Sarah was diagnosed with a rare type of kidney cancer (papillary renal cell carcinoma) in 2009 at the age of 32. She very quickly joined the Kidney Cancer Support Network website forum to connect with other patients and find out as much as possible about kidney cancer. Later on and recognising the power of Facebook, Sarah had the idea to provide a confidential area on Facebook where kidney cancer patients could share their knowledge and experiences with each other in a safe and private group away from the public eye. So Sarah started the ‘UK Kidney Cancer Support Network’ Facebook page to compliment the KCSN Resources Forum and the page was later expanded to include carers and families of people affected kidney cancer.
Sadly Sarah died in July 2014 having fought an inspirational & courageous battle for five years. She fought with determination, not just to beat her own disease but to help others going through a similar battle. Above all Sarah knew how important it was for patients to talk to each other; to share their fears and their successes, their highs and their lows, and have someone to turn to who truly understood how she felt. This is Sarah’s story.
Sarah was walking home from her daughter’s school when she felt a pain in her back and a desperate need to wee. She thought she had UTI and made a dash for the toilet as soon as she arrived home; her urine was red wine in colour. She was initially prescribed antibiotics for a suspected UTI, after three weeks a GP examined her and found a tennis ball size lump on her left side.
She had a radical nephrectomy in April 2009 which revealed a 10x11cm tumour and she was told she was a grade 3, stage 3 and given the awful news that this carried a high risk of recurrence. Sarah joined a clinical trial called SORCE (Sorafenib v placebo) to assess if sorafenib could help prevent a recurrence in higher risk patients. She had severe side effects while on the trial but still managed her home and looked after her 3 children, determined her disease would not affect her children’s home life.
One year later in June 2010, a routine CT showed the disease had spread to her liver and there was three further tumours in her remaining kidney. She was now a stage 4 patient with bi-lateral disease and had to come off the trial. Following further major surgery (liver resection and gallbladder removed) plus RFA on the tumours in the remaining kidney, it was confirmed that her kidney cancer was ‘papillary type with a mixture of clear cell’ and she was given the terrible news that it was considered to be incurable.
Still fighting, in April 2011 she started on sunitinib which worked for five months but eventually had more disease progression. Her team at Southampton Hospital agreed to do RFA but just over 5 months later more progression was seen and she started on everolimus (10mg daily). Sadly everolimus did not work either and she was referred to the Royal Marsden Hospital in London to see if there were any clinical trials available because she had run out of NHS funded treatment options.
In June 2012 she started a phase 1 clinical trial (drug called AZD2014). Sarah said …..
“I cannot speak highly enough of the drug development unit at the Marsden, through those weeks they became my second family, I went to hell & back at that time, away from home all the time, constantly in hospital, and my health deteriorated. Phase 1 trials are no easy undertaking….you cannot prepare yourself enough for what is involved”
Sarah endured long spells away from home which was so difficult for her being away from her children, sadly the trial did not work so she had to come off it. She was devastated and was also told axitinib could not be prescribed on compassionate grounds, something she had thought of as a possible back-up. Fortunately her Oncologist in Southampton appealed to allow Sarah to re-challenge the drug sunitinib through the Cancer Drugs Fund (CDF), this was declined, but in the interim axitinib had became available via the CDF and thankfully her next application was approved. This was wonderful news and she started on axitinib. Although axitinib held most of the disease at bay, one large tumour in her remaining kidney was growing. Surgery to remove the existing kidney was considered but not pursued as it meant Sarah would have had to be off axitinib for 8-12 weeks and this may have allowed the disease to progress further. And so Sarah agreed with her medical team to stay on axitinib as it was certainly slowing things down. They increased the dose (7mg x 2 daily) in the hope of saturating the tumour. Sarah was very brave as always and she insisted the side effects were manageable.
Sadly in May 2014 Sarah felt quite unwell and received the devastating news her remaining kidney was starting to struggle. Her medical team discussed the possibility of dialysis with her but whilst in hospital she was told this option was no longer viable. After feeling very unwell, the decision was taken to restart axitinib at a lower dose as a form of pain management and Sarah returned home feeling more at ease but knowing that when things deteriorated next time the Hospice was where she wanted to be.
Sarah finally succumbed to kidney cancer in July 2014. Her children and family were the most important things in her life and she always said she did not want her battle with kidney cancer to define her. She left three beautiful children into the care of her brother Phil and his wife Lauren. Sarah gave friendship and support to everyone who joined the KCSN Facebook Group she had started. She knew the value of the shared patient experience but it was her family who gave her strength and in particular her brother Phil who was her rock, supporting her throughout each day of her journey and attending every single Hospital and clinic appointment with her;
‘I am also very fortunate to have a brother who has been at my side from day one of diagnosis & without him I’m not sure if I could have come as far as I have.’
The KCSN Facebook Group Sarah started is now a safe haven for many hundreds of kidney cancer patients and carers and is a wonderful and fitting legacy for a kind, determined and inspirational young lady.