How long did you wait for surgery, after diagnosis?

I've been told it's a tumour and most likely cancer on my left ovary. I'm going frantic waiting for appointments etc. How long do you wait on the NHS for surgery?

[ANDE-Wales-UK]

Hi,

It is the worst time waiting, I had surgery on NHS just over 4 weeks after scan results, they have to treat you within a certain time if cancer is suspected, so they should give you a date sooner rather than later, have you been given a clinical nurse specialist to contact, they may be able to help,

Try not to worry (easier said than done I know) if you are in the system they should act quickly,

Take care

Andrea x x

[wendydee]

I waited for about a month, from my first ultrasound scan, to my surgery. That was 11yrs ago though. I think there's a Factsheet on the Ovacome website ovacome.org.uk Look under resources, on the left hand side. There's also details of email and phone support and advice. Have you had a scan and/or a CA125 blood test yet? It's unusual, in my experience, to be told it's OC until after the histology analysis after the op. They're probably exploring possibilities at this stage. I know its a worry but it's not confirmed yet. There is also info on the NHS Choices website, I think, which I believe gives info on stages to diagnosis. Others on here are more informed than I on the NHS site.

All the best

Love Wendy xx

[Hidden]

I was very lucky in that it took just 10 days from first scan to surgery. I think it went through quickly in part because it was immediately before Xmas, and partly because they took note of the fact that I was able to have people to stay to look after me over the Xmas period whereas normally I live alone.

You have my every sympathy; even 10 days seemed way too long; waiting is just awfl and I'd second the suggestion of ringing the hospital to see if anyone can give you an idea of how long you'll have to wait.

[Hidden]

From diagnosis to surgery was 10 days for me too.

Isadora.

[janette47]

Hi Katlan, I had it in both ovaries left was 13cm, right was 11cm and waited 6 weeks for op, I honestly feel for you as the not knowing and waiting really is horrible, your mind goes into overdrive. I can only say that for you this must feel you want to rush to that hospital, find an empty operating room, lie on the table and scream 'get it out now!' Just try and remember- oncologist's and surgeons see this on a routine basis, they know what length of time they have to operate in, what is likely to be best for you and will be discussing all the options. And you now have all these lovely ladies on here to help you mentally get through this and as Wendy suggest's the Ovacome & target Ovarian cancer have loads of trained professionals who can speak to you personally. Be strong and have faith chic xxxxxx

[Hidden]

Thanks so very much for all the replies. I've had a negative CA125 test, which doesn't mean much, apparently. The mass was found on an ultrasound scan. I've had an MRI scan of my pelvis which showed a tumour of 7.5cm on my left ovary, but nothing anywhere else, as far as they could see. I'm seeing the consultant on Wednesday. I'm in shock. I don't know what to ask or what will happen, but my GP said they will do a hysterectomy. And, yes, I want it done now, if not sooner. The waiting is horrendous. I haven't got a nurse, should I have one? The GP told me it looks like ovarian cancer, from the MRI scan. Thanks again you lovely and very brave ladies xxx

[Hidden]

They may want to do another scan, depending on what procedure you underwent when you had your scan.

They will almost certainly want to discuss your case at the hospital in the "MDT meeting" - this is when the relevant specialists get together, look at all the facts and findings so far, and decide on the best course of action. They can do this without those particular consultants actually seeing you. The meeting would involve, for example, the gynaecologists who specialise in cancer, those who specialise in keyhole surgery for benign lesions, and the radiologists who interpret the scans; maybe other specialists will be asked for an opinion if you have other problems such as diabetes or heart problems that need to be taken into account.

The idea is that whilst this might delay the process slightly, it gets the surgery done by the most appropriate person in the most appropriate way. And that's better than having (for example) keyhole surgery then having to go back in for a full hysterectomy.

The surgery required (hysterectomy, ovaries out etc) will depend on what the scan looks like and also on other factors like your age and whether you want the chance of pregnancy in the future.

As you say, the blood test doesn't automatically mean it's OK but it's certainly a lot better than bad news! It's excellent news though if there's nothing else out of the ordinary on the scan.

The only way to be certain about what a largish cyst actually is, is to take it out; but there are features on a scan that make it look more or less likely to be cancerous. That's still "more or less likely" and not a guarantee.

I would have taken the bloody thing out of my own belly myself in the 10 days of waiting if it had been possible! I think we all know how you feel!

I hope you get some answers on Weds. I felt enormously better as soon as I knew a plan and timescale was in place.

[Hidden]

ps. Write down every possible question that comes into your head between now and Weds and take the list with you so that you remember what you want to ask, and don't be afraid to ask!

[Hidden]

Thanks so much opalclouds for your great post. I'm in so much shock at the moment all I can think of asking on Wednesday, is when will you take the bloody thing out?

[janette47]

Ps - have got a relative/friend who's good at storing information/asking questions that can go with you? my partner went - thank god, cos when i saw consultant i just went blank but he asked loads xxx

[Hidden]

My husband is coming with me, he's pretty good. How on earth do you deal with the waiting?

[thesilent1]

hi Katlan. the other ladies have given you great advice. I had to wait just over 4 weeks for surgery following MRI scan and raised CA125 levels. I made my mantra "one day at a time" and found this helped me to cope. good luck for tomorrow. Ann

[Hidden in reply to thesilent1]

Thanks for your reply and good luck wishes xx

[Tinams]

Ok so i had my surgery oct 26th and was told after surgery looks.benign but also still sent to pathology so im confused how do they know from first look?...impossible to see cancer that's the point.of biopsy correct ?

[Sunfleury-UK in reply to Tinams]

Hi Tinams, this post is three years old and so it might be better to write a new question or blog as you'll I'm sure receive replies.

The nature of the forum is that many who have posted will no longer be members- some will have moved on having put their diagnosis and treatment behind them, sadly others, will no longer be with us.

Best wishes, Sx

[Tinams in reply to Sunfleury-UK]

Ty i started a new one yes sadly i agree..god be with us all