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My experience of huge complex ovarian cyst

Posted , 52 users are following.

clareyscarey
clareyscarey

More of a story than a question in case it helps some of you get through the scary waiting time. I know that it is really hard as if you have this problem you will be looking for information and realising at the same time that your situation is only yours. I am telling you so that you can hope for a good outcome rather than expect the worst.

I am 50 years old and was still having regular periods.

I noticed my tummy looking a bit humpy on the right side about 3 months ago. I pushed the lump and the hump moved to the left. Trapped wind moving I thought. However it started getting bigger and when I tapped it sounded like a watery whump. It grew up and over to the middle so I looked pregnant. My insides gurgled, I was constipated and had bad backache every morning. My whole back was sore andI felt a bit out of breath. It got better when I stood up.

I could not get an appointment with my GP. Rang many days but missed the available slots. Called again and said I would have to use A&E, which I would rather not, if I couldn't see someone. Pain!

The GP sent me to A&E gynae assessment. Ultrasound revealed huge complex cyst. The registrar said they suspected cancer. sad

Two days later I saw the gynae oncologist who said the CA125 result was hardly significant bearing in mind the size. It was 70. I was booked in for surgery in 2 Weeks as he wanted to treat it as suspect cancer; respect it. I had a CT scan and overheard he technician saying he had never seen anything like it in his life. sad

I had a total hysterectomy and removal of my appendix.

After surgery the consultant told me he felt the cyst was benign. I know he would have to feel confident to say that and he does expect the pathology to confirm.

It was a mass of mucus filled chambers with very thin walls and he had to scoop it out as it had become a mush. The appendix was also filled with mucous.

So here I am 5 days post op, gone through the fears, made a will and died many times in my head. Now I just need to get the confirmation of pathology and get the HRT. I will make sure I get testosterone as well so that I do not lose all my pubic hair.

YAY! smile

9 likes, 178 replies

178 Replies

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  • rondam1965
    rondam1965 clareyscarey

    Posted

    Hi clarey this is my story, About 4 months ago I had a sharp pain in my left side lower abdomen, sick to my stomach, light headed, hot and cold it went away within a few hours but had started to notice my belly was bloated I realized that I had lost 30 lbs but hadn't changed a pant size over a years time . I search the internet looking to change my eating habits to see if that would help nope it didn't , did a cleanse didn't help so made appt to see my gp. He sent me for an abdominal US within one week, it showed a large cyst midline in abdomen, referred for a contrast CT within the next week it showed a 20.4cm x 28.3cm x 32.9cm multiseptated cyst possible malignancy, area of left ovary, referred to gyn within the next week seen him he called it a watermelon size cyst referred me to a gyn/on. Appt. For consult for surgery is on 4/3/15. Surgery is planned for 4/16/15, i hope. my CA125 came back at 38 this waiting thing is so hard. I am so glad there are people like you and others on here that share your story's makes me feel not so alone. I'm glad to here that you are doing OK, that your cancer is slow moving hope it stays that way for many years. You will be in my thoughts and prayers. Thanks for again for sharing and being so honest. Sorry for such a lengthy post. I will give an update after surgery. Thanks for listening. Ronda
    • clareyscarey
      clareyscarey rondam1965

      Posted

      Hello there. I am thinking of you and sending good vibrations. Your CA125 is low isn't it. Mine was higher but still pretty low. The hardest thing is the waiting. This time will pass. Perhaps you will be sipping wine in France as I am now! Please do keep in touch. X
    • rondam1965
      rondam1965 clareyscarey

      Posted

      My CA125 is at 38. Yes my hardest part is the waiting I have been trying to keep busy so I don't think about it as much. I will keep in touch. Have fun in France. X
    • clareyscarey
      clareyscarey rondam1965

      Posted

      I wasn't that clear about the CA 125. Yours is only slightly outside normal range. That is what I meant. I am going to keep everything crossed and you are in my prayers also.
  • mavis75447
    mavis75447 clareyscarey

    Posted

    Hi clareyscarey!

