ovarian debulking surgery advice please!!

hi all I'm new to the site, I have recently been diagnosed with possible ovarian cancer they wont be 100% sure until they take the mass that is the size of a small caser out which is attached to my ovarie as well as my ovaries some of the stomach lining as well as various other bits . There not sure whether it has attached to the bowel area or the bladder. I'm currently waiting surgery within the next two weeks and I'm absolutely petrified of the thought of the surgery. I think I can deal with it if its cancer, but I'm terrified of not coming round after wards and of what I will come round too. The gynae oncologist has assigned a MacMillan nurse to me which tells me they think its cancer but at what stage I don't know yet. I have had the booklet explaining the surgery and what to expect afterwards but reading it and coming round to it are two different things. I have had partial hysterectomy some 10 years ago but they left my ovaries in . They have said if it test positive for cancer that my chemo will start 4 weeks later .I am currently experiencing severe back and tummy ache sickness and headaches as well as fatigue. My question is can anyone tell me what to expect from surgery, recovery time and how you coped when you got home . I feel like shouldn't be on here because I have not been given a firm diagnosis yet but needed to ask some questions. I hope I don't upset anyone as it is not my intention. I would be extremely grateful of any feed back. My best wishes to you all .xxxxx

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  • Hi I am newish to the site too and found out this week that I, like you, have to gave surgery on 19th August. I have the same fears as you and desperately want to hear others comments. Am sure the lovely ladies can help us.

  • hi jillwendy, sorry to hear you are in the same boat as me so's to speak. I too hope these lovely ladies will help us. I'm still waiting for surgery date. I know all the doctors involved are having the big discussion today regarding my surgery then will get my appointment to see my surgeon. They have told me latest will be end of August . So preparing for then could be sooner. I wish you all the very best for the op and hope you have a speedy recovery, stay in contact and let me know how your getting on . big hugs xx

  • Will do. I am pretty scared but the chatter from all the ladies on the site really helps me stay positive. You must be feeling the same but we must fight and stay positive together. We will win. Twke care and let me know when you get a date.

    Jill x

  • you too and I will let you know when my d\ate comes through. hugs xx

  • Hi

    Please don't feel bad for being here- we have all been where you are facing the uncertainty of surgery/diagnosis etc. I had my big op back in March, went to theatre about 3pm and was back on the ward about 8pm I think. They manage the pain incredibly well- I woke up with a catheter and a tube going into my stomach which I think shocked my husband a bit! You'll have a pump to administer pain killers which I found was enough. The next day they de-tubed me and made me get out of bed. I thought this was really mean but in hindsight it was the best thing -getting mobile again is very important. Again they kept me well stocked on pain killers. I spent 3 nights in hospital in total. I had a drugstores worth of meds to go home with!! For the first few days moving was tough - I found I couldn't stand up straight for a while. But after a week I was feeling much better and back driving after 3 (not sure this was really allowed but I needed to escape). They give you lots of advice but the most important ones are don't lift anything and take it very easy.

    It is a big op but it was nothing like as awful as I had imagined.

    Sorry rather a long reply but I hope everything goes well for you.

    Claire

  • Sorry to hear your news, the problem is that everyone is differant. In Sandra,s case she only discovered when a groin hernia turned out to be ovarian cancer that had spread to a lymph node in her groin. The surgeon who was doing the hernia repair had the good sense to remove the tumour, immediate scan same day and confirmation oif the disease 2 weeks later. Like many ladies she underwent chemo first before the laparotomy to remove her ovaries, part of bowel and other bits from the womb pelvic area. Some ladies like yourself have surgery first probably due to the size of the mass and the uncertainty if it is cancer or not.

    The surgery should go without a hitch and you could be home within 3 days. Its important to rest for 6weeks post surgery even though you may feel strong sooner. Your insides can take time to heal.

    Plenty of ladies will soon pass on their experiences. Try and not worry, its good its being dealt in a timely manner and even if benign, better out than in.

    If it is cancer, they should tell you stage and grade. You should also ask for the result of a blood test called CA125. This can give an indication on how well the chemo is working. Best of luck, love Paul xx

  • Hi Welcome to the club that no one wants to join, of course you have a right to be on here it must be a big worry for you, the surgery isn't as bad as what you think, you will need to rest and not carry heavy things also not do much stretching like putting washing on the line, because you don't want to develop and incisional hernia ( like I have) you will get a lot of support on here, and I sincerely hope that after surgery that the outcome is good best wishes love x G x

  • thank you all for your kind words of support and accepting me on the site, I am hoping it isn't cancer but if it is I will fight it. I am just so scared of the surgery. some of you said 3 days home after surgery the gynae and Macmillan nurse have said 5 to 10 days is this just a guide then? I also suffer with Rheumatoid arthritis 90% of my joints are effected without treatment and they have had to stop my treatment as it dampens my immune system . So have the pain of that on top of this news . I hope you are all doing well and wish you a speedy recovery. big hugs xxx

  • Hello, Brunette, and welcome. I completely understand your fear of surgery as I felt exactly the same, but the good news is - it wasn't nearly as bad as I thought it was going to be. When I came round from the anaesthetic I was pain free, had no sickness or nausea, and really felt quite cheerful.

