Let’s talk about gynaecology cancers

I’ve recently been diagnosed with a condition called Complex atypical endometrial hyperplasia. There’s 40% chance have concurrent endometrial cancer in my womb, but they can’t confirm until I’ve had a hysterectomy which is the recommend treatment at this point. I'm only in my early 30s and this has been alot to process. My head is a mess with it all.

Ive been told "you're so young to have been diagnosed with this, it's a rare case". It's something that doesn't get spoken about enough. I won’t go into all the details, but suffice to say it’s been difficult few months.

There so little information on the internet especially around precancerous conditions and regarding hysterectomies especially when your only young.

anyone able to offer any advice? Anyone been in similar position?

Offline haylzz over 3 years ago

Hi
I've had pre-cancerous changes on my cervix, vaginal wall and vulva since my first smear at 25. In September last year I had a biopsy taken from my vulva. I was told that it would be nothing to worry about, it didn't look like cancer and it was probably just pre-cancerous changes again, plus I was too young to have vulva cancer. 6 weeks later I got the result (alone because of covid) that I had vulva cancer.
Fast forward to today... I've had a total vulvectomy, all my groin lymph nodes removed (because the cancer had spread) and I finished radiotherapy and chemotherapy at the end of August. I'm now going to go through early menopause because the treatment has damaged my ovaries. I don't have any children and that choice has now been taken from me anyway. I'm 37.
I completely agree with everything you said. Just because a cancer is rare in a particular age group, gender or ethnicity doesn't mean that it doesn't occur. I've found it hard to find information on early menopause caused by cancer treatment so I'm just wondering if every symptom I get (like itchy skin) is being caused by it.
I hope you get more replies to this topic. It will be interesting to hear from others. I hope everything goes well for you.
XxX
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Offline Debsjay over 3 years ago

Hi. I've been in a similar situation to you. When I was 26 I was told that I had cervical cancer and that I needed a hysterectomy. It was all a bit of a whirlwind. It was picked up on a smear test, I'd had no symptoms and all my previous smears were normal. From being told to having the hysterectomy was only 2 weeks.
I too was constantly told "you're so young, it's so rare" and to be honest it became very annoying as being told that doesn't really help you does it? This was over 25 years ago now, before the days of Jade Goody. You may not be old enough to remember her, but she was a celebrity who went through the same thing and did a lot to highlight the fact that younger women get it too and the importance of regular smears.
I don't know if you already have children? If, like me, you haven't that is also something that you will need to process.
Thankfully, things have moved on a lot, both in terms of gynaecological treatments and the support available. We didn't have the internet when I was going through it, I'm too old! Now you have access to forums such as this where there will be lots of others who can offer you support and advice.
Take one day at a time, I'm here if you need a chat.
Debs x
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