Thick walled septated cyst...continued

[Nickaz]

So to follow up on my thick walled septated cyst. I had the results of my mri and my consultant said good news the cyst did not show up on mri. As my CA125 was elevated to 67 and they couldn’t do a biopsy of my uterus due to scarring from my uterine ablation he recommended I go ahead with full hysterectomy .

Really confused as I’m in pain in my right hip and can’t walk properly and so feel something is going on. I am hoping the hysterectomy will cure everything but would welcome any opinions if anyone has heard of anything like this.

[ShropshireJo]

I don’t have any experience so all I can do is send you my very best wishes and offer a very general,perspective. It is much easier if you no longer need your womb etc but you look very young from your photo. I had a full hysterectomy post menopause so a much easier decision. Could you get a second opinion? May be check out the best regional centre for surgery of this kind? All the very best. Jo 🌼🌺🌻🌹🌸

[Roobarb1]

Hi nickaz, can they not just remove the cyst & ovary? Originally I had an investigative laparoscopy and they removed cyst & ovary then, it’s a smaller op. My cyst did unfortunately end up being cancerous so I am booked in for full surgery on April the 18th, but they only found that up after biopsy - it sounds like they aren’t sure about yours (in my experience as soon as they suspected cancer they used that word, they didn’t pussy foot around being tactful!).

It might be worth asking? Best of luck with your treatment ahead xxx

[Nickaz in reply to Roobarb1]

I think with my age and the fact that my uterus is so scarred they are thinking best remove it all. I’m not confident they know what’s wrong to be honest. 😩

I think they’ve ruled cancer out which is a huge relief.

Still fingers crossed for your op 🤞

[lynn6156]

Hi,

Have only just been diagnosed with OvCa and still at the flabbergasted stage. I'm just sending a message because I've had surgery and the actual surgery was fine, even though it was a lot more than I expected.

I had an ovarian cyst show up on u/sound with no symptoms and a CA125 of 85. I was pretty sure it was nothing - i've had cysts before but....

Apparently the thick septation walls in conjunction with some solid areas (which you may not have) is a warning sign. I went in for laparoscopic removal of cyst/ovaries/hysterectomy because they said you may as well get rid of the uterus at your age (56) . Have been told it was cancer (they did a frozen section in the op) but have to have further tests /information and 'probably' chemo. I just wanted to say the actual surgery was no big deal . Mine turned into a lapartomy with other stuff removed because of a different illness which complicated everything - but even so I was home in days and pottering slowly. Fingers crossed for you.

[Nickaz in reply to lynn6156]

Wow, that must have been a huge shock.

I'll bear that in mind and just hope mine is benign. I did have solid areas in it but they can't see it on MRI now?? This is all very strange and along with the bleeding and for my peace of mind, its coming out. Thank you for reassuring me about the surgery as I'm not looking forward to it but will treat it as a necessary evil.

I wish you a speedy recovery and hope chemo isn't necessary.

I have spoken to some truly awesome people on here and want to weep at the unnecessary suffering people have been quietly going through. You are awesome remember that xxx

[VeeNess5 in reply to lynn6156]

I hope you’re doing good! I just found out I have the same type of cyst you did. I’m concerned it’s OvCa. I go see my Dr next week. Well I’m really hoping you’re doing better now! 🙏💞☀️

[lynn6156 in reply to VeeNess5]

Hi,I'm sorry you have to go through this - but I'm glad you found this forum as everyone helped me a lot in the early days. I'm doing ok thanks - still clear at the 3 year stage so fingers crossed. I think the waiting is the worst part, once you know what is going on it's a bit easier to find a way through it.

Lynn x

[VeeNess5 in reply to lynn6156]

Thank you! Yes the waiting is horrible right now. I feel so anxious and trying not to worry but it seems to all point to OvCa. I am so glad you are still clear after 3 years! 🙌 I hope and pray it stays that way for you. 💞

[Sunfleury-UK]

Hi Nickaz- So sorry that you've have cause to join the forum. I would really encourage you to ring the support line at Ovacome on 0800 008 7054. Its free if you're in the UK and if you are elsewhere then do message Anna at OvacomeSupport as I know she has a range of other contact options.

For women who have Ovarian cancer one of the key indicators of outcomes is that surgery is done by a Gyny-Oncologist. I'm not suggesting that you have ovarian cancer however conclusive diagnosis is done/confirmed by histology post-op... there will be some women who are diagnosed after surgery when scans etc beforehand suggested nothing was untoward.

Ovacome have some resources on their website (as do Target Ovarian CAncer) which includes questions to ask your consultant before surgery.

If you use the search box top right, you'll also find some fantastic previous threads with tips for surgery... definitely worth a look! Best wishes Sx

[Nickaz in reply to Sunfleury-UK]

Thank you so much. I will take your advice as I'm very wobbly at the moment. Luckily there are amazing people that will help you when you are down and they all seem to be on this site.

Thank you xxx

[OvacomeSupport Partner My Ovacome Team in reply to Nickaz]

Hello Nickaz

Just to support what Sunfleury-UK has suggested, please do give me a ring if there's anything you want to discuss. I'm here Monday-Friday 10am-5pm or you can private message me through this forum too. I'm away from the office next week on Monday, but otherwise I'm around as usual, please do get in touch if you need someone to speak to.

Best wishes

Anna

Ovacome Support Service Manager

[VeeNess5]

How are you doing now? Hope all is good! ☀️💕