Ovarian borderline cyst and removal of omenctum

I had a borderline cyst removed and now they want to remove uterus and omenctum. I discussed with my generalist and he considers that this is not good since my cyst was not malignant. He read the hystologic report and confirmed that I didn't have cancer. The C125 was normal, the peritoneal cytology was normal. Ma generalist said that we need the omenctum and that removing it could have very bad consequences for my future. Is it true that I could have problems to urinate? Could someone that has had this experience explain me how was the surgery, the consequences, the time needed to recover etc? I would like to know consequences short and long term. If I didn't have cancer, my cyst was very small and localised I don't understand why are they treating me like if I had a cancer. Thanks in advance for your messages.

20 Replies

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  • I had cyst only but they found cancer cells on my omentum so I think my op was good decision. BUT I don't say that you have cancer there, just my experience.

  • Thanks Daniella. And how was your recovery? How did you feel after surgery? How long did you need to recover?

  • Umm, pretty easy,only firts couple of weeks after op was painful but after that no pain and no problems at all.

  • I had my Omentum removed, I didn't know it existed and certainly havent missed it afterwards!!! I have no problems urinating.

    You seem to be getting some poor advice from your generalist and I suggest that you need to write all your questions and concerns down and maybe call the freephone helpline here plus speak with your oncologist again.

    Borderline cysts (used to be called low malignant potential) can sometimes have the potential to become cancerous and I assume your oncologist is thinking of prevention of any possible future issue, difficult to answer for him or her.

    Full abdominal surgery takes up to 6 weeks to recover from , no lifting, no driving, taking care and lots of rest.

    There are ladies on here who had borderline cysts removed and also ladies whose border line developed into malignant so I hope they will respond and you can have more detail to help you make your decision.

    Also you can do a search for borderline in the search box at the top

    Take care

    Clare

  • My doctor is not an oncologist, it's an obstetrician. I have the feeling that he doesn't know what I had.

    What happens if I drive? I am going on vacation 6 days after operation. I will take a 9 hours flight but I will stand up on the plane and move. I will choose a good sit with enough place for my legs and I will request for assistance at the airport. They will take my in wheel chair to the plane. I know I cannot swim nor ride horses for a while but how long time without riding? How long without swimming?

    I feel angry because they (doctors) don't know. Maybe they cannot know everything and in case of doubt they prefer to remove things.

    What causes this kind of cysts? Why my generalist never realised that maybe I had an hormonal problem? She never made a hormonal blood test. Maybe this is not the cause of the cyst. But during years I had bad knee pains and he never prescribed something for it. She just said it's because of my age and said I should have a prosthetic knee. Of course I refused and saw a specialist that prescribed me chondrosulf and now my knees are perfect and I am jogging again. I have the feeling that my generalist is trying to save money to my insurance that I pay very very expensive.

  • I think ask for a referral to a gynae oncologist and he or she may allay all your fears, Can you defer your trip until you know exactly what is the diagnosis, it should be no problem if you have taken out travel insurance. Generally after any surgery you are not supposed to lift anything heavier than a cup of tea. So I think horseriding etc is out of the equation for at this time as well,, Dont want to spoil your fun but you also have to be realistic.

  • Had mine removed laparoscopically along with ovaries and tubes, (borderline diagnoses) I still have my uterus (drs choice which I accepted) . Can't say I miss it, like Claire I didn't know it existed! Went home next day. Took about 6 weeks to get back to normal (ish) now 2 years on doing ok. All good wishes Whatever you decide. Take care. Jenny x

  • Hi there

    I remember your previous posts and it sounds like that , totally understandably, you are still uncertain on how to proceed.

    If your consultant advised this surgery I would go ahead and have it. I had full abdominal open surgery and was up and about and in the shower the following morning. After a couple of weeks I felt a lot better and was able to.drive after 4weeks. I went back to work after 9 weeks. This is nothing compared to almost eliminating future problems.

    I have been on these boards for a few years and have seen many borderline ladies have no further problems.as far as we know. But others were found to have issues elsewhere , had invasive cancer found on other organs , some were found to have had invasive cancer and a small number have recurrence as fully invasive cancer.

    I wished I could reassure more than this xxx

  • Hello Charli.

