32 year-old sister, Jo, currently has Stage 4 Synovial Sarcoma, a rare and very aggressive cancer. The cancer started on her right thigh near her knee and has metastasised in her lungs and chest. She began chemotherapy treatment on 31st August 2021 with 6 cycles over 5 months. There is a possibility to continue chemotherapy and begin radiotherapy in 2022. However, the outcome is uncertain, and it is anticipated that she will need further treatment which will not be available on the NHS.

Synovial Sarcoma is a cancer that can come from different types of soft tissue, such as muscle or ligaments. It is often found in the arm, leg or foot, and near joints such as the wrist or ankle. Only about 1 to 3 individuals in a million people are diagnosed with this disease each year. It can occur at any age, but it is more common among teenagers and young adults. The exact cause isn’t clear. In most cases there is a genetic link change in which parts of chromosomes switch places, but what prompts this change is unknown. In my sister’s case the doctor presumes it was due to injury.

Follow her journey on instagram: https://www.instagram.com/jogiou__/ 

Here's her full story:

2016- 2017: A small lump appeared just above her right knee. She was told by her GP to take Ibuprofen to reduce inflammation. Lump persisted to grow, and at this point she was told it could be a cyst. She was referred for an MRI and ultrasound which doctors said that the results showed it was a ganglion cyst. The outcome of these scans was to have the cyst drained.

Early - Mid 2018 : The lump at this stage was the size of a tennis ball. Although she felt discomfort she was still mobile. She finally received a referral to have it drained, but when she arrived for her appointment, they said that she wasn't on their records to have the procedure. They did another ultrasound after which they informed her that the lump had been left too long untreated and had now solidified, so they wouldn't be able to drain it anyway. She was told that she would hear back from a surgeon and have further investigation.

She had an MRI again and had a consultation with a surgeon who had confirmed the lump had calcified and indeed had solidified. She didn't have a biopsy or X-ray as they had said the lump was benign and nothing to worry about. She was put on a waiting list to have the lump removed and was told the wait could be up to a year.

Late 2018: Lump had doubled in size and was causing pain and decreased mobility. We heard no news about her operation. This was chased up with her GP but was told that cancer patients had been prioritised and that there would be a longer wait for her.

Early 2019: She received a call saying that she had missed an appointment at the hospital for another consultation, but she hadn't received any communication that there was an appointment booked. She asked to reschedule, but she was told that would have to go back onto a waiting list. She decided to change her GP in the hope that she would be referred to a different hospital, and there was no urgency from the current GP or surgeon.

Late 2019: Lump has increased in size further, with worse pain and struggling to continue to work as she was in an active role as a Retail Manager. By now she was with a new GP and awaiting new referrals with a different hospital and surgeon, but unfortunately had not heard anything back.

Mid 2020: The growth on her thigh had become obviously larger and started to protrude, with huge restriction to walking and any daily activities that she should find no issue in doing. The pain was also affecting her sleep cycle and painkillers such as codeine, which she was recommended to take, had no impact. Her referral was postponed due to the Covid-19 outbreak and the several lockdowns we had in the UK.

Late 2020: As Covid-19 cases were not easing, there was no contact from the hospital. Face-to-face and phone appointments were limited by her GP surgery most of 2020/2021. She managed to get an advanced phone appointment to discuss the severity of her situation. She sent images via email and was told that her referral was marked as urgent so that she could be seen asap but there was no communication sent to her after that appointment by the hospital.

Early 2021: The pain was extremely severe, but she was still working full-time and developed insomnia through the pain she was going through. The lump had extended further, and began to grow to the side of her thigh. Having still not heard back for the referral, she called 111 helpline and discussed everything with an operator, and she received a video call from a doctor on the same day. The doctor had put in notes for her GP to have emergency appointments booked for an MRI, ultrasound and X-ray. When contacting her surgery, they weren't aware of the emergency appointments and was told she would be called back when appointments were made available. She was also told that no new MRI or ultrasound referrals would be booked in through lockdown. A while later, she finally got a face-to-face appointment with her GP who acknowledged the severity of the situation and wanted to take action and get Jo seen to asap. She personally put in a request to an orthopaedic surgeon that she needed to be urgently seen.

