Hello, My Experience with Ovarian and Womb Cancer As A Young Woman (Open Hysterectomy/Awake) - Doctors Need More Awareness!

Hello, Just joined the forum. I am a 34 year old woman and I am currently undergoing treatment for Ovarian Cancer (Stage 1C? TBC) and I have already undergone radical hysterectomy treatment for Womb Cancer (1A). I am also under investigation for breast cysts too.

Both my cancers are primary and are completely unrelated (and not a spread of each other) which, just like me, typically exceeded everyone's expectations. It also means there is a high likelihood that the cause is due to a genetic variant myself or my family didn't know about - such as a BRCA gene or a similar rare genetic predisposition.

The last few months have been really hard, but thanks to God my outlook is very positive as both my cancers have been diagnosed at Stage 1. This means they are early and the doctors have advised that I will be fully cured after further surgery and chemotherapy although I do not have any children yet and now this is no longer an option for me (thankfully I now prefer cats and dogs to kids anyway).

My experience of how I ended up here is personal and I don't want to unnecessarily scare anyone who is just having a read wondering about their symptoms - but always trust in your own intuition when it comes to knowing your body. Never stop being a nuisance to health professionals if you feel that 'something is not quite right'. If you have just been diagnosed, it is completely rubbish for a while and your whole life will be tipped upside down, but if it is any assurance, like anything it does get easier and you do get stronger. 

-----

I first experienced some mild changes in my cycle after my husband was critically ill in hospital nearly two years ago. I knew about being aware of any changes, so my GP promptly referred me to the hospital. However, as I was at my personal best health/fitness and was fairly asymptomatic, I was not considered by the hospital to be a likely candidate for cancer. My minor complaints were similar to many more common conditions and subsequently I was told the cause could be anything from stress, to anxiety, to low vitamin D levels.

Although I am a massively grateful for our NHS service that is the envy of the world (my advanced practitioner and local surgery were amazingly supportive), something I have learnt from my experience about early cancers is that unfortunately they do get missed by hospitals no matter how much awareness we as patients have of early symptoms and I feel that persistence has now become absolutely necessary.

From my understanding, many of us do successfully get diagnosed when their cancers are at a precancerous stage, however not enough of us!! Many all cancers present themselves clearly on scans, or even show up in regular blood tests until they are further advanced - especially if your local health centre has outdated ultrasound.
In my case, my small cancers were mistaken for regular polyps as they were not presenting in a typical way. Therefore, further investigation should have been warranted in my situation.

Additionally, the hospital backlog seemed huge at my hospital (noticeably busier than when my husband was in hospital care pre-covid) and the consultant did not seem to have the time she needed.

Unfortunately, although I want to stress there were very caring individuals there, overall I felt there was a low sense of urgency for investigating  'woman's problems'. I was considered too far out of the normal bell curve for cancer.

Charities like 'Target Ovarian' are working to change this perception in the medical profession as well as among the general public. A 20k strong petition was recently sent to the government to roll out awareness campaigns in hospitals and public settings.

In my case, although my womb tumours were spotted on both a scan and hysteroscopy in another set of scans pre-2021 they were considered benign due to my age and therefore they were not removed immediately. This was both well intentioned and unwise, as it was to avoid damage to my body which could interfere with future chances of conception. Had this critical biopsy gone ahead at this time, or a C125 blood test had been taken (which is a simple blood draw that can detect ovarian cancer cells), this could have both saved my fertility and would have kept me at the pre-cancer stage.

Additionally, a follow up procedure was also cancelled. I was told this was in favour of patients who were considered more statistically at 'urgent risk'.

This is why I can't emphasise enough why it's so important to keep going back for referrals when your symptoms have not been given a diagnosis - do not give up on answers even if it means feeling like you are pestering! Catching cancer before it gains momentum is more than just being aware of the early signs - it's about making sure you're being taken seriously. In this post covid world make sure you are not getting sent home with an 'unexplained' diagnosis letter no matter what the complaint is.

