No diagnosis yet but hopeful!

I have been reading the blogs on this site for a few weeks now and they have helped me cope with the possiblity that I might have ovarian cancer. I started experiencing symptoms just after Christmas when my stomach began to bloat and didnt go down again, otherwise I felt fine. My Gp referred me to the surgical team at my local hospital who very quickly ordered a CT scan. I have now been told that I have a tumour arising from my left ovary that is 32cms by 23cms in size (the surgeon seemed really impressed by its size!) and might have ovarian cancer. I will have surgery within the next 2 weeks to remove the tumour and whatever else they need to take out. I am coping ok with this and have great support from my family and friends :). However over the last few days I have been in some pain, its a strange type of pain that feels like muscle cramp across my whole abdomen. I get massive spasms (like Braxton Hicks) when i am lying or sitting down and they take my breath away! Does anyone know what this might be and how I can ease them as I am finding it hard to sleep/rest. Hopefully this tumour is benign, fingers crossed!

Its great to be able to read about Ladies who have fought and survived this horrible disease and the different experiences of treatment that I might need in the future. You are all an inspiration :-)

19 Replies

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  • Hi there

    Sorry that you are going through this.That really is a monster you have got in there.

    I had also had a 16cm ovarian tumour chopped out. It turned out to be a borderine mucinous tumour and thankfully I didn't need chemo or radiotherapy, just follow up.

    I had pain from it before the operation to remove it.Apparentky it had displaced my bladder abit , but all my systems were working fine.

    I found that taking painkillers, paracetamol and or ibuprofen helped. Keeping busy within reason helped me alot. Obviously if the pain gets really bad get yourself to A and E, as the size of the thing could squash your other organs and cause real problems. It's good that you are being sorted out fairly quickly though.

    Good luck with the operation and do take things very easy afterwards.You body will need time to recover from such a big operation.

    Love

    Charlie xx

  • Hi Charlie,

    thank you for ur advice, I have taken some painkillers and feel ok at the moment. The gyny dr said he thought it looked like a mucinous tumour on the scan. Another surgeon thought that changes in my omentum could be cancer spread but the gyny dr thought its just imflammation from the tumour hopefully its the latter as my ca 125 results were normal. My poor bladder has been squished so much that I am really incontinent (especially at night) and the first thing my daughter asks me each morning is 'well, did u wet the bed last night?'. Its good to know that you didnt need further treatment it must be such a relief! I cant wait to get the tumour out and get back to normality.

    love Jane x

  • Hi Jane

    Yes it was great not having chemo or radiotherapy. I'm really fine now, going to the gym , back at work and I'm now training to run the race for life for the first time at 50.

    These mucinous tumours do grow very big. The fact that yours it is on one side only and that your CA125 is normal, despite the thing being so big, is really really good news. They won't know for certain 'till they open you up , but if something that big really was cancerous surely it would produce some CA125 !

    I so hope that things work out for you. Fingers crossed they will and that this will be all behind you soon.

    Keep posting if you have any other questions.

    Charlie xxx

  • Dear JBobDot

    Welcome to our friendship circle - not that anyone really wants to join - but you will find plenty of support and helpful advice from your friends on here.

    It does seem you have a whoppa so I'm sure the pain will diminish once that's out - and the sooner the better. As Charlie says large tumours do press against other organs and this causes no end of pain. I had terrible pain in the week or so leading up to my op so I would go straight back to your doctor for a stronger pain killer than the ones you can buy over the counter. This should help a lot and perhaps even control it entirely and keep you comfy. You don't want additional pain at a time like this.

    Keeping our fingers crossed for you. Let us know how everything is going.

    xxx Annie

  • thank you for your reply Annie,

    everyone one here seems really friendly and supportive. When you are sitting at home (I usually work full time in a very busy job) with alot of time on your hands its hard not to dwell on what might happen and its good to have some reassurance from others who have been through the same thing. I am taking some painkillers now and they are helping but I will contact my GP to see if he can prescribe something long acting for nightime as the pain is worse when I lie down.

    I will keep u updated :-)

    Jane X

  • Hello

    I feel for what you're going through at the minute. The waiting is the worst part.

    It was severe pain that sent me to the doctor in the first place. I reckon my cyst, which was smaller than yours, was pressing on a nerve but then shifted a bit because the pain eased after a few days and I didn't need any more painkillers.

    One gynaecologist I spoke to said that larger cysts can sometimes prove to be less sinister than small ones so I hope that's the case with you.

    Wishing you well and keep us posted.

    Linda

  • Hi Linda,

    thank you for your reply, I think that I am so stretched now that all my organs are complaining! Its like growing a full term baby in 4 months, people keep looking at my huge belly and smiling knowingly...I prefer just to go along with their assumptions as saying 'Im not pregnant I have a huge tumour' tends to ruin their happy thoughts! I will let u know what happens.

    Jane X

  • Hi Jane

    All the best for what lies ahead. I echo all the other advice earlier. I had OC in both ovaries and the omentum, which my surgeon removed. He said he's removed all traces and, nearly 10 years later, I'm fine. I didn't need chemo or anything other than monitoring as follow up, as mine was borderline. It had been there for about 3 years I reckon, so I was lucky it was a slow-growing type. My belly was really swollen towards the end of my time before diagnosis and I kept nearly passing out, feeling faint and feeling full permanently. I also needed to go to the loo half way through any meal, however small. You sound as if you have a really great attitude to all that is happening to you, I'm sure you will cope well with your op and soon be back on here to let us know how it all went.

