Just starting my journey

Hi lovely ladies had my first appointment with my gynae oncologist today, been told I need a complete hysterectomy and omentum removing. I need to have a CT scan in the next week and then will be discussed at MDt and referred for the surgery. He was lovely and said he believes my cancer is contained within my ovary looking at my ultrasound results but can't say for sure until after surgery. He couldn't tell me when that might be.

Initially I was a bit reassured by this but am worrying that if I have to wait things may deteriorate. He told me my 'cyst' is the size of an orange! Now I know why I feel so uncomfortable.

Can anyone advise how long they waited before their surgery so I have an idea of normal time scales? I had a holiday booked for 7th July for 10 days and he said I should be ok to go and have surgery afterwards but I'd rather not have a holiday and get this thing out of me as soon as possible.

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  • Unfortunately, things tend to be slow. My mom got diagnosed December 21st, 2016; however she needed neo-adjuvant chemotherapy before they could operate. They also told her she would die within the year if she didn't get treatment. Who tells someone that, and proceed to make them wait 6 weeks for treatment! I was so pissed. She didn't start chemo until mid February.

    I don't know why doctors/teams give you a bomb shell and then take forever moving onto the treatment plan. Unfortunately, given what your doctor said, it'll still be a while until your surgery, so I would try to enjoy your holiday!

  • Dear kristinaapril thank you for your reply. It's been torture waiting for this appointment with everything going through my head!

    Your poor mum and you!! That must of been the worse waiting for the treatment to begin! Hope your mum is bearing up and you too x

    I just can't focus on anything else at the moment and trying to concentrate at work has been almost impossible these last few weeks!

    The consultant today told me to stay positive and I'm really trying but the waiting game is something I'm not finding easy to deal with

    Good luck with your mum and sending you lots of hugs xxx

  • Hi Beewild and welcome!

    I think it is reasonable to ask how long you must wait for surgery. Once the MDT have agreed that surgery is the right option things should move quite quickly. Get a contact number- the doctors secretary or a CNS and be prepared to ring for updates.

    Although I had chemo first and surgery second I can understand that you don't want any delay. Many ladies on here have found they need to be persistent ( rather than pushy)! Best of luck xx

  • Thank you Lyndy the consultant was lovely but did say if I don't get my CT scan by Monday then will have to wait another week for the MDT to discuss!

    If I haven't heard about my CT scan by Friday I will take your good advise and ring to see what's happening

    Waiting a day is like waiting a week to me at the moment I just want this sorting asap.

    I just feel I've been given this frightening diagnosis and although clinically things have started to happen emotionally I've been left to deal with it. I'm divorced and don't want to talk to my adult kids too much about my fears as I want to be positive around them

    Finding this forum has been such a help and You ladies are so inspiring

    I hope you are doing well now x

  • If it helps to know, my tumour was 9cm in May but was not noticed on a CT scan. It took until July/August before it got seen on an ultrasound. Surgery was eventually September 29th. Post surgery results were a 14cm growth, but good news, it was contained stage 1. So despite my quite extended delay, it had not spread. Hope this helps you feel less worried about the wait.

    Take care and hope you get the best possible results xxx

  • That's such good news for you yewbarrow and thank you for your reply x

    I think I've just gone into panic mode over the past few weeks but your reply has made me feel more reassured that waiting a while won't necessarily make things worse .

    Wow 14cm is big mines about 9 and it's so uncomfortable at times!

    So pleased yours was a contained OC if that's not a silly thing to say, I'm sure everyone on here would rather not have OC at all whatever grade xx

    Thank you again

  • I was lucky.........if you can call it that! From going to my gp I had an ultra sound, blood test, saw two consultants, had mri and ct all within a month. two weeks later I had a hysterectomy, six weeks after that I started chemo. I have been all clear since March, though annoyingly now developed lymphoedema in my left leg. Good luck with your journey. x

  • Ist ultrascan 21st Jan 2016 ( 10x8x6) followed by more CT scans which showed multi walled tumour and then another MRI. Surgery on 8th March . They do the scans they have to, to get the information they need . You just have a remain as calm as possible and find a good book! After the Op rest rest and more rest. It's major abdominal surgery - pain for about a week then that calms down. But you don't do.anything- no lifting. No stretching nothing !! You need to.heal.

    Thinking of you

    Clare xx

  • I had to wait a month for surgery here in Australia (could have been done in a week if prepared to go private). I was assured by my medical team that it wouldn't make any difference to the outcome. I took the opportunity to garden like crazy, keep fit and do lots of stuff that I knew I wouldn't be able too once in recovery - too preoccupied to notice the wait!

    I hope all goes well for you, try not get too anxious, best wishes Dawn

  • I thought the same but wasn't lucky enough to have a holiday booked! Being realistic by the time the MDT have met, the scan has been analysed/discussed, the bloods checked, kidney test done if you need it and the surgery date booked I very much doubt you will have any action on surgery until after your holiday. A wait is torture but they will remove anything suspicious so don't worry about it spreading. I'm no expert but I doubt a couple of weeks will make a difference to spread.

    X

  • Was diagnosed at the end of February 2016 Surgery was April 5, 2016. Unfortunately, these doctors are booked many weeks ahead. If you have shared your concern with him that you would rather not wait, then it will be to the scheduling nurse to see how soon they can get you set up. The good news is too that he doesn't see it as an emergency situation and that you can still travel. If they can't get you in any earlier, planning for the trip etc will be a good distractor. I traveled to see my daughter, about 12-hour drive and did just fine hindsight, I am even more pleased that I traveled. Gave me something to focus on and talk about when visitors came to see me.

    Wishing you a quick resolution to your scheduling.

  • Thank you to all you brave ladies for sharing your stories and I hope each and every one of you are doing ok xx

    I feel calmer having read your stories and I'm sure the panic of the last few weeks will ease once I know what's what and have had the CT etc. The waiting is agony but you're all so right I need to focus on something else and distract myself .

    You are all amazing and thank you for your replies I'm so glad I've found this site. Will let you know how I'm getting along

    Sending you all positive hugs xx

  • Once I had had my appointment with the surgeon it was two weeks to surgery, my tumour was the size of a basketball so it was interesting and such a relief for it to be gone. My surgical appointment was 6 weeks from initial appointment with my GP. The waiting seems interminable but you'll soon get there, if they're happy for you to have your holiday I'd go and get some sun as the arrangements can take quite some time as quite a few teams are involved and they have to coordinate your care. Take lots of care ❤️Xx Jane

  • Thanks cropcrop that's reassuring x I'm having up and down times but have my CT on Tuesday I'm scared about what it might show but know it has to be done and then I need to get on with beating this!

    I just can't seem to get comfy over the past few days and the anti inflammatory I've been taking is now giving me heartburn! Anyone recommend good techniques for pain relief or something that doesn't bung you up?

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