New to this and panic has set in

On Friday 5th Oct, I was called in to see my consultant, I had a unilateral salpingo oophorectomy and cyst removal on 17th Sept, it was expected to be benign, I keyhole surgery went home in two days, and the consultant told me he had a goo dlook about and everything looked okay, the CT scan showed no problems and my bloods were fine for CVA. He said he would send me the lab report and didn't expect to see me again, yet even when I was sent an appointment I still didn't twig!

Biopsy showed stage 1a, he wants to do a hysterectomy followed by 6 cycles of chemo, but is prepared to just do chemo if that's what I want, he has booked me an operation date for 17th oct but has put me under no pressure. He had wanted to do a full hysterectomy to start with but I was convinced the signs were it wasn't serious. Now it's a second op.

So history dealt with, now, the questions, he wants me to have a CT chest scan on 16th, why a chest scan? He wants to remove my cervix, I want to keep it, should I? My poor hubby we've only been married 3 years, how have the men coped?

LA

11 Replies

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  • Hi Lily-Anne

    That is an awful lot for you to deal with right now. I would guess you are still young, maybe not yet with children? I would recommend giving the Ovacome helpline nurse, Ruth, a ring in the morning, after 10:00 and before 17:00. It is staffed by nurses and they are so experienced and can give you some answers. ThenOvacome website may givebyounsome answers too, in the factsheet section.

    Take a few days before coming to any conclusions. Talk to your husband about the options. Mine coped absolutely magnificently and still is my best friend and main support, but we are a lot older than you. We never had any children. I am sure yours will be More wonderful than you can imagine.

    You will get through this. The main thing is, they have caught it early and treatment is effective when they have diagnosed early. This site is a wonderful support. You can ask anything!

    All the best. You have taken the first step in coming to terms with what is happening. Welcome to the club. ........that no-one wants to join ;-)

    Love Wendy xx

  • Not that young, I do have children from a previous marraige, telling them was awful as they lost their brother a couple of years ago, but am not at the menopause stage. I'm so confused by conflicting info, particularly about clear cell cancer. Just one of us working is a problem, I've had three weeks off and now I have to have more time, as we are both self-employed it feels like more to worry about. I spent two days thinking about how to avoid more surgery, now I'm pretty convinced don't risk it just do it.

    I will call Ruth, have been researching until I'm exhausted.

    Thanks for your advice

    LA

  • I saw your post last night and really wanted to reply there and then but was concerned about adding any stress to your situation. I think Wendy's suggestion that you talk things through with Ruth is spot on - but if after that you still want to chew things over, please message me privately. I too had strong views about the surgical aspects, and continue to do so many years later. I don't know if my perspective will help but I am happy to share my views if you think it would help.

  • Hello LA.

    Your case sounds just like mine i had my ovary removed only to he tokd i needed further treatment and chemo. Im only 38 so this was huge for me i was devasted. But my hubny said i had to think about the future. So j had the hystetectomy and sux cycles of chemo. Had the last one in narch this year and touch wood apart from a few sise effects and emotional probjems im fine.. Do what your heart tells you be strong and hold your head high. You will get no measure of amount if support on this site the women on here are amazing.

    Please keep in touch let us know how you get on.

    Lots of love

    Suzanne. Xxx

  • Dear Lily-Anne,

    You've had so much to deal with and a very short time to process it all. Sometimes we want to research and understand everything we can but it's almost too much to deal with all at once.

    You're asking all the right questions, and it does seem your oncologist is being very thorough. Luckily the cancer has been caught at the earliest stages when the prognosis is generally very good indeed. What I would say is ask what makes your surgeon worry about the cancer developing. Perhaps he feels it's an aggressive type that is best 'knocked on the head'. I think you will also find much support and help from Ruth at Ovacome. She's incredibly knowledgeable and it may well be it's easier to ask some of your questions on the phone in the confidence that another woman will completely understand where you're coming from.

    I had major surgery including the removal of the cervix. The outcome is that it does complicate having sexual intercourse to some extent but that's manageable. My greatest fear reading your blog was the same as Wendy - that you may not have had children and this might be a factor in wanting to avoid a total hysterectomy. I can't tell you how relieved I was to know that you do have children and that they are obviously old enough to understand and to be supportive.

    I was married last year after my diagnosis. We feared the worst and wanted to seal our relationship. It was the best thing I've ever done. I think you need to see the oncologist together and then talk a lot to your husband about this operation and how it will affect you both personally. I know there will be a few friends on this site reading this and wishing their husbands were a bit more supportive and understanding than they are.

    As you see already there are very different approaches to all this. It's going to be helpful for you to hear both sides of the argument re surgery. I, for one, haven't looked back but then I was rolling round the floor in agony so I didn't have much choice. I've made a great recovery and have felt brilliant ever since.

    We're always here to offer support so keep posting if you're worried about something.

    love Annie x

  • Hi LA

    Sorry to hear of your troubles. This is my opinion only.... but I would go ahead with

    your surgeons advice. I do think they have the experience of these problems and I

    don't think they would do any surgery that wasn't necessary. Also chemo is extra

    protection to clear any cancer cells out of your body. Do give the Ovacome helpline

    nurse a ring though as she will be able to help you more.

    Keep in touch and let us know how you are doing.

    Lots of Love

    Angie xx

  • Hi Lily-Anne,

    I know it's a shock at first, things do get calmer with time! I was diagnosed four years at 42 yrs with 1c clear cell in one ovary and endometrioid in the other. I had no choice but to have emergency surgery as I had the clear cell in a massive cyst which was blocking everything in my abdomen. I said goodbye to many body parts including cervix and manage intercourse fine with daily Replens and adjustment of certain positions!The diagnosis was a shock as the surgeon thought it was all down to endometriosis during the surgery and I went to the hospital on my own for what I thought was a follow up appt!

