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Septated Complex cyst with internal vascularity and mural irregularity – terrified , please help

Posted , 8 users are following.

grace34257
grace34257

I was diagnosed with large cyst 11 x 13x 16, according to my transvaginal ultrasound report : it is a complex cystic mass with internal septations. Some of the septations have internal  vascularity and there is some mural irregularity. I am totally freak out from this description which is awful and seems to be malignant. My CA 125 is 18, but it may not be accurate to detect the early stage ovarian cancer.

My surgery was scheduled on Feb 23, i couldn’t help thinking of what if malignant, and how quick the cancerous cells can spread. I am feeling normal, only sometimes slight discomfort from lower abdomen.  

I am also so afraid of the side effects of taking HRT, don’t want to remove all my female organs. I am 43, still have regular period.

Any one have similar experience, please share, advise, and help.

Thank you in advance!!!

1 like, 21 replies

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  • Fairywren
    Fairywren grace34257

    Posted

    Hi Grace.Try not to stress (hugs)I think as the surgery is not till the 23 of Feb they know what they are doing and just trust that.

        Are you able to keep the other ovary and avoid menopause for some years to come?You could phone and ask for more detail perhaps and what your options are as to keeping the other ovary and organs.

         X I hope some of the more experienced women can give more advice and help soon.Take care.

    • grace34257
      grace34257 Fairywren

      Posted

      Hi Fairywren, thanks for your reply. i am in Canada, the wait for treatment is very slow here.  i am still hoping to keep one of my ovaries.
  • didi1956
    didi1956 grace34257

    Posted

    I know its hard not to worry we all do. My C T scan and ultra sound said complex cyst with mural nodules suspected cancer. My ca 125 was 65 first time and 85 second time. My cyst was 37cm I did not have cancer. The other women on here with similar cysts didnt either. Most cysts arent cancerous. Its been six months since my surgery and I feel great.
    • grace34257
      grace34257 didi1956

      Posted

      Hi Didi , thank you for your kind reply, i feel a bit at ease knowing your outcome was good. In my case , the words "internal  vascularity", "mural irregularity?" about my cyst really scare me..

    • sandy64663
      sandy64663 didi1956

      Posted

      Hi didi1956. Sorry to hijack your conversation but just wanted to say great to hear your story and you are well. After going to GP with some brown discharge she referred me for scan after ca125 result of 53. Scan showed cyst on right ovary which is complex due to slight septum. Terrified I have cancer. Next stop gynae. It's reassuring to hear u had similar and are cancer free. Xx

    • sandy64663
      sandy64663 grace34257

      Posted

      Grace 34257. I'm going through similar and know how hard it is to wait for news. I hope all goes well for you. Xx

    • didi1956
      didi1956 sandy64663

      Posted

      Im glad my story has helped that is why I post on here to ease other womens fears. I bled some  that led me to see my gyno as I was in menopause. I was sure it was cancer too because it was complex with nodules.I will keep you in my thoughts and prayers.
    • sandy64663
      sandy64663 didi1956

      Posted

      Thank you for your support. Please God I will be cancer free. wishing you continued good health. 😘

  • Fljack1066
    Fljack1066 grace34257

    Posted

    Hi,I'm also 43 and have been told I need a hysterectomy. My history is an ectopic pregnancy from my right ovary which had apparently broken down and dropped into my pelvis? That was 18 years ago, since then I went on to have a miscarriage, in hindsight I probably tried for another baby to soon, but who knows. I then took 7 months to conceive again and went on to have a normal delivery, then had another baby 4 years after. Whilst I was carrying my third child ovarian cysts were picked up on my scans but never caused any problems. It wasn't until my mirena "got lost" and ended up having another scan which then picked up a right ovarian 6cm cyst. This was removed in 2009 and the surgeon managed to save my ovary. He also found 2 other cysts on my left ovary and dealt with, I always say that each of my children left something behind and meant I was cleaning up after them from inside! All was well until October last year when another cyst was found again on my right hand side measuring 6cms again. I had a repeat scan over a month later and discovered it had grown to 9 cms. I've had a cat scan and that has revealed no more increase in growth. CA125 has come back as normal! Now here's my dilemma my surgeon has now indicated I need a hysterectomy, bilateral oopherectony and removal of half my cervix. I was totally floored by this as at most was expecting to lose cyst and ovary. I actually asked him if he was for real and then surgeon appeared to backtrack and suggested I could have the ovary, cyst and tube removed and wait for the biopsy to come back then if it's not good news I get to go on the table again and have a laporascopic hysterectomy a few weeks later.

    I really don't want a forced menopause and feel I'd be gutted if I went for the whole removal and then find out my cyst was benign (like my first one). What bothers me is that the surgeon offered me another choice so is he just opting for the easy option, I have no sudden weight loss, no loss of appetite and a normal CA125 result, am I being reckless in assuming I know my body better? Either way I've been told my surgery has to be a laparotomy so this will be my third cut and in total; 4th abdominal surgery.

