Hi Everyone. I've just recovered from a C section to remove a 20cm lump on my ovary and the results show a stage 2 cancer within it. My consultant has booked me in for a hysterectomy, ovary, appendix and fatty tissue removal around my bowel (already had fallopian tubes and one ovary removed). Had biopsy's taken from my bowel and throat (waiting for results) and had a CT scan for my pancreas, lungs etc which came back clear.
Does anyone know if it seems likely I'll need chemo after? I know if my consultant can't tell me, I'm asking a stupid question but I wondered if they do it as a bit of a 'belt and braces' measure and I guess I'm trying to prepare myself.
Any advice on keeping positive? I just seem to want to be on my own with the phone off?
Thanks in advance.
Amanda x
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manniemoo
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Sorry you had to join the forum but you have come to the right place! I too had 2 surgeries and they found cancer cells in the cyst on my ovary which was 16cm, after which I had the surgery you are now waiting for. I was Stage 1 but the cells were grade 3 so high grade and because of that eventhough they got all the cancer with the surgery I had to have Chemo. So in answer to your question I don't know if you will have to have Chemo and it's a waiting game until all the results are back and your team have assessed you whether or not you will have to go down that road.
This is a scary time for you and the waiting is just awful! However once your team have a plan for your treatment, even if it does include Chemo, you will feel better that you know what is happening!
I am nearly 6 weeks finished Chemo now and coming out the other side. Chemo is not an easy journey but it is doable so even if you do have to have it you will get through it!
I am sure you will get lots of good advice on this forum there is lots of wisdom here! The very best of luck with everything and keep us all posted!
Thanks D, I'm glad you're coming out the other side! I'm not booked for my surgery until 2nd June and then they will need to test what they remove, the waiting is hideous! I know you're right but I think my head is going to combust with stress!
Oh Amanda I know exactly how you feel! To be honest I never felt anxiety like the anxiety I felt during that time! It does get better as you learn to live with it and I began to learn to live in the moment and actively try not to worry about what was coming. Getting your head into that space does help but as I know you are only too well aware it's easier said than done!!!!
I kept a journal during this time and wrote everything down. You can use the journal too to write down questions that pop into your head to ask your docs so it can help in many ways!!!
It does get better as you get your head around things it doesn't seem as bad as it does initially!
Thank you. x You have no idea how reassuring it is for me to hear the words 'Oh Amanda I know exactly how you feel'.
I'm such a technophobe. I started responding and somehow lost my first reply (which took ages). I don't do facebook or any other social media, I can't even work out how to make sure I've responded to everyone kind enough to give me some of their time on this forum!!!!
I haven't stopped crying or drinking, my poor family don't know how to say to me I'm drinking too much and I am very aware I need to look after myself. I'm very lucky I have an amazing family but I live on my own
Hi Amanda, you've come to the right place to get support.
I can't tell you what will happen, but I'm sure that your surgical team will do as much as they can to make life as easy as poss for you post op, and as little as they need to do, to make sure that the after effects are not too difficult for you to manage. I sure this is no reassurance whatsoever....sorry! I just wanted to say I hope that things are good for you when you get over the op. I'm sure they will do the best they can to make life good for you.
In answer to your chemo question, they seem to give chemo to clear up any residual seeds of the cancer after an op. I hope you won't need it but I think you're wise to prepare yourself for it.
As far as keeping things as positive as you can, you've made a great start by coming onto this site. We often don't want to worry our nearest and dearest with our worries, but here is where we all understand this. Ask anything you like and someone will have experiences and worries that are similar. Tips for keeping positive that have been shared by members in the past are as follows:-
Take things in little chunks of time....a morning, and afternoon an evening. Try to plan a little treat for each of these times, even if it's just to sit quietly and listen to a lovely piece of music or read a magazine or book, get out in the open, go for a little walk and feel the breeze or have a lovely edible or drinkable treat (Prosecco does it for me!)
Don't worry about the bigger picture, let your surgical team and your doctors do this for you for now.
Make contact with your CNS if possible. They're a wonderful source of support.
Join a support group in your area if there is one. They're worth their weight in gold. Ovacome have a list of what there is where you are (ovacome.org.uk)
Take all the offers of help that you can from friends and family.
As far as the op is concerned.....I found the following very useful when I went into hospital:- arnica homeopathic tablets before and after the op. Check with your medical team but I was told they can't do any harm and may help the healing process; mint tea bags for relieving the wind; big knickers and loose trousers!
