Endometrial cancer, fertility issues

Hi Kirsty,

Due to problems in her 20's my daughter only has one ovary. She gave birth to a perfectly healthy baby at the age of 40. Don't let age put you off as long as you are healthy. I'll add she had a much quicker and easier birth than I had with her age 29!!!xx

Thanks for the encouraging words. Sadly my uterus will have to come out in the next month regardless, so I won't be able to carry a child. So it's really about whether I can harvest any eggs and hope for surrogacy. I'm glad it worked out for your daughter though. x

Ah Sorry. I hadn't thought this through. I still don't see why you shouldn't harvest eggs. xxx

Hi Kirsty9509. I had a total hysterectomy with bilateral salpingectomy 5 weeks ago (so ovaries retained - tubes removed). My ovaries were retained for the reason that it was deemed important for me at my age (42) to be able to produce my own hormones if I could. Removal for no reason comes with its own implications. I can't help you with your decisions based on fertility. I have no children but I'm fine with that.

I ended up having Endometrial Grade 1a and had a meeting with Oncologist just a few days ago. It has been confirmed to me that as the cancer was contained in the womb and no cells present in the tubes there is little to no risk of the cancer spreading to ovaries now my womb is out but I am having a CT scan tomorrow to triple check I am safe and will be able to have ovaries screened via ultrasound on an annual basis. I believe 1b means your cancer is still contained in the womb but further into the muscle. Of course, having a full histology would prove that.

I do not know how Lynch syndrome is diagnosed and how quickly but could you push for this to be tested before you decide on your surgery and risk? 

I have been told all along that if I needed a second surgery to remove ovaries at a later date this wouldn't be a problem and not as major- day surgery and 2 week recovery. I think there are options for you not to have to deal with it all in one go, give you a chance to think about what you want and what's right for you rather than whip it all out for the sake of it. 

Thank you so much for sharing your story. You are correct on the 1B description. I think it’s the lynch diagnosis which is why they are suggesting the removal of the ovaries. Lynch syndrome requires genetic testing, so takes months apparently. So I won’t have that piece of the jigsaw available. 
How long was your recovery from your surgery? I know we’re all different, and it’ll be what it’ll be, but I have a physical job and I’m trying to figure out when I might be able to get back. 

Just to say my other daughter had breast cancer at age 35. They advised her to have her ovaries out to stop anything else happening. She couldn't face it straight after her breast op and chemo and radiotherapy, but had them out a couple of years later. She had keyhole surgery and recovered quickly.

I have a very physical job also and not been able to go back yet. When I told the surgeons that I had cancelled all my work until August (I'm self employed - no sick pay) they said I could have gone back earlier. Even when I told them I have to carry up to 6kg, run and squat as part of my job (wedding photographer) they said "no problem - you're young and fit". But I knew they would have no idea how much stamina my work requires and I wouldn't be able to just cancel my work on the spur of the moment. It's been a very difficult decision based on gut instinct.

I had a very bad first couple of weeks and wasn't able to walk really due to blood pressure issues so think I am a bit behind in my recovery and glad I took the decision I did. 

The very fact I had to take painkillers after light weeding and bending in the garden yesterday and picking up some light buckets makes me think I'm not ready and the idea of doing a 13hr day carrying heavy kit all day would be ludicrous. I was very fit and strong before and currently would struggle to do a basic Pilates class as I just don't have the core strength.

They say 4-6 weeks for laparoscopic but I reckon for physically demanding jobs it's the longer end of that.

Hi Kirsty9509

I too have been diagnosed with phase 1 Stage 1b endometrial cancer and will be having my surgery tomorrow which will be full hysterectomy including tubes, ovaries and cervix.....my surgeon has already said he will be removing lymph nodes as well as although the MRI was reassuring, about 1 in 10 cases the cancer may be in the nodes. As far as I'm aware I've not been told I have Lynch syndrome.

I haven't had children either however I went through the menopause at around 47 so I know my fertility window has passed but understand this is a difficult decision for you to consider as not only do you have to think about your fertility options you also have the cancer diagnosis to deal with.  Having previously had failed IVF attempts in my early 30's I know it is not easy to accept that having children may not be part of your life.

It would seem easier if you were able to freeze your eggs prior to surgery but totally understand you don't want to wait any longer than necessary to get treated....It's been 2 months since my diagnosis and that feels too long.  

I can only suggest whether your CNS may be able to offer any additional support or advice on what may be the best way forward for you. 

Good luck in whatever you decide.