hi everyone,
i was told around three weeks ago after a ultra sound and a CT scan that I had a cyst sized 9x21x23... I panicked as anyone would, they told me they are concerned as its large for a woman of my age to have such a large one (I'm 26) they also told me that they are not 100% where it's growing from as its so large, but they think it's the right side. The doctor also told me I'll have a cut right down the center of my stomach due to the size of it. This also upset me when discussed with me, as after doing the whole Google search I thought I would just have a straight cut along my bikini line (which can easily be covered) where as this will be so noticeable. They also told me due to them not being 100% sure on where it is growing from, that egg collection should be offered to me! as its out of my hands. Has anyone else ever been offered this?
I asked for a referral (second opinion) as the doctor I was first sent to I had no trust/confidence with her. She told me she was wanting to check the levels of my blood (LDH) to check the levels to rule out cancer or something... I had two blood tests and both clotted in the tube which meant they couldn't get a result, they then told me it was ok to go ahead with the consultation for the operation without the blood result. What annoyed me was when the blood test was first discussed it was urgent they knew the results...
Therefore I asked to be referred to another hospital for a second opinion.
Can someone please give me some advice, I'm concerned again as they keep saying they won't know where it's growing from until opening me up, and I'm worried they may take both ovaries, then it would mean no children,or they may remove one and what if my other doesn't work? I am so stressed over so many things and feel some replies on this forum will give me some guidance. Hope someone can help. Thanks
Hi Jt,
im also 26 this month and have a 17x8 cyst. I think it's weird that they said they couldn't tell what side it's on. Did you have an internal scan? That is how they knew where mine was and I could see it on the screen. it was abit hard to find at first but it was definitely there on the right ovary. Maybe go to your GP for the blood test to get that seen to first so it's all ready for your second doctor? Also my doctor thought the c section cut best for mine straight across.
Don't worry too much! Get a second opinion!
I was 30 when I had mine done. I had ultrasound then ct scan. Mine was a similar size and was attached to my right ovary which was also removed. I wasn't offered egg collection. I know your fears though as I have no children. I did sign to give them permission to take appropriate action should they find anything wrong. Should add it wasn't malignant but was a borderline result.
Should add that the blood results can be indicative but aren't conclusive as to anything.
My scar is big and stretches up round and past the belly button. I'm 8 months post op and it has faded lots.
Hope this helps. Good luck x
Hi sue,
Hope you don't mind me asking but was what they removed a borderline result ? I've recently had the results back from the cyst and ovary they removed and it Cancerous what they call Mucinous stage one cancer. They believe they have caught it all but all the information I have been reading about it states it borderline was just wondering if it was similar ? Thanks xx
I can appreciate how frightened you must be. When I had my cysts they were so large that they were unable to tell where they had originated from as they filled the whole of the pelvic space this was after uss and CT. The surgeon also had to give me a vertical cut from belly button downwards..With a horizontal cut they have limited scope to really look all around especially with a large mass..then they may end up having to cut both directions anyway and you could end up with an L shaped scar instead. My scar is now 10 weeks old and I could still wear a bikini with confidence..I have a very neat white line down which only becomes bumpy towards the lower end and this would be covered by any bikini bottoms.
I can't advise on the egg collection but I'm sure a second opinion wouldn't hurt and also it wouldn't take long for them to take a second blood test at your gp to put your mind at rest.
Best of luck with your surgery and I hope the outlook is good for you xxx
Hi Rose,
I have been to two doctors now, and they have both felt my stomach (one done an internal examination) and they both said it seems to be on the right hand side, they just keep saying on ct scan they can't actually tell where it is growing from with the size of it, therefore they will only know when they cut me open. I just worry so much about having children, and wish I would of had one already to take that fear away 😔 Thanks for your reply
Thanks for the information Sue. I'm so glad I found this forum!
What they removed was borderline, they tend to stage these results as well but I wasn't given it as a stage. It was apparently a mucinous cyst but I hadn't been given a print of the exact results. I believe my tube and ovary tested negative. The consultant did say it wasn't the same as cancer, I just go back for ultrasound scans every 6 months.