------

In September 2021 my local surgery then sent me back for another full scan to reassure me. The results came back this time showing completely clear and my regular blood tests continued to suggest I had nothing wrong with me. Again, as I was young, I was told by the consultant that having cancer wasn't even part of the conversation and that the tumours that were seen previously were benign fibroids and thereby the situation had now resolved itself. I was then advised that I did not need any further procedures and could be removed from the hospital care and waiting list if I wished. I was even phoned again by the booking team asking if they could take me off the waiting list.

Again, I insisted on waiting for another procedure and continued to wait patiently, I was assured that it was probably no big deal and if anything I thought the doctors were over investigating, when in reality I think they were so busy I was barely on their radar.

In 2022 after another year of regular blood tests, I had another painful procedure under spinal anaesthesia (of which I undertook optionally) and by the grace of God, an incidental biopsy sample was finally collected for testing. Again I was blessed with a further miracle - the operation itself actually failed in its objective and nothing was removed by the medical professionals who again didn't want to ruin my womb for conception. However, thankfully even my tumour then decided it had lost its patience and miraculously it removed itself.

-----

Once I was finally diagnosed with Womb Cancer I was offered hormonal treatment as an alternative to a hysterectomy to save my fertility. As I was told my cancer had been caught early they advised this would be enough to treat it without surgery.

Unbelievably, what happened next, again I can only thank God for His discernment. Although hormones seemed like the most pain free and hopeful option, I followed on from prayer and decided to reject this option without even seeing the cancer expert who would do the hormone treatment. This was a life saving decision as had I decided to get emotional and try for children at this stage I would have been left living unaware with Ovarian cancer, which only would have got worse later down the line.

I had yet another further close call before my radical surgery. A board of consultants examined my scans and decided to leave my ovaries in place as again they thought I was too young for two cancers despite already having womb cancer.

However, my life was again saved when the nurse doing my egg freezing warned both myself and the hospital that my ultrasound results looked like I had a suspicious cyst with solid and a blood flow (I can't imagine what could look less suspicious). I knew straight away that she was right, and as a result of her intervention and her requesting a C125 blood test (which should have been taken way earlier) the hospital decided to remove my left ovary to biopsy as a precaution. Thank you God for Lyn from Manchester radiology who knew a cancer when she saw one!

Nevertheless, it was still assumed by the hospital team that I statistically couldn't possibly have two separate cancers at my age so advised they would leave my other ovary in. At this point I was completely panicked, but despite being able to see the tumour on all the scans and the fertility clinic sending them a C125 result that was double the levels they should have been, the hospital remained convinced I could not have Ovarian cancer.

To try and intervene on my behalf, my advanced practitioner called the hospital to question why my suspicious ovary cyst had not been reported to her. Even then she was advised her that it was nothing to be concerned about and she was advised that cysts were common in pre-menopausal woman.

After this my care appeared to be taken over by another very reputable doctor in the hospital, who was very kind and seemed to have more time for me. As I naturally managed to test positive for Covid two days before I was due for surgery, the team allowed allowed me to have my radical hysterectomy awake under spinal anaesthesia which prevented my airways from being intubated (would thoroughly recommend the sedative - it's like getting blackout drunk without the hangover!). If anybody is tempted into the prospect of an open hysterectomy whilst awake, this procedure was not HALF as traumatic as I thought and I'd actually opt for this again - of anybody wants to know more feel free to message me. However, despite his best and genuine efforts, my operation was only half completed as my right ovary was not removed still - all due to the doubts surrounding the possibility I could have ovarian cancer.

Going forward, I now need chemotherapy and surgery which could have been avoided had my ovaries been examined and diagnosed sooner.

Nevertheless, I am positive and I am confident that by Gods grace I will heal from cancer. I have no negative feelings towards anybody at hospital, but I do have concerns about how many of us have been sent away with 'cysts' when they actually had an early cancer and I hope that more focus is put on Ovarian cancer the same as it is cervical cancer.