A longstanding cyst of over 5cm - what would you do now?

[Aquinnah]

Hi all!I've just had my u/s today, my fourth (or thereabouts) since my cyst was first discovered.6 months ago i had grown to above 5 cm, and today it was still over 5cm, though possibly slightly smaller than last time. Otherwise looks the same, which must then mean no worrying features, as that was the case last time. I see the gynonc on 9/11. Don't know what he will recommend. When all this was first discovered, I opted to track rather than remove, but the cyst was smaller then. I know that the RCOG guidelines recommends removal of over 5cm, but (I am second guessing here) I think it's poss that the gynonc will say we can continue tracking as it seems to have become marginally smaller and there are still no worrying features (I think). However, though I am all for avoiding ops, I am now beginning to change my mind - part of me just wishes all this would go away, as it's been 18 months and I don't see an end in sight yet. Although all this is a niggly worry, I can't say I am worried much about ovca now as it has been so long. Surely I would be quite ill by now if it was. What would any of you do? Remove or not when I have really been OK all this time. I only have niggly pains around times of appointments (a clear case of psychosomatic in my case I would say!)At other times, when I forget about it, like during my hols, I am not aware of hurting at all.

[Hudson]

Hi Aquinnah, enjoy your visit with your mom. Yes, she sounds like a very strong woman. God bless her!!

I'll watch for you to post when you return. Have a safe trip.

Linda

[Aquinnah]

Thanks for that Linda. I would have seen the gynonc sooner, except that I'm off to Sweden in 2 days time, to visit my very elderly mum for a week. So I may be off this site for that time - or not........just remembering that she bought herself a lap top at age 89, so I won't be completely cut off! By the way, she has had cancer twice (breast and cervix) as well as a clutch of rodent ulcers and very nasty TB as a small child, but is still going strong (sort of) and rapidly approaching 90! Yesterday she was putting winter tyres into the car to go without any help and have them put on for the cold season. She's a strong woman - and it proves to me you can survive a lot!

[Hudson]

Hi Tanya, well at least Nov. 9th isn't too long to wait. yes, you are right, the odds are definitely that it is just a cyst. Keep in touch. I will check here periodically in case you ever want to chat.

Take care,

Linda

[Aquinnah]

Thanks again for your input. Yes, you're right - it's time to act, I think. The size of 5cm is a cut off point - I have now found one of the articles that talk about it. It is http://www.greenjournal.org/cgi/content/full/102/3/589, a piece of research on post menopausal cysts.I hae seen the same research quoted elsewhere,  mainly american sites I think. Anyway obviously the odds are by far that it's just a cyst I have, but by now it has been long enough, I think.So roll on 9/11 (whoops! That's how we would write it here in the UK - I mean 9 November).

Tanya

[Hudson]

Forgot to answer your last question. yes, I had the serous cyst adenoma. Mine was benign. It is just that it is a different kind of neoplasm with malignant "potential". I didn't mean to frighten you, as I really think you are fine. I would just hate for you to let something go, when it may be time for it to be addressed.

Hudson

[Aquinnah]

Thanks Hudson. I much rather be aware of poss problems than not. I probably haven't been totally clear re my situation (I realised after my last input) . To begin with my cyst was LESS than 5 cm (4.something), it was only in my April u/s that it had passed the 5cm mark. I see the same gynonc, who hasn't let go of me. He tracked it all last year when it was smaller than 5cm so 'knew it well' as it were. He has also asked me to come back. Had he let go of me completely I don't quite know what I would have done - sought more advice and help probably, but he didn't, so I don't feel abandoned. Maybe guidelies are different in US and UK, but there are studies, replicated in US Journals that do state quite categorically that even 5cm+ cysts in certain conditions are unlikely to be cancerous. I will dig them out, but not tonight - it's tooo late over here! My bedtime++++. I don't know wht he will say - the last letter did say something on the lines of 'I'm not suggesting an op now', so I suppose that may well be what he says when I see him. So far he has certainly followed the RCOG guidelines to the dot! And I was offered an op to begin with, to allay my anxieties, but as I've already said, I don't approach ops with speed unless an acute emergency.