    You are right, I don't know who I should believe and what I should do. And of course I am afraid of another surgery although the first one was nothing. This one will not be open but just 3 key holes but the fact that they remove the epiploon shocks me. If we have it we may need it. It holds the intestines and other organs. Everything will fall down without this support. At least is what I think. Of course my doctor says nothing like this will happen but he wants to do it and maybe he wants the money too. He's a surgeon.

    I would like to know if someone is living without epiploon how is it and after a key hole surgery how long it takes for me to go swimming, driving and riding. I have a plane trip programmed 6 days after surgery.

    Thanks a lot for your advise.

  • Almost everybody on this site has had this removed and I have never read of anybody saying that it has been a problem.

    I know that you have planned a trip , but as I am certain you know after major abdominal surgery such as this you are at very high risk of a blood clot such as a pulmonary embolism which can kill. Also the airlines are now very particular about seeming people fit to fly.

    Is there any way you could get a second opinion from a Gynae oncologist ?

    Take care xxx

  • I think 6 days is enough. I told my doctor and he didn't say I should not travel. I already modified my trip once.

  • Do you think 6 days after the surgery I will not be ok?

  • Hi again Fantasia

    I honestly don't think that you will be and your insurance may be invalid if anything happens. You could be liable for all of the costs involved.

    I know that you have been in brilliant health until now , but if you decide to go ahead with the surgery you will need to invest time into getting over it.

    What you are asking is the probability of recurrence with a uterus and an omentum vs without.

    I know that this is all so hard and scary...perhaps deferring a decision either way until after your holiday might be the best option.

    Take care xxx

  • I was advised not to drive for 6 -8 weeks.I also would not advise swimming until your wound is fully healed -infection etc.

    9 hours is a very long flight even for someone who has not had surgery. You will be at even greater risk of developing clots so please ask expert advice on all of this.

    Take care X

  • I had my omentum removed and have had not problems at all with urination or anything else. I was only able to drive after four weeks, once you can safely do an emergency stop really, but I had full abdominal surgery. I would have been physically able to fly within six days but would have been unable to carry my luggage so a wheelchair is likely a really good idea. However, I think there are possible complications of blood clots with long flights shortly after an operation but this may not apply with laparoscopic surgery. I returned to horse riding after two months but if I remember the delay had more to do with pains in my feet as I was still having chemo.

    I didn't go swimming until I was quite sure the wound was healed; this more to do with fear of infection than feeling unable to.

    I wonder if it might be worth you asking your oncologist what the implications might be if you delayed surgery until after your holiday?

    All the best! Helen

  • Good Morning Fantasia,

    I am no dr or expert but have been diagnosed at 3c high grade and had extensive involvement of the cancer, but I would like to help make a few points that might help you in your future decisions. Nothing is ever black and white and Ovarian Cancer is one of the grayest of cancers where there are no set rules as to how it attacks. The better informed we are the better decisions we can make for ourselves... Often times we are so caught unaware that we don't make good decisions based on fear and a lack of info that we often times are " forced" to trust what we are told and go with it before we know what is right for us.

    You have been given a gift of early detection on the cyst that was removed and tested.

    1. It sounds like your cyst was removed and evaluated early, this is great news.

    Suggestion: Since it was borderline, you might want to consider consulting a gyn/oncologist annually for peace of mind unless symptoms change etc. These can be very mild or almost non existent until detected in later stages which often times becomes much harder to keep in remission or NED.

    2. Generally our body was designed to be very self sufficient with what is needed, very few things in our body do not have some purpose or another, so looking at the bigger picture is often harder than it sounds.

    Suggestion: If you continue to be able to have your CA125 monitored and ultra sounds done on some type of regular basis then if anything should change you should be right on top of it, if surgery is required at some point to remove high risk organs. A GYN/ONC have 3-4 years extra training in gyn cancers so their approach often times can seem very pro-active but that is because they have the knowledge based on what they see at the time of the surgery to possibly prevent an additional surgery weeks down the road once the pathology reports come back.

    3. The Urinary tract issues. While the cancer was not on my kidney it had wrapped itself around the urithria going to the bladder and a portion of that was retracted and a stent was placed. I was fortunate to be able to have the flow restored with out needing additional measures taken.

    I sure hope this helps you understand why they are giving you the advise of being a little more pro-active than not.

    Best of luck to you.

