A few questions

[Faith27]

Hello ladies!

I'm new to this forum.

My sister recently had a scan which picked up that she has a 6cm cyst with a septum which looks fairly unusual on her ovary.

During the scan, the gynaecologist was unable to find the other ovary which may have been because of her tilted/enlarged womb or the fact it was twisted.

The gynaecologists arranged a blood test VERY quickly which included a CA125 test. We had the news that this produced a raised result. While I know this test isn't a conclusive way to test for cancer alone and the result could be because of a multitude of other reasons (including the cyst) it's obviously a concern that the dreaded C word has been mentioned on a few occasions.

It's also more of a concern that her blood test results were only received on Monday and by Wednesday (today) they had called her into the hospital to have a pre op discussion and further tests.

Bearing in mind originally the doctor suggested a long wait for surgery this quick approach has come as a bit of a shock!

The reason I'm posting this today is because while my sister has a 3 year old. They are going to carry out a laparoscopic oophectomy (excuse my incorrect terminology!) - basically they are to remove that ovary with the cyst.

With this in mind, and without confirmation that the other ovary is fine, I'm just wondering what her hopes are for conception in the future? The advice from the Dr has been that if the surgery is too big to carry out under a laparoscopy, then they will do a incision on her stomach and carry out the procedure that way. If the other ovary isn't salvageable, they will have to take that one away too.

I know these days there are so many options for people trying to conceive and trust me when I say that a future baby isn't on her radar at the present time. That being said, she has a new partner and I wouldn't want her to miss out on any future hopes of having a larger family - I'm already on a 2 year trying to conceive journey and when you really want something, it's difficult to comprehend not being able to have it!

So expanding on my question ..

- if it is something she may want to look into, should she be talking to the Dr about whether she can freeze any of her eggs if they are at an acceptable level?

- I assume once they are inside during the operation, they wouldn't be able to collect any eggs that way so it would have to be via normal egg retrieval processes prior to the operation.

- any ideas how long a potentially urgent classed case takes to get an operation date scheduled once a pre op has taken place?

Thanks for reading I'd you have got this far! Please any advice is hugely appreciated.

Thanks

Xxxx

[Lindaura]

Dear Faith,

Goodness those are some deep and perplexing questions.

Let’s go with one at a time.

It would be good to know what exactly your suster’s CA-125 is.

But in my opinion, this can be very indicative of Ovarian Cancer, especially if the level is quite high.

Whisking her into surgery is a good indication that her doctors are concerned and they are taking it very seriously.

Knowing her age will also help, as egg survival is much improved if she is under 30.

Harvesting eggs is not simple and usually takes a lot of time and preparation, time your sister evidently does not have.

It is a blessing that she does have one child.

My daughter had to have a risk reduction surgery and she was already past premium egg harvesting days. We were heart broken.

Meanwhile, your sister’s life and future health is what is important now.

See what the next steps will be. They will most likely test any tissue they remove, so you will get some exact info in future or possibly sooner if they can see things during her surgery.

The Laparoscopy might turn into a Laparotomy, which means a longer scar across her bikini line and a longer recovery period.

She will need your assistance and will be very grateful you are there for her.

Good luck with all this stressful news,

Best wishes,

Laura

[Faith27 in reply to Lindaura]

Hi Laura!

Yes one thing at a time.. reading back over what I wrote yesterday.. it was a bit like verbal diarrhoea! Apologies for this. Obviously I'm never going to bombard her with this, I'm just wanting to find out information incase it pops up in conversation because we are very close.

She joked about having to go through menopause at the same time as mum yesterday when I saw her so gathered something may have been mentioned in the appointment.

My sister is aged 29. Her CA125 result was 50 something? I'm now aware that there are results that can be much higher from reading some posts here and research.

I'm sorry to read that you have been through similar with your daughter and that you were understandably heartbroken at the fact they weren't able to harvest any of her eggs - how are you all doing now? That must have (and still has to be) hard to come to terms with.

We're very lucky to have her 3 year old in that sense.

They mentioned that the laparoscopy may turn into a laparotomy- you're right.

