waiting for initial gynae appointment

Hi, I feel a bit of a fraud writing on here, but would value any comments or support. I have been losing weight for 2-3 months without trying and some work colleagues finally convinced me to visit my GP. I did this last week only to be sent for urgent blood tests followed, the next day by ultrasound and transvaginal scans which showed up a cyst from my left ovary. The GP told me she thought my uterus was high in her examination which prompted the bloods and scans. Anyway, I was called by the GP yesterday with the words "are you with someone"? Enough to put the fear of god in anyone no doubt, when she proceeded to tell me I had a solid mass which she could see from the scan results. I have absolutely no idea whether cysts are solid or fluid filled and everytime I try to google this (which I promised my friend I wouldn't) the end result was cancer! I have an appointment in the gynae clinic in 9 days time and am trying to be positive about everything! I am rarely ill and can probably count on one hand the number of times in my life I've visited my GP other than being pregnant. So obviously this has knocked me for 6. I have told 2 friends what is going on. Unfortunately one is on holiday, but the other has been my rock, by my side and by her phoneto listen to me. But what I really need is to hear from others who have been through what I am going through and come out the other side! Thanks for taking the time to read this

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  • Hi. Waiting is the pits and best advice I can give is to stay away from the internet , you'll drive yourself mad, probably have yourself dead and buried! Ive been where you are 9 years ago but as you can see Im still here. Try not to worry about things, seems a hard thing to do but you'll be worrying about something you cant change and you'll make yourself miserable and depressed while you are waiting. Do you know if you have had a CA125 blood test? I hope you find a way to deal with the feelings you have running through you at the moment. Kathy xx

  • Hi,

    Thanks for replying! I'm trying to be positive in all of this because I can't do anything until I know what I'm faced with! I've had a CA125 blood test, but the results aren't back yet. Hoping they'll be back by the time I go to gynae next week.

    x

  • I have been in your shoes quite recently and the waiting is the worse once you have a diagnosis and a plan it becomes easier.

    Try and take a step at a time and like kathy says don't look at the Internet.

    Of course your not a fraud the ladies on here are fantastic with the best advice, brilliant virtual hand holders and heartfelt support. At the moment your unsure what you are facing and that's not easy you do tend to think the worse. Stay strong be positive and this will help you get to the other side.

  • Ca125 should take about three days to come back xx

  • Thanks, that's what my GP said initially when she sent me for blood tests on Wendesday last week. But when I asked her about the CA125 test on Monday she told me not to worry about them (after she'd told me I had a solid mass/cyst) and that it would take 2 to 3 weeks to come back! x

  • Thank you ladies! The main thing is that I've got to the age of 50 without ever being ill so now it's being faced with the possibility of something serious that has knocked me sideways! Your advice and support is much appreciated x

  • HI Butterfly 98 and welcome to our site of friends and support. The waiting bit is the pits really. Try to focus on other things while you are waiting, I am glad you have good friends to call on for support. I was told at the start of my adventure with OC not to pre empt. It is hard isnt it? Maybe speak to your gp about getting a sleeping tablet, I did that because I felt without a nights sleep my coping skills were gone. I wish you well for your consult and do let us know how it goes. We will help you as much as we can and send you in the right direction for support should the need arise.

  • HI five years ago my cyst (solid mass) was 23cm and fluid filled. Your gynae Dr will give you more info on your next appointment and put your mind at rest. I tried not to think of any what ifs while waiting for my op, just kept myself busy at work while I was able to xx

  • Hey butterfly!

    I echo what the others are saying! The waiting is the worst!!! My mass was 16cm and fluid filled and turned out to be OC my sisters friend had a solid mass at the same time as me and hers was 13cm and it was not OC it was a Dermoid cyst! More often than not it's not cancer so try not to worry! You will be able to deal with whatever is thrown at you!!!

    Best of luck with it all!

    Dx

  • Hi Butterfly

    So sorry you are going through this ...but as others have said, don't pre-empt things.. Your doctors are doing the best they can ..let them do their stuff and take care of yourself in this horrible waiting space. Much love. Lyndall

  • Waiting is the worst and it's difficult not to worry.

