The Journey Begins

It's been a very strange few weeks, no a few months actually. In january 2012 I went to my GP rolling in agony with abdominal pain, he told me he couldn't think what could be there to cause a problem, so took bloods and said go home take some pain killers and get over it. When I rang for blood results was told they were normal, in fact it seems some levels were raised, enough to indicate a problem. After another couple of visits I was so unhappy I changed doctors, but this wasn't until June 2012, my new GP sent me for an ultrasound scan, after a thorough examination and some bloods, they identified a cyst 6x4cm, and suddenly I was on a rollercoaster.

I can't have been any more fortunate than I was to get the consultant I have, amazing, listened to me, and although he recommended a full hysterectomy, foolishly I had read an article in the BMJ that hysterectomies were becoming standard proceedure for gynae probs to save money, so I dug in my heels for cyst removal and a unilateral salpingo oophorectomy, all seemed to be going so well, CT scan came back looking good, bloods were looking good, then the bombshell, the cyst had a benign outer with cancer cells within, they hoped it was all removed but may have spread to other ovary, feel sick now.

Looking for holes in the diagnosis, can't find any, asked questions and researched until I feel sick, my head is a total mess now. I don't want any of it, yet I don't like the idea of something creeping through my body and I can't see or feel it, I just want my life back how it was before. I'm angry with my first GP, I'm angry with me for expecting it to be nothing so pushing for minimal surgery.

I want them to answer the questions but don't want to hear what they say, I feel so sad, yet part of feels the urge to just get it all taken out and hope it's all gone, I really hope the CT scan of my chest is clear, fingers crossed.

9 Replies

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  • Hi Lily-Anne . Welcome to this site and the group that no one wants to join abut glad you found us and hope as i do find that everyone here is supportive and knowledgeable.

    Sadly i think that life will never be the same again, try to stay positive and find something positive from the negatives . I know my biggest worry was the waiting for chest ct(thankfully all clear) , There are many inspirational stories on here of ladies with long remissions and gaps between treatments . Like my consultant says we dont take about when but if. i know you are frightened to ask questions sometimes as only want to hear the good answers and not the bad but hope all will be positive for you . I would try to have as much knowledge as possible and be an advocate for yourself

    Ally

  • Hi Lily-Anne,

    So sorry with what you are going through and sending my best wishes love x G x

  • Its very hard at this stage but we do sowetimes follow our instincts. Don't be hard on yourselves trying to reduce your surgery to minimum is natural instinct the alternative is a huge operation and menopause that can follow can be difficult. Not knowing which way to turn makes you feel sick but try not to get to anxious as it won't help your condition. Write down all the questions going around in your head and give helpline a ring.

    Sharon

  • Hi Lily-Anne

    Just to say I am sorry for what you are going through. Ring the helpline on 08453710554, they will be very helpful. Also .....remember, it's nothing you have or have not done that's led to these developments. One of the conclusions I have come to on this site, is that this disease is so random, so inexplicable and visits those of us who do not know why. However, don't waste time in thinking 'what if....' Just concentrate on getting the ****** disease sorted out. Start by getting in touch with the helpline.

    And good luck

    Love Wendy xx

  • Hi Lily-Anne, you have done well to come to terms with it to the point of posting on here, best thing you could have done, and do take advantage of the using the help line, you need all the help and support you can get. You express so well the feeling I have too although it has been nearly 5 years now, I still have difficulty accepting when I feel well as I am right now. You get so much help and info on here Love Diane xxx

  • Hello Lilyanne

    It's hard to come to terms with why these experts miss what is wrong with us. I had been attending the local hospital gynae dept since september 2011, but inspite of vaginal bleeding (which is why I was there), my age (I was 59 then), previous history of breast cancer and a pregnant look they did not scan me, but went through various tests and painful vaginal stuff without even doing a ca125. It was a further 6 months before I reported back to my gp with pain under my ribs, and she said 'you do look quite bloated'. She sent me for an ultrasound scan which immediately sent me down the surgery and chemo path. I can't help thinking the chemo might have been avoided if only things had been spotted earlier.

    The extra worry is I will be discharged back to the local hospital once the chemo is finished. I am wondering if I could go elsewhere, but don't know if I would end up with an out of the frying pan into the fire situation. I think I'll see what form there follow-up takes and ask about frequency of ca125 and ctcans.

    On better days, which fortunately is most days, I'm able to let go of the past as no amount of worrying will change it.

    Hope you find a way of focussing on a good future. None of us know how long that will be. All my life I've had health issues, but I'm alive now whereas a large number of my healthy friends and acquaintances are dead. In our thirties 6 of them died. As an Aunt of mine used to say 'Creaking gates last longest'. I'm planning on creaking for a long time to come.

    Love Christinex

  • Saw the consultant today, he answered all of my questions and I have settled on TAH inclusive of cervix, omentum and anything else necessary. The lab report shows that it appears confined to the cyst and ovary, the tube showed clear, phew! Endometrial clear cell and serous, he said that he may biopsy me if there are any suspiscious areas, but as he looked during my last op, he didn't see any need for other concerns. I was so undecided about the cervix, but he said it really is best to do as much as we can to prevent a recurrence, as that would be harder to treat. Trying to be positive, although the consultant looked quite tired and it was only 11.30am.

    My CA125 pre-op was 34, so within the normal range, my concern is about my thyroid, I have a thyroid problem which is linked to ovarian cysts, but because there is little research, specialists are reluctant to see it as a potential cause of cancer developing, I'm following the studies though.

    It's all the stress that goes with it, my consultant said be positive, see it as a fight and at the end you can rest and let your body recover, and that's what I plan to do, I've always been a fighter although you do wonder just how many battles life will bring, as I seem to have had loads.

    When I lost my son, I said that I would take each day as it comes, I do try to, but with having other children you can't help but worry about them, my little girl broke down at school yesterday, bless her.

    Today, I feel a little uncertain about the post operation blues, but will have a good weekend with hubby, both of my children have October birthdays, so timing not so good. However better to know now.

    Thanks to everyone who has posting, do keep me up to date with how you are doing, it's nice to know you are not alone xx

  • Hi Lily-anne , reading ur story there is like a mirror image of my own , If u read my profile u will see the similarities , There is no bigger shock than learning u have cancer but i found that the secret of living with this is to keep life as normal as posible , sounds hard but i couldn't agree more with ur consultant , Unfortunately i just found out that my cancer has returned only this time is incurable but i have so much to live for , i'm moving into a new house next month , getting married in Feb , i don't think i actually really started to live until i was diagnosed ... i firmly believe that being possitive has helped me through this horrible time and for as long as i am fighting this horriblke disease .., gd luck and keep strong , don't hessitate to get in touch , always there for a fellow fighter x

  • Hi Lily-Anne

    All the best with preparing for your op. It's so difficult to think about the end result when you're at the start of the fight. There's a lot of practical advice on preparing for operations on the search box at the top of the page. It really does sound as if there is a lot going on at a time when you have to concentrate on yourself. You will need to be a bit selfish as much as you can when you come home. It's not easy for a women with young children. There are questions and answers on the search box about talking to children and grandchildren. I was in a school for many years where the children had lots of really difficult situations to deal with and have written quiet a few bits on here in the past about this subject. If you can't find what you need, do get in touch again. I am sure you have told the school what's going on, so they will be able to help your children if they need to talk things through with anyone? Just remember, it will all get better, one day .....

    Wishing you good luck and sending you a hug (((xxx)))

    Love Wendy xx

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