Feel I have been forgotten

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This all started just after Christmas when I noticed a lump in my lower stomach, stupidly I did nothing for a while and realized that the lump was getting bigger.  When I finally went to the doctors after having to convince him that I was not pregnant he sent me for urgent ultra sound, and made an appointment with a specialist.  At the time I did not realize that this was oncology.  The ultra sound confirmed that I had a 14cm x 10cm x 8cm cyst on my ovary.  After seeing the specialist who scared the hell out of me and sent me for a CT scan (the cyst had grown in 1 1/2 weeks to 15cm x 11cm x 10cm) and cancer blood tests said I would be in within 2 weeks and have a full hysterectomy.  My blood tests and CT scan came back and everything was clear for cancer.  At the time I was over the moon felt elated.  However they said there was nothing they could now do for me and I would need transferring.  After nearly a month I did not hear anything. I have finally got in touch with the next consultants secretary who has said that I am looking at the end of June before I will have the operation.  This is another 10 week I look 6 month pregnant now and cannot sleep at night I can’t say I am in pain but I am uncomfortable all the time.  Please don’t think I am moaning as I am so glad to have dodged the cancer but now I just feel that I have been dump to the bottom of a very long list and left there.  I cannot help worrying as to how big the cyst is now as my last scan was 4 weeks ago!!. Has anyone else had to wait this long?

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  • Posted

    Just trying to work out how long I waited. My cyst was identified mid June last year, untra-sound CT scan etc. Date for surgery was mid July. That was cancelled last minute (4pm day of surgery!), finally had op end of August so that has to be about 10 weeks. My cyst was 23cm x 19cm x 11cm when it was finally removed so I know what you mean about looking pregnant!

    Basically after the CT scan and bloods they had a better idea of what they were dealing with so things calmed down at bit.  

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    • Posted

      Hi Betty, thank you for the reply. I have already been waiting for about 10 weeks and they are now saying from last Monday it could be another 11 weeks.  I feel so frustrated as it can only be getting bigger. Gosh your was really big if you dont mind me asking how did they remove yours.
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    • Posted

      A rather fetching 20cm vertical abdominal Incision! It has to come out whole. Total hysterectomy, ovaries out, appendix out too. The cyst alone was 3kg. All fully healed now, hot flushes just about sorted themselves out. The cyst came back pre-cancerous so currently on 4 monthly check ups. 
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    • Posted

      Mine was very similar! My cyst was apparently the weight of a decent sized baby (7 or 8 lbs) and bigger than one! (I was actually very disappointed they didn't weigh it or take photos. sad I've heard of some big cysts being drained and taken out through a smaller incision, but my surgeon wanted to get it out whole and I was ok with that. Almost 9 inches incision - about two thirds below the belly button and one third above it. Gulp! So relieved to have it gone though. I can live with any scar knowing it's gone!  Don't worry too much about the surgery though Kim. Once your in hospital and they can start fixing you the anxiety will actually disappear, I promise! The worst bit is waiting by far. 

       

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  • Posted

    Hi Kim,

    I had a very similar story to you, though my GP made a big fuss about me having to be rereferred to benign gynae. I think I was given a shorter wait time to my benign appt because of that. As it turns out I didn't even use that appt in the end because things escalated so quickly. I would make some noise if you are in pain, make it known you might need seen sooner! I actually grew REALLY quickly, like you say I looked 6 months pregnant. Well I went to my GP all apologetic, feeling like I was wasting their time when I had an appt to wait for already, in the hope they might give me stronger painkillers. Instead they decided I was big enough, and in enough pain, to qualify as an emergency patient! Oh what a shock, and a relief! I went into hospital via A&E that day and surgery the next morning. I'm not saying that is what will happen with you, or even that it should. I just want you to know that it is worth speaking up and that there ARE other paths the doctors can follow if your case becomes serious or urgent. 

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    • Posted

      By the way, I discovered my cyst mid-Jan and had op 24th Feb. It was a big surgery so I'm still recovering (8 weeks on Wednesday) but everyone's different. Let me know if you'd like someone to talk to! I can PM you or give you my private contact details if you'd like to talk to someone who recently went through this. Best of luck. xxx
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    • Posted

      Hi Pam, thank you for your story. How big was your cyst when you went back to the doctors? and what procedure did you have?  They are looking at a full hysterectomy with me as I dont mind I will be 47 in May so dont need the bits and most certainly dont want another cyst on the other ovary.  It is really good to talk to people in the same situation. Thank you
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    • Posted

      Hi Kim,

      Here's my approximate timetable for you to see what happened with me:

      Day 0: Woke in night to large painful swelling like a hernia or something and phoned 999. Swelling disappeared after 30 mins so told to see GP next day. No real symptoms before this, just a bit bloated feeling!

