Naomi:A new Mums fight with rare pregnancy cancer!

The birth of a beautiful new baby should be a time of joy and cherished memories for any mother. And so it was for Naomi, as she welcomed little Annie into her family alongside husband Maik and excited big sister Heidi. These first weeks of precious moments together, adjusting to the new family dynamic and enjoying important milestones were just as hoped. No-one could have predicted that within weeks of Annie’s birth Naomi would develop severe signs of illness, be diagnosed with a rare and aggressive form of a pregnancy-related cancer spreading to multiple organs within her body and be left suddenly and dramatically fighting for her life, with a catastrophic bleed requiring a life-saving brain surgery!

Naomi's life, and that of her young family, has suddenly taken a very different path and she is fighting hard to beat what we now know to be a choriocarcinoma; a highly aggressive, fast-spreading cancer related to her pregnancy. Despite its very malignant nature, the long term prognosis with treatment is good and Naomi will fight this. She does however, have a long and difficult road ahead of her, including a particularly gruelling chemotherapy treatment plan and potential need for radiotherapy and lung lobe removal, alongside long term rehabilitation from the consequences of the brain surgeries. The condition is so rare, that Naomi currently has to travel across the country regularly to receive her treatment, which is incredibly tiring, takes her away from her young children & requires much practical support.

As Naomi’s friends and family, we hope both to provide financial support to the family during this time, as well as to help Naomi reach her goal of raising awareness of this life-changing cancer in the hope that others with it may receive an earlier diagnosis and experience a less traumatic journey. Naomi is a positive, resilient and determined individual who has always worked hard, contributed much and given of herself unreservedly; there is now an opportunity to support her through her journey to recovery and any help that you can offer would be very much appreciated by us all.

This is Naomi's story...........

Who is Naomi?

Naomi, 39, is a loyal friend, devoted mother and cherished wife, daughter and aunty, who until recently was living a happy, healthy & busy life with her young family and much loved dogs in Lancashire.

Naomi, a qualified veterinary nurse, has spent her career caring for others; both through her clinical nursing of patients in small animal practice and as the Veterinary Manager for Pet Blood Bank. Naomi has dedicated the last 7 years to working with the Guide Dogs for the Blind Association, with her current role of Canine Assisted Services Operations Manager, helping match as many life-changing partnerships as possible in support of those with disabilities.

Naomi has a natural heart for helping others, and is genuine, thoughtful, humble and kind. As a fit individual, Naomi has completed several 10km runs, raising over £2.5k for charities, including cancer research, and has been a regular blood donor, donating a total of 35 pints of blood!

Naomi and Maik were delighted at the birth of their first child, Heidi in 2020. Despite hospital restrictions during the labour and the significant isolation facing new parents mid COVID lockdown, they focused on the positives and thrived in their new role as parents.

What changed?

Naomi & Maik were thrilled to be expecting their second baby in July 2023. The pregnancy was without complications and almost exactly 3 years to the day after her big sister’s birth, a beautiful & healthy baby Annie made an appearance by emergency c-section.

Initially all seemed to be well and, apart from Naomi having a post-partum (after the birth) bleed, she was recovering well and Annie was thriving. The bleed didn’t concern medical professionals as was in-line with normal post-partum changes and resolved a few weeks later.

Just five weeks after the birth however, the bleeding restarted, which Naomi recognised wasn't right. On a check-up with the GP, despite Naomi exclusively breast-feeding, she was advised this would likely just be her normal menstrual cycle restarting. Naomi felt something was really not right however, especially as this was nothing like the experience of re-starting her cycle when breast-feeding her previous baby. After persistently contacting her GP when the bleeding didn’t improve, she was eventually referred for an ultrasound and started clotting medication. The following week however, Naomi started to experience headaches which worsened over the following days until she became disorientated and started vomiting. Taken to A&E on the 17th September 2023, a CT scan was performed due to concerns that Naomi may be suffering from a blood clot from the medication; it was worse than that. Naomi remembers the doctor coming in to say "We haven't found a blood clot, but we can see multiple metastatic tumours"!

