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Large complex cyst being removed this week ... worried

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Bexp66
Bexp66

Hi ladies,

I have been reading here for a few weeks and have found it really helpful reading of others experiances of cysts. This coming week I am having surgery to have mine removed and am feeling rather anxious.

I discovered a lump about the size of an egg just before Christmas and the first doctor I saw told me that there was so much fatty tissue he couldn't find a lump! It took me 6 weeks to puck up courage to go back but when I did the lump was the size of an orange. I had an ultrasound that showed a 15.5cm complex ovarian cyst, septated, shadows, etc. So I was referred to a gynaecologist oncologist. My CA125 was only slightly raised, 44 and not really otherwise unwell. He was very laid back, said the worst case scenario would be a borderline tumour. I am not sure how he could be so sure but he was. I am 48 and premenopausal so I know I am low risk ... but I don't know how he could say so definitely that it wouldn't be ovarian cancer.

Anyway, he referred me for an MRI saying he would either refer me to a general gynaecologist for surgery if it wasn't very suspicious or he would do it if it looked suspicious. After the MRI I received a phone call from his secretary telling me surgery would be with him in a week ... it seems to have moved quite fast. I have had my pre-op yesterday, on Tuesday I have a CT scan and on Wednesday he is doing a total hysterectomy, both ovaries and also the omentum(?). He may try key hole or it may be a full incision. The cyst is now the size of a 20+week foetus so I am looking a little pregnant but other than the discomfort am still feeling well.

In some ways I am not overly worried, he seemed so sure (without actually examining me or looking at any scans!) that the concern was very low, and yet the whole process is scary. I am lucky because the surgery is being done at a cancer centre so I know I am in good hands. I just wondered if any other ladies have had a similar experience? I wonder what was seen on the MRI to show concern and I am not sure why I am now having a CT the day before as well. I wont get to speak to the surgeon until the day of the operation. I did mention to his secretary that I was concerned at the speed of things and she said that when they first looked at next available dates it would have been into May which was too long so I have been fitted in sooner.

Anyway, sorry to ramble on ... I feel like I am in an alien territory! I don't know if I should be more concerned than I am  or whether I am okay staying fairly calm!!

If anyone has had anything similar I would really appreciate hearing from you,

Becky

0 likes, 23 replies

23 Replies

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  • pami56
    pami56 Bexp66

    Posted

    Hi there. Sorry to hear your so worried. I'm sure all will be ok. I have just had my date (28th May) to have my ovaries removed and I'm getting really worried too. Iv been waiting since December. My blood tests were fine and my consultant has said the cysts on my ovary is ok (from

    Biopsy and MRI) but this still doesn't stop me worrying but they seem to think there's nothing to worry about. They are doing mine as a precaution because of strong family cancer history. Yours perhaps is more forward on the list because your cyst is so big and they may think it may cause you discomfort soon. They never tell you too much do they? I sure everything will be fine. This forum is very helpful

    • sylvia71047
      sylvia71047 pami56

      Posted

      Hi Pam- Once I got my date for op after a miserable Christmas and New year I decided to enjoy the "normal" days until my op at end of January as I had worried myself sick.My bloods were fine,the operation went well,recovery is good and the biopsy was benign and I'm sure yours will be too. I'll be thinking of you on May 28th as it's my birthday so I won't forget. Good luck x
  • judy01992
    judy01992 Bexp66

    Posted

    I am due to have the same op on monday my ca125 was 61 both overies tubes and TAH
    • sylvia71047
      sylvia71047 judy01992

      Posted

      Hi Judy- The nurse told me that had my CA 125 been in the hundreds or thousands she would have been worried but yours sounds reasonable.Good luck tomorrow.You'll soon be well again x
    • pami56
      pami56 sylvia71047

      Posted

      Thanks for you kind words Sylvia. I got my results 5.30 Xmas Eve!!! What a terrible time it was. Just want it all over with now. Thanks x
    • Bexp66
      Bexp66 judy01992

      Posted

      Hi Judy, I was thinking of you today and hope it all went well. Let us know how you get on.
  • sylvia71047
    sylvia71047 Bexp66

    Posted

    Hi Bex - I had an ultrasound in Dec because i'd had cystitis in August. Bladder and kidneys were fine(the cystitis was long gone) while I was there the sonographer said could she do an internal scan- didn't hurt,next day got a call saying I had a pelvic mass?? I felt really well,no symptoms at all.From then it was 7 weeks til I had a full hysterectomy for POSSIBLE ovarian cancer( I'm in a high risk age group-74)

