New lady looking for some help x

I have an 18cm mass on my right ovary with several small tumours growing on it. My CA125 was normal which was a huge milestone. My surgery is on Tuesday which is major surgery and the closer it gets the more terrified I become. I have the most wonderful husband and lots of lovely friends and family but at the same time feel so alone. I am horribly uncomfortable and no one can say if there is any cancer there until they can open me up (no bikinis this year then)!! I am humbled by the strength of people on here and almost feel guilty that I am even writing this, my head is all over the place. If one more person says to me there is someone worse off than me I think I might throw something at them. This has really helped just being able to get things off my chest. I apologise for even bothering all of you I have never known such strength from the ladies fighting a tough old battle, going through much worse than I am xx

24 Replies

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  • Don't worry about bothering us - we've been there too! Four and a half years ago I was in pretty much the same state you are, even to the size and location of tumour. My CA125 was elevated at 64, but that's nothing compared to many of the others on this site. Happily, mine turned out to be stage 1a, as I had a type of tumour (mucinous adenocarcinoma) that tends to grow large in situ before spreading, and mine had not yet spread outside the ovary. I did not have to have chemo and am still NED (no evidence of disease) to this day.

    I'm hoping for as good a result or better for you - do keep us posted! Meanwhile, distraction techniques helped me more than anything else while waiting for my op - lots of outings with my friends or family, choosing books both to read while waiting and after the op (strictly light reading while in hospital, as you will be quite tired and constantly interrupted), etc. If you have an ereader you can take along lots of choice. Ereaders that have their own lights are great for times when you are wide awake and everyone else is trying to sleep - remember to fully charge it in advance or bring your charger! If you like puzzles such as sudoku treat yourself to a magazine full of them and take along a propelling pencil and eraser. Earplugs are also a good bet, as the ward can be quite noisy at night.

    At least you don't have much longer to wait.

    Wishing you all the best for Tuesday!

    Barbara

  • Thank you so much for replying and the help these are things I never thought about I will now be packing earplugs! I almost feel normal again after reading your story grateful thanks and best wishes to you xx

  • Hello

    It's horrible not knowing and also the stress of going in for surgery.

    Try to remember that for the surgeon it's just a normal day at the office because s/he s done this op sooo many times. Hopefully you will have had someone go through the what they are going to do and how. All you have to do is show up- they do everything else! In next to no time you'll be waking up in recovery.

    You just have to get through one day at a time...trying to make sure you have something nice each day..pat yourself on the back, make your own comfort your priority and stay well away from Mr Google!

    All the best xx Lyndall

  • Thank you it's very kind of you taking time to reply. I know the cut is up and down rather than across the tummy. The surgeon also advised I would have a pca for pain and that is very reassuring just so scared but I think reading this has really helped me, I am lucky considering what some woman go through. Tearful and fragile best describes how I really feel although to everyone around I reassure them I am fine. I can't bear others worrying about me.

    Xx

  • Hi Hun I'm in the same position although my tumour is smaller and they don't know if there is anything on the left ovary as they can't see it on ultra sound!

    My ca125 is raised but hoping it's not cancer!

    I'm in a emotional mess too - I'm scared and fed up of everyone telling me "don't worry it will be alright" it feels almost offensive to be told that!

    If you ever need someone who understand ms to talk too just drop me a message - I'm really good at listening to rants :-)

    Good luck for Tuesday (not sure when my surgery will be) will be thinking of you

    Pix

  • Hi thanks for your reply, you are the first person to say how annoying it is people saying the most pointless things, my biggest thing is think positive and positive things will happen!!! I will feel totally blessed to get through this op ok and not need further treatment, but this uncertainty is really hard to live with, I am generally ok during the day but at 3 in the morning I am just lost and can't bear the peace and quiet. I only waited two weeks for surgery and am grateful for that as some people wait such a long time. I have a fair bit pain and my tummy appears a bit of an odd shape and after this is all over life will change forever making everything look different. it has taken me to the edge of a world I hope I hope I won't enter. Waiting and uncertainty is the worst I think once things are certain you can deal with it better. I hope you get a date for surgery soon I will be keeping a look out for your news.

