Perhaps the strangest thing about Jessi Gutch’s condition is that she is currently feeling no symptoms, is pain free, and is showing no outward signs of a person facing incurable cancer. Yet this is the situation that this 28-year-old film producer from London, UK, finds herself. She has a very rare ovarian cancer called Sertoli-Leydig cell tumour, which has metastasised. Sertoli-Leydig represents roughly just 0·5% of all ovarian cancers, and of these, 90% are found at stage 1 and resolved, while just 10% metastasise. This particular form of ovarian cancer predominantly affects young women.
Like many women diagnosed with any form of ovarian cancer, Jessi’s original symptoms were initially mistaken for something else. On Christmas eve, 2018, she awoke with terrible pain in her abdomen. “Like no pain I’d ever felt before”, she explains. Her worried parents, who she was visiting for Christmas, took her to the nearest hospital accident and emergency department, where doctors believed she had acute appendicitis. “I was told my appendix could be removed during the morning of Christmas day, and I might be home in time for Christmas dinner”, she recalls.
When she was woken for the appendix procedure on the morning of Christmas day, she was shocked to see several gynaecologists at her bedside, along with the rest of the medical team. They explained that the CT scan taken the night before showed a mass over her ovaries, twisted around the fallopian tubes and cutting off blood to the ovaries. “They thought it was a cyst”, Jessi explains. “I had to wait an extra day for surgery, but after the operation, they told me it had been 12 cm in length, and they had removed it along with my right ovary.” 6 weeks later, at her follow-up appointment, she was told that it was a tumour. “Again, more reassurance from the doctors that it was almost certainly benign”, she recalls.
It was 2 weeks after this that the devastating news arrived, this time with no reassurance. Rather than being informed with a personal call or meeting request, Jessi was copied into an e-mail from the West London Gynaecological Cancer Centre, which had been sent to her general practitioner (GP). “The e-mail said doctors were very concerned about my histology, and they would call me to come in the next day—I knew it was bad news, and this was not the way I wanted to find out.”
Oncologists at Hammersmith Hospital (London, UK), explained to Jessi the next day that in this type of cancer, the most common cause of spreading is rupture of the original tumour during resection, and the notes from her operation showed this could have occurred. Further examinations revealed some abnormal cells, but these turned out to be from endometriosis and unrelated to the tumour. She returned one clear, cancer-free scan in May, 2019, but then the following scan in August showed small tumours had developed on the surface of her liver and bowel. “Because they were only on the surface, rather than having entered my liver and bowel, these tumours could be removed”, Jessi explains. Following surgery, she underwent intensive chemotherapy, with 8-h infusions every 7 days for 3 weeks, followed by a gap week, then repeating the cycle twice more. As well as fatigue, Jessi lost her hair and experienced neuropathy.
The scan after her second surgery came in January, 2020, and was clear. Jessi began to hope that her ordeal might be over, but remained realistic. Then, 2 months later, an entirely new situation pushed its way into everyone’s lives—the COVID-19 pandemic. By March 18, 2020, the UK was in lockdown, and Jessi’s April scan was cancelled.
Holed up in her one bedroom flat in south London with her boyfriend Rob, Jessi began worrying about her cancer spreading and the end of her life being played out during lockdown, and, because she was shielding, being unable to see any family or friends. But rather than spend endless hours on this negative thought loop, she decided to do what she does best—make films. She currently divides her time between freelance projects and working in-house to produce films for charities, such as the Red Cross and Doctors Without Borders (MSF).
In the film, that stars actors Mandeep Dhillon and Charlie Rowe, the central character Aisha (Dhillon) is shown marrying her boyfriend during the lockdown, and then talking with family and friends from the window of her flat as the pandemic progresses, while all of them struggle to deal with her terminal diagnosis. “It was possible for me to imagine what Saima and other patients with cancer have gone through in lockdown”, says Jessi. “Like Saima, sadly many of them passed away before restrictions were lifted. And we could be about to face a similar situation again as COVID-19 resurges in the UK.”
Jessi knew that every day that passed without her scan was more time for the cancer to return. “I have been in regular contact with a patient in the USA being treated for the same advanced cancer as me, who is a few years ahead in her diagnosis”, Jessi says. “She told me that I absolutely must get my scan done. It could basically be life or death. After multiple calls to my cancer nurse specialist, a time was found for me to go in in May.”
This scan found several more small tumours in various locations, meaning the cancer is now resistant to chemotherapy. Jessi then began the next stage of treatment, involving daily oral letrozole and a monthly injection of leuprorelin to block oestrogen in her body and prevent tumour growth, and also metformin, usually used to treat diabetes, which has shown some anticancer effects in clinical trials and population studies. As the COVID-19 lockdown eased in England during summer 2020, Jessi was able to attend her next scan in July without difficulty. This showed some tumours had shrunk, while no new ones had appeared.
While this is good news, Jessi remains realistic about her prognosis. “When a cancer returns after chemotherapy, it’s referred to as incurable. I certainly prefer the word incurable to terminal”, she says. “For some people, this prognosis can be pretty grim, with a large proportion of patients not surviving beyond 2 years. But this cancer can also be kept under control for many years. The patient I’m in touch within America has been on all the treatments I have had, and had others that may be yet to come for me.”
The US patient Jessi refers to has in fact just had an experimental surgery called heated or hyperthermic intraperitoneal chemotherapy (HIPEC) surgery. In this treatment, the peritoneum (the lining of the abdomen) is removed, and the abdomen bathed in hot chemotherapy fluid. This is done because ovarian cancer often spreads through peritoneal deposits that are very hard to get rid of completely. And this treatment, although it can cause life-long side effects, can also keep the cancer at bay for an indeterminate time. “Of course, if we get to that point, and I’m out of options, I would consider this therapy”, Jessi says. However, at the moment, only one cancer centre in the UK, in Basingstoke, performs this treatment.
At the time of writing (October, 2020), cases of COVID-19 are again surging in the UK, and Jessi is fearful of the impact of another lockdown. “I know I can continue my existing injections and tablets, as this could be done with my GP if necessary”, she says. “But what if I needed to go to the next stage of treatment, or have this HIPEC surgery? Everything would be so much more complex, and in some cases impossible, in a new lockdown. Also, I have heard that cancer treatment is going to be rationed if things get really bad again—would I be one of the people allowed to continue? I’m worried about being reduced from a person to just a score on a doctor’s computer that will decide if treatment carries on or not.”
Like the central character in the film, Jessi was able to marry Rob during lockdown, and at the time it was possible to have 30 people attend. “Even though it was not as we originally planned, we had an amazing day”, she says. More good news arrived for Jessi just before this article was published, regarding her scan from October, 2020. “The scans were stable, with no tumour growth or new tumours. So I will continue with the existing treatment for another 3 months, and then be scanned again.”
Maggie’s Chief Executive, Dame Laura Lee says, “People living cancer have understandably found coronavirus and lockdown an extremely worrying time. With treatment delays and cancelled appointments, many people living with cancer are anxious about how coronavirus will impact their future as well as being scared of catching the virus itself. The Forgotten C is a powerful film that reflects the stories we have been, and still are, hearing in our centres on a daily basis.”
Published: November 06, 2020
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