    However CA125 result was low(27) ,so is yours, and the CT scan showed no spread in rest of body and no fluid in abdomen. That may be why your doctor is not overly concerned. He sees these scans every day and isn't too concerned about you so take that as a good sign-I did and ithe biopsy came back as benign 2 weeks after the op. My recovery has been great.7 weeks on I'm being sensible about lifting but have been back in swimming pool this week and have increased my walks since day 3 after op.When I got a letter saying i was to see a gynaecological oncologist I freaked out but he does cancer and non-cancer hysterectomies. I feel you will be fine. The doctors know what to look for. Hope all goes well- the waiting is the worst part. The operation was so much better than I expected and I was very well looked after.xx

    • Bexp66
      Bexp66 sylvia71047

      Posted

      Thank you so much for this. It is so helpful to hear other people experiences. It is hard when you suddenly live in the world of oncolgy and tests etc, isnt it. I am glad that it is being done by an ocologist really, just adds to the stress a little, but I know I am getting the best possible treatment. I am having the surgery in a Cancer hospital so am surrounded by experts just in case. I am glad you are healing well and the recovery has gone okay. I may be back to ask more questions after the surgery! x
  • pam1984
    pam1984 Bexp66

    Posted

    Dear Becky,

    I have just been through something very similar so here are some of my thoughts and an account of my experience which will hopefully help you and reassure you. 

    First of all, you are not alone! Cysts are really common (I discovered) and although weirdly huge ones are rare, they do happen. In general, a large liquid filled one will almost certainly be benign - it basically grows big due to a malfunctioning ovary, rather than the presence of cancer. The fact they've booked you in quickly is GREAT and doesn't necessarily mean you are at greater risk of cancer or anything - it could just be that they can gauge how big it is growing and the sooner it is out the better.

    To give you an idea of my situation, I was found at the end of January to be carrying a cyst over 8inches (20cm) across at an ultrasound scan. By the time I was admitted (as an emergency patient, due to a bed crisis in the local hospital) on 24th Feb I was officially presenting at 24 weeks of pregnancy! My cyst had grown so big they couldn't take it out with laparoscopy (key hole) or even caesarean section (they really wanted to be able to take it out "whole") so they had to do a vertical laparoscopy down my belly. You'd think that would've scared me, but honestly I was so happy to hear they could operate and operate NOW to take that darn thing out that I didn't care! 

    After surgery, I woke up to find they had given me an epidural to manage the pain. The surgeon came in and told me that they had successfully removed the cyst and my right ovary and tube, and that she had taken a look while she was in there and my left ovary and womb were healthy, so I should still be fertile. (I'm 31 so it's nice to still have the option) smile I stayed in hospital for 5 nights after the operation. Almost everyone else on the ward had been and gone in this time, but the surgeon reassured me that this kind of surgery (especially the vertical cut) can take a bit longer, it wasn't just me. I found that by the end of the week I could get out of bed and walk (clutching a pillow again my belly) and shower myself. Yeyyy! 

    I have no idea if your surgery will be like this, it may not be as big a cut (mine was over 8 inches) and it may not be vertical, but I am here to tell you that it is OK if it is! Honestly, I was so looked after in the hospital, once I had resigned myself t relaxing and trusting the porfessionals with it, they did an excellent job. The hardest bit for me is knowing that recovery afterwards can take 6-8 weeks or more. I'm almost at 4 weeks since my surgery and I can now sit at the computer and concentrate enough to write this! Plus I managed a half-mile walk this morning. Slowly but surely I plan to get back to myself. The physiotherapist reckoned I could get back to sports after about 12 weeks. 

    You ask if you should stay calm? YES! It's really the only thing you can do. Whilst what you have is a bit unusual, it is something that is fairly "basic" in terms of medicine and surgery - the doctors know what it is and how to fix it! Try to focus on the positive of that! :-) 

    This wasn't the best constructed reply so feel free to PM me or ask more questions if you like. 

    Good luck and best wishes. Keep us posted on the outcome.

