Hello lovely people, I hope you all had a lovely weekend!
So I had my US scan this afternoon after on/off symptoms over the last few weeks. A 2cm 'cyst' is showing on remaining ovary. Could be follicular (although on Cerelle which prevents ovulation) but it's also not completely 'simple' as it has what looks like a septum. No other info. I guess only time will tell.
I see my Onc on Thurs. Expecting a 'wait & watch' approach with perhaps a repeat scan maybe in January? Or later? It might go away if it's nothing sinister...it might not if it isn't. I guess only time will tell.
Trying not to worry but was wondering if there were any specific questions I should be mentioning at my Onc meeting? Is it worth asking for a CA125 even though this was not really an indicator for me last time (it was 7.9 when diagnosed with my BOT when at its biggest)?
Your advice, as always, is greatly appreciated.
Jemima xx
Written by
Mrs_Atko
To view profiles and participate in discussions please or .
Hi Jemima, it won't hurt to ask for a CLA125 blood test and I'm sure you'll be interested to know if it's higher this time or even for trend. Are you having any other symptoms or have they settled down? It's a worry isn't it however whatever your cyst is it will now be monitored and if need be you will have a treatment plan put in place.
I can't offer any advice howeve it may be worth ringing the nurse in the morning and chatting it through with her so that you can discuss what to raise with your Onc on Thursday. You need peace of mind that you can have another scan when you feel you need one and you need to have as peaceful and wonderful a Christmas as you can. Starting chemo again when it's not definitely required can cause issues however you need confidence in a watch and wait approach.
Thank you Clare - yeah maybe a CA125 would be interesting more than anything. I've just been getting on/off pain on the left hand side (which, a few weeks ago, also radiated through to my lower back & down my left leg) but I practically live with a hot water bottle strapped to me at the mo, which helps 🙂
Had on/off bloating too but that has calmed down. I said to my husband that one 'positive' is that my symptoms aren't completely unfounded & im glad I pushed for a scan. It makes me trust my instincts. I know there is little they can actually do at this stage really apart from wait & re-scan...I have a trip to Florida shortly so that will definitely help keep my mind occupied in the lead up to Xmas.
I'll be interested to hear what my Onc thinks. I'm not sure it can be a cyclical follicle cyst when I'm supposedly not ovulating from that remaining ovary due to the type of contraceptive pill I'm on...or am I wrong?
I was lucky that I never needed chemo...they got my first tumour out which was borderline mucinous & because it was bagged before removal (so subsequently didn't rupture in situ) I was staged 1A instead of 1C. I thank my lucky stars everyday, but reoccurrence is a big concern, as I know it is for most on here xx
It's hopefully nothing but I am sorry you have to go through the process a the same time it's very stressful and you could have done without it!
I am inclined to agree with Clare regarding the CA125 BUT only if you think that you can handle the stress of it! My CA125 was always normal too so it's not a good indicator for me so I don't think about it at all if I can help it! I know some of the ladies on here find the whole rollercoaster of CA125 very stressful but others need to know and are more comfortable knowing so it's a very personal decision!
Is it worth asking them for an MRI dya think? They give a lot more detail and I think with your history they should be amenable to giving you one even if they believe that it's just a cyst??
I don't think I am being any help at all what I really just wanted to say is that I am sorry that you find yourself having to deal with this! Lots of virtual hugs and positive thoughts that it's just a nuisance cyst that will dissappear by itself! Mind yourself and try not to worry too much!
Thanks D - I hear what you say re: CA125. If I had it & it was anything other than normal, it would probably make me worry more. But I'm also a curious little beast. I'll see what my Onc thinks.
Yeah I wondered about MRI but thought US was better for these type of things? I'm just glad that I was taken seriously as (hopefully) my Onc won't think I'm being a paranoid silly billy!
Rubbish it's there but hey...the little blighter might just get bored and do one! 😆 Xx
Hi hun. Ah sorry to hear that. My US showed 1.5cm cyst on remaining ovary. Onc told me not to panic, apparently they are very common in women in their 30s. I'm having mri next week then week after will get results and blood results. I know it's different for everyone but I was told 1 in 3 chance of needing another op. My husband asked that question, it didn't even occur to me! I was also told 97% chance BOC wouldn't come back after I asked about odds of it being bad news. Im expecting a wait and see as apparently most cysts disappear on their own, if it doesn't then that's a different issue. Either way I'm not letting them take it until they have harvested some eggs! Fingers crossed for you in just a regular annoying cyst x
Thanks Jen - I know lots of women experience regular 'cyclical' cysts that are basically left over follicles, but don't you have to be ovulating to get those?