    Hope you are well I have been away from my PC for a while has I have been unwell. So I recently had a follow up Pelvic ultrasound to check my ovaries and evrything is all good. My Ovaries are back to normal size, I did have to have a procedure done but it was for Endometriosis. So basically I'm fit in gyneacology way of putting it for now. But still have other issues lurking after me..smile Thank you for the support and you give this  forum.

    • clareyscarey
      clareyscarey mavis75447

      Posted

      Dear Mavis you are so welcome. Me too with other issues. I blooming well got a tonsil cancer afterwards. A year out of that as well. Sure was a year for getting bashed. Go well, find peace and be happy! But am here if needed. Xx
  • karen79086
    karen79086 clareyscarey

    Posted

    I am so glad that I happened upon this discussion forum because my life has been turned upside down over the past week since receiving a worrisome phone call from my clinic saying that they absolutely needed to see me "today before closing, and if not today, then first thing tomorrow morning". That was the start of the most terrifying week of my life (54 years). I have a large, complex ovarian mass on the right side, and a large, fluid-filled ovarian cyst on the left. The waiting, the worry, the dread, the nightmares of spreading cells and cancerous tentacles searching out my liver and lungs have been the worst part of this. My discomfort is just that, not severe, and I am able to cope. What was hard for me was the reaction of the caregivers. My nurse practitioner came into the office, and hugged me, saying she has been so worried about me over the weekend and that I am now her #1 patient priority. I know she meant well, but all this did was terrify me and I thought she must know more about my condition than she was telling me, and her admission of being worried drove my state of anxiety through the roof! The Doctor provided me with a letter advising immediate sick-leave from work, and I went from putting in busy 12 hour shifts as a nurse to laying quietly in a dark room contemplating the end. I was admitted to hospital for 24 hours to complete CT scan yesterday, and the lovely and very compassionate Dr. F. came to speak to me and said he was sorry, but that the scan results pretty much confirm ovarian cancer. He said there is a 1% chance that this large tumor is benign. Now I have to wait 12 days until my consultation with the gyne-oncologist and I am trying to remain calm but am using up a lot of adrenaline due to anxiety. All of your posts on this feed have been so instructive to me, and I am so grateful to hear that you have all recovered and are back living your lives! I empathize deeply with the women who smoke because I quit for good 4 years ago, and one of the first thoughts to cross my mind following the Dr's conversation with me regarding my plan of care was that I regret quitting! Smoking would help me cope with the stress I am feeling in having a nightmare growing inside of me. However, I have decided to try to carry on the best I can over the coming days, and I will overcome the temptation to smoke again. Thank you all very much for helping me feel a little bit optimistic in this most terrible of weeks for me!
    • clareyscarey
      clareyscarey karen79086

      Posted

      Karen I know that this time is very hard. I was told to consider that it may be ovarian cancer. It wasn't. Keeping all things crossed for you. Ride this out. You are stronger than you think in times of dark thought. It brings it back for me. I am starting a juicing fast tomorrow ad have my annual scan in 4 weeks. Just an experiment but my neighbour did it and although her breast cancer had gone to her spine it spontaneously disappeared. I believe that we all need some control when we feel powerlessness. Fight through lovely lady and find yours. Am still here and well. Xx
    • karen79086
      karen79086 clareyscarey

      Posted

      thank you so much, Clare! I am so glad that you are "still here and well" and good luck with your juice fast and annual scan. I hope you get a clean bill of health! I feel so much better now that I have found this discussion thread and heard that others have felt as terrified as I have, and have had their surgery and continued on with their lives! I am getting a lot of "think positive" and "look on the bright side" from well-meaning friends who don't acknowledge how worrisome it is to have a belly full of huge ovarian masses and a CA125 of 260. I am so grateful to you for providing this opportunity to share with and hear from others who know what it is like from personal experience. Thanks again and all the best, Clare!
  • kelly70598
    kelly70598 clareyscarey

    Posted

    Hi everyone hope you are well. I'm freaking out at the moment I went to doctors 2 weeks ago with a pain on my right side doctor looked concerned so asked me to have bloods done and wanted me to have ultra scan. Bloods came back clear but at my ultra scan she said she didn't like the look of my 5cm overian cyst she said it wasn't a normal cyst but doesn't have a blood supply?? this freaked me out because last year I had to have a historectomy aged 26 because I had cervical cancer. I have an appointment with my gyno tomorrow. I'm due to go on holiday the 18th of July.
    • clareyscarey
      clareyscarey kelly70598