    I had a catheter, which wasn't at all uncomfortable, and also an epidural for pain relief, which together with pain relief in pill form, kept me reasonably comfortable - and I speak as a devout practising coward!

    I was in hospital for five days.

    After I got home, I had a problem with constipation, which the District Nurse sorted out for me. She also arranged for me to have a grab bar to help me get out of bed; I didn't think I needed one, but I was wrong, and it was great help.

    There is some very good advice on here regarding not doing too much for 6 weeks and no lifting of anything heavy for at least three months.

    Wishing you the very best of luck

    Jill xx

  • If its any help I also have R/A for many years, if you have to have chemo, depending which one you get a big bag of steriods before your chemo,Its wonderful, its a bigger boost than your medication. This has been one of the upside of OC for me. We have to get something good from this disease.

    The other ladies have explained what will happen after surgery. It is important to take it easy.

    Regards Barbara.

  • Don't ever worry about being here without a firm diagnosis of OC. This site is for everyone impacted by the disease and that includes those with the worry that it might be OC. In fact I am sure a lot would agree that the period prior to diagnosis is one of the worst parts of their journey. My wife Angie often recalls feeling a relief once her diagnosis was confirmed! Crazy as that may seem, at least then she knew what she was dealing with and this site was invaluable to her.

    I know lots of the wonderful ladies here will soon be along to offer wise words about their own experience, ask anything... there is always someone who has been there and are happy to help.

    I really hope your concerns turn out to be unfounded and the result is benign. If not, we are all here to help you understand more about the disease and its treatment. If you have a partner to help at home all the better. Best to start their housework training now! ;-)

    Best wishes

    Andy x

  • Thank you Andy I appreciate your words of support. A little bit of me hopes they have it wrong but I have been told by my consultant its a high chance of it being cancer. Its ok I would rather prepare for the worst news then it wont be a shock to the system I would be ready for it well as much as possible and then if its good news well I will probably shout from the roof tops . My hubby has already started his housework training he put the oven on the other night or so he thought he'd actually put the grill on and nearly set the pan alight lol so this will be interesting bless him lol. He is a little out of practise as my Rheumatoid Arthritis has been good for a while and not needed so much help due to my treatment but that has had to stop for a while till this is sorted so that will flare up too now. thank you again and for your well wishes I will let you know how I get on xx

  • Hi girls

    I hope and pray that your surgeries go well. My own experience of a radical hysterectomy went very well. They give excellent pain control. Keep asking for it and keep taking it while you are in hospital. I found that getting up as soon as i was able and walking around every hour or so really helped me. The hardest part for me was bowel movements. Waiting for that first one post op felt like an eternity!! I found nice veg soups and fruit smoothies very helpful - not on the hospital menu but kindly brought in for me!! Aside from that - distract yourself as much as possible until you get the pathology reports and I would recommend asking for a copy of that report for yourselves too. Good luck with everything. X

  • Hi to you Brunette and also to Jill, it sounds odd to say it but I am glad you are here. I don't think there is anywhere else with the combined experiential wisdom of these ladies and the odd hubby or three, each of whom have been there through thick, thin and baldness. So you can be sure of good advice.

    Although one of your surgeries isn't a full hysterectomy I doubt the experience will be less even so. You both have a major op to prepare for and much of it is preparing for the doing NOTHING afterwards. Plan ahead! Husband training sounds like an absolutely excellent idea...

    You do have the immediate aftermath to deal with, but the morphine control is useful and you don't need to worry about pain, per se - they are wonderful at topping you up so you have a constant 24hour around regime. The worst bit, to be honest, is the terrible wind... Something about large scale abdominal surgery makes this particularly prevalent.

    The surgical menopause is fun, depending on your age of course! and there are lots of cooling down tips to be had here if you need them. Jill, you will need to gear up for doing pelvic floor exercises too, after they whip out the lot. It's important to get that core strength back. But you don't need to worry about that yet...

    Look forward to getting to know you

    Love

    Sue xxx

  • Hi both, Don't forget nightshirts or nighties.. not pyjamas, hope you can find something cool for the summer as I had my op

    in winter and wore primark nightshirts. Also you will need

    'big knickers' as you don't want anything too clingy, and my

    remedy for wind after op is only drink peppermint tea in

    hospital.I took a large supply of tea bags and shared them

    with the other ladies in my room...must say it did the trick for

    them. Don't worry about the op, as said before by others

    it isn't as painful as you may think because the morphine

    really does the trick...the only pain I felt was like a period pain

    but the nurses keep topping you up with other drugs.

    Take care

    Angie xx

  • Dear Brunette

    I'm glad you've found us before having to deal with the worry about surgery and all that. The surgery is fine. You just have to relax and you go to sleep whilst the surgical team do their job. Everyone responds differently on waking up. I observed some women just wanted to lie quietly for a while and others were up and about in a matter of a couple of hours. You just need to do whatever suits you. The surgery really isn't anything to worry about at all even though it might seem like a big deal.