      Day 2: Saw GP, who treated me for IBS but referred me for blood tests and Ultrasound just in case.

      Day 3: Blood tests

      Day 17: Ultrasound showed a 20cm x 15cm x 7 cm cyst on right ovary! Results same day and GP referral to 2-week urgent cancer specialist.

      Day 22: Went back t see my GP with husband, because I was a bit overwhelmed by what they told us last week! Advised to stop exercise.

      Day 29: Hospital appt with Gynae oncologist. Told probably not cancer but that she'd book a CT anyway. Told to get my GP to re-refer to benign (and that it could be a 16 week wait). Phoned GP who did send referral, but was angry with the specialist for bouncing me back! He said he'd write a letter to try and get me up the list.

      Day 31: CT scan. Found out later this showed inflammation on my kidney and liver due to pressure. At least one measurement over 24cm at this point. 

      Day 36: Chased Oncology Gynaecology on GPs recommendation since no appt given yet for benign. GP's receptionist advised I harrass them a bit as no appt yet. 

      Day 42: Received appt from benign Gynaecology for an inital appt 3 weeks from now. So swollen and sore I was very upset about waiting this long but Pharmacist recommended taking paracetamol and ibuprofen together at same time. 

      Day 46: Went to chemist and got co-codamol. Advised to see GP for stronger medication.

      Day 49: Went to GP with list of symptoms and tears in my eyes,hoping he could prescribe me something stronger to help me wait. Locum doctor phoned the emergency Gynae admissions and stated I was genuinely presenting at 24 weeks of pregnancy with a cyst and she was sending me in to hospital. I'm normally size 8 and 5'3 so it was bulging a lot. Gynae doctors in A&E agreed my case was urgent and I was admitted that afternoon. 

      Day 50: Vertical laparotomy removed a large baby-sized cyst. The nursing staff and doctors were brilliant and my ordeal was mostly over. Phew!!

       

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    • Posted

      It is a releif when you get the all clear for cancer but then they just leave you. It seem your GP has been a star mine just keeps saying that they have not been informed of anything so there is nothing they can do!!! I am geting to the stage where I cannot manage the discomfort without anything. I spoke with the consultants secretary last monday who informed me that she had just been off for 2 weeks and now the consultant was off until Tuesday 21st, but would speak to her about me as the cyst on the last scan was large and see what could be done.  I am going to give them until wednesday of this week and if I have not heard anything will ring again.  If they are still saying the end of June I am not sure what to do next sad
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    • Posted

      My GP was pretty good! He did all he could and he acted quickly. I do wish I had made more of a fuss earlier on though. I was trying to be good and wait my turn etc and not make fuss. Then when I was finally in A&E, the doctors were asking why I was not sent in sooner with the CT showing internal strain. I was pretty much asked why I had just waited at home if I was in so much pain! I felt like they might have actually taken me in through A&E if I'd just showed up there 2 weeks earlier. To think, if I'd gone in the ambulance that night we called 999, they might have done the US and Ct scans then and operated soon after. No guarantee, but if I were going through this again I think I'd act like it was a bit more urgent, rather than sucking it up. I can't tell you what to do, obviously, but that's just my story.
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    • Posted

      No Pam it is good to hear what others say as I am not one for making a fuss and normally go along with things. I am worried if I make to much fuss they will just keep putting me down the list.  I just dont know what to do for the best.  What area are you in Pam as I have heard some area's deal with them alot quicker than other.  I am Derbysh
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    • Posted

      I'm in Gloucestershire. There IS a 16 weeks wait for benign here (and the lady in the bed opposite me with Fibroids really had been waiting 17 weeks) ... and there is also a bed crisis at Gloucester Royal Hospital! I got the impression from the doctors on the Gynae ward that in this area, if you are an urgent case you will have to be admitted as an emergency. Which, of course, must have a knock on effect and push the wait list longer. sad I am very relieved and fortunate that they have a suitable pathway in place for particularly serious or urgent cases, though, because I did need it. I can't tell by talking to you whether you would meet your local criteria for being an urgent or emergency case, but I would say that you definitely won't get classed as that unless you present to a specialist, GP or A&E at the size you are now (not 4 weeks ago). If you've really grown and think thereis a chance you should be treated more urgently, do say so. Even perhaps go to A&E if you feel desoerate enough. Worst case is they send you home again.  
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  • Posted