    Thank you for listening

    Xx

  • Hi. I had a mass on my right ovary in 2007 (18cm) and a smaller one (about 7cm) on the left. The cut as you say is upwards rather than across but having said that I had the operation on Thursday and went home Monday. Lyndy's advice is good, stay away from Google. Statistics are just that, statistics. They wont tell you what will happen to you. I made the mistake of looking at statistics and wrote myself off. As you can see Im still here. I hope your operation goes well on Tuesday. please let us know how you get on xx Kathy

  • Hi I can't tell you how much better these replies are making me feel. Google is terrifying and I wish I had known that before I found all of you, thanks for everything best wishes xx

  • Yes Jacq67 stay away from google. I wont say that surgery isnt daunting because it is, but bring in some treats, magazine ipod etc and the ear plugs. I was never in hospital until my tah but I learned to go with the flow. It might be handy to have one or two nighties and slippers you can slip on without too much effort. For home time have loose crop pants. If you want also buy some cami tops to wear inside the tee shirts when you come home in case you feel your scar is on show. I did that and I still wear them. The doctors will give your good care and the nurses will look after you post surgery so all will go better than you think. You must be gentle on yourself, its okay to get upset whenever you want. I wish you the best for the op, let us know how your are doing when you are able,

  • Hey Jac!

    So sorry you find yourself in this situation it's crap and there's no doubt about that! I had a 16cm cyst which turned out to have cancer cells in it! I had two ops and Chemo! Last Chemo in March and while I still get some aches and pains and tired sometimes I actually am feeling very good at the min so there is light at the end of what might seem like a very long tunnel at the min!!!

    Best of luck with the Op I have everything crossed that its benign! Keep us posted!!!

    PS After the op drink loads of water it will help with your digestive system it tends to find anesthetics a bit challenging!!!!

    Onwards and Upwards!!

    Dx

  • First of all, let me say welcome. You need never apologize for "bothering" anyone here. You're not bothering anyone. We are here to support you no matter what. Never feel guilty for asking for help. We're all either going through it or have been there. You just have to ignore the people those people who say there's always someone worse off. That doesn't help. Ask someone here if you need support with an ovarian cancer issue. We may not have technical answers, but emotional ones, quite probably. Nesie 237

  • It is understandable to be so worried. But all i can suggest is the same as BJ. Relax, and be kind to yourself. I took a small pad and pen to write down any questions i wanted to adk. As i am so forgetful. Also do not be intimidated or afraid to ask them what you want to know. Ok.

    Oh and good luck. Xx

  • Welcome.

    I know what you mean about people saying the wrong things to you. I can't count the number of friends and family who said "you're going to be fine, it won't be cancer." (they were wrong, and it was!) In the end I was almost screaming "how can you say that when you don't know what you're talking about!)

    One thing I have found really helpful, was to take a notepad into hospital and keep a daily diary. I am now 6 weeks post op and still note how I am feeling each day and it is mostly very positive.

    I have found it really encouraging to look back to the early days and see just how well I have recovered, and there are lots of post op reactions and feelings that I had completely forgotten about.

    When my chemo starts, I intend to keep a daily diary then too, so that I can map how my body is reacting.

  • Everyone's battle is different and what you are going through is just as scary as everyone else's. Never be afraid nor let anyway make you feel that it's not the same. We are all somehow in this together. Let us know how you are doing. 🌹🤘✝✡🍀

  • Hi there, Can't say much more apart from I was in the same boat in 09. Didn't know what was in there apart from a 13cm mass. Thankfully 2weeks post op the official news that I needed no further treatment. It will be a hard few weeks but with support you will get thru it. Take things very easy post op but don't be shocked when they ask you to get out of bed the next day! I wish you all the best for Tuesday!