Take care of yourself before and after the op...light exercise, nourishing healthy food and plenty of rest.
I apologise if this is stating the obvious......you've been through an op before I know.
Above all, good luck. I'm sure all of our good wishes will be going along with you. Do keep in touch and let us know how things are going.
Thanks Wendy for the top tips, I'll certainly try them. It's so hard to stay positive as I'm so angry and appointments and tests takes so long. I guess I should start looking for HRT advice.
If you've been diagnosed with OC they may put in an implant of HRT during the op. That's what happened to me. I felt so, so much better immediately and the op wasn't painful to get over. I was walking a little each day within a week and swimming a few lengths a day after three weeks. I know there are lots of scare stories on the internet but the majority of women get through their op without too much trouble, by the way mine was in 2002 and I'm still NED. There are quite a few of us survivors out there, it's just that you always hear the bad outcomes. Sadly, it can be bad for some women, but it seems that your team has diagnosed your problem sooner rather than later and that's very important. The advice to ring Ruth at Ovacome is great advice, she is wonderful. Take care of yourself xx
Sorry you find yourself in this position, but you have come to the right place for information , advice and above all support and lots of virtual hugs! Can't answer re the chemo and it's best to wait for results rather than try and second guess. One thing I will say is try to stay off the internet, it's a scary place and is full of statistics which are just that, statistics, they can't tell you what will happen to you. Another thing I will say is take each day as it comes, wake up each morning to the thought that here's another day! I was diagnosed stage 3 in October 2007, still here, still working full time, no evidence of disease (which you will see referred to as NED) despite 2 recurrences. I know when you are first diagnosed it's terrifying and I so understand the place you are at right now. Please keep us updated. I have everything crossed for your results. Sending you a big virtual hug. Kathy xxx
Thank you so much for such a positive response, I'm so glad you're NED. I don't think I really understand what my consultant's told me and I'm not sure what to ask!? Why do they talk in a different language?!
Big hugs back at you x
Welcome to the site so sorry you had to join us. I agree you will feel more settled once you have the surgery and a plan in place for any further treatment. As D says chemo is doable. Surgery isnt as bad as you might think either. It is good you have a diagnosis and the next steps are happening although slowly but you will end up with the best possible plan for you. Try and focus on other things before the surgery, give yourself a nice treat or two. If there is a Cancer Support Group near you pop along and introduce yourself. You will find it helpful. Also Ruth the Ovacome Nurse is by the phone should you have any questions that you need help with.
Thanks, I rang Ruth this morning and had a lengthy chat which was very calming. It's so exhausting to have such waves of utter despair and then positivity. Keep thinking I should go for a walk but I just can't seem to get off the sofa! Urgh....
My diagnosis was in Jan and I was angry and desolate. I have so much to see and do yet. Life just coming together for me time. I still get that way but the end of the tunnel of despair is a horrible place and I now stop that from happening. It's very hard but I keep thinking of all the things I'm going to do when chemo and op are over. I was a complete work freak and perfectionist and that stopped me enjoying life. I've changed already. I can't wait to be well and live life to the full. The ladies on here really helped me in January. We all understand the emotions you have xTracey
All just ideas and dreams at the moment. Somewhere hot and relaxing as soon as I am well. Maybe New York for December. Then next year when strength back I would like to go to Canada. This would mean blowing my savings but hey ho! We all need things to look forward to. Go book yours now. Xxx
I am glad you spoke with Ruth and that she was helpful. Take each day as it comes, it is not easy by any means but try and focus on nice things as well as treating yourself, Best wishes
I felt the same after I was first diagnosed last year. Had lots of caring family who wanted to visit and everybody told me to get out as much as possible before the op. No go. Asked family to stay put. Just couldn't face a room full of crying folks as it was tough enough to get through the waiting time as it was. Definitely was not inclined to go travel at that time (not a good idea with the ascites anyway).
This time period is just really tough and I would say try to do whatever you feel like doing. Watching soaps, staring out into a garden, having a Martini etc. If you don't feel like being social, don't.
But believe that you will come out of it again and you will pick up life once more!
Hi, I feel awful but I've started ignoring text messages now! I need to find a way to let people know without going through it 50 times a day, which is difficult as I'm not on Facebook. My boss is wonderful, already had 8 weeks off, couple of weeks before my next surgery and then another 8 off and it's all paid so that is a massive relief.
