Quietly Terrified

Hi all, I am going to see the specialist at the hospital today for the first time since my scan results.  

Having finally got to see the doctor following months of vague symptoms, weight gain and severe abdominal distention I was sent for an urgent blood test.  CA125 raised at 65 so concerned, but not overly.  Had a scan just over a week ago and was stunned to find I have a tumour of 'at least' 28 x 28 x 20!  It makes you wonder how it is even possible to be walking around, working and living life with something of that size inside you!  Radiologist's report says ovaries are completely obscured and it is 'highly suspicious' of ovarian cancer.

I have had just over a week of quiet terror since then, waiting for this morning's appointment.  I doubt that she will be able to tell me very much today as I haven't had any other tests since, however due to my immense size now, extreme pain and total fatigue I am hoping they will suggest surgery asap.  

Anyway, I just needed to share x

Have a good day lovely people xx

15 Replies

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  • Hello Martha! 

    I was just like you some months ago! Mine was smaller at 16cm but none the less I too couldn't understand how I had something of that size inside me and not really know anything about it!!! After 2 surgeries and Chemo I am now coming out the other side and no matter what they tell you today look to the other side and you will get there! This board has been a lifeline for me with all the wonderful wisdom of the ladies here so keep in touch! 

    I wish you the very very best of luck today and I am sure that your team will come up with a plan that will address everything head on!!! I hope that it turns out to be just a nasty cyst but even if it doesn't know that there are many options and your team will take care of you and make sure you are presented with the best options for you! 

    Good luck and keep in touch!

    Dx

  • Thank you x  I have 'prepared myself' (I know that is impossible really), for all possible scenarios.  I am more worried that today will just be a routine touching base and meeting me situation and that I still have weeks of feeling this awful healthwise and in limbo mentally to come.  I was told by my doctor after the scan that I would be having CT/MRI or similar urgently, but haven't heard anything from them so I don't see what more can be known.  I am having excessive pain, great difficulty moving around and tired to the bone if I try and do even the gentlest things for an hour or more.

    The 'thing' is from just below my rib cage to my pelvis and the pains are in the centre of my right hand side.  Everyone is being wonderful, I am starting to bore myself though!

    Thank you for the contact.  I should be having a shower and getting ready, but I am rooted to the bed!

    xx

  • The wait can be hard so feel free to write here we are all here for you and have gone  through it. Make sure after all the waiting and testing that you now push for answers as soon as possible so a plan is made for you if it is Ovarian Cancer. Wishing you all the best x Trish 

  • Oh best of luck today Marthasperson..hoping you won't need us but we are here for you if you do. Xxx Lyndall

  • My thoughts are with its hard but once you know everything you cope.love Granis xxx

  • Hi Martha,

    Wishing you well,the waiting is always the worst as is the unknown.

    I think we would all agree when a plan is in place you get yourself in battle mode and all is good.

    Let us know how you get on and the ladies here are always there to support and give good advice, this website is a supportive lifeline,

    Best wishes

    Carole xxx

  • Well, as I thought nothing really happened in today's consultation.  The consultant was lovely, but there was no examination of any kind, which I guess I had thought would happen.  That said, as I appear to all intents and purposes to be pregnant with twins at full term (that coming from my best friend who has HAD twins!), I guess she didn't really need to.

    She said they are going to discuss my case at the MDT meeting on Friday (today) and that she is ordering a CT to see if the tumour appears malignant or has spread.  Asked for permission to have dialogue via telephone to cut down any waiting times.  She also said that any treatment I have is likely to be in St James' hospital in Leeds, which is the specialist gynae oncology centre for our area.

    She brought up the possibility of it being a sarcoma of the uterine muscle by saying if it were that it would be significantly more tricky: Seemed liked a pretty specific possibility to bring up if it isn't relevant.  Who knows?

    I am completely exhausted, frustrated and concerned.  I feel like such a massive wimp for going on and on about this when I don't even know exactly what is wrong, if anything.  Well, clearly something is wrong - as she said, the tumour is like having a full size ruler squared in my abdomen.  I mentioned something about surgery and she said, 'If necessary' or something similar - This has worried me as clearly they can't leave it in there!

    God I hate this.  I am not used to feeling weak and vulnerable like this - I am always the strong and positive one.  I hate night time too.

    Thank you for listening xx

  • Hi Martha. Just sending you a big hug and to tell you that we've all felt like you at some point. But once you have a plan (no matter what it is) you will feel much better. And if it is cancer, you will revert back to the strong and positive you and deal with it amazingly. 

    Keep us updated and post on here anytime if you need to offload.

    Love M. B xxx

  • Thank you xxx

  • I'm sorry to hear your news. You are and will still be the same strong person you have always been. It's just so frightening when the medics start talking about things we know nothing about. They always sound so matter of fact about it all. Once you know precisely what the problem is you will find your mental strength returning and you will start to have some control over what is happening. Fear of the Unknown is always the worst. It might not seem like it at the moment but you will cope with this,somehow an inner strength is there. Wishing you all the best and sending you lots of virtual hugs xx

  • Thank you for taking the time to respond xx  It's the human contact and understanding that makes all of the difference isn't it xx

  • It's frustrating for you however now you are on the 'books' of the MDT and that is great. Your cyst is so much larger than mine was and I didn't have any bloating so I feel for you having these additional issues. Mine was a complex mass on my left ovary - see my profile for my story. I had to go through a series of fast track scans all under the cancer timeline so with pin two weeks for each one. First scan in January and surgery on 8th March, chemo started on 5th .april to give abdomen a chance to heal. You will soon have a plan and if there are more scans or tests needed it will for a good reason to give the team as much detail and info as possible beforehand. Remember to ask and keep asking if you are not sure, to ring the Clinical nurse or oncologist if you need more detail and there is always Ruth the ova are nurse on this site too.

    Sending positive thoughts, virtual hugs to you, take care and keep us informed.

    Clare 

  • Within two weeks not pin two weeks!

  • This time a year ago I had a huge ovarian tumour , it was 35 cm by 35 cm, by the time it was removed. Mine was a Granulosa stem cell tumour, quite a rare tumour.  From about April to June it really grew quickly. Like you, I kept on with life as 'normal' right up to a week before surgery but I was very fatigued, couldn't keep any food down and kept getting bladder infections.  I was living in fear all the time. Surgery to remove the tumour, total hysterectomy, omentum, about 8 fibroids and appendix but no chemo (all the cancer was in the tumour) was successful. It is almost a year later, I am fit and healthy ( and also quite slim!!). Obviously, I get anxious before the regular check ups, but the nightmare is just about over.  You should find that after the MDT things will progress quickly and your treatment plan will be set out. I will be forever grateful to my surgeon, it is amazing what can be done. I know it is hard not to panic but you will get through this. I know it sounds like a cliché but I believe inner strength helps us through x

  • I was in the same position as you nearly 2 years ago. My local hospital were pessimistic - no gyne-onc - and when I asked about surgery the CNS said 'No, it will be chemo.' Fortunately I was transferred to a major cancer centre where the consultant - from the same scans and an 'inconclusive' biopsy - said he thought it was benign and would be operating in 13 days time. Ca125 of 130.

    He was right. A 22cm Borderline tumour, weighing 2 kilos. 'Cured by surgery'. Just to give you some hope and fingers crossed you will be as lucky as I was.

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