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Ovarian cancer stage 1, 27 no children, having 1 or both ovaries removed.... Can I get help freezing my eggs?

keeshasw
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Well I don't even know where to start really..... I had open surgery back in October to remove a 30cm ovarian cyst, which at the time, I was told was not cancerous and that all the tests came back clear it was removed successfully, both ovaries and tubes remained intact and as far as I was aware everything was now done and dusted. 

Here I was feeling amazing, 1000000% times better than I'd felt for over a year due to the havoc the massive cyst was causing on my health. Well, today I went in for what I thought was just a post op chat to be told in fact that they did a biopsy when I had it removed and it has came back as Stage 1 Ovarian cancer and at best case (so long as the new CTS scan show it hasn't spread) I will have to have one of my ovaries removed.... ideally both, depending on whether I want children in the future or not. My initial response was "surely it's best to remove both?" As I have read that it's very common for it spread to the other ovary very easily, and considering I'm already sporting a big C-section scar to remove the cyst (And not having a baby!) I don't want to have to have this surgery THEN ANOTHER ONE later down the line too. The consultant said that yes ideally they would rather take both but he understands I'm 27 and not had any children yet so I need to make a decision if I'm ready to give up the option to be able to have children... my response "Well, you can't have children if you aren't here anyway!" 

I'm definitely going to just bite to the bullet and say remove both regardless if it has spread yet or not as primarily the most important thing is making sure I'm okay and the cancer is removed. 

Do I want children right now? No. Was I ready to make the decision to never have them? No.... It's not something I wanted to even think about right now, I'm not sure how I feel about children but the thought of not having the choice is upsetting. However, it's my understanding that the surgery will be pretty sharp and I will need to make a decision asap. 

Does anyone know where I can look into funding to freeze my eggs? I believe there is funding for this from the NHS if it's due to cancer treatment (which i assume this counts as even if I don't require radiotherapy or Chemotherapy?) But I really need to get the ball rolling soon in order to try and make this a reality. I don't even know where to start :( 

Thank you in advance 

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    Hi Keeshasw 

    Sorry to hear of your diagnosis. My situation is similar to yours so thought I'd drop you a reply.  I'm 32 so at a similar point in life too.

    I was diagnosed in December with Stage 1C Granulosa Cell Tumour, which is a rare type of ovarian cancer. Like you, my initial surgery was to remove a large cyst. 

    In my case, I was given the choice of surgical options going forward - either just remove the ovary (to preserve fertility but increases chances of it coming back/could have already spread) or have a total hysterectomy and omenectomy.

    I spent a lot of time considering my options, but eventually decided to have the hysterectomy as, like you, I felt 'better' to get rid of everything in one go rather than have further surgery down the line. My surgery is next week which I'm a bit nervous about!

    One thing I would check out though is what the impact may be of removing both ovaries in terms of surgical menopause. I was told that it would be quite abrupt and potentially quite intense, especially being quite young. Having low levels of oestrogen can also increase risks of long term health problems like osteoporosis and heart disease.

    In my case I have been told I cannot have HRT to minimise this, as my cancer is oestrogen receptive. It might be worth a conversation with your medical team about this, and whether there are things you can do to manage this side of things.

    Good luck with whatever you decide! 

    Sunflowergirl x 

  • Offline in reply to Sunflowergirl123

    Hello keeshasw,

    I was sorry to hear you story .I didn’t have children til I was in my mid thirties and found the right partner ,I can understand your dilemma . Just did a little research ,apparently egg freezing is only available on NHS if it’s because of a cancer diagnosis .You need to contact the Integrated Care System . Try them now and let me know how it goes ,I would have expected your gynaecology consultant to have offered  this at your age . All the best xxx

  • Offline in reply to rumpelstiltskin

    Apparently your GP can sort this out too xx

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    Hello, i hope you’re as well as can be and I’m sorry to hear what you’ve gone through. I’ve recently gone through finding out I had a 30x18cm cyst, the size of a rugby ball and it contained a hard mass inside the cyst. I had open surgery to remove the cyst and I had my right ovary and fallopian tube removed. I also had a omental biopsy done too. I’ve been told 3 weeks for results, I had the operation 16 days ago and I’ve got a phone call on Monday with the results. I’m petrified, I’m 26 and have one little boy, I couldn’t believe it when I read your story. My tumour markers came back clear from a blood test, but I know these don’t mean much until the biopsy results. 

    Thank you for taking the time to read. X 

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