    It may be worth ringing up the surgeon's secretary and asking if you can go on the waiting list for cancellations at the hospital, if you could arrange your life to cope with that ...it helps to think it could be even speedier than 2 weeks. In the meantime, try to keep your mind busy. If you have a wobbly moment, post on here and someone will be there with you. It's a great club formed for a not-so-great reason, but we're all here for one another :-)

    Good luck

    Love Wendy xx

  • hi Wendy,

    its great to hear from ladies like you who are doing well after 10 years :-)

    Unfortunately my lovely aunt died of ovarian cancer 3 years ago and my poor mum is really struggling with the possibility of me having the same disease. I keep telling her to get on this site and see all the ladies who have survived and are leading full and happy lives I think it would really help her cope. I met with my oncologist gynocologist yesterday and the date for my op is the 23rd of May so not too long now. He said that due to there being 'nodules' on my spleen they are going to remove it too. This means I will be on antibiotics for the rest of my life but if it has to go it has to go! I will keep u posted.

    love Jane xx

  • Glad you got your date fairly soon. It must be hard, having lost your Aunt, especially for your Mum. A lot of people think Cancer = bad outcome. However, it sounds as if you have been diagnosed quickly and the outcome should be good. There's so much advice on here for how to cope with the op, post-op etc, etc. Just ask away!

    Will be thinking of you

    Love Wendy xx

  • Hi Jane

    Sorry to hear you are going through this at the moment. Hopefully it will be nothing sinister. I'll keep my fingers crossed for you. Whatever the outcome you sound as though you will cope with whatever life throws at you. It's a 'club' I never wanted to join but just to be in the 'company' of the ladies on this site makes it worthwhile. They are truly amazing women.

    Good luck with the op.

    Love and hugs Chris x x

  • Hi Chris,

    thank you for your comments, it really has helped me to get my head around what is happening to read about other peoples experiences. Everyone is so lovely, helpful and encouraging I will continue to keep u all updated.

    love janex

  • I did a double take when I read the size of your tumour! I have had some problem with cramp type pains, especially since the colostomy, i find ibuprofen and a hot water bottle eases it.

    Good luck,

    Margaret.

  • Its a whopper isnt it? The first surgeon I saw kept putting his hands out and saying 'its this size!' with a look of wonder on his face. Im quite tall so i think it has been hiding for a while but it is certainly showing now! I saw it on an ultra sound scan yesterday I think they may need a crane to lift it out! I have been taking some over the counter co-codamol and this is helping. I have worked out that the worst pain is trapped wind probably caused by my bowels being squashed so i am going to get something from the chemist to help with this.

    Thank you for your advice.

    love Jane xx

  • Dear Jane

    I am one of the support line nurses at Ovacome and wonder if you can get in touch with the consultant that you are under to explain the pain you are experiencing as this is new from when you saw the consultant, or discuss with your GP about getting in touch with the gynaecoolgist. If you would like to discuss this further do feel free to give us a ring on 08453710554 Mon- Fri 10-5

    Best Wishes

    Ruth

  • Thanks Ruth,

    I spoke to my oncologist yesterday and he said that if the pain cannot be controlled by ordinary painkillers and i am experiencing any other problems to contact them immediately. He said they would do the op as an emergency. I am feeling much better at the moment taking over the counter pain relief and being careful not to eat too much in one go. I am sleeping better too. My op is on the 23rd so not long now : -)

    love Jane x

  • Dear Jane

    Thanks for your reply

    I would go along with all that your oncologist said and I am glad to hear that the pain is better and is adequately controlled with over the counter pain killers. Don't hesistate to get in touch with them again if it gets worse. If we can help further do let us know

    Best Wishes

    Ruth

  • Hi, Sorry that you are going through this.

    I have just been diagnosed with a mucinous carcinoma tumour.

    Like yourself my stomach was huge, they could not measure it as they had to break the tumour up inside of me. Judging by my weight 2 weeks prior to surgery and 2 weeks after, the tumour weighed in at just under 2 stone, so i can imagine some of the pain you are going through. Prior to the surgery they did not think it was cancerous and measured 90 on malignancy index which normally has to be 200 - 250 to show cancer.

    The pain made me bed ridden for 2 months prior to the op and lots of pain killers. If you are in pain, i would suggest a trip to the GP who will prescribe something for you.

    Needless to say when my biopsy results came it was like having a big fat smack in the face!

    My consultant told me he thinks the cancer came from my gut but a pet/ct scan showed no further cancer in my body, so he is going to treat me for ovarian.

    I will know on Wednesday if i will have chemo for ovarian or a cocktail and ill let you know.

    Im not sure what to expect with the chemo but ill be happy to help if you need anything.

    I really hope that the tumour does not turn out to be cancerous for you.

    xx

  • Hi Kallista,

    thank you for your comment. That must have been awful for you being hopeful that it wasnt malignant and then getting the bad news that it was. I am lucky that I am up and able to move about without too much discomfort. Although yesterday I tried to do without pain relief and got stuck in a car park because it was too painful to reverse my car. This really upset my poor daughter who began crying so for her sake if nothing else I will not neglect to take pain killers again. I have put on 1 and a half st since Christmas so I think the tumour may be that weight. Good luck with your chemo, I hope u dont have too many side effects and most of all it works!

    Love Jane xxxx

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