      Posted

      It wont help to say this but we know how you feel and your appointment will help you. No raised CA125 is a good thing. I presume you meant that when you said the bloods were clear. When you have had a scare before it will affect you of course. But it doesn't mean the two are related. Let us know how things go. Ok?
  • karen79086
    karen79086 clareyscarey

    Posted

    Just want to let you all know that I had my appointment this morning with the gyne-oncologist at the cancer center and the staff there could not have been more kind and compassionate. I felt so "embraced" by them, and the surgeon herself spent 45 minutes with me for physical assessment and consult. She will remove my uterus, fallopian tubes, bilateral large ovarian masses and my appendix on this Friday. She said my right ovary is complex, septated, worrisome, and that my CA125 level is high but she made an educated guess that I have about a 60% chance that the masses are benign so I feel so relieved. The waiting has been challenging and scary, but I feel so much better now that we have a treatment plan going forward. It has been so helpful to read the messages in this forum because I can learn from the experience of others. Thank you everyone!
    • Bexp66
      Bexp66 karen79086

      Posted

      HI Karen, I had the exact same opeatin that you are having three months ago and or the same reason.It is eally great that you are being seen and operated on by an oncologist, they are the experts and will doeverything that you need doing. If you have any questions, ask away! Hugs to you, it is a scary time! Becky
    • karen79086
      karen79086 Bexp66

      Posted

      thank you Becky! Thank God you are ok. How are you feeling now? I am fasting with clear fluids only today in preparation for tomorrow. I am very uncomfortable as my ovaries are very large and painful and I look and feel pregnant. I am trying to be calm, packing just the essentials, and I do feel scared by the major surgery as they will remove everything by laparotomy with a midline incision as the surgeon said it is too big to remove by a transverse incision. I will be brave though, because it is even more scary to not know what is going on inside me! How many days were you in hospital, how did you manage your pain following surgery, do you feel recovered now 3 months on? Thank you for your support and sharing, Becky. I feel so much less alone now.
    • Bexp66
      Bexp66 karen79086

      Posted

      Hi Karen, I hoep everything has gone really well for you. I am pkay but my cyst was actually ovarian cancer and luckily they found it really early and hoping for a complete cure by removing everything. I am half way through chemo at the moment and it is going as well as it could. From the operation I have had the midline cut - huge one as my cyst was huge! I also felt sooo pregnant before the operation and it was a relief to have it gone. Initial recover was okay, painful but controlled with a morphine pump as first (hopefuuly you will have one ... press away, you cant overdose and it is much better to stay ahead of the pain.) I was in hospital for a week but I also had a bit of colon removed (it looked dof=dgy but turned out to be fine) which slowed recoveray at first. I had heaps of staples and it felt much better when they are removed. I do feel recovered and have done for about 6 - 7 weeks. Drink heaps, walk every day and rest loads. keep asking because I know I had loads of questions as to whether I was normal or not!  Take care and let us know how you have gone. You could start a new thread if you want ... might make it easier to follow! Lots of love
    • karen79086
      karen79086 Bexp66

      Posted

      Hi Ladies: had my radical hysterectomy on Friday, June 26th and am just back home now. A pathologist was in the OR and incised my right ovary. Unfortunately for me it is cancerous. My left ovary, which was fluid-filled and which we were not worried about, is also cancerous so it spread from right to left. They removed my uterus, ovaries, fallopian tubes, appendix and greater omentum. I have to heal over next 4 weeks and then begin chemotherapy. There are no words either to express how I feel or for you to express your empathy to me. I am in high spirits because: A) My cancer has not ascended and B) My wonderful gyne-oncologist believes it is treatable. Patho is staging now. I pray that it is 1 or 2 but have no control over this. Best of luck to everyone, and I will cross everything I have to wish you health and happiness with no terrible outcome like mine.
    • karen79086
      karen79086 Bexp66

      Posted

      thank you Bexp66 so very very much for your message which I received prior to my surgery. You have been a godsend to me. Health and happiness being sent your way, dear friend.
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