  • Dear Rppizio,

    Yes, my cyst was already removed one month ago and now they want to remove more because it was borderline. Actually, as you say it was grey. They don't know but today my Dr said that there will not be "dust" on which this seeds could grow. There were not bad celly on my belly but they will send what they will remove to the lab to be sure. My Dr said that he will send because this is a procedure but if last time with the cyst inside there were not bad cells there will not be this time.

    Actually you are right, I was given a gift. I told the Dr that I am sorry I didn't go to see him last summer because after a big horse ride I had pains and he said it was great I didn't because last summer it would have been very small and I would have scheduled next visit for next summer instead of end november 2016 and that would maybe have been too late! He said that pelvic pains after horse riding are normal and I have had that pelvic pain since I am 5 years old and had an inguinal hernia following a big effort I did. I realised the exact moment when it happened. And it was exactly at the place of the right ovary. So this little pain I have had all my life! Yes, I was very lucky! We found it small enough not to bee too bad and big enough to be visible with the ultra sound!

    It's better to remove things that I don't need any more. I am 66 and have twins. Once I has pregnant and I had these two boys. That was a gift too. The best of my life. I may have an angel taking care of me.

    I prefer we do too much and not not enough and then we have to be sorry about it when it's too late.

    I am happy to see on this forum that there are many women that have not had my luck and have had cancer and are healthy again. I didn't know it's possible, I never thought about it before. I saw my parents die from cancer but I have had a very healthy life and an excellent health. I had never realised that I am getting old. I am thankful I had this chance and I have had so brilliant health and I hope after these bad moments it will be again the same for long time. I know one day my time will come, but I hope it's not yet. I am happy, I enjoy life and I have my sons.

    Thanks from my hart for your answer and I wish you too very good health for the future.

  • Hey there, you've already been given some good advice and i think if I had as many questions as you i'd be going back to my surgeon/doctor with the list in front of me. From a travelling point of view, I've had 2 rounds of surgery (June and August 2016), one was straight forward keyhole (3 incisions plus a 4th about 1 inch long) and I felt ok after 2 weeks. The second op was part keyhole but the bikini line incision ended up being about 13cm long so recovery was longer but I travelled to South Africa 3.5 weeks after and i'd say that was absolute minimum! So I'd definitely re-check about the travelling so soon after the surgery.

    I too, had a borderline ovarian tumour (mucinous) but it was quite large (15cm). I ended up having the effected ovary, fallopian tube and my appendix removed but I kept everything else, omentum included (as biopsies were taken and no invasive cells were found). Now, they may have decided to do this because i was only 33 at the time of the surgery and so ticked all the boxes for 'fertility saving' surgery. If I had been older and done with children etc, then they would have likely taken everything out to be on the safe side. So it really is dependant on a lot of things. Once again, best to go back to your medical team and ask specific questions as i'm sure there is a reason they are opting for the treatment they are suggesting.

    I wish you much luck and hope you do get to go on your trip!

    Jemima xx

  • Hello Jemima,

    Thanks for your answer. Today I saw my Dr. and I still don't know why he is so eager to remove things if the cytology was ok. He said I will never have uterus cancer and in case the omenctum has been contaminated it will be safer for me even if my cyst was only borderline. I realise that they really don't know and in case of doubt they are doing too much instead of not enough and this is maybe better for me even if it is not pleasant to have another surgery.

    My Dr said I can travel but I have to book a place with enough place for my legs, have assistance and stand up and move the legs during the trip. I will do it. He said it will be the same feelings and pain that when he removed the ovaries.

    I prefer to have the surgery now and not to go on vacation thinking that I will have it after vacation. I will have it and then I will forget. I will do what makes me pleasure, I will have a rest and I am very thankful because my cyst was found on time.

    Thanks for your answer. I wish you good health too.

  • Hello my friends and thanks for your advice. I took the decision and had uterus and omenctum removed. I was very scared but I don't miss it! I am very happy it's all over. I had no problems and the same day I was walking at the hospital. Next day back home. I have had no pains. I think I have been lucky not to be very sensitive at that part of my body because I never had painful periods and I even when I delivered my twins it was not too painful. It was unconfortable. Each one is different and sensitivity is different from one person to another. I am very scary and other parts of my body are very sensitive. I have not even needed pain medication.

    I will never again hear advise from friends that don't know anything. It was better to remove all that. I had two surgeries in a period of one month but I am feeling great and I can now go forward and forget this problem.

    Thanks again for your advice and I hope that my experience will help others to take the decision of remove that, specially when we are not going to have children anymore.

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