Emma’s Ovarian Cancer Story: The Need for Patient-Centred Communications
After 9 months of investigations, Emma was diagnosed with low-grade serous ovarian cancer (LGSOC) at the age of 24. During her tumultuous experience, which included IVF and a life-changing surgery, Emma found that there were crucial gaps in doctor-patient communications around early menopause. Consequently, she was involved in the creation of a booklet to support young women diagnosed with cancer who may be going through similar experiences.
TVF Communications spoke with Emma to hear her story, and to get her insights on the importance of ensuring there are appropriate communications available for newly diagnosed patients; particularly in Oncology where patients are often faced with making life-changing decisions in very short periods of time.
What Is LGSOC?1
LGSOC is a rarer form of ovarian cancer most commonly found in women aged between 45 and 57. As ovarian cancer cells are more like normal body cells than usual cancer cells, LGSOC is less likely to respond to chemotherapy. LGSOC growth is commonly linked to hormones such as oestrogen.
What Is Surgical Menopause?2
Menopause usually occurs naturally in women aged 45–55 when levels of oestrogen gradually decline. However, if a woman undergoes surgery to remove their ovaries, hormonal changes happen straight away – this is surgical menopause. Hormonal replacement therapy (HRT) is a common treatment for women going through surgical menopause. However, if the medical need for surgery is linked to hormones such as oestrogen, then HRT is not an option.
The physical and emotional effects of early menopause are severe. Young women must not only deal with the physical symptoms (such as hot flushes) but also the emotional impacts of an altered body image, changes to their sexuality and sex drive, and the impact on their fertility.
Emma’s Story
In 2019, Emma was diagnosed with LGSOC. Due to her young age, her symptoms were not considered urgent by healthcare professionals and the investigations lasted 9 months. Only a few weeks after her diagnosis, allowing just enough time for IVF treatment to freeze her eggs, Emma underwent the life-altering surgery of a full hysterectomy.
Emma reflects on this short period of time between diagnosis and surgery as a whirlwind of fear, loneliness and grief. While the focus was upon saving her life in the present, she reflects that there were crucial gaps in the doctor-patient communication about how this surgery would affect her future life. Surgical menopause had been mentioned as a side effect but Emma says the extent of it was not fully addressed by the (predominantly male) specialists and she was left unprepared.
“Often doctors are just focused on saving your life, which is understandable. But when you have to live that life then the ‘after’ needs to be considered too.”
While recovering from her surgery in the high dependency unit, Emma did not notice any changes. However, when she left hospital she had her first hot flush. She then started to notice cognitive changes to her memory and struggled to sleep. Over the next year, her hair started to thin, she noticed vaginal changes, and she gained a lot of weight. During all of this, her oncologist started her on a maintenance drug to prevent the cancer from returning, which only exacerbated the menopausal symptoms.
“Menopause had been mentioned to me as a side effect of the surgery that I was going to have. But it was brushed over and was not fully addressed. My surgeon and oncologist were both males, I felt like this wasn’t considered a big deal to them.”
At the same time, Emma was told that she could not have HRT as her cancer was hormone-positive. She was referred to a menopause clinic, but the waiting lists were extremely long. She was angry that the specialists making decisions on her behalf were not considering the huge impact on her life as a 24-year old woman. Finally, she managed to get an appointment with a menopause doctor that completely transformed her post-surgery experience. She learned about alternative non-hormonal treatments to help with menopause but most importantly, she felt reassured.
“Access to a menopause doctor is extremely rare, there are limited clinics in the UK. I was extremely lucky to be in the position to be allocated a menopause doctor.”
Some months later, Emma was involved in the creation of a booklet as a joint project between Clatterbridge Cancer Hospital in Liverpool, The Christie in Manchester, and The Teenage Cancer Trust. The idea for the booklet came from the Teenage Cancer Trust based on constant feedback from young women regarding the lack of awareness around menopause following cancer treatment and the gaps in communication while they were receiving treatment. Through her involvement, Emma hopes to fill the support and communication void that she experienced while ensuring others do not suffer the same.
The booklet provides crucial information to support young women faced with early menopause, including more specific information that their specialists may not be aware of. For example, it highlights the long-term effects of early menopause, such as dementia, heart disease, and osteoporosis,3 and how beneficial HRT can be to those who are able to take it. However, most importantly, it offers accounts of Emma and two other young women’s personal experiences. They included their own stories to shape the topics which will undoubtedly help newly diagnosed patients feel reassured and not feel so alone in their diagnosis.
The booklet is currently handed out at Clatterbridge Cancer Centre and The Christie, but a PDF version is also being made available and the Teenage Cancer Trust are planning to roll it out even further with a social media campaign. Through this enhanced circulation, it is hoped that women going through surgical menopause, or considering life-changing surgery that would bring about early menopause, will have all the information and reassurance they need to help them make this decision. Putting patients in the driver’s seat when making these decisions – something that Emma feels she missed out on.
Conclusion
Emma’s experience demonstrates how the benefits of a remarkable life-saving surgery can be overshadowed by poor quality of life in the aftermath when not given the adequate resources. The inspiring involvement of herself and the other young women in the creation of this booklet should ensure that newly diagnosed young women receive the much needed information, experience, and support that she felt was absent when she made the decision to undergo surgery.
This booklet does not stand as an anomaly. In medical communications we are seeing a growing focus on patient-centred communications.4 There are many reasons for this, but Emma’s story shines light on one in particular - while doctors are experts in saving lives, there are some things that are very specific to the actual lived day-to-day experiences of patients that survive, which may be best communicated by themselves. At TVF, we have learned from speaking to Emma and other patients with rare diseases that following a diagnosis, it is invaluable to hear from other patients. It is clear that at these crucial moments, reassurance and the desire to not feel alone are incredibly important and often overlooked.
By Pari Shahabi