I'm glad you're being thoroughly investigated & I keep my pinkies crossed all your results come back favourable. 1 in 3 chance of needing another op sounds a bit scary but I guess the odds it being another BOT being so low is positive! I think, like you, it'all be a wait and watch. Look after those eggies of yours Hun xx
Hi there hopefully it will be nothing to worry about but it's good to get it checked out and your on Will monitor you closely to make sure.
Florida will definetly take your mind off it, have fun!!
O sweetheart sending big hugs ... a ca125 can't hurt and MRI could give more detail ... fingers crossed it nothing sinister and just a cyst from all the trauma you have been through ... there are any number of types of cysts that can occur .... stay strong as I know that you are... all the best for Thursday and let us know how you get on xxx
Thanks hunny - I'll def mention possible CA125 & MRI to Onc & see what she thinks. I guess I'm not expecting anything other than it to be acknowledged and effectively followed up with another scan. I assume this could be anything up to 3 months time...my hopes are if it IS something a bit squiffy like last time & does need whipping out, it's done early enough so it hasn't grown too big to risk having to lose my last ovary...that's my thinking. My sonographer made me laugh today though...she was so gobsmacked at the extent of my knowledge about all this she thought i was 'medical' 😆 She said I should offer them a talk on BOTs and my experience 🙌🏻
Hello Jemima, I'm thinking you may as well ask for a CA125 test even if it's not a good indicator for you. It might reveal a trend.
Good luck with your onc appointment. If there is anything wrong you'll know you've caught it early. As Claire suggests, the Ovacome nurse might give you some pointers to ask the onc. The cyst will certainly be monitored closely, especially since you've been having symptoms.
Good luck with your appointment. Isn't it annoying when everything seems to be going so well and then something else comes along to worry about. I know you have been doing incredibly well. Keep us updated and good luck. xx
So sorry to hear that you have to go through the waiting process again. Fingers crossed it turns out to be nothing to worry about. I know that doesn't help you at the moment. Go and enjoy Florida and have a lovely Christmas. Sending you a hug. Keep us informed. Thinking of you. Xx
Everyone seems to have said all the good and sensible stuff, so I will just send you a great big, virtual (((hug))) and will think of you when you are having your appointment xxx
I just want to wish you well, it could be a simple cyst but no harm at all to have it investigated. My 125 on recurrence was normal so its not a reliable factor for me but it works for some. Maybe have the scan and deal with whatever you have to when you come back from Florida. I cant imagine it is something to worry about but you could always ring the Ovacome Nurse or your gynae liason nurse and chat with them.
Thank you hun - yes, CA125 wasn't a good indicator for me last time. I'm sure Florida will be good for the mind, body and soul (and just a great excuse to act like a complete kid!) xx
Hey Jemima, how unsettling. We all know so much about this subject so our minds wizz ahead to what next and second guessing. I'm pleased you have an appointment on Thursday and hope it can put your mind at rest a little. So good luck with that. I went to Florida in October and felt 10x better by the end of the trip. I think florida sunshine should be available on prescription to all us ladies.
Thanks hun - sounds like you had a fab time in Florida. We went a few years ago and absolutely loved it! Florida sunshine is glorious and should most definitely be on prescription to us all xx
Have thought of asking for a CEA test. It is raised in 88% of Mucinous. So a good indicator but again not guaranteed. As I understand it CA125 not a good indicator for mucinous. Normal CEA reading is 3 or less except if you smoke when it maybe normally up to 5 (check on these figures as doing from memory). I had to "push" for this test. I am waiting for the results at the moment. Personally I will be asking for this test as a regular monitoring option. Also have you thought about the CA19-9 biomarker test? Just a couple of options for you. If you have either/both done it could give you a base line to work from.
Hi Fay - thanks for your message. I've read about CEA and CA19-9 so maybe i will bring this up with Onc on Thurs. Thank you for reminding me about them xx
Jemima this is just not what you need - sorry you've had an extra dose of stress foisted on you. You did right though to face it. Whatever it is or isn't you know the medicos can help you through it, and we here can give you morale boosters along the way. Take care of yourself and thanks for always being there for others with helpful and kind messages.