    Sending a big hug while you are waiting.

    Xx

  • Yes the waiting is the worst. I had sleeping tablets for a short time and they did help,what with the anxiety and then not sleeping I couldn't think straight. Good you have that rock of a friend with you. I know it is hard to believe at the moment but once you have a treatment plan in place you will find an inner strength and deal and cope with what's ahead. Do write down any questions you have ,it's so easy to forget what you wanted to ask when your appointment comes around. Sending you lots of love xx

  • Hi

    So sorry you find yourself here but you've come to the right place for support and advice! I agree with what everyone else is saying. It is easier once you know what you are dealing with and you have a plan in place. You are fit and healthy and that's a real help. Hope it turns out to be a benign cyst-fingers crossed!

    Love and hugs

    Lou xxxxxxxxxxxxx

  • I know exactly what you mean about feeling a fraud if you don't have a diagnosis as that was pretty much what I said when in the same position back in April. My mass was both solid and fluid filled with chambers throughout. It was 30 x 30 x 20 when found and continued to grow. By the time it was removed they removed just shy of 16kg of tissues, mass and fluids! I did have to have a total hysterectomy and bi-lateral salpingo oophrectomy (they need to come up with an easier way of saying ovaries removed!). I also had my cervix removed as I have had to have surgery on that several times in the past. HOWEVER...after all of this they found that I was borderline and everything was removed through surgery with no need for any further treatment.

    The ladies on here are wonderful and caring and kept me sane during a very, very scary journey. It is hard for anyone to truly understand the fear of the unknown, and known, unless they have been there themselves so I would recommend using this site as a welcome place to rant, rave, ask questions and be honest; Someone will always answer. I also rang the help line once when I was very poorly and was given great advice.

    Much love and strength to you.

    Marthasperson x

  • Hi luv,

    Echo what everyone has said, I was in your position 2 years ago and I am still here to tell the tale.I cope by not looking at statistics and not googling for info, if I need to know anything I ask the experts.

    Once you know what you are dealing with and a plan is in place you can get into fight mode if you need to.

    I for one hope you don't need us in the future, but if you do,there are lovely ladies to talk to and this site is a lifeline,

    Let us know how you get on

    Carole xx

  • Hi Welcone to this fab site where everyone has so much knowledge and offer loads support.

    I am fairly new to this too so know exactly how you feel. No point telling to not to worry because naturally you will.

    Don't google anything !!! Information on there is so old. Just stick to this site and Macmillan. The Macmillan nurses are great if you call them. Very reassuring and talk you through everything.

    You can even make an appointment to see them at your local hospital

    Even if you find out the worst there is so much treatment available. Please don't worry too much the wait is the worst time but they tend to move pretty quickly

    I really hope it's not as bad as you fear

    Pleaser let us know how you get on

    Xx

  • Hi ladies,

    Thank you all for your positive support and replies since my post yesterday! Apart from a major wobble last night (why is night time always so bad?), I've so far managed to be fairly positive today, especially since I've read so many posts on this site and seen what so many of you lovely ladies go through! I admire each and every one of you and am so impressed with your get up & go attitudes that I'm going to stop wallowing in my "woe is me" when I don't even know what's happening yet and carry on as I was before my trip to the GP last week! This is an amazing site and I'm so glad that I came across it

    xx

  • I love it too. It's 12:30am. I can't sleep so am reading everyone's posts. It's better than laying here awake and worrying! I always feel better afterwards by all the encouraging words. Although worry doesn't change a thing! A positive attitude will take me along a much better road. Hope all goes well with you.

  • Hi Butterfly,

    Unplanned weight loss was what sent me to my GP and then everything swung into action as you described in your post though you seem to have had a very swift response. It is great to get a gynae appointment so quickly.

    As the others have said once you know what you are facing and have a plan in place, it gets easier. I would agree with suggestions to write down all your questions before your appointment and also if possible to take someone with you as 2 sets of ears and brains are definitely better than one in these situations. Especially as you have been so fit, an appointment like this will be something new in your experience so take advantage of anything that will make it more useful.