    You've had great advice from other people here. Peppermint drinks help with the wind. It is a bit of a bummer but not intolerable. I was told the best remedy for wind is to walk so it might be an idea to spend some of the visiting times hanging on to someone and doing a bit of walking rather than lolling round in the hospital bed. I found I needed to plan the day and limit visits as they were exhausting. Something else I found very positive was packing some loose-fitting day clothes to wear in the day. It just made me feel less of a patient/victim and meant I could walk out of the ward and sit on a bench in the garden to get some fresh air. The advice on nighties is also spot-on for the first day or so as you'll have a catheter.

    Hopefully the friendship and support on this forum will help you prepare for surgery. Keep posting and we'll do our best to help. xxxxx

    Loads of love Annie xx

  • Thank you all for the greatly received advice and support you have all been very kind and most helpful . I will go tomorrow to purchase my nighties and peppermint tea, so that I am well stocked . I'm hoping my fears subside by the time I go into hospital and your advice and support has helped towards calming me down thank you all so much. I hope you are all recovering well and not in pain. I will let you all know how I get on best wishes xxxx

  • please forgive me I have not put my name, my mind is not thinking properly yet it seems to be in turmoil at present. My name is Helena and I'm very pleased to meet you all and very appreciative of your support and help. love and kindest regards Helena xxx

  • I felt like you, in fact I insisted we wrote our wills before my treatment, convinced that I wouldn't wake up. I had no idea it was cancer, all the signs pointed to a simple cyst. So had conservative surgery of cyst ovary and tube. The second operation wasn't too bad because I did wake up the first time so felt better about the second time.

    I found that toothpaste was a must because your mouth tastes yuk after and warn your visitors that you will probably keep nodding off, I made mine promise to stay with me while I slept lol, when I woke up once my husband was snoring in the chair - oops!

    Your fears are natural, when we place ourselves into someone else's care we hand over an amount of trust. I told my anesthetist all my worries and he reassured me no end, he said it was in his best interest for me to wake up too, and I kind of get that lol.

    Good luck

    LA xx

  • Hi Brunette sorry you are feeling so fearful before your op, I found the fear and worry before so much worse than the actual surgery. I was 69 when I had total hysterectomy and removal of tumour which turned out far less painful than I had imagined, I even had problems not doing things as I felt I could. This site has also helped with my ongoing journey, look forward to hearing from you in the future. Lol Btte x

  • Dear ladies,

    There's not much to add to the fantastic advice above, it honestly isn't as bad as we think it will be, just wanted to say good luck and welcome, this site is a godsend and I don't know what I would do without all the love and support xxx

  • Hi there Helena

    There is a brilliant website called the hysterectomy forum that has lots of practical advice ....ok you had a hysterectomy already but you are still having a big operation , so some of what is on this site is relevant. Down the page there are monthly clubs which you can join and make contact with people bein operate on the same month and even day a you.

    I also had second operation a few months after the hysterectomy. This was no picnic , but it is honestly doable. When cancer is suspected ....and please be sure that things that seem like cancer sometimes are not ....staff tend to give you that extra bit of tlc. My surgeons were adamant beforehand that I had a simple cyst, it was actually a borderline tumour. ...so please bear in mind that this might not be anything at all.

    I see that you have a little furry friend called Pip....we also had a little Cavalier that never left my side for a minute whilst I was recovering. I am sure that Pip will also be wonderful.

    Do take care of yourself....sorry if I have rambled on.

    Charlie xxxxxx

  • Thank you to LA, BTTE,TROLLEY DOLLY, CHARLIE for your support and advice very kind. I have calmed down a bit now after reading all the lovely advice and support everyone has given me . sorry I haven't been on, lots of hospital appointments as well as scans not just for the suspected cancer but for my RA as well I tend to become very tired from all these so please forgive me for not replying sooner. I am still nervous but have concentrated on preparing for the op by getting my bag ready and questions as well as having my bedroom decorated hubbys idea lol for when I have to spend time in there . I am trying not to think about it now till the day so trying to stay busy I should get my date next week for surgery and will be glad when its over and that horrible mass is removed then I can concentrate on getting better. My son has said he will pay for me and my hubby to go for two weeks abroad next year for a belated 50th birthday present for me as a surprise all inclusive as i wont be well enough to go on my birthday in November so I am eager to get better cant wait. So that's something to look forward to. I hope you are all doing well and pain free thanks again for your kind support keep in touch Lena xxx

  • Hi there. I am also very new to this site and have asked my questions. I had major debunking surgery last November, leaving me with a permanent colostomy! I was in surgery for over 11 Hours with a team of 7 working on me. It took me by surprise as I was not expecting this. The best advice is to follow whatever the hospital tells you to do, walk up and down the ward, drink plenty of water, take your meds, talk to staff and other patients, but above all BE POSITIVE. Look after your scar by daily cleansing with salt water and creams. It will get better. I am now facing 2nd one treatment with more chemotherapy :( but I am remaining positive and I WILL BEAT THIS DISEASE. Good luck with your surgery.

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