Well, until those words were uttered. Then, life was different. I was now ‘a cancer patient’. I had this badge, this label that I didn’t want, need or understand.
As I tried to process those words, my main reflex was the need to ask questions – and lots of them. I wanted to understand what I had, how bad it was, whether I would be treated and what my future might look like.
This is where the kicker was for me. I had a rare cancer.
Well isn’t that just peachy? I have just been told I have cancer, but I had a very senior (and very amazing by the way) consultant telling me he had to speak to a specialist in London about me to agree a plan because what I had was very rare.
Where did that leave me?
Well, feeling alone I guess.
Anyone out there with a rare cancer diagnosis may recognise that feeling.
I was so fortunate to receive the best of care from my local oncology team, paired with the specialist care in London. I always trusted that I was in the best hands. Both my local and specialist teams are superheroes in my eyes.
But nothing prepared me for senior professionals not knowing all of the answers on the spot.
Nothing got me ready for typing my diagnosis into internet search engines and coming away with more questions than answers.
I imagined I would look online and find stories, information and other people like me. Tales of hope… or even tales of grim reality. Anything that may add context to what I may be about to embark upon. To my frustration, there were so few things out there. This all added to my uncertainty.
The more I searched, the more alone I felt.
That’s until I found The Robin Cancer Trust who had information and support about germ cell cancer. This small charity knew exactly what I had and I knew I wasn’t alone and there was hope. I became an Ambassador for the charity and am now a proud Trustee. As much as I support them, they continue to support me in navigating survivorship.
I am now well, 2 major surgeries later, including a hysterectomy which plunged me into surgical menopause, but physically all is looking good and I am cancer free.
My diagnosis was early and this meant that although chemotherapy was initially planned, it didn’t have to go ahead.
One thing I have learnt about germ cell ovarian tumours, is that treatment can vary. I’ve spoken to those who have had surgical intervention and then those who have had chemo regimes, each treatment regimen is very much dependent on your specific circumstances. There is not a ‘one size fits all’ approach.
My advice for anybody diagnosed with a rarer form of cancer:
DON’T FREAK OUT:
You may not be able to get answers immediately sometimes, but you WILL get answers. Medical teams have a systematic and collaborative approach. Seeking advice, guidance where necessary and consulting research. All to ensure the best and most appropriate care for your situation. They are remarkable people, but don’t know everything there is to know about every single medical eventuality off the top of their heads. Their evidence-based care is there for a reason. So don’t lose faith if you aren’t getting instant answers.
YOU DO YOU:
Everybody’s journey is unique. Don’t worry if your treatment regime is different to somebody else’s. Try not to compare your situation to others too much as it can cause undue worry.
ASKING QUESTIONS IS COOL:
If you are thinking it, ask somebody. Although you may be dealing with a rarer cancer, if your medical team cannot answer immediately, they can usually find out, or be open and honest with you if there aren’t answers.
If you don’t ask questions, they can eat away at you, and that doesn’t make for a clear mind. You have enough to be dealing with, without having unanswered questions floating around your head too.
That, you can control.
KNOW YOU AREN’T ALONE:
Although it can feel like it, you aren’t. Ok, sometimes it may be harder to figure this one out when you are looking at a rarer cancer diagnosis, but know that there are so many charities and people out there who may be able to support you. Don’t give up at the first internet search. Persevere.
I’ve been so grateful to collaborate with The Eve Appeal to talk about germ cell cancer and so grateful they are talking about this rarer form of ovarian cancer.
My door is always open to anybody diagnosed with ovarian germ cell cancer.
I might not be an expert, but talking to someone who can say, “Yes, me too” can be so powerful when you feel alone.
Insta: @sara_and_ovarian_cancer
Twitter: @germ_cell_sara
If Sara’s story has inspired you then you can help to raise vital awareness and fund life-saving research by signing up to hold a Make Time for Tea party. Sign up today for your free fundraising pack