Help recentley diagnosed with a large cyst...really worried!

Hi I have recentley been diagnosed with large ovarian cyst with some solid mass awaiting full hysterectomy, really worried about mass. Have been told by consultant that due to a level of something (not sure what) I cannot have the op locally. I have already gone through the menopause and am over 50. He said the normal reading is 250 and below for someone of my age and situation and mine is 300. I cannot find anything about this anywhere. Trying to stay positive but finding it difficult. I am unable to go to work as i feel that I have a huge football banging into my bladder and stomach all the time. Missing walking the dogs and just generally being active. Had to cancel an upcoming holiday as well. Have been advised that once op has been done tests will be carried out. Anyone out there give me any advice please. Thanks a lot x

27 Replies

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  • Hi Debbie,

    I will try! First things first: you need the facts, so ring your GP and ask for an emergency appointment (this IS an emergency for you). The Gp will either have, or be able to find the information about your case, and explain it to you.

    A large cyst, although horrible and frightening, is not necessarily cancer - in fact is more likely not to be, but you need to talk this through with someone who has access to your notes, and can explain. Write down what you are told so that you can research it all further for yourself, and take someone with you if you need a clearer head than you can provide just now - information is power!

    Then we and the nurses on here can support you further too.

    VERY best wishes,

    Isadora.

  • Thank you so much for this...it is nice to know there is someone out there to talk to. I will take on board your suggestions. My GP is not back until next week...but the Practise manager has been really supportive. Hopefully my appt for the op will be next week...not so much the op that concerns me it's the finding afterwards.

    thanks

  • I agree with what Isadora and Angela have said, it's so hard to keep calm when so many fears are flying about in your head. The Q and A section on here often is a lifeline for people when they have so many thoughts. I wasn't too scared about my op either, I just wanted to get on with things and know what I was facing. Whatever you are facing, do get back and let us know how you're doing. Mine was OC but it was caught early enough not to need chemo and like you, I couldn't eat much and kept going to the loo --very urgently! That was all 9 years ago now.

    All the best,

    Wendy xx

  • Can your Practice Manager arrange for another Dr in the practice to explain what the specialist was referring to, Debbie? That might just be a phone conversation, then at least you will not be left hanging with this worry.

    I.

  • Hi Debbie

    I had exactly the same experience in my 50s - large cyst and emergency operation. The only difference is that I had never heard of ovarian cancer then so didn't give it a thought until it was explained to me so I was spared the worry that you are going through. No good saying don't worry as you are bound to be until you get the results. I do agree with Isadora - find a doctor to explain things to you as soon as possible - 'knowledge is powerful medicine' - the more you know the easy it is to deal with. The cyst may well be a just that - unpleasant but not cancer. In my experience the specialist would be loath to hazard a guess either way until he/she has seen the results of the op and tests. But bear in mind, if it does turn out to be cancer - as mine was - I had over 13 years clear after the op and first treatment and was soon back to normal active life. I am now being treated again but am still very active despite the cancer and great age.

    All the best - i hope you find someone to speak to soon and that the operation goes well.

    Angela

  • Many many thanks for all the support and encouragement it really is appreciated.

  • Hi Debbie

    I am so sorry to hear that you are going through this, how awful for you. I hope that by now you have seen or spoken to a doctor who will have given you more information.

    I was in a similar situation to you , was told that I had a big 20cm cyst , that it may well be something terrible , then was told it wasn't ( there was a huge fibroid behibd the cyst) and finally long after the operation was finally told that it was a borderline tumour.

    Basically the doctors won't know exactly what "it "is untill it is removed and then analysed by a pathologist. Most cysts are just that. What extra treatment, if any, you need will depend on the pathological findings.Usually, if there are any suspicious signs, the abdomen is opened fully so that the surgeon can have a good look around. Sometimes they take samples from other organs and do other tests to make sure they know what they are looking at.

    The most important thing now is to prepare for the operation , which although major , is usually relatively straightforward. So try to get as much rest as you can , eat well etc.

    I would ask for copies of all test results and also any correspondance between your GP and the hospital and vice versa. It's so easy to forget what's said before or after an examination in these consultations. Also write down any questions you may have beforehand and if you feel that it might help, bring somebody along with you. Make sure you ask when your diagnosis is likely to be confirmed, you should not have to wait longer than 2 weeks.If you don't understand something, ask , doctors are well used to this.

