r/endometrialcancer • u/Ready-Sherbet-2741 • 23d ago

Newly diagnosed high grade serous carcinoma

I am now waiting for scan results to check spread. The stats on this cancer are terrible. I am 56 years old.

My symptom journey started with mild but persistent pelvic pain. Also started having changes in BMs. More D. Also, worsening insomnia. After a few weeks, I went to doctor and ultrasound showed 6mm lining but otherwise normal. Spotted blood with a BM then GP ordered a CT scan. Normal. Did a Pap smear also normal. A few weeks later a big bleed and went to ED. Then I was referred for a biopsy. I opted to go D&C/Hysteroscopy which happened last Wednesday. Gyno told me it looked like cancer after I woke up. Pathology confirmed the cancer.

Now a lot of crying and anxiety that is uncontrollable. Facing mortality with chronic insomnia is just bad. I share my home with my wonderful brother and one of my adult children still lives with me. I was widowed at 35 so my little family is everything. I am so upset that my children face losing their remaining parent. my adult child who lives at home is my best buddy.

I am being referred to the Gynaecology oncology team at my local hospital next week. Any tips for coping? Does anyone know why the cancer causes insomnia? medication?

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u/mcmurrml 23d ago

Hold on a minute. This cancer doesn't mean you are going anywhere. I know it is scary hearing it. Hopefully you will get more info on staging and treatment next week.

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u/Ready-Sherbet-2741 23d ago

thanks for saying that. I looked at the stats and got so depressed.

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u/no-user-names- 23d ago

I have this too. Stop googling! It makes you soooo much worse! I’m alive and well despite a recurrence, and I was diagnosed 2021. Now NED. Some of us have to be outliers in the stats - decide to be an outlier.

The treatment is horrible, I won’t lie, but you can do this. Keep in touch, and for now take an hour at a time. Yes, it’s bloody terrifying, but you can do this if I can!

Btw, from your language I think you’re in the UK? I am too.

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u/Only_Perception1671 22d ago

Glad to hear you are a NED now. My mother has been diagnosed with the same diseases in March 2025 with stage IV metastastis. If it’s okay could you please share at which stage you were diagnosed and how did you manage to achieve NED?

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u/no-user-names- 22d ago

The UK has not adopted the new system of staging for serous cancer, so all of this is the old system.

Before surgery they said probably Stage 3. Then after surgery they said Stage 1A. At the time the only treatment after surgery and 1A in the UK was brachytherapy, which I had. (Now, it’s changed and it’s much more aggressive treatment). I was then NED.

Then a recurrence followed by surgery, chemo and external radiotherapy, and now NED again.

The new system of Staging for serous is very confusing - some countries use it and others don’t. ALSO - there are sub-types of serous: they’re not all the same. Although they’re all aggressive, some respond to some treatments and some don’t. It’s horribly complicated.

Info I learnt here - someone’s consultant said that although serous is aggressive it tends to respond well to treatment. Best of wishes and fingers crossed for you and your mum.

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u/Only_Perception1671 22d ago

Thanks a lot for all information

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u/Ready-Sherbet-2741 23d ago

i will stop googling! I must admit it was useful for treatment pathway but absolutely horrible on prognosis.

I’m in Australia so we have the same head of state lol. The paracetamol tipped you off.

i will keep in touch because serous is rare - need more stories on here.

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u/Good_Vast4993 23d ago

The stats are old. There have been advancements in treatment for this cancer in the last five years. And more are coming! I have it as well. Don’t look at stats. You are unique and hopefully will have a unique positive response to treatment. Best wishes and stay in touch. We’re here for you.

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u/Ready-Sherbet-2741 23d ago

That really helps! The stats sent me into a doom spiral but the lovely folks on here have set me straight. im feeling a bit more positive and trying to concentrate on what’s next.