Waiting for surgery

[Newstart22]

Hi ladies. I had my 1st gynae oncology outpatient appointment this week & they have said I will be sent an appointment for surgery in 4-6 weeks. My Ca125 was c. 3000 & I have masses on both ovaries at a combined mass of 20cm & a dodgy looking lymph node. Interested to know what your waiting times were please? This feels so long to me & can’t help but think of it growing & spreading while I’m waiting 😔

[Missionspace]

Hi, New Start, I'm so sorry to hear you have had this news. From initially being told the CT scan was dodgy to the op took about 7 weeks in my case.

Your feelings are totally understandable. I was the same. I tried to take the view point that at least the situation was now recognised whereas prior to diagnosis things were moving on with no improvement on the horizon. I was personally, secretly, extremely scared of the op and ultimately had absolutely no need to be.

It's often hard but as I generally feel well in myself, on days when I don't need to be focused on the illness, I try to keep my mind elsewhere. That way, most days belong to me as much as possible and not to the problem. X

[Saintgermain]

HelloI’m in the states so I’m not familiar with the waiting times in the UK but can so relate with what your going thru I had a debulking hysterectomy both my ovaries had a combined mass of 19 cm before my surgery my CA125 was 4300 I’m 5 months since my last treatment no evidence of disease my CA125 is hovering around 6 as Missionspace mentioned I felt the same way my fear of surgery much greater than the surgery itself . This is a wonderful forum it really helps to connect with Ladies that are on the same journey. Please keep us posted sending prayers your way for an earlier appointment

[Realistic]

This seems to be the normal wait they have what they call MDT meetings about you. Where all the experts put there heads together and discuss the best way to deal with you and your case. So it takes time. I was extremely worried but it all works out so try not to worryMy CA125 was very high like yours and l have other health complications. De bulking operation is a big operation although l did get over that quickly lm doing well had de bulking in 2017 cancerous nodule removed in 2019 then Carbo/Taxol and have been NED ever since so lm doing well at first l was totally devastated but know l realise l can live with this and treatments are definitely getting better all the time. Lots of brave Ladies on here to give you hope and inspiration we have ups

and downs sometimes but my lifes normal and l live it to the full. Sending you love ❤ SheilaFxxx

[Tillymint61]

Hi there. Sorry to hear about your diagnosis and wish you well for all outcomes. As for the waiting times it may be worth making it known that (If you can) you can take a cancellation appointment. You have nothing to lose by doing this. Every day waiting is a day too long once diagnosed. If they mean 4-6 weeks until op and not for discussion, you will get appointment for pre med before then I would imagine. Keep busy, mix enjoyable stuff with necessary stuff that you know you won't be able to do post op.

Take care. Xx

[Jannibags]

Hi! So sorry to hear about your situation and totally get how you are feeling. The waiting between appointments feels like forever at the time and you just want them to operate as soon as you know you have a problem.! To be fair though, whilst it felt like it was taking ages, I was actually having surgery only 8 weeks after I saw my GP! She referred me for bloods and scans and to the hospital gynae oncology department without delay. Speaking from my own experience, the wait between hospital appointments and scans was absolutely the worst part of it, I felt so much better after the surgery because the horrid alien thing was out of me! Wishing you the very best of luck and try and keep your chin up! You can do this!❤

[SopSinger]

4-6 weeks is not unreasonable. I only waited 3 weeks, but that was because I was admitted as an emergency after collapsing in acute pain on a Sunday afternoon (don't try this at home, ladies!). Even then, it was recommended that I wait for the gynae surgeon with oncology experience to return from his holiday, rather than having emergency surgery. I had "something" (never identified) on my liver and was thought to be stage 4, but it turned out the cancer was contained and I was stage Ic. That was 16 years ago and I've never had a recurrence. The waiting time is the worst - we always recommend distraction therapy, so find nice things to do with the people you love most.

[SarahBa in reply to SopSinger]

Hi SopSinger, so pleased for you that you have never had a recurrence. That's great news and I hope that continues for you.

I hope you don't mind me asking but what type of ovarian cancer is it that you were identified with?

[SopSinger in reply to SarahBa]

Hi Sarah, I had mixed endometrioid and clear cell stage Ic ovarian cancer with a side of endometrial cancer, stage Ia.

[A1r1t]

Hi newstart22. The time you've stated is about right. Try not to worry too much, easier said than done I know. Once you have had the operation just be kind to yourself and restas much as possible. Accept any help you can and you will soon feel better. Hope everything goes well for you, 🤗 ♥.

[Loorunner]

I'm so sorry to hear about your diagnosis. I had chemo before surgery but had a similar wait time before the chemo started. Like you I felt very nervous as it felt like so long but I think it's pretty normal. I hope you can get to enjoy some things you like to do over the next few weeks, and I'd you can get in good shape for the op. Wishing you the very best

[Newstart22]

Thanks ladies for your reassurance & best wishes. Trying to keep myself occupied as much as possible. Hope you’re all keeping well. It is a huge help having access to this site.

[TMiPP]

Hi New Start I am sorry you have joined us in this nightmare. Missionspace is quite right. Try to focus on the positives - you are being treated and being in the Uk it won’t bankrupt you. I really do know that it is hard to wait but you can at least get the excersises in to strengthen you before the op. It helped me to focus on those - gradually getting fitter (ironic eh?) whilst I waited. I had 3 rounds of chemo then the op which was I think 4 weeks on.Good luck with the operation and let us know how you are doing. Terri x

[dolphinsurfer]

Hi. Sorry to hear about the diagnosis. What I did was making sure I was in the “short notice cancellation list” that means if they have to cancel someone’s operation I was available to go to hospital at short notice.Thanks to this, and it was all after the MDT….. I got a call 10 days later to go and have the preop assessment and COVID test and two days later I went in

All the best Xxx

[Fluffyjumper]

Easier said than done but try not to worry. You’ll feel a lot better after your operation. Spend the next couple of weeks being as active and fit as you can, eat well, try to relax. Plan for after your operation, organising food, comfortable clothing, things to occupy your time, any help you may need. My waiting time was around 4 weeks. It went remarkably quickly. Any operation is daunting. One of my friends had their operation in the Newcastle/Gateshead area and had very good care.