Thinking of you (am waiting to hear from my medicos so empathise extra big time)
Hi Netti - thanks hun - I know one way or another i'll be fine. Just don't relish the thought of having to undergo anymore surgery quite so soon (who does!?). Good luck with your waiting around too...it's horrible huh! If it's something, we just 'deal' with it...but the not knowing...drives me crazy! Look after yourself too xx
Hello lovely, difficult (nay impossible??) not to be concerned but it seems that you've a good Onc and I know that you will be really well prepared to get the most from your appointment this week.
As Faye says, I'm also tested for ca19-9 having had a mucinous one and despite never getting above the 35 cut off, my onc also checks out my ca125.
I think I'd be inclined to have questions about pain (it's possible cause, treatments etc) and cyst separate. Do write down the natures, length and frequency of the pain episodes so your onc understands clearly and can manage this. If as you say, the decision is to 'watch and wait' you need to know from the team, what if anything should prompt you to be back in touch sooner...
It might be worth asking if the pictures from the recent USS have been reviewed by the consultant radiologist at MDT meeting. USS are really useful but a lot (more) depends upon the experience of the person doing them. As someone else has commented, it may be beneficial that another scan or type of scan is done to give clearer information. I had two USS (pre dx) with a mucinous tumour in situ- (one at fertility clinic and one by general radiographer) which did not diagnose and suggested 'nothing sinister'. No idea if this is common or mine was especially tricky...
I wholeheartedly relate to you wanting to know about what is affecting you and however currently unsettling, you listening to and trusting your instincts is a really good thing... Shall be thinking of you with all hopes for the best of outcomes Sxxxx
Hi hun - thanks so much for your message. All very valid points which I'll certainly bring up with my Onc on Thurs. I remember when I spoke to her about reoccurrence after my last op and she said if i was having further USS's then she'd want them looked at either by herself or by one of her team, so I'm pretty confident she'll be all over that one when I see her. I also had a lengthy chat with my Sonographer yesterday, so I think she was as thorough as she could have been. But it won't hurt for me to double check and also see if it will be discussed at a MDT too. I'll also definitely follow up on the CA19-9 because you're the second person to mention it and it's something i read about the last time (but was never offered) xx
I would have as many tests as are offered to you to make sure nothing is untoward.
Cysts are normal,my daughter had them,but they have gone away,but bearing in mind your history, it's better they keep an eye on you.
I am sorry you are going through this again,but just be happy you are being taken care of and look forward to that fab time in a Florida,have been several times and love it and miss it.
Hope you get on well tomorrow. I have had coffee with the lady who had mucinous who posted in the macMillan forum. She had normal CA125 but raised CEA and raised CA19-9. These went back to normal after her op. Definitely worth asking your oncologist for these 2 tests.
Some info re Prof Gore. I suppose you found the study which was going to compare the usual chemo for OC treatment with the chemo used bowel cancer treatment but being used for mucinous OC. It was stopped because they did not have enough mucinous people. No results were published. Prof Gore was the UK expert for the trial.
Will be thinking of you tomorrow. Am working in your neck of the woods tomorrow so if you see a blue car with Reg 62 FL then give us a wave
Hi Fay - thanks for letting me know how your chat went. I'm near Pershore. Seeing Onc at Worcester. If you fancy meeting up sometime, I'll message you my number x
So I've seen my Onc - my scan from Sunday was reviewed by the MDT today and she doesn't feel it is anything to worry about. The tissue surrounding the 'cyst' looks healthy. So I am going to have another scan towards the end of Feb and see her again on 2nd March and she would expect it to have disappeared by then. She didn't feel it was necessary for me to have any bloods done either. So for now, I'm going to try and forget all about it (& ignore the nagging twinges/pains - unless they get really bad, in which case, i'm to go back and see her)...onwards and upwards and YABOO SUCKS to it all x
Thank you Helen - as we were leaving the hospital I started getting these god awful, searing type pains that brought on this horrible wave of nausea! Literally couldn't make it up if i tried...a few deep breaths and they subsided...ha, it's like my body was slightly rebelling...bloody typical! lol x
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
xx
Complex ovary cyst 
Looking for good news please
Ovarian mass on right Ovary
Ovary dermoid cyst
? Ultrasound Report - 4.2cm cyst containing irregular heterogenous component with thin septum on enlarged ovary ?