  • The lead up is far worse than the reality, honestly! I have had 4 operations and the worst thing is the lack of sleep!!! Pack eye mask as well as earplugs and ask GP for sleeping tablet prescription to take in, they will then give them to you if you ask! It will be absolutely fine honest. I have scars everywhere, never did like bikinis and now my daughter and I shop for pretty one pieces for me. Good luck xx

  • Dear Jacq67. You are in the right place and speaking to the right people. Your message sounds so like how I felt pre op. I felt like I was going crazy with dread and combined with the worry about the procedure I was crazy. good luck for Tuesday. It will be tough but the nasty cyst will be removed and this is the most important part of the process. So many good hospital tips - hand cream, lip balm. Good luck and take care. T. X

  • HI if you can drink peppermint tea it is a great help after your op as it helps with wind. I drank lots and didn't have a problem but the other ladies in my ward were suffering until I handed round my tea bags. Dont worry about pain after your op as it will be kept under control and you mention a Pca which I think maybe is what I had (thin tubes coming out of tummy for anaesthetic injections) they were amazing didn't have any pain only slight tummy ache and was also given pain killers. Try not to think in front I know it's hard best thing is to keep busy if you can. We have all been there so know how you are feeling and you will have other ladies in your ward all going through the same. If it's anything like my ward we had a good giggle about things.

    Sending you my best wishes

    LYnda xx

  • Hello and a huge thanks to all of you I never knew how much help was out there it means even more when people have gone through it all already. I never really did web help before but so glad I have now. I am 49 by the way a bit of an old bird! Today is a planning day as my hubby can't cook so getting some easy meals ready for the freezer which will be helpful when I come home. Telling everyone around you all is well and putting on a brave face is actually really stressful. That elephant is always in the room. Inside I am a crumbling wreck but I know now all these feelings are really normal and all you brave ladies have really really helped me I am not alone. I almost felt like I had no right to complain although words like mass, malignant and cancer have been mentioned I have no proper diagnosis and I felt so guilty complaining at all. It's just such a lot.

    Thank you so much to all of you I am overwhelmed and very grateful.

    Jacqui xx

  • Dear Jacqui

    I just want to wish you well for Tue. I have no surgery experience so cannot help in that way . However if I had a Euro for every time someone told me that staying positive was the most important thing , I would be a very rich woman. As for the unthinking people who say glibly " we could all get knocked down by a bus in the morning ! " or " you can't be that sick as you look so well ! " I avoid them like the plague . Despite loving family and friends it is an isolating illness and somehow you feel you are alone on this journey as you don't want to worry your loved ones. That is why this site is invaluable and the caring women here have kept me going many times. I know I will be calling on them very soon and they will not fail me.

    XXX

  • Hi Jacqui,

    As others have already said the feelings you are experiencing are totally natural in your present situation and we are all pleased to be here for you at this stressful time. Do remember that surgery these days is very different from what it once was with improved anaesthetics, techniques, pain control etc. Like many on this forum, I found the actual operation far less daunting than expected and hopefully you will have a similar experience.

    Others have already given you helpful practical tips and I would emphasise having nighties rather than pyjamas for comfort after the operation.

    Do hope all will go smoothly on Tuesday and that this time of uncertainty and waiting will soon be over. Be kind to yourself and take care.

    Best wishes,

    Barbara

  • Good luck on Tuesday Jac , any abdominal surgery is scary , and you must be so uncomfortable with such a big cyst . Do hope it all goes well and the cyst is harmless. Xx

  • Jacq67--Hang in there. It is very scary waiting for a surgery and then waiting for the results. We have all been there. I had colon cancer 12 years ago and when they removed part of my colon they also found an ovary the size of a grapefruit and removed that too. I had stage 1 ovary cancer and stage three colon cancer . After surgery I had chemo and I have been fine every since then. I thank God for that and Hoping he continues to keep me cancer free. My mother had two surgeries for growths on her ovaries and neither one was cancer. She was in her 30's when she had her surgeries. She is now 89 years young and has never had any problems. since then. Good luck to you. Sending hugs and prayers your way. Keep us informed.

  • Hi to all of you who have taken the time to reply I so appreciate all of your replies. Surgery tomorrow so today has been a funny old day I am almost relived its here and then terrified at the same time. This forum is invaluable and I wish I had found all of you sooner. Today people have been amazing calling and sending messages it does show you who your true friends are when you are really up against it. My best wishes and kind thoughts to you all and I will update you when it's all done xx

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