June 2021: She called the secretary of the orthopaedic surgeon to chase up the referral and was told that it was not urgent enough and should wait to be contacted. She still hadn't had an X-ray at this point, even though she was meant to have one. She called her GP and threatened to sue, and miraculously received an emergency X-ray appointment on-the-day appointment. With the disappointing news of the orthopaedic surgeon not rushing to see her, she decided to pay for a private consultation as she was now becoming unable to work and the pain and lump size was becoming more intense. No cancer diagnosis at the time, but the consultant stated that this was serious and needed to be thoroughly checked asap and we were anticipating a cancer diagnosis. He decided to treat her via the NHS and get scans fast-tracked with his own team, as he wanted to ensure that everything was concise.

July 2021: She was still working and luckily her work they were very understanding about the situation. It had also taken a toll on her mental health, with not only the pain, but the appearance of the lump and the limitation in her mobility. After the private consultant's MRI, CT scan and biopsy, it was confirmed that she had Synovial Sarcoma Stage 2 in her thigh and that the best chance of living was to amputate. The tumour had grown so large (18cm) that she had no muscle or fat where the tumour had grown. There was also a risk that if they removed the tumour, they wouldn't be able to remove it all in one go so there was a big possibility that it would come back again, and possibly more aggressive. The CT scan showed a shadow, the size of a satsuma, on her chest, but it was unclear what this was.

August 2021: Shit hit the fan. She was referred to Macmillan for further investigations of the shadow on her chest. She had a PET scan on her whole body and biopsy on her chest. The result was that the cancer had metastasised, and unfortunately it was now also in her lungs and chest, and therefore was categorised as Stage 4. A very rare case as Synovial Sarcoma usually spreads in organs, and in this case, it grew outside an organ. It was confirmed that she had 6 tumours on her lungs ranging 11-20mm in size each. The tumour on her chest is the one to worry about, as it was at the time 7cm and sitting next to her heart and pressing on her left lung. Macmillan urged that she needed chemotherapy to start asap, and she began her course two weeks after full diagnosis.

September 2021: After just 2 cycles, the chemotherapy showed that it was working with a 25% reduction in tumour size for her chest. However, it is unlikely to shrink the tumour on the chest enough to make it safe to operate on. She applied to be part of the Spearhead trial, but was rejected due to the incompatibility of her blood type. Radiotherapy will be an option, but this will only control rather than reduce, and other options are privately funded. Trials include immunotherapy, Foghorn Trial and proton beam therapy, with will cost upwards of £100,000. She will also still need amputation to prevent any further spreading after she has undergone all her oncology treatment, and for a realistic prosthetic leg we will need a minimum of £10,000.

October 2021: Jo received a call from Chase Farm Hospital from a secretary regarding the original NHS referral (Marked urgent twice since early 2021). This was a referral done through her GP. It was a call to book in her first consultation with an orthopaedic surgeon- not even the right surgeon to be seeing. According to Jo’s oncologist She was needing to start treatment urgently (august 2021). Yet, this original referral (just fir a consultation) comes through now… How is it acceptable that these referrals come through now, and on top of that they’re oblivious to her current state and that she’s being treated. 

November 2021: 3 Cycles down show the tumour in the chest has decreased by 70%-80%, but the nodules in her lungs remain adamant. The original large tumour in her right leg underwent full leg scans on 09/11/21 using both MRI and ultra sound. Eyeballing it, it would appear the tumour has moved but not changed in size. The lump is slightly softer to the touch than previously too. A meeting will be had to discuss her process, plan, and what the new year will hold for her. Meeting is on 12/11/21. 

We need help as we know this will be a long and costly journey for our family, and we want her to have the best treatment readily available when she has finished all her NHS treatment options, this will also help her enjoy her life as she isn't able to work. Money will go towards non NHS treatment, a prosthetic limb and to anything else related. Any money unused will be donated to the Sarcoma UK charity to make other families’ lives easier going through this horrendous situation.

Any donations are HUGELY appreciated, and we are positive and hopeful that she will make it through this with further treatment.

Thank you!