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?
2 likes, 17 replies
Betty752761 kim63215
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Basically after the CT scan and bloods they had a better idea of what they were dealing with so things calmed down at bit.
kim63215 Betty752761
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Betty752761 kim63215
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pam1984 Betty752761
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pam1984 kim63215
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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.
pam1984
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kim63215 pam1984
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pam1984 kim63215
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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!!
kim63215 pam1984
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pam1984 kim63215
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kim63215 pam1984
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pam1984 kim63215
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kim63215
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kim63215
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pam1984 kim63215
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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.
pam1984
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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. :-)