    Do let us know how you get on, don't feel like a fraud and come back to us if we can help at all in any way.

    Best wishes for your appointment,

    Barbara

  • Thank you Barbara x

  • Hi - I just wanted to offer my thoughts and sympathies having been through what you are quite recently (May/June). I started having abdo pains from March onwards and then visible abdo distention. Scan showed a rather large (16cm) fluid filled mass on right ovary. Had it removed via laprascopic surgery mid-June but turned out to be a borderline mucinous tumour (I'm 33, no kids). Having 2nd op next Tues to have ovary, tube and appendix removed and further biopsies taken. The waiting around all of this was definitely the worst and although I know lots of people say to leave Dr. Google alone, once I knew what I was dealing with, I wanted to gather as much knowledge as i possibly could. To me, knowledge is key. It's easy to say 'try not to worry unless you have to' but you will...it's only natural. I'd also say that don't get too concerned either way about your CA-125...they did one on me before my first op and it came back at 7.9 (low)...for some women, it isn't always an accurate indication. I wish you well over these coming days/weeks/months. Welcome to the site - I'm new but everyone here has already been so wonderful and supportive. Jemima x

  • Thank you for your comnents You're right about being told not to worry - it's a natural response, especially when you're waiting for the initial appointment! I'm ready to accept whatever is thrown at me next week and try to be as positive as I can. I know if I'm hit with something serious I'm bound to have a wobble or 6!! But I'm generally quite an optimistic person so I know I can get through everything. It's helping me to think the worst to be honest, that way I may be better prepared on Thursday! This site has been a god send, reading about all the ladies and where they are at on their journeys and everyone has been so supportive. Sorry for rambling!! xx

  • You're not rambling, you're making complete sense & that's exactly how I coped with the process. Thinking of you & hoping you get some positive results xx

  • Hello Butterfly, your perspective of being fundamentally optimistic whilst preparing for the worst is I think how I have approached my shock diagnosis of ovarian cancer five years ago after, like you, rarely being at the GPs. If you do get a distressing result, there is a lot of learning ahead, the opportunity for you to recognise your resilience and certainly everyone on this site will be here for you, rooting for you and offering shoulders as well as support. One day at a time and be kind to yourself in a way you probably have not done before.

    But, let's hope all is just the best news it could be.

    Warmest wishes, Lesley

  • I agree with what's been said, stay away from Google! I had a solid cyst which was dermoid on one side and the other was borderline. Lots of different possible diagnosis, just focus on looking after yourself and let the experts do their thing. Whatever the result the waiting is always worse. When you have answers you can take control and make a plan. Plus we are all here and understand exactly what your feeling. X

  • Thank you! I'm keeping myself busy now - I can't do anything until I know what I'm faced with! Can I ask, as I'm completely ignorant with possible treatments, what initial treatment did you have after your cyst was found? xx

  • An ultrasound showed cysts, surgeon suggested removal of cysts which led to the diagnosis. Since then further surgery to remove one badly affected ovary. I've not had any further treatment, no chemo etc... Yet! I have had mri and ct scans but that's it. I think I took them by surprise as I don't have any of the normal symptoms! I've always been a bit odd haha. x x

  • Thank you! I like to be prepared! I only went to the GP because I'd lost weight. I haven't had any of the usual symptoms, no pain, swelling or anything!! That's why I was taken completely by surprise when I was sent for urgent bloods and ultrasound within 24 hours and then to be told I have a cyst on my left ovary. I'm thankful now that everything has kicked in so quickly, especially as I'm on school holidays (I work in a school), so I can go to these appointments without having to take time off work! I need to be prepared for Thursday so I understand what I'm being told! xx

  • Hi, there is good advice on both the Ovacome and Target Ovarian cancer websites for what is useful to ask at doctors' appointments. As others have said, there are many possibilities... I'm also in the camp of needing to be prepared and do strongly recommend these two sites as the source of good information.... Very best wishes X

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