Rachel Coram, from Poynton, near Stockport, was told she had Advanced Sclerosing Fibromyxoid Sarcoma – which grows in soft tissue and bones – on Christmas Eve last year
Image: Rachel Coram)
A young mum has pleaded for ‘at least another year’ with her little girl after being diagnosed with a rare form of cancer at the age of just 26.
Rachel Coram learned she had Advanced Sclerosing Fibromyxoid Sarcoma – which grows in soft tissue and bones – on Christmas Eve last year.
The teaching assistant, of Poynton, near Stockport, was told she could’ve been living with the cancer cells growing in her body for as long as 10 years.
Now, 12 months on, her cancer has spread and she must raise £100,000 for potentially life-saving treatment, the Manchester Evening News reports.
Rachel told of how she is ‘willing to do anything’ to prolong her time with her two-year-old daughter.
Rachel In front)
She said: “Back in February last year, I had found a pea-sized lump above my belly button and went to get it checked, but GPs suspected it was a hernia from giving birth.
“I am very in tune with my body and just felt something wasn’t right so kept trying to go back, but then lockdown hit a month later and it was increasingly hard to get seen by anybody.
“It was in the September that my parents paid for me to get a private scan and an MRI and ultrasound which still didn’t show it was cancerous.
“But weeks later a biopsy came back and confirmed it was a low grade soft tissue sarcoma.
“I went for a full body CT scan at the Christie (Hospital) because sarcoma cancer is known to spread quickly.
Rachel In front)
“It was on Christmas Eve when they told me I had it in my liver, lungs, spine, knee, neck and breast.
“It was the most surreal moment ever. I didn’t feel like I was awake or even there. I knew something wasn’t right but nothing in the world can prepare you for that sort of news.
“Doctors couldn’t believe it had spread so much, it was virtually all over my body and I had absolutely no symptoms at all.
“It just hit me. I just did not know how to process that I had cancer everywhere.
“All I did was cry over Christmas. We had no idea what it meant for my lifespan or my future.
“It felt like a death sentence.”
Falling into a deep pit of depression, Rachel didn’t leave her house until the end of January.
Rachel In front)
Since then, she has tried various treatments including an eight-week course of radiotherapy on her neck and spine.
She was told she could end up paralysed if her tumours grew any bigger near her spinal cord.
Rachel was also given a strong dose of steroids for 16 weeks that left her feeling exhausted and fatigued ‘on another level’.
But another scan earlier this month revealed that her tumours had continued growing.
Her one possible chance – four rounds of Immunotherapy – have now been suggested by oncologists.
But this comes at a cost of £100,000 for four rounds of both Ipilimunab and Nivolumab, and she must raise it herself.
The NHS does not fund the treatment for her very specific diagnosis of Sarcoma cancer – of which there are more than 50 known types.
Her parents even put their Stockport home up for sale just to be able to pay for the expensive treatments privately.
Rachel added: “It is such a rare type of Sarcoma that I have.
“I could even be one of the only people with it in the entire country which is why it took so long for the results to come through and be diagnosed.
“I can’t get the treatment funded on the NHS because there is no guarantee it will be successful.
“Although I have been told that these treatments have put people with sarcoma into remission, which is giving me hope.
“When I found out I would have to go private, I was angry and felt like just a piece of paper or a statistic that someone has just looked at and decided against.
“My parents even put their house up for sale to get equity in the house to pay for the treatment.
“We are just desperate to try anything that could work.
“Any parent would want to have as long as possible with their family and to watch their children grow up.
“I am willing to do anything.
“I am not in the mind frame that it will cure me, but I am hopeful. If it gives me even an extra year with my family, that will be amazing.
“It keeps me hopeful that I could be alive for years, but at the same time it is so frightening to not be able to plan for a future with your family.”
Since her diagnosis, Rachel has remained positive and has been raising awareness through her personal blog ‘A Unique Sense of Tumour’.
She regularly posts health updates in the hope of encouraging others to take their health seriously and get any concerns checked.
The NHS confirmed that currently, the Ipilimumab and Nivolumab treatments are not licensed for Rachel’s condition.
However, they are licensed for the treatment of other cancers via NHSEI or Cancer Drug Fund routes.
In a bid to raise funds to help fund her treatments, mum-of-one Rachel set up a Just Giving page, which has raised more than £70,000 in a matter of weeks.
“I am just absolutely amazed by the response and all the support from people,” Rachel added.
“It meant I could call my mum and dad and tell them they can keep their house.
“It could mean another chance at life with my family.”
Donations can be made to help Rachel hit her £100,000 target here.