    After the operation you will need to rest alot, not lift anything heavier than a small kettle for a few weeks , not drive for 4 weeks and not even think about returning to work for at least six weeks, more like 3 months in most cases. I was a bit of a control freak, but actually loved veging out at home after the operation.

    Our little cavalier king charles spaniel looked after her "Mummy" really well , as did my lovely husband.I was able to go for walkies with them about 10 days after the operation and I'm sure you will too with your doggies before too long.I am fine now, enjoying life and back at work.

    Waiting for things to happen is the worst bit, once you get to hospital things happen really quickly.

    Do take care and keep posting if you have any other questions.

    Good luck .

    Charliexxx

  • Charlie ...thankyou so much for taking the time to reply. It is heartwarming to hear of all the positive outcomes people are having or have had. x

  • Debbie, I have to agree with all the other lovely girls on here - don't think the worst as you will need a strong head and body to get thru the op whether is turns out to be OC or not.

    I too have been there in Oct 09 - no symptoms but large cyst found; had everything removed as they 'thought' it could be due to blood results, scans etc ~ hysterectomy, ovaries, oomentum, lymph nodes ~ was up walking (albeit shakily) next am; was out within 5 days and discovered the day before my 50th bday at my post-op checkup that it had been a Borderline Cyst!

    I am great now tho it did take me a long time mentally to come to terms with it but I got a lot of help from girls on here and Macmillan site too.

    Take it easy and do come back here if you need to talk or shout or rant!! We are all nice girls and will do all we can to help you with this hun!

    Sending you hugs,

    Sheila:)X

  • Thanks for taking the time to reply...as I said before everyone is so inspirational..it makes my heart happy x

  • Debbie, I had the same problem was fast tracked to my local hospital, gynecology unit

    then had the usual tests camera, blood tests, etc. was told I had anv ovarian mass, they would have more idea of diagnosis when blood test is done, but arranged for me to have a date for an op, the day before op hospital rung me to stop pre-op medication they needed to speak to me. consultant explained that the norm for a ca-125 is 35 or under they then do a calculation and if they arrive at a figure of 250 or greater they are not experienced enough to do the op , so was transferred to a specialist unit (not local) as blood test was higher than 250 before the calculations, so no need to work it out. as the consultant explained quote ''today I do operations, tommorrow I deliver babies you wouln't like me to make a mistake'' I was then transferred to a specialist unit and had a managed operation and treatment by medical staff that do this all the time.much better. Hope this helps feel free to get in touch if I can help . my very best wishes Gwyneth

  • Hi Gwyneth...thanks for replying...what was your count?. How did your op go. I hope everything is OK now. love Debbie x

  • Oh Gwyneth forgot to ask how long was it before you wre admitted for your Op please ? x

  • Hi Debbie...I first saw GP on friday 11/07/08 (my birthday) saw consultant at my local hospital on monday 13/07/08 he examined me and used a camera (endescope)to see what was going on was told I had an ovarian cyst the size of a very large melon I asked what size should it be... reply the size of a pecan nut... given date for op on 24/07/08 .. so two weeks later... inbetween those dates I then had tests ie:- pre-op blood tests ecg etc....on 24/07/08 operation cancelled due to high blood count ca-125 was 549 without the calculation as I explained earlier. ..they arranged for a scan at that hospital for 31/07/08 and transferred me to the specialist hospital for this type of cancer would only be sure of cancer after the op.. on 06/08/08 saw consultant had operation on 14/08/08 full hysterectomy with debulking and removel of the ommentum ( lining of the abdomen) I was found to have cysts on both ovaries diagnosed either 3A or 2C not sure as difference of opinion with medical staff I was assured that the treatment would be the same, anyway had the operation on the thusday came home on the monday 18/08/08......started chemo on 29/09/08 carboplatin and taxol every three weeks last chemo was 12/01/09 now in remission . sorry to be so long but thought you would like to know details I hope I've not worried you more, as everyone is different but it is good to know the time scale the hospital work to. If you need any help or support I am only too willing to share, I am also willing to ring you if necessary but I think to do that we need to go through admin as it is not wise to put details on an open site. with my very best wishes Gwyneth

  • Thanks Gwyneth. It was is great to hear that you are doing ok. Thanks for being so honest. Sometimes I thnk knowledge is a good thing sometimes not!!!. sounds like you had a time of it. Even then you did not seem to be in hospital long.