I would be interested to hear more about about your serous cystadenoma. I have just gone against my own advice and googled it, and it is described as a 'benign tumour', but you say it can become nasty? And it can look like a simple non complex cyst? Like you say, I really want to know to be better informed. also unlike when this started though this is always a niggly worry, it's nto like when it first started when I literarely couldn't sleep for worry.so I would be grateful if you would tell me more. and thanks again for your input - I value it!

[Hudson]

Hi again, it isn't the size of the cyst that determines if it is cancerous. My first ovarian cyst 20 years ago was 10cm. and was completely fluid filled and benign. It was just a simple cyst that grew large.

I wouldn't be so concerned about the 5cm. size, more so that it hasn't resolved in 18 months. But, even that doesn't mean a malignancy. Serous cystadenomas don't ever resolve on their own because they are really tumors not cysts. So, in my case, I could have waited until doomsday and my serous cyst was not going to go away on it's own. Serous cysts are usually benign or my gyne said they can be borderline or they can become malignant. But, the only treatment for them is surgery.

I really doubt yours is anything serious, and your doc doesn't seem to be worried either. If they allowed the posting of e-mail addy's I'd give you mine and we could talk one on one. But, for now, just keep posting and we can chat that way. Try not to worry, as you have obviously been on top of things and have trust in your doctor.

Hudson

[Hudson]

Hi again, I think there must be different guidelines for the US and the UK? I am just going by my own experiences...and unfortunately I've had 3 ovarian cysts over the last 20 years. ugh.

As for the size of your cyst, mine appeared to have shrunk slightly right before I had it removed. however the gyne said the ultrasound can only be so accurate in it's measurements, that the "shrinkage" was of no statistical value.

You are wise to keep following up. As I said 99% of these are benign, but there comes a time when it is just plain time to be rid of them. Keep us posted and good luck.

Hudson

[AnotherKatie]

That's interesting Hudson.  Another thought I had was, why wait for it to do "whatever" ... has your doctor considered having the cyst removed, doing a frozen section and resecting the ovary if all is benign?

A good article to read that highlights the major issues in saving ovaries (including menopausal ovaries) is: Rational for Ovarian Conservation by Donna Shoupe MD

http://www.asrm.org/Literature/Menopausal_Medicine/Menomedfall99.pdf

Lots of issues to consider, best of luck to you...

[scoutshadow]

Actually, Aquinnah I thought this was your third scan but have reread and it's your fourth!  Have a frank discussion with the gyn/onc when you meet.  On reflection I think now is the time to act.  I would have given it four scans and then made my decision.  I hope the gyn/onc can shed some light on this.  Certainly I think you have been well looked after so far.

[Hudson]

Just interested...the guidelines state it is ok to follow a cyst for 18 months in a peri or post menopausal woman? My gyne stated 60-90 days were the guidelines she follows.

Hudson

[Aquinnah]

Thanks for all your comments - you are all sooooo supportive! I wish I had found this site when I first had my cysts.Yes, it's been 18 months. My gynonc is clearly following the RCOG guidlines. I nearly know them by heart now, so we'll see what he says. It's been a long time, though, and I am getting fed up with it.

[Aquinnah]

Interesting. I will follow that up. I am postmenopausal (57) and the Royal College of Obstetricians and Gynaecologists (RCOG)green topped guidelines on' Ovarian cysts in postmenopausal women', clearly state cysts can be followed for a year, if they are LESS than 5 cm. However, mine hit just above 5 cm on my last (April) u/s with no other worrying features. That was when the gynonc suggested, by letter, for me to have one more u/s in 6 months,  (done yesterday) as from appearance he wasn't worried BUT he wanted to see me again after this u/s (on 9/11). It's still above 5cm (5.3 the u/s person said) and I think the last time it was 5.7 ......or was it 5.4, can't remember exactly(also not sure if cysts are a bit like balloons with water in - the same valume byt the change and the stretch can vary hugely. I think it looks thinskinned, and no bobbles or anything anywhere. It is entirely possible he may suggest it is time to remove - or not. I have read loads of research articles where p/m women have cysts much larger than mine without having ca, unless their ca125 is raised too. (I haven't had mine tested now for well over a year) Yet, on balance I am getting fed up with it and think I want it removed - but I am not one to run towards the scalpel unnecessarily!I will also check that bit about serous cystadenoma - was that you who had it?