I completely agree that her health and future is far more important at the moment and just want to be prepared if she shares any further worries with me as I don't want to explore suggestions with her if there is no possible way to put things in place. I also don't want her to be unprepared for this conversation if it gets mentioned in any future appointments.

Thank you for coming back to me and hopefully you have some additional info you're happy to share off the back of this comment 😊 xx

[Lindaura in reply to Faith27]

Oh no,

She is SO young!

Doubly heart breaking.

But, if they can safely delay operating, they could possibly harvest some good eggs.

Obviously, this will be costly, so that is another consideration.

A score of 50 in a CA-125 test can be indicative; or not. She would need another test in 3 weeks time and if it doubles, she is in trouble.

She might be fine and this could all be moot, but do discuss the fertility issue with her.

She will need HRT to protect her bones, but only until she reaches the age when she would naturally have gone through menapause.

It’s all terribly chilling.

We here have come to terms with everything. Daughter and I are both BRCA1 positive, which means we harbour a genetic mutation that carries a high risk of breast and reproductive cancers.

I wish everyone could be tested for it, but your sister is so young, she probably wouldn’t have been tested anyway.

Hope everything turns out to be all right for both of you.

Best wishes,

Laura

[Saleh123]

Very good of the doctors to react really fast on her. If it is actually the dreaded C word with raised CA 125 and 6cm cyst then having a next child is the least of her worries. I assume your sister is still young and even with full laparotomy with ovaries removed the chances of recovery is very good. Remember she has a 3 yr old to look after.She might need all your support that she can get . I wish both of you well.

[Faith27 in reply to Saleh123]

Thank you, yes I agree it's not something she has openly shared about however she has mentioned that it would be nice in the future so I just want to be prepared and armed with suitable info IF and when she broaches the topic.

She joked yesterday about the thought of early menopause at the same time as our mum so I figured I'd like to be prepared if the convo arises to make any suggestions.

I obviously don't want to cause further worry so I'm not going to be mentioning anything. I just want to know the options incase she becomes concerned - her medical team appear to be running through things very quickly and she is concerned that the scan didn't show the other ovary so naturally you may wonder about the future - I know I would (regardless of whether I was ready or wanted children at that moment in time)

Thanks for your well wishes xx

[Cropcrop]

Hi Faith and welcome to our lovely gang.

The fact your sisters doctors have moved so quickly is really really reassuring, her CA125 test is one part of the bigger process in the diagnosis process albeit a really useful and important test. They will know so much more once they get ‘in there’ and will proceed in the best manner to ensure your sister has the best treatment possible with the best possible outcome. Of course, they will take her age into account and if possible they will save her other ovary, if at all possible, both to allow possible future pregnancies and also to head off an early menopause.

Her long term health is the most important factor and whilst we all understand she may want another child I think it is more important that she takes all the necessary steps to be around for many years to come for her 3 year old.

I hope her surgery is minimal and she has good results.

It is so nice that you care so much for your sister and I’m sure she appreciates all the help, support and love you give her.

I hope you are soon able to conceive, I would say to stop ‘trying’ it really becomes a bit obsessive and takes over your life, I stopped ‘trying’ after two and a half years for a second child and he popped along in his own good time. If everything is in full working order it will happen in time, just don’t obsess, that way lies insanity.

Love to you all, let us know how you all get on ❤️Xx Jane

[Faith27 in reply to Cropcrop]

Hi Jane

What a lovely message you have sent - thank you! You're absolutely right that her health and future is far more important right now than anything else.

Your advice about my own situation is also lovely, so thank you.

I'm certainly not going to be broaching the future fertility subject with her (ofcourse!) Which is why I have come here to gather information.

She has mentioned that she is concerned her one ovary is being removed, and that the other one couldn't be seen on the scan so naturally I gathered that I wouldn't have been prepared for ANY conversation if that had opened up in that moment. I know they will try their very best to save what they can but I don't want her to have any regrets about not asking the right questions or looking further into things in advance of the surgery. We're very very close so hopefully I can do my best to support her in whatever way she needs. It's the waiting that is the worse! My dad was so upset yesterday and we don't even know anything but naturally emotions are heightened while waiting for an operation date. He's such a softie.

She's got a big family around her and I'm sure she will be OK xx