Hi just had a large borderline ovarian cyst removed and now going to have a hysterectomy. I'm so frightened of the unknown.

[Daisyjackben]

[wendydee]

Hi! It's a worrying time, I know. When you have a moment, have a look at my profile. Suffice to say, it's not as bad as you're fearing at the moment, you'll get through it well and 'borderline' is a diagnosis with a good outlook. My diagnosis and surgery for borderline OC was nearly 11 years ago now, I am still well and happy and healthy. Let us know how you get on. Good luck

Love Wendy xx

[Daisyjackben in reply to wendydee]

Thankyou for your reassurance .I'm on my own just now and reading too much information on line which can be very scary.

[wendydee in reply to Daisyjackben]

Have you got a date for your surgery yet? Try to stay off the online stuff! Easier said than done, I know, but there is a lot of idle chat and misinformation. Annie is right, you're bound to be worried but I m sure you're in a good hospital with. Good team. Once you get in there, you'll probably feel strangely comforted. I can honestly say, my op and recovery were really well supported and pain free. Al the best, you're in a good support site here!

Love W xx

[Whippit]

Hey Daisyjackben, you're amongst friends here as most of us have had surgery. I think any one who has will tell you that surgery isn't scary at all but that most of us were scared at least a little bit before we actually had it.

Have you been allocated a Clinical Specialist Nurse or a Key Worker? These are lovely people who have time to sit down and talk through any worries you have. They are absolutely brilliant and know everything there is to know in your hospital so the hysterectomy won't be in the realms of 'the unknown' any more.

Similarly we're here too to offer our ideas and give you support though obviously all based on personal experience. I was extremely well-treated and actually enjoyed my stay in hospital as strange as that might seem. The nurses were wonderful and very supportive. The ladies on my ward were good company, and I found the doctors fantastic as well. I discovered I knew my surgeon from my sailing club. I remember thinking how lucky I was but just as soon as you get this process under way you'll get to know your team and I promise you they'll be very caring of you.

Keep posting and we'll do our best to cheer you along.

with love xx Annie

[Daisyjackben in reply to Whippit]

Thankyou for your reply. Im so worried about the outcome .Although information is available about the cyst that was removed I feel so frightened and don't want to worry my family constantly.

[Whippit in reply to Daisyjackben]

Oh dear, is it the thought of the operation that frightens you or perhaps how you will feel after a hysterectomy which brings about a menopause? I don't think you should put up with being frightened and not telling anyone. Is there any way you can say the things that most worry you. I'm sure there are ladies on this site who have had the same thoughts and can offer some reassurance.

Thinking of you. xxxx Annie

[Daisyjackben in reply to Whippit]

I have been through the menopause 2 years ago so I don't have those concerns. I am just looking through all the information about mucinous borderline type and only fearing negative information. I can't always say what I fear to my lovely close family and am grateful to do it this way . Thanks. June.

[Whippit in reply to Daisyjackben]

Dear June

I know just how you feel. I can't talk to my loved ones about how I really feel because I don't want to upset them more than is happening already. It's a bit like 'the show must go on'. One of my daughters wants to talk about illness, death and loss but I can't face it right now. I feel well and want to enjoy that to the full.

It also took me nearly two years to tell my husband how I felt about losing my hair. I wish I'd done it sooner as his response was just perfect. He said it doesn't matter to him and he loves me for who I am and not the gift wrapping. It just goes to show doesn't it that we can bottle things up and then when they are said they're really much less important than we'd built them up to be.

Menopause symptoms do return I'm afraid. Your situation there mirrors mine so it's a step backwards to have hot flushes again and there are also some private things too about menopause that I don't feel I could share on a pretty open forum but I'd be happy to chat via PM or a phone call if that helps.

The great thing is that you can rant on this site. I for one really value it as my cancerspace and as far as I know my daughters don't read what I put on here. My husband doesn't either. I find it so helpful to chat to women who are in my shoes because they understand almost without saying just how it feels. I wish there was a space my daughters felt they could go without treading on my toes.

But June, don't suffer in silence. Let's have a chat and a hug. I'm sure you will feel better for it.

xxx love Annie

[Daisyjackben in reply to Whippit]

Hi Annie, Thankyou for being there today.I was having a wobble and needed to speak to someone.I feel calmer this evening and having more logical thoughts. Thankyou for listening xx

[Whippit in reply to Daisyjackben]

love xxx A

[Aurelie]

Hi June,

Like you, I was terrified of the unknown. I'd never had an op before, other than a tonsilectomy when I was two, and the thought of major surgery filled me with horror, but it turned out that I had no need to be so frightened. When I woke up after the op I was pain free, had no sickness and felt quite cheerful, and nothing was nearly as bad as I'd feared, so please take heart from the experience of this devout practising coward!

With regard to the cyst - I believe the prognosis for borderline tumours is excellent, so hopefully, once you've recovered from the op, life will soon return to normal - just remember to take it easy for a few weeks and you should be fine.

