Hello again, this is my 2nd post and is following on from a post a few days ago.
I saw my consultant Thurs and he has told me I am going to need a full hysterectomy. He is concerned that the cyst that is on my ovary is segmented and 2 of the 3 blood test results are high. One is Ca125 level 358 and the other is for endometriosis. I will know in about a week where when and who will be doing my surgery, but he has prepared me for a cancer specialist doing the op will be most probable and chemotherapy after. The surgery will be within 4 weeks. He did say my lymph nodes are not effected and there is no free fluids visible so if it is cancer it looks contained. I may need an mri he said I dont know why, to check incase it may be elsewhere?
I am 45, family complete and feel very fragile now despite being 17 stone! This coming week is going to drag.
Any comments or advice really would be appreciated. I know blood tests do not mean 100% but it's the segmented cyst that is causing my worry. Plus I am having trouble sleeping for long before waking in pain. I am just taking normal pain killers.
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Langstonelady
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Just wanted to say hi and we have all been where you are now. It is terrifying and saying don't worry too much won't help a lot but do try! I just tried to take it one step at a time- sounds like they are moving quickly which is what you want- once I knew exactly what was happening I found it much easier to deal with. I had an MRI, 2 CTs and an ultrasound -I think they like to get as much information as possible before the op.
You'll get lots of support from the lovely people on this site, you aren't alone. Just try to take a day at a time.
Thank you Pimkin, I am trying most days, I struggle to do anything its as though life is on hold.
Hi there
I think you ll find that we all totally understand that the waiting is the often the hardest part especially when still waiting for a definite diagnosis. It does seem though that you are being dealt with quickly which is good news. I had an MRI scan because my consultant wasn't sure where my lump was coming-from after an ultrasound. They still weren't sure afterwards what was causing it but it did give them a lot more information on the make up of the cyst and they were able to see if any other areas were affected, so that may be why you ll have one as it can offer more detail. As you say blood tests can be unreliable and only till they do a biopsy can they tell you for sure what is going on and your CA125 can be raised by various things.
As Claire said there is lots of support from the great ladies on here and I know how it can be hard to think of little else whilst you're waiting. Maybe see if you can plan something each day to do with your family.
I do not think I will be much help to you because I am much older than you but it is 4 years since I was diagnosed but Claire (Pimkin) is right one day at a time is the easiest way to cope. Look for something positive in everything. E.g. When I lost my hair no need to shave my legs. One day at a time is easier!
Good luck
Margaret
Hello. The waiting and worrying is awful but it does sound as if the medics are doing exactly the right thing and it's good that the op will be so soon.
Just over 2 years ago I was exactly where you are. When they operated they found early stage cancer but it was all contained within the cyst. I had a course of carboplatin, the single agent chemo that doesn't make your hair fall out, and I've been clear and well ever since. I hope for the same or better for you.
Take things gently between now and the op and you'll continue to find plenty of support on this site.
Best wishes
Linda
Hi I was in this position in February this year. I was 45 then, family complete so wasn't worried about losing my fertility etc.
The waiting game is probably the worst thing but try not to worry too much (easier said than done). I had a total hysterectomy on March 11th along with my appendix, lymph nodes and omentum removed. I have been lucky, my tumour was borderline so I didn't need further treatment. I did have complications with my bowel after surgery but since then have made a good recovery.
It is almost 4 years since I was in the same position and my heart goes out to you. Once you get into hospital things move really quickly , which is comforting , but the hanging around is awful.
Please be aware that imaging is just imaging and a cyst that looks concerning might not be once they open you up. The fact that there is no fluid and nothing elsewhere is also very reassuring.
Perhaps try to get out and about a bit in the coming weeks...it is probably the last thing you feel like but it really will help you feel better. If you have any questions , just keep posting here.Also Ovacome has wonderful support nurses who you can ring and talk to.
Thankyou ladies your info and advice is really invaluable the waiting game is def the worst. I need facts!