    One thing I need to add to this is that the explanation for the hysterectomy is that "the radiologist doesn't like the look of the cyst, it looks nasty"

    I really don't know which way to go and it feels like I'm playing Russian roulette either way, each outcome will have a different impact on my future life. I appreciate that there could be "no choice" in which case I'd go for the hysterectomy in a heartbeat but I can't help feeling my cyst is innocent and I'm just prone to them as my ovary is probably quite scarred. Interesting enough I have been told by a different consultant that my ovaries are actually stuck together so I'm not sure if this has any bearing on taking both my ovaries out? 😥

    • Ellie1943
      Ellie1943 Fljack1066

      Posted

      Hi Flapjack. Sorry to hear about your problems and dilemma. Can I ask, where are you? US, UK or somewhere else? Treatments can vary in different countries is why I ask. I don't think your surgeon can force you to have a full hysterectomy if you don't want one. Ask if they can just remove cyst and fallopian tube on affected ovary but to remove the rest if it's necessary when they can see what's going on. A good gyn/oncologist will know by looking at it, if it's likely to be malignant. Even with a hysterectomy they may be able to save one ovary and then you would have a normal menopause. You can also ask for a second opinion! I think you will have other replies too so, chin up and best wishes, from Poll UK rolleyes

       

    • Fljack1066
      Fljack1066 Ellie1943

      Posted

      Hi Pollyanna UK

      Thank you for your reply, I'm in the U.K. too. I think if the surgeon hadn't have given me another option then something tells me this isn't last chance saloon and it's just a case of they just can't tell until the cyst is out and under the microscope. For some reason a surgical menopause scares the hell out of me and I'm just not mentally prepared to even consider it at the minute. I always tell my kids that we should try and solve things and not go through the easy route, also if it ain't broke why try and fix it. I understand some of the concerns around weak organs and the possibility of them being "attacked first" but a hysterectomy just feels so drastic. I may end up eating my words but at least I will know I have exhausted all possible routes first and ultimately they will have been MY choices. I think mentally I can live with that better should the outcome be not to my advantage.

      The stumbling block is that I got put on a 2 wk wait so ended up seeing a surgeon with ovarian oncology being his specialist field.

      My fate awaites next week 😳

    • grace34257
      grace34257 Fljack1066

      Posted

      Hi Flapjack, i have same fear and feel the same way as you -- i am not prepared and it's hard to accept forced menopause at this age. That means i'll be on HRT for 10 years!!!  But on the other hand, i have a greater fear of it turning out to be cancerous?, whenever i think of it, i am shaking in my boots. sad

      ?i have no loss of appetite either, but have lost 10lbs over 1.5 months, that scares me too, i hope that's because all the stress i am going through, and more exercises, still going to gym regulary, and more walking after dinner.  Is your cyst a complex cyst?

    • didi1956
      didi1956 grace34257

      Posted

      Both of you ladies need to tell the surgeons what you want. IF its cancer they automatically remove everything but if not make your wishes known on what you want removed or not. I was real sick 16 years ago and it threw me in menopause at 48. I didnt take anything like Hrt I didnt need it. When they removed my huge cyst I had a small one on the other ovary. I had total hysterectomy as i didnt want another operation for another huge cyst and 6 months later I feel great. But that was my decision. You both need to make yours.
    • Fljack1066
      Fljack1066 grace34257

      Posted

      Hi grace34257

      I don't know what type of cyst I have, all I know is that it's not a dermoid cyst. My previous cyst turned out to be a "benign simple cyst" but this time the surgeon just kept saying it doesn't look very nice. I have an appointment with my gp to hopefully discuss the content of the ct report. Hopefully I can make an informed choice from that.

      I too worry about one returning on the other side should my left side remain intact, especially as I found out about my current cyst incidentally. I had my suspicion so I'd like to think that I'm tuned well in to what's happening inside that I'd know if there was another.

      I know stress can do "things" to your body so I guess your weight loss will be attributed to that. I'm trying to lose some weight before my op so that I "bounce" back quicker after the op....that's the theory anyway!

      Take care. X

    • Ellie1943
      Ellie1943 Fljack1066

      Posted

      Well it's good you don't have to wait too long anyway, it's usually months not weeks where I live. A good oncologist will know when he/she looks at what's going on in there but they still have to do the histology. I waited about 2-3 weeks for the report which was everything normal thank goodness. It's a bit scary while we wait for surgery as we tend to think and worry about the worst outcome. We're all the same and here for you if you want to chat about things, been there done that etc! I had a hysterectomy but they left the ovaries, that was 30 odd years ago. I had menopause at normal time and used HRT for 10 years. 45-55. x smile

    • grace34257
      grace34257 didi1956

      Posted

      Hi Didi, just wondering if a frozen section was performed during you op?

      ​Did you experienced any discomforts , like hotflashes from menopause without taking HRT?

    • didi1956
      didi1956 grace34257

      Posted

      Yes she did a frozen section the oncologist told my family it wasnt cancer right after she finsihed surgery.No I didnt have hot flashes like most women do where you just sit there and break out in sweat. As I said in a previous post, I was thrown in menopause at 48 and never felt any diff accept no periods. But eveyone is different. I had hernias from a previous surgery and the cyst made them much worse that had to be repaired when they removed the cyst.Im 63 so I chose a total hysterectomy as I had a smalller cyst on my other ovary and didnt want anymore surgerys or worrying about cancer . If I were younger and it wasnt cancer I dont know if I would have.
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