    I have telephoned the consultants secretary again today and she say even they she is back from annual leave she has not seen her and as she only works until 1 she will email her my details and see what she can sort.  I have told her I am normally a size 8 - 10 and I now have  a 36" waist. I measure my waist on Sunday and it was 36" and this morning was 36 1/4".  Am now waiting again sad
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    • Posted

      Great news folks I have my pre op assesment on 27th April and operation on the 8th May.  thank you to everyone that gave me advise smile
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    • Posted

      YEYYY! :-D Kim that's great news! 

      It really does sound like your situation is similar to mine (normal size, current size, cyst desciption) so I'll post a little bit more about my experience in surgery/hospital for you...

      PRE-OP

      I was admitted as emergency, so I didn't get pre-op assessment at a seperate time. The day before my surgery I was admitted to hospital and given a bed on the gynaecology ward which I had as my own for a week. I had visits from a few doctors to complete a raft of allergy and consent forms, which were probably the usual pre-op forms. Everything was clearly explained and I felt instantly safe and ressured when I went to my bed area. I felt like my "bit" was sort of over, and that the professionals could take over and worry about me now! :-) I was allowed to eat and drink as normal up til 12 midnight the night before my morning operation. Then nothing, not even water, after midnight. The morning of my surgery I really did want a cup of tea, so I'm glad I didn't have to wait long! My surgeon actually managed to come up and talk to me briefly. She re-stated what they were likely to do in my case (a long vertical laparotomy cut down my abdomen, removing the cyst and probably my right ovary and tube as well). She told me that the cyst was very likely benign, but we briefly discussed that if she opened me up and I was riddled with cancer on both ovaries, she should take everything out, but that she would ONLY take more than the cyst and right ovary IF my life was deemed in imminent danger. I asked her when my husband would be able to know how the op had gone, and she said she would be happy to phone him on his mobile straight after the surgery (even before I was woken up) if that's what I wanted. So we made sure his number was clearly on my file. My husband was actually hoping to come in and see me before I went into surgery that morning, but it all happened quite quickly so that didn't happen in the end. They put a canula in my arm (for future drips etc) while I was still on the ward, had me change into a surgical gown and disposable knickers, then wheeled me on my bed out the ward and down to surgery around 9am. 

       

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    • Posted

      IMMEDIATELY AFTER SURGERY

      I woke up in recovery to be told my surgery had been 2 hours. I was helped to sit up slightly by two very nice male nurses. I was very "high" and spaced out, but fairly happy and in no pain whatsoever. I have a vague recollection of being allowed to phone my husband and then spending the whole time talking to him telling him that he should bring me ice cream NOW! :-) Thankfully he had already had a real adult conversation with the surgeon and knew that the surgery had gone fine and when to come to the hospital etc! I actually found out from him that the surgery had gone OK I think. Unless someone had come and told me and I just instantly forgot. 

      I didn't have to worry about anything at all (eating, drinking, peeing, getting out of bed) for the first 24 hours or so. I was on fluids drip through my arm to make sure I was not dehyrated. I had a catheter (couldn't feel it at all) which meant I was never aware of needing the bathroom. I had an epidural (on top of the general anaesthetic) and they left that in for a few days as an effective pain blocker. 

      When I was considered relatively stable (about 1-2 pm, about 2hrs after surgery ended) I was wheeled back up to the ward with my bed and all my various fluid drips and tubes. An hour after that I was fully awake and chatting to my husband and absolutely starving for my lunch! I went through cycles that day of being instantly really tired and needing to rest, and being OK and hungry. Later that afternoon/evening I had a visit from the surgeon to discuss how it had all went and what to expect next. She said that because I am normally slim (size 8), there actually was not that much abdominal  fat to "bed in" the stitches, so she was going to have a nurse keep a close eye on the wound for possible gaping or anything. She said to take it really easy, and told me not let any uninformed ward staff make me get out of bed and walk! (eg a nurse who didn't know my situation). Apparently for some ops it is recommended you move around soon after. Not what I had. So I did as I was told and stayed in bed. :-)

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