Jill xx

[Daisyjackben in reply to Aurelie]

Hi Jill, Thankyou for taking the time to reply. It feels better knowing my feelings and anxieties are understood. Hope you are fully recovered now.June xx

[Hidden]

Hi June

That fear of the unknown is a huge stressor, but the good thing is that things do, as you progress along the path, become clear. We are all left with a bit of the unknown ahead - this is a tricky disease - but finding the positives will be possible, I promise. You were borderline, that's really good (relatively - you know what I mean, I hope!). You won't have the full on surgical menopause though it sounds as if you may get a bit of a return, it should be handle able. You don't mention chemo in the plan, possibly because of the early stage, but even that is handle able and becomes clear, if it proves needed.

This site and the women on it are marvellously supportive. Please don't be misled by the odd spat, because we are all united in our hatred of OC and the lives it impacts, and essentially just want to be there for each other. Feel free to rant at things and share the fears. See the privacy setting on each new post, and its always good to set it to be private to forum members - that keeps the whole string off the search engines. You can do that to your existing original one if you want to, as well.

One thing I would say is don't exclude the family. Yes, they won't quite understand but they will support you. I was amazed at the support and love I got from my slightly strange extended family, even though a few over reacted (and they don't get the implications...)

You aren't alone on here as having a mucinous variant either - there are several, though its a rare form. So do reach out when they make themselves known.

Stress is the enemy, amongst other things. Stay OFF the Statistics pages - they are so misleading being out of date, by definition, that they often do more harm than good. You do need to accept at a deep level that of course this isn't good BUT that survival is a lot more than possible, especially for you with borderline! Treatment is there, if needed, and slowly improving, and you are never alone!

Love

Sue xxx

[Hidden]

I had a TAH in March because I had a mucinous borderline tumour removed. I was terrified but never spoke to my family or friends because I wanted to spare their feelings. I have made a good physical recovery but am wobbling mentally. I know I've been very lucky and the help and support from the ladies here has been amazing. Lots of love to you, Jacqui xxxx

[Hidden]

Hi June

Sorry to hear you're feeling so worried about things. I too was initially diagnosed with a mucinous borderline tumour and spent a long time looking for information on the internet. I found 2 really useful leaflets. One was by ovacome and the other is by ' greater Manchester and Cheshire NHS . They provide really clear information and the prognosis for borderline tumours is very good. Was yours stage 1?

As for the operation I can totally understand how you are feeling. I'm due to go back in next month for a hysterectomy but having already had a laparotomy in August and being pleasantly surprised how pain free I was, am not feeling too scared( well at the moment anyway!) The staff at the hospital were fantastic. I can understand how it can be difficult to talk to your family so this place is great as you can voice your concerns and worries and there are a fab bunch of people who will come along and support you.

Take care and if you have any more questions or worries just ask.

Sue x

[willow123]

Hi. I had a mucinous borderline tumour too. I am now waiting to get a date for my remaining ovary to be removed. I also looked at the internet, big mistake!!! The best information is definately from macmillan and cancer research sites. It is very scary at times. Sometimes I dont think about what I had and what it could have been , but then other times I feel so down and depressed. Hope all goes well for you.

Louise xxx

[Hidden in reply to willow123]

Yes Louise it can be very frightening as you say the internet all though a good tool cant sometimes be scary. Some of the ladies ring Ruth Paine at Ovacome 0207 2996654 She may have a lot of advice to give you.

Hope this helps and you, are you are not alone we all have our ups and downs.

Regards Barbara. .

[Tillytomteeps]

Me too with the borderline mucinous cyst, which was huge. It was pseudomyoxma peritonei. I had a hysterectomy, appendix removed and ementum. I don't know what the situation is re just having a mucous cyst by itself. Mine originated in my appendix. Most of the time I am mentally fine. I can't say why that is, but I know there is a good chance that things will be fine for a long time. I was so afraid but now I will follow each stage and make sure I do everything I can to arrange my life in the best way. I have to go to Basingstoke for follow up after a colonscopy to check there is nothing in my large intestine. From what I have read about it, it seems that it is like an infection as much as it is a cancer. I feel calm and happy for the vast majority of the time. I am sure you will find your level because I have.

[JacJac]

Hi, The thought of my BIG op (My first ever) last November truly frightened me. However I didnt tell anyone (Dont think I knew about this site then) I kept being very blase on the surface and it was not until my family had kissed me bye bye and waved me off. (With tears in their eyes!) and I had been pushed through those double doors to go down to theatre., Then I lost it and started shaking and crying and telling the theatre technician how scared I was and how I didnt want to have to be brave.! Ally (the theatre tec) was brilliant and held my hand and talked to me and had me laughing in between crying! I will never forget the support she gave me that day. Yes the unknown especially an unknown as big as this IS terrifying. You will get through it. I so hope you have a wonderful theatre tec to hold your hand. Do talk about how you feel. I didnt and with hind sight perhaps I caused myself more stress than I needed. Thinking of you lots and lots. Good Luck. Let us all know how you get on. JacJac xxx

[Hidden in reply to JacJac]

Hi Jac Jac

Love your story. I am sure your experience has bought some comfort.

The theatre staff do a great job, so re-assuring. I hope you are recovered and are now well.

Regards Barbara.