And so started a flurry of diagnostic tests. A full body CT two days later confirmed a further mass in Naomi’s right lung, suspected to be a primary tumour, with the brain tumours being secondary to this; this was however unlikely, given her age, sex and being a non-smoker. Following an MRI scan, Naomi was advised she would be referred to Liverpool’s Walton Centre (a leading facility for neurology patients) for further investigation….this however, was never to happen!

That night, Naomi woke up to a “thunderclap headache” and was blue-lighted to Wigan Infirmary, where a bleed on the brain from one of the tumours was diagnosed. In close communication with Salford Royal Hospital, Naomi was stabilised enough to transfer her over to their care, where a specialist neurosurgery team awaited her, with the expertise and facilities to deal with this specific type of emergency. Shortly after arrival at Salford Royal Hospital, Naomi’s condition quickly deteriorated and she became unresponsive; the only option was a life-saving brain surgery. Naomi’s Mum, Angela, described the moment at which the decision was made to rush Naomi to surgery; the phenomenal speed and efficiency in which the team set to action and whisked Naomi into the operating theatre was like nothing she’d ever experienced before. Thankfully, after a 7 hour open-head brain surgery, the team had managed to stabilise the bleed and take a biopsy of the tumour.

In consultation with the specialists, Naomi underwent a further brain surgery only three days later, to stabilise further tumours, which was successful. The surgeries were not without consequence however and left Naomi with acute acquired brain injury, hemiparesis (loss of function down one side of the body) and partial loss of vision. Hard at the best of times, but amplified when looking after a newborn baby and toddler.

Naomi was discharged on 29th September, just days after her second brain surgery, where she returned to her parents home with Maik and the children in order to recover. Thankfully, during these dramatic and fast-paced events, Naomi has had her loving family firmly rooted by her side; both physically alongside her in the hospital and at home, but also there to support her and Maik in taking care of the girls. Naomi was left unable to lift Annie safely due to weakness on one side of her body, had loss of peripheral vision which affected her movement and was left very tired and weak; her Mum nursed Naomi at home through both day and night and Dad, Paul was there throughout to help ensure all the practical aspects of her care were provided.

Little Annie required an emergency switch to bottle feeding when Naomi collapsed after only ever being breast-fed previously, which was not without issues and the family required support from medical professionals at Alder Hey Children's Hospital, when she also developed croup. Naomi’s elder sister, Hannah, temporarily moved back to the family home in order to be able to care for Annie, especially through the nights. Maik has done a tremendous job of juggling everything, having to step back from work in order to care for both the girls, being there alongside Naomi in the hospital and recovering at home and updating all their worried friends and family of her progress. Both girls have continued to thrive, despite the difficult circumstances and thankfully, Annie’s hCG test for the same cancer were negative.

The Diagnosis

Within a week of discharge, Naomi received a diagnosis for her cancer. Instead of a primary lung cancer, she was diagnosed with a choriocarcinoma; An exceptionally rare form of cancer originating from her womb! The good news was that despite it’s exceptionally aggressive nature, it can often be curable with aggressive treatment. Within hours of receiving the diagnosis, Naomi had been swiftly transferred from home to Weston Park Hospital in Sheffield, one of only two oncology centres in the UK that can deal with this type of cancer due to its rarity. An MRI and CT scan performed that same day confirmed that the cancer had already now spread to her spleen and kidneys, as well as developing further within her brain and lungs! The medical team started Naomi on an intense chemotherapy treatment the following day, with both ‘standard’ chemotherapy, as well as an additional course of intrathecal chemotherapy (into the fluid around the spine).

What is choriocarcinoma and what can be done to stop this happening to others?

Choriocarcinoma is a malignant cancer that develops when cells that were part of the outer covering of the growing baby (the chorion) become cancerous. Choriocarcinomas are extremely rare, occurring in only about 1 in every 50,000 pregnancies (that’s 10 to 20 cases each year in the UK out of nearly one million pregnancies!) and is more commonly seen after a molar pregnancy (when the fertilisation of the egg goes wrong resulting in the growth of abnormal cells) rather than after a full term, otherwise healthy pregnancy, as in Naomi’s case.