    The oncologist when I saw him the next week was quite firm about the clear cell being aggressive and he didn't want to take any risks even though I was early stage- said it responded as well as any other cell type in the earlier stages and not to get gloomy!! (I too had looked at the internet).

    I didn't want chemo but after talking things through with my family I realised that I had to give myself the best chance of recovery (they bullied me!!) Four years later I am lucky enough to be here without recurrence so far and don't regret having the chemo. I did give the oncologist a hard time with questions about the research around chemo in early stages etc- he probably dreaded my appt .

    Ask as many questions as you need to feel certain about the choices you need to make and I wish you well in whatever you decide.

    Polly xx

  • Thank you for your replies. Can't fault my oncologist, he did say that hopefully everything was contained in the ovary and this is precautionary as they couldn't be certain there was no spread, he said he will do whatever it is that I want, but his recommendation is a full hysterectomy and chemo. He has been supportive every step of the way and is happy to see me to chat about any questions, he came to see me after my op and each day that I was in hospital.

    I have been assigned a macmillan nurse which is standard proceedure, and she is very nice, but I do feel she sees it very cut and dried. I'm still reluctant to lose my cervix, yet, reading threads here I feel lucky to have the choice. So am very confused, I've asked the consultants secretary to see if he can see me this week to go through things, am still waiting for her to get back to me. However I don't want to take a risk with my life, what if I'm wrong and all my research about keeping various body parts is a mistake for me. Yes I am confused!

    My CT scan and bloods were normal, but I have a chest CT scan booked for next Tuesday, which I'm dreading. Then there is the recovery, this op 3 weeks ago was tough at the start, pain, walking, toilet etc. However, hubby has booked 2 days off next week, one for CT and one for op, but I'm quite frankly scared.

    MyHubby has been amazing, but I feel terrible that he is having to go through this. He has been to every appointment with me and waited until I came out of recovery for my first op, then rearranged his diary so he didn't miss visiting time, I came home to a clean house with all the washing done, so can't fault that, but it seems such a lot as he is having to work long days to cover the time off, 7am - 9pm. My daughter chose to stay with her dad when I remarried so that she didn't have to change schools, she is 13, I see her every other weekend, she lives 80 miles away, and was devastated, my son said he will drive her to see me, but he has work to consider, it just seems everyone is having to do things because of me.

    LA

  • You have probably devoted soooooooo many hours of care and love to your husband and children and they may now welcome the chance to do something to help you now that you need a bit of support. I am sure you shouldn't feel guilty about what is happening. Families are brilliant at rallying round and would undoubtedly wish to do this.

    About the cervix/whole removal question, I had a word with my surgeon before my op and he told me he could re-build what was there. Didn't go into details, but he asked us, at my 6 week check up, if we had ' tried it out!' We had, and he did a great job! Have a word with your surgeon, say that you still enjoy a good sex-life with your husband and you want to continue to do so.

    Good luck with your decision making. If it were me, I would wish to get rid of any potential problems with surgery. My treatment didn't even need follow up chemo.

    Also, Macmillan have a division in each area who help with work and pay related issues. You may well be eligible for some help because you have had a cancer diagnosis. Ask your Macmillan contact to put you in touch.

    All the best,

    Love Wendy xx

  • Spoke to consultant, and I have agreed that there s no point in taking a chance, that he should just do whatever he feels necessary based on his experience, I ignored his advice before and although right at the time hindsight is a wonderful thing, I just have to accept I'm not an expert at everything lol. I did raise what you said and he said he planned to make sure there will be the same depth, so am glad I read your post before I went.

    My children do not live with me, I remarried 3 years ago, my little girl chose to live with her dad rather than move 80 miles away with me, and my son lives with his girlfriend, my other son passed away in 2008, so they've had lots of upheaval, plus they lost their grandparents recently. I feel like, yep let me see how strong you are and give you more to worry about.

    I have a Macmillan nurse who is very good, she told me about free prescriptions today, got me to sign the paperwork and filled it in to send off for me, but no help financially I don't think am going to doc tomorrow to get a certificate, going to try fro SSP, so fingers crossed.

    Thanks for your replies everyone, it's very reassuring.

    LA

  • H lily Anne, 36 years ago when I was 26 I had ovarian cancer was told it was just becoming invasive as they didn't grade everything in quite the same way. I had huge ovarian cysts and also lots of small ones all over my ovaries. After removal of all that, the surgeon left my womb and a tiny bit of ovary because I had only been maried for 2 years and he hought I could go off and have my kids and then come back and he would take it all away. I was told quite deffinitely by the onclogist that I would be dead in 5 years without radiotherapy as the treatment was in those days and I had 5 weeks of radiotherapy and obviously went through the change of lif etc. I had breast cancer in 2001 and survived that, I am nok 62 and no one would know I do look very young for my age and travails.

    I don't know if you have children or want them but it became a severe need in me and finally we were able to adopt 2 beautiful babes from abroad We had to fight and struggle for them and that is part of the story but not everyone has such a driving force for children as I had. That is part of the whole experience you will go through but it is a different part rom the need to survive which burns so strongly at an early age.

    I would advise you to do every single thing to make sure you give yourself the best and safest future. The baby thing may have to be sorted later but first and foremost this is about yourself and your husband. He will have his own stuff and I would suggest professional support if they offer it these days.

    Hope this helps to sshow you there is life after stage 1 ovarian cancer. If I can help anymore my email address is maggie.bennett11@btinternet.com wish ou both all the luck in the worldxxxx.

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