Hope this helps x
Oh really. Sound similar to mine but I have to go back in a couple of months to check in healed ok and then be booked in for a colonoscopy as it can be linked the bowels or something, and also have a ct scan after 6 months but I am classed as having early stage one cancer but they think they have caught it but need to have more tests to be sure. They offer chemo but they don't think it will be worth it as they think they have caught it.
Thanks it has helped alittle x
Sounds similar to what they have said to me. Do you mind me asking you how long you where in hospital for? And how soon where you able to work again? Yes the first doctor told me it my be and L shaped cut, but then when I spoke to my gp she looked at me oddly and said she had never heard of that before. So I feel I'm being told different things daily. I can't wait to call at 9pm tomorrrow to finally arrange an appointment at the other hospital! I just want it over and done 👎🏼
The ovacome website helped me understand the difference. Sounds like they're taking good care of you though. Good luck x
Well that's annoying, but they will definitely know when you are open and they will easily see what side it's coming from and what to do. This has most likely happened before.
Is it possible to have both ovarys removed from one large cyst? I'm really not sure? Did you find this out?
I don't know about the egg collection. It wasn't offered. I also worry about future fertility. I don't want anything but the cyst removed and the surgeon did say they would try. It sucks..but you can only hope for the best .
Dont beat yourself up about children. It will happen in time.
take care! Don't stress! Hope you get lots of answers!xx
I was in hospital for 3 nights but I had to have everything removed (as I already have children it was safer to remove everything). I think with a large incision you will probably require a 2-3 night stay anyway. Xxx
Sounds like they offered you egg retrieval in case the worse case senerio come true and you have to have both ovaries removed. I would wonder why also that they can't do a bikini line incision instead of an up and down one. I think I would keep asking until someone could explain that one to me. I had a 7 cm cyst removed laparoscopically along with both tubes and ovaries. My Ob did warn me that if she could not get it out laparoscopically she would make a larger bikini incision.
Yes that was my thought? With them not being able to tell me where it is growing from with it being so large, they did mention collection. I got a date through today for my referal to a different hospital. I have to wait 10 days! Im not happy. So I am having to call every morning to see if there are any cancelations. I just cant wait to get the operation date through
Little update, I have to basically start everything from the beginning with the new hospital I have been transferred to. They want all there own scans, therefore it may mean I need another CT scan which I'm dreading. I got a call on Monday 15th telling me my appointment would be on the 25th February. I explained I'm on the emergency list and they stated anything on the emergency list will have an appointment writhin 14 days. Just seems like so long away, just to be told everything that I have already been told.... I'm also worried as the hospital advised me to come off the pill, and I'm now worrying I'm pregnant as my boobs are extremely sore and achey. I have never had this type of feeling in my boobs. I just can't wait for Thursday to arrive!
Hi Jt,
Did you get that appointment? Have you went to the gp to see if your pregnant? Stay calm and keep on top of doctors. I'm still waiting too for my letter😓 it is awful waiting. Waiting 4 weeks for the letter. Also hoping it comes soon.. Like.. Tomorrow.
Also emergency list
Hi Rose! I wasnt pregnant thank god! But they have now told me there is a grey patch on my scans and a blood vessel connected, therefore they are now concerned its cancerous! They are calling me tomorrow with blood results. And then the surgeons all meet on Wednesday and will look through my notes, were they will decide when I will have my surgery (the nurse said it will be within 2 weeks) so i will find my operation date out on Wednesday 😬 Oh Rose thats so long to be waiting considering your on the emergency list like myself! What hospital are you at? X
Hi sue ,
Yeah when they first told me the ovacome website really helped me understand it all a lot better and the nurse/surgeon/my GP have been supportive and given a lot of info which has helped.
Thank you
Xx
Oh dear 😓 really hope it's not Cancerous for you!! Fingers crossed for the blood test to be good news!!🤗
I know! I'm in Northern.Ire the letter should be soon hoping my surgery will be at the end of March!💪
Good luck tomorrow!!
xx