Choriocarcinoma can be difficult (and therefore slow) to diagnoses because of it’s rarity and can quickly spread to other parts of the body, as it did with Naomi. Presenting most commonly in the first few months after delivery, the most frequent problems experienced are persistent bleeding or problems caused by the disease spreading to the lungs however, an elevated hCG level will usually confirm the diagnosis. hCG (human chorionic gonadotropin) is a hormone produced by the placenta during pregnancy, which plays a role in thickening the uterine lining to support the growing embryo. It rises in level from conception until it’s highest peak towards the end of the first trimester, after which the levels then decline for the rest of the pregnancy. Levels of <5 mIU/mL hCG are expected in a non-pregnant person; at diagnosis, Naomi’s hCG levels were 36,591mIU/mL!!!! Naomi firmly feels that had her concerns been taken more seriously initially, her symptoms more fully considered and her bloods taken (including an hCG check) when requested due to ongoing abnormal signs of bleeding and extreme fatigue, then her diagnosis would very likely have been reached much earlier and the cancer treatment started before she reached a crisis situation.

Ultimately, cancer makes its own choices of when, who and how to affect. But early detection of this cancer would have led to faster, more timely treatment and importantly, would have made a huge difference to Naomi in likely avoiding the need for her to have endured two major brain surgeries, which have taken a significant toll on her.

Naomi is passionate about using this situation as a force for good. She is keen to raise awareness of this often unheard-of cancer and further educate those within both the public and medical spheres; with the aim of increasing consideration of this cancer as a potential underlying cause in women with relevant clinical signs, in the hope of earlier diagnosis and prompt treatment for them.

Next Steps

Naomi has been undergoing this gruelling treatment plan now for many months, with her family transporting her back and forward to receive her care in Sheffield. She is responding really well to the chemotherapy, with reducing levels of the malignancy in her body and with hopes of a full cure. Thankfully, choriocarcinoma is very sensitive to chemotherapy with a high expectation of cure once diagnosed.

The cancer treatments themselves have inevitably left Naomi with significant side effects, including ‘brain fog’, extreme tiredness and the loss of her hair. On the 25th October Naomi joined close friends and family to ‘Brave the Shave’ at Hair Headquarters in Parbold, raising over £2,000 for Macmillan Cancer Support and embracing her new look for this next chapter.

Naomi will need close monitoring and possibly further treatment once chemotherapy has ceased (including possible radiotherapy and potentially a lung lobe removal) and will require long-term rehabilitation to help recover from the consequences of the brain surgeries. Naomi still has a long road ahead of her and the full extent of the damage and the time frame for physical healing, regaining independence and returning to work all currently remain unknown, with approximately 6-12 months expected recovery period from the direct effects of her chemotherapy treatment. The emotional, physical and financial strain this situation has therefore put on Naomi and her young family is significant. Thankfully, Naomi and Maik are both resilient and focused individuals, who are working well to support each other and their young children and will adapt where and when required.

Our Fundraiser Hopes

Raising awareness of this life-changing cancer both within the community and the medical profession is key to other women like Naomi getting a more prompt diagnosis and early and effective treatment. So please, share Naomi's story as far and wide as possible and we will keep you updated on her progress.

For those of you who feel you can, we would also appreciate your support in raising funds to help provide some of the practical and financial assistance needed to allow Naomi to focus wholly on beating this cancer. Thank you for your generosity, it will make a difference.

Thank You

We cannot thank the medical teams enough for their outstanding care, especially the neurology team at Salford Royal Hospital, for their speed and skill in performing Naomi’s life-saving brain surgeries and the GTN team at Weston Park Hospital, Sheffield, whose specialist knowledge, dedication and outstanding care are driving Naomi forward in her road to recovery.

Thank you also to everyone else that have supported Naomi and her family in different ways throughout this most challenging of times; you are all very much appreciated. But most of all, thank you Naomi, for being such an wonderful and inspirational person. You are incredibly precious to us all and we are so proud of you. Now go and beat that cancer……..!!!!!

Information regarding choriocarcinomas referenced from Macmillan.org.uk, NHS Imperial College Healthcare (imperial.nhs.uk) and my.clevelandclinic.org