    Take care and i'll keep you posted

    Debbie x

  • Hi Debbie, my advice to you is to keep a diary...I bought an academic one that runs from end of july to start of july the following year...kept for medical conditions only,

    I wrote in it all symptons, medication,tests, hospital appointments, and who I saw, what they said etc,as it is so easy to forget these things,you can also see how well you are doing even if your mass is benign (and I hope it is) you will find it so useful.

    my very best wishes Gwyneth ,

  • Hi thanks for that it is just what I have been doing since last week. Writing everything in it though. Feelings etc. My husband thinks it is brave of me....but in a way i find it helps. love Debbie x

  • Hi everyone...well been to Sheffield hospital today. Mixed emotions. Saw a consultant who agreed that I did need a full hysterectomy. I am lucky that Sheffield are running a scheme to get you back on your feet quickly after operations. It means having a lot of special drinks right up to going to sutgery and then for 3-4 days afterwards. Usually discharged then about 4 days after Op.

    They did all the pre op tests ECG/Blood/Chest Xray/MRSA today and i go in Wed to start the special drinks and then have op on thursday..hoping to release me on Sunday/Monday. What I am really worried about is all the stuff they have to tell you may go wrong...blood tranfusions possibility of bowel damage etc. Also still have to wait for biopsy results to get the all clear after. Was told though that with a cyst with hard deposits there is an 80% chance they will find something. I just have to hold onto the thought that I may be the 20% in which they do not find anything.

    Anyhow feeling a bit worried about it all but better sooner than later I suppose. Good luck to everyone out there going through this

    love Debbie xx

  • Hi Debbie, they will probably tell you the result of your cyst the day after the operation they test everything that has been removed straight away, so you won't have long to wait. I will be thinking of you, I hope all goes well, please try and keep us informed. my very best wishes Gwyneth

  • Hi all back home now after op last Thursday. Saturday was a terrible day had so much gas trapped ...never had pain like that before..even childbirth.!.Scar still a little open at top so District Nurse coming in each day to dress it and injections for the next 25 days to stop DVT. Still not got any appetite back. Back at hospital on 5/9 for biopsy results. Surgeon said everything seemed to go well op wise but she cannot give any gaurenntees about results. Speak soon love to all

    Debbie x

  • Hi Debbie

    It's really great to hear that you have got over the operation and that whatever was in there is now out of your body. Things can go wrong with big operations so it's also great news that technically it all went well. Day 3 post op is often awful , it certainly was for me. Do try to rest as much as you can , sleep when you can and take things very easy. Take one thing at a time, so getting over the op is now a priority and if you need other treatment, then being better healed will help alot.

    This time last year I was in a big dark scary place with loads of post op pain and was very fearful about the future. Now my hubby and I are looking forward to a 3 week scuba diving trip in Indonesia.This would truly have been my worst nightmare a year ago. You will get through this too and be even better probably. But do give yourself time and realise that , hopefully, the worst i.e. the uncertainty and the operation will soon be or perhaps even already is over.

    Take care and do let us know how you get on on the 5th.

    Charlie xxx

  • Hi charlie...thanks so much for your support. I will let you know how I go. Today is one week after op and feeling so much better. still tired and a bit uncomfortable but getting there x

  • To everyone who has helped me over the past few weeks. I have had some good news today. Went back to hospital for my biopsy results and was given the all clear all biopsys came back BENIGN!!!!! So happy can now move on and get concentrating on recovering from my op. Hope any others of you out there who are awaiting results get positive outcomes.

    love Debbie x

  • Dear Debbie

    Congratulations, this is marvellous news.What a terrible time you have been through , but you can now move on. I hope you have a bit of a celabration tonight.

    Take care

    Charlie xx

  • Thanks charlie...still a bit under the weather from op to celebrate but will be doing soon ! x

  • Dear Debbie,

    I am so happy for you, it must be such a relief, I wasn't exactly up front with you when I last replied as I didn't want to discourage you. I now have a recurrence and started chemo on Aug 22nd .....I do hope you recover from your op soon .

    my very best wishes Gwyneth.

  • Hi Gwyneth...so sorry to hear that. I hope the chemo proves succesful for you. Please let me know. Take care and thanks for all your support love Debbie x

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