I have been diagnosed with a large pelvic/abdominal mass

Posted , 5 users are following.

About 2 weeks ago I was diagnosed with a large pelvic / abdominal mass, which is causing pain and pressing against my diaphragm and lungs . I saw an oncologist and had bloo

d tests. The blood tests included a CA 125, and it does not indicate cancer. My oncologist wanted me to have a biopsy, but the intervenational radiologist is worried about excessive bleeding

so he recommends that I have surgery to remove it, and bypass the biopsy. The mass is very large, but I am worried about the surgery. Has anyone been through this?

0 likes, 12 replies

Report / Delete

12 Replies

  • Posted

    Hi there, you're not alone! I too had a large pelvic mass, this is what happened with me...

    Almost 3 months ago I went in for a regular check up at the doctor, where my GP claimed to feel something enlarged within my abdomen. I was told to come back in the morning for an ultrasound, which then revealed I had a pelvic mass that was AT LEAST 24cm long. I was shocked. They took some blood to make sure my kidney levels were okay for the CT scan my GP recomended. They sent me for a CT scan the same day, which I had to wait over the weekend for the results to get back. My mind was racing of course, and I spent all weekend crying because I thought I was terminally ill.

    Well, got the results back on Monday which revealed I had a 26cm cystic mass likely arising from my right ovary. It was fluid-filled. Due to my age (I'm 25, was 24 at the time) and the type of cyst, it was more likely than not going to be benign. I asked to be referred to one of the top Gyno Oncologists in the state, and had an appointment 3 days later. She did a pelvic exam and said that I would have to have open-surgery aka a laporotamy to remove the mass. I was told I could possibly lose my right ovary and fallopian tube if they were destroyed by the mass. She advised that she would try to make the icision as small as possible, but that due to the size of my mass, there would be no room for a camera in my abdomen and therefore I was not a good fit for keyhole surgery aka laproscopic surgery. It depends on the surgeron and the size of the mass for what type of surgery you'll need. We went over everything and the surgery was booked for 12 days later. They sent me to the lab to get some pre-surgery bloodwork done to make sure I was a good candidate for surgery and to look for tumor markers. They ran that CA 125 test as well but as I learned on this forum, a positive result on that test does not always indicate cancer. My bloodwork all came back normal. I had never had surgery before, never been put under, and was extremely anxious for surgery date.

    Like you my cyst was so large it was pushing against my diaphram and lungs, making it hard to breathe, but not noticably so that I chalked it up to anything abdormal. My stomach had gotten larger but I thought I had just gained weight.

    My surgery was super easy, maybe only lasted an hour total not counting pre op and post op prep. They gave me a sedative through my IV before I went to the OR and if you're nervous, this stuff makes everything seem wonderful. They will put put a catheter in you while you're passed out. When I woke up, and was very drugged up, all I had was a measly 2 and a half inch scar horizontally across my bikkini line. That's it! I went into the surgery expecting to come out with a knarly scar from them opening my up vertically. I was then informed that my cyst was not attached to anything when they got in there, but likely formed off my right fallopian tube and not my right ovary like originally thought. They were able to save all my organs. In the 2 weeks from diagnoses to my surgery date, the cyst had grown 4 inches larger and was a whopping 30 inches by the time they popped it, drained it and pulled out the sac. They drained 6 litres of fluid from my body, and I instantly lost almost 20 pounds in body weight. They sent it off for biopsy and was confirmed to be 100% benign. Had they suspected cancer or had the lood tests indicated cancer, I would have opted for a hysterectomy. I was in the hospital for 2 and a half days before going home. Keyhole surgery you can often go home same or next day, while some people who have full laparotomies can be in the hospital for 3-5 days post op.

    My recovery took about 6 weeks but I was back at work after 4 weeks. Every person is different though.

    Have they done a CT, MRI or ultrasound to give you an actual diagnoses of the mass? If so, I would opt for surgery and have a biopsy taken after the fact.

    Report / Delete Reply
    • Posted

      Hi All

      Pls help i am going thruough the same situation and that too second time. At age 32 (2 years ago) i lost my right ovary and tube due to 20cm cyst which came out as borderline.

      And now again 2 months ago i got ovarian tumor on my left ovary 10cm approx. Ca125 is normal so drs think this would also be borderline.i am waiting for surgery. i am so broken as we were trying for a baby and found out at ultrasound. I dont have kids and feel so much unfortunate that in juss 2 years all this happened.. again drs wan to remove my this ovary and then i dont have any chance to have my baby...And moreover the surgery wait times here is killing me as definately it would be growing more and more.

      Report / Delete Reply
    • Posted

      Hi, can they just remove the cyst, if they can tell them you want children so anything they can do will help. Maybe ask about preserving eggs etc. Surrogacy is an option. I have been told that I won't naturally have children but also my tubes are beyond repair. Most likely hysterectomy.

      Hope you get answers soon. Xx

      Tanya

      Report / Delete Reply
  • Posted

    I had something similar, I was told I had cysts, went in to have them remov to come round after surgery to of been opened up and a mass was there. They removed it along with my right Ovary. To be honest it was fine. Looked after very well. Obvious pain after surgery but was pain free for 2 years and now have the same on my left so I am booked back in for surgery in January.

    Tanya

    Report / Delete Reply
    • Posted

      Thanks for replying Tanya.. i see you are also again in the same situation.. ya we discussed for embryo freezing and i got 2 frozen embryos but still scared what if something goes wrong...So lot of negativity by now..

      And if you dont mind what type of cyst u hv now and what size , what plan they hv for surgery is it keyhole or the scary open one.. mine they say we will start with key hole but depends if by any chance they hv to open me again.. so lots of questions but answers not certain..

      Shelly

      Report / Delete Reply
    • Posted

      Hey, it is a lot of understanding certainty. I have 2 cysts 1 is bleeding internally. My main problem is I have hydrosalpinx so my fallopian tube is blocked and damaged. The operation I had 3 years ago was meant to be keyhole surgery but ended up being opened up due to my cyst being attached to my bowels and intestines. They are trying to prevent this again now. If your cysts are no cancerous I would ask them just to remove what they need to but try not to take the other Overy out. Other option is leave your whom in and have ivf.

      Tanya

      Report / Delete Reply
    • Posted

      This is Beth's partner replying, unfortunately ovarian cancer was found during surgr.

      The surgeon drained 15 liters of fluid from the mass. We are not sure what stage she

      has. Beth starts chemotherapy mid next month, the Diagnosis was a shock to both

      of us. I am hoping that Beth does well, and kicks this cancer to the curb.

      Report / Delete Reply
  • Posted

    Hope you're doing good!

    I got diagnosed with a large ovarian mass in early October. I had awful abdominal pain and went to the ER thinking it was appendicitis, but CT scan showed the mass. During labwork my CA 125 showed up elevated at 84, so I was referred to a gynecologist oncologist. I just had my surgery on November 30th, I had to have a laparotomy because my cyst was between 17 and 21 cm, not sure what the final measurement was. I have yet to receive my biopsy results, but I'm trying to stay positive. I'm only 21, so really trying to keep all my reproductive organs. I would say to just go through the surgery and try to stay as calm as you can. Hope all goes well, and if you have any questions feel free to ask me.

    Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up