I am pleased I have found you. I have been signed off work just before findingx out the type of cyst it was because I was an emotional wreck, so I think now it is a blessing, I can also get xmas presents and cards too before my op. Ithink today we are heading out once I can get dressed!
I'd like to back up what's already been said. I found waiting, & not knowing for sure what the diagnosis was, the hardest things to deal with. Knowing mine was cancer was in a sense better than not knowing & fearing the worst, I knew what I was dealing with. And taking things a step at a time is definitely the easiest way. Mine was first diagnosed in 2008, & it has recurred, I'm waiting to start chemo now. But all along I've just taken life as it comes, a step at a time,, & I can deal with that.
Hi, I was in exactly the same position you are now, this time last year. I remember feeling absolutely terrified and wanting to crawl back under the quilt each morning. I couldn't though because I was working and needed to get the kids off to school each morning so I coped by keeping myself busy and surrounding myself with positive people. By the time I went into hospital for my surgery my house was immaculate and I had done all my Christmas shopping and wrapped it. Thankfully the majority of my friends are ver positive people but I couldn't distance myself from my work colleague so a week before my surgery I spoke to my boss and asked if I could start my sick leave. I did this under the pretence that I had loads to do at home but I knew that if I had to spend another day in her company I was going to say something I would regret. The waiting and not knowing is horrible but I'm sure once you get a date for your surgery you will feel more positive, I know I did because I just wanted it out. Take care and please don't feel you're alone. We all know what you are going through right now and we will be with you every step of the way. Love Kerry x x
Hi, 3 years down the line for me but I remember it well, a delay of 1 week was too much to bear at that time, didn't know what to say to my family, desperate times. Take comfort in knowing that you are in good hands now.
Agree with Margaret re the hair loss, I still have fun with people who don't deem to realise that when you lose the hair on your head, you lose it everywhere, hee hee! You may not lose your hair with chemo, depends which regime they decide is best for you.
Joanna is giving great advice. I guess you are Scottish? Sorry to say, but we should perhaps start a subgroup or something. I am Scottish too, originally from Glasgow. Langstone rings a bell, but Langside rings many more bells for me. I vividly remember taking part in a student rag week stunt, and getting arrested, trouble was, we all fled, and apparently what had happened was that a floor bomb landed on a Chief Superintendant... We got away with that one...
As for cancer, I hope that luck will be with you, that there is no spread or free fluid, and that cyst will be removed. The statistics are with you - the younger you are when you are diagnosed, the better your chances. So please, hang on to that thought, and I hope that it will come true. Hope is so important. I was in a state of shock, and then terror, it took a while for reason to prevail. Four years later, a gloomy prognosis has turned into a good one for me, for the next five years at least. Good luck and I hope the same outcome will apply to you, Vicky xxx
Hi, as Margaret says take it one day at a time, it is the waiting that is the worst. I luckily didn't have a lot of time to wait from c t scan I waited a week to see surgeon as he was on holiday saw him on Wednesday was in hospital the following Monday surprisingly calm as at that stage I had decided there was no point worrying about something I could do nothing about. I was told before surgery I could end up with a colostomy & would have to have chemo, my tumour was huge covering the front of my abdomen & stomach & I had fluid leaking. Despite all this I ended up with hysterectomy, appendix, lymph nodes & omentum out & a chemo wash. My tumour was thankfully borderline when I went back operation had been so successful I didn't need chemo, tumour alone weighed 2 stone. That was 18 months ago & apart from a few small aches & pains I am fine, I know I was lucky compared to some on this site but it just goes to show sometimes it's not as bad as think. Hope you get sorted out try not to worry I only have one daughter who's 21 & know it's not easy as I was more upset for her than myself but once you start treatment everything seems to fly by. It does help to keep your sense of humour & you certainly get some laughs in hospital.
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Another cyst!
ct scan results 
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