[Hudson]

In answer to my own question I did some on-line research and found this article on guidelines for diagnosing and treating ovarian cysts. It seems the recommendation is watchful waiting for 90 days... or shorter if the cyst reaches 5cm.

http://www.guideline.gov/summary/summary.aspx?ss=15&doc_id=7465&nbr=4411

Hudson

[Hudson]

Serous cystadenomas are fluid filled and usually appear to be simple cysts on ultrasound. In reality they are not cysts at all, but tumors arising out of epithelial cells of the ovary itself. The only way one can tell for sure if they have a simple fluid filled cyst or a serous cystadenoma is by looking at it during a lap or through biopsy.

Hudson

[AnotherKatie]

Not to disagree with the ladies above, but is this a simple cyst you are dealing with?  Not complex in any way?  (sorry if I missed that detail). They treat the complex ones more aggressively.  If it is simple perhaps you can hang on a bit... How old are you?  Are you post menopausal?  You want your ovaries as long as possible, even if you are post menopausal. I sympathize with your situation though, it is worrisome.  These are transvaginal ultrasounds, I hope?

[dmt9616]

I will ditto what Hudson says, I was 44 pre-menopausal, but my cyst was discovered at 11cm, removed 2 weeks later at 14 cm and it was a serous cystadenoma. My onc/gyn said I was lucky, that serous cystadenoma can turn malignant over time. I have also heard if you are post menopausal it is best remove if they reach 5cm. The surgey is well worth the piece of mind (in my mind!) Good Luck!

[Hudson]

Aquinnah, if you are post menopausal ( you are right?)I would not wait and watch. In fact I am very surprised they let you wait this long. My gyne feels 3 months is the maximum amount of time to wait on a cyst if you are peri- or post menopausal. There are cysts that appear benign but can become malignant (serous cystadenomas). I know because I had one. At 5cm. I would have this taken out. Don't mean to alarm you, as it is likely benign, but this is what I truly feel. Better safe than sorry.

Hudson

[Aquinnah]

Hi! I only have niggly discomforts/pain around the times when I am due to/have just been to the hospital. A true case of psychosomatics I would say. Or at least I think I have no symptoms. I am prone to lose bowels, but  I have always put that down to my high fibre diet. I am post menopausal by the way.

Sorry about spelling mistakes: it obviously pays to read through before posting!

[Aquinnah]

it's a long (and tedious) story. My then 2 cysts were discovered wehn I had a u/s for postmenopausal bleeding, in May 2005. One disappeard pretty quickly, the second one has hung in there and by last april it had grown past 5cm, otherwise no worrying features. Had the ct scan + ca125 and all that then and nothing caused concern. both the gynonc and I had expected this cyst to shrink properly or disappear last April, so we agrred at previous meeting that he would write to me rather than me come in. however, when I got the letter it was with the news it had grown to above 5cm and he wanted to see me again (on 9/11). He expressed no other concern exept it's size. so 18 months later the saga continues. I am second guessing him, but I suppose I feel I need to clear my own mind a bit to see what I would want when I go - either to wait further or to remove. Though he may have other ideas entirely, like though it's above 5 cm it needn't be tracked further. I thought after today it would all be clearer, but it isn't as there is so little change. Ah well, there we go!

Thanks for your reply!

Tanya

[sdp4314]

Tanya:

That is a difficult decision to make especially since it doesn't bother you much.  Are you having any symptoms at all?  I can understand your fears though.  I was in pain and bloated and scared to death and wanted it out of me and glad I did it too. Fortunately it was benign. I've read that there are others that had no symptoms and it was OVCA. When are you supposed to see the gyn/onc?

Let me know,
Shawn

[scoutshadow]

Can I ask you how the cyst was discovered in the first place (and forgive me if you've explained it all before)?  Did you have symptoms then?

I suppose what you really wanted was the cyst to be clearly resolving and this has not happened, but as you say, at least it has been there a long time so there is no indication of ovca.  If I was faced with this decision, I would give it one more scan and then make my choice.

All the best.