    Pam. xx

     

    • pam1984
      pam1984

      Posted

      * Sorry I said above that they performed a verical laparoscopy. I meant a LAPAROTOMY, which is which they cut you properly open. It is less common these days, but still needed in cases where the surgeon needs full access to the abdomen, or where they want to romove something large and keep it intact. It's not as terrible as it sounds. Opening people up and closing them up again is pretty routine for an abdominal surgeon!
    • Bexp66
      Bexp66 pam1984

      Posted

      Pam, I cant thnak you enough for taking the time to put down your experience. You have no idea how much it helps to read about others who have walked a similar path. My surgery is being done in a cancer hospital by an oncologist so I know I couldnt ask for better treatment. My cyst is sadly not a simple fluid filled cyst but a complex one with shadows which is why they are concerned but even so, I know it could still be fine. I am very curious as to how much it has grown but it does feel quite a size. They were undecided about whether to try keyhole or laparotomy so I am having a CT scan tomorrow to help them decide.

      I seem to have been seen with almost the same speed as you - it will be 6 weeks and 2 days after seeing my GP to surgery. They have said mine was the size of a 20 week pregnancy 3 weeks ago!!! And I have to say I am definately feeling pregnant these days! I will be glad to have it sorted but there is just that niggley worry at the back of my mind.

      Thanks again and I am sure I will be back with questions over the next few weeks if that is okay. And I will definately do an update - these boards have been so helpful to me, I would like to repay the favour!

      xx

    • pam1984
      pam1984 Bexp66

      Posted

      Hi Bex,

      It sounds like you are being very level-headed and brave, facing this thing head on. Good for you! You are allowed to be anxious a bit too. *Hugs* I think I got seen very quickly due to the size and pain caused (CT showed my kidneys and liver were squished and inflamed). I did have some solid bits in there too but they didn't describe mine as complex for some reason. Anyway obviously I will cross my fingers for you that the biopsy after the event returns benign. For now though, I would just focus on getting it gone, whatever it is, and making steps back towards normal life! It does help hearing from others, I agree. I recommend taking a look at my own personal post (called "4 months wait for removal of huge benign cyst" or similar) because other women shared similar stories on there too. I may post again as I think of other things you might be glad to hear. 

      When is your surgery? We will think of you and send good vibes!

      Pam

    • sylvia71047
      sylvia71047 pam1984

      Posted

      Hi Pam and Bex- It was nice to read your account of your laparotomy Pam. it's exactly what I had done on Jan 27th. Tomorrow is 8 weeks post op and I have felt amazing this last week- full of life ! I've been swimming ( gently ) for last 2 weeks and was walking since 1st night in hospital when 2 of us would make cups of tea at 4am! I'm not up to my regular 5K walks yet but getting out and about fine. I too still hold my belly when I swing out of bed on a morning just to be safe and a favourite pillow has seen me through the nights.I too was so glad to get into hospital 7 weeks from diagnosis to op.I showered the next day in hospital-i had a pelvic mass with 2 cysts solid/adnexal type of 5cms and 8cms plus polyps etc. No pain or symptoms before so a total shock. The biopsy was benign.I had 24 staples and the scar is looking so good now. I used Boots scar serum to sooth it.Pam your cyst was huge ! Did you have pain before op?Bex don't keep worrying about the oncology bit. My surgeon did both cancer and non-cancer too. Bex google Omentum it's quite a large organ. I was told it may be removed but they just did a biopsy on it in the end as it is where the cancer cells go IF there are any,but yours CA125 sounds good so should be fine.x
    • Bexp66
      Bexp66 pam1984

      Posted

      Hi Pam,

      I had a CT scan today adn tomorrow morning I have to be at the hospital for 7.30 and having surgery later in the morning. A tad nervous now but am just glad to get it sorted. I think mine is classed as complex because it is multioculated - several chambers with walls between them. Thanks for the positive vibes!

       

    • Bexp66
      Bexp66 sylvia71047

      Posted

      Hi Sylvia, Thanks for writing, it is so helpful to hear from people who have already walked the path. I already have a pillow lined up having read on google how much easier it would make coughing! I think the oncology bit is a worry because I am being operated at a specialist Cancer Hospital! But I know that I will get fabulous treatment and if it was anything I am in the hands of experts! x
    • sylvia71047
      sylvia71047 Bexp66

      Posted

      Hi Bex- I was so glad on the morning of the op to be finally getting sorted. I went in at 7.30- there will be lots of other people there for ops and they treat you well. Nurse,anaethesist etc come and chat with you and tell you what time the op is. I was 1st one down Yeay!One of my cysts was multiloculated and the surgery went amzingly well and you can look forward to getting your life back on track- lots of rest,sleep,watching TV and being spoilt. It will be fine ! Thinking of you tomorrow. x
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