Thank goodness for Netflix, chocolate and red wine!
Thanks, I will believe and fingers crossed for you too xxx
Dear Amanda, I just found this site too and it's such a relief as dr Google has not helped me at all. Typing survival rates for ovarian cancer at 2am is just dreadful. My large cyst proved to be fallopian and ovarian cancer. It was labelled a stage 2a. Because I'd had breast cancer twice before I was seeing a Gynae oncologist surgeon who removed everything when he operated. But both me and the team were really confident it was a borderline cyst and nothing to worry too much about. I'm 4 weeks post surgery and finally feel so much better. But mentally I'm a mess. I start chemo next week. I've had it before ( though a different type) and felt so rough. Last time I had a 3 year old to look after. This time my boy is 12 and I have a little girl who is 6. My body keeps failing me. This is a 3rd 'new' cancer in 10 years. I'm bad tempered, shouty and a horrible mum. Plus my husband works away from home during the week. Friends are amazing but ..
I'm sorry. I feel like I've hijacked your question. I think the other ladies are right to suggest you prepare for chemo. It was the only option I was given. Though the Drs believe they have removed the cancer they keep talking about stray cells. We have to put our trust in them medically.
I'm scared. I start my day calm and then finish it in a state of anxiety. I need to try and find a calm path. Any advice would be gratefully received.
If only there were a magic calming pill huh, we'd be millionaires! I like you start the day (like this beautiful morning) feeling hopeful and positive and as the day passes, feel more and more scared. (I had no idea admitting to my family and friends that I was scared would be so hard or maybe that was to myself??). My jogging stuff is by the front door and I just can't seem to muster the energy to go for a walk with a bit of jogging thrown in and I used to get so much from exercise.
I've also learnt Dr Google is not our friend, even though everyone told me not to ask him I obviously did. What a wally!!
Have you been told what to expect from this different chemo to the other one?
I can't give you any words of wisdom on anything really but about being bad tempered and shouty, I'm exactly the same!!! My poor gorgeous wonderful perfect Mum gets it all and I can see her trying desperately to say the right thing always. She did help immensely yesterday by suggesting a mini break before my next op which took my mind off things a lot. Maybe you need a day trip with the kids or something to channel the bad thoughts in to? I am no expert and we seem in exactly the same boat so you are not alone.
Dear Amanda, thanks do much for replying. I just changed emails as my husband and I share the old account. So hopefully this message will arrive and I haven't messed up. I can't tell you how happy I am that you are shouty too. I thought I was being so hopeless. One moment Its calm and then the kids or husband say something and I'm yelling. It's just horrible.
I have never run but I am determined that I shall walk around more. So good for you to keep running stuff by the door. It has a chance of being used if it's there doesn't it?
The chemo is different this time. But hairloss and nausea common side effects. I've been told it's caroboplatin and taxol. The problem last time was my white blood cells were wiped out and I kept being hospitalised with infections. How can I look after the kids if I'm in hospital? This is the big worry that keeps me up at night. Friends are great at offering help with school pick ups but what happens at 10pm if I get a temperature and have to head to hospital? I guess I'll just have to call a neighbour and they'll stay with the kids while I get a taxi. I know it's nuts worrying about this stuff but I can't process the bigger picture that I have cancer again.
Your mum sounds lovely. While the break sounds like a good idea. When will you be seeing your doctors next ? I am accepting of the treatment because I know what they want to do and when it starts. I was very anxious when I was having the tests and waiting to hear when the operation was.
My husband is planning a day out to London on Sunday with the kids to eat Chinese food and look around. This will be my mini break!
To be fair, my sister and hubby have 'moments' with their 9 & 12 year old boys and they aren't ill. I'm no expert, I was never lucky enough to have children but I see mums and dads losing it all the time with their kids. It's not what you want to do but it's just normal isn't it?
I have a friend who guilted me into doning my lycra yesterday and it was the best thing that happened to me in a long while. Funnily enough it wasn't the jogging that helped more, it was the music. I can't stop you worrying but I definitely recommend a walk in the park or sitting in your front room with some of your favourite music. It reset me for a while!!
My OP isn't until 2nd June, pre OP appointment on the 25th May so WAY too much time to think about things. Urgh. More than that, I think my Mum needs a break-bless her.
If you've got the day to yourself Sunday, you really need to plan lots of lovely things. A back massage, shopping, lunch, pedicure, MUSIC and a book?? And I mean all of them!!
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