Borderline ovarian tumour - inflammation after surgery?

[sharkbait]

Hi,

First off i'd just like to say over the past 2 months it has been so helpful reading and hearing the stories of other people - and how positive you all are! I feel like my situation is not nearly so bad as others and as im a bit of a worrier i keep trying to remind myself that being positive is the key.

Bit of background - i'm 24, fairly active and first went to my GP after i woke up in the middle of the night with horrible stabbing pains..ignored them for a couple of days hoping that it would go away and it didnt it just got worse - since i'd never felt anything like it before i assumed it was my appendix. My doctor was great and got me in for an emergancy ultrasound scan very quickly after suggesting it might be something to do with my ovaries but to not rule out appendicitis.. the scan showed i had a 6cm cyst on my r.ovary and it was termed complex...i had the operation about a week later to remove it..and afterwards i was told it was probably a dermoid cyst from its appearance during the op. ( i was relieved at this point and thought well thats that then..as i'd been told these were almost always benign)..however 2 weeks later i got a letter from a gyn onc at my hospital saying my pathology results had come back and it was actually a borderline serous tumor and i would need to come back. I'm not going to lie i was a bit freaked out as i hadn't expected anything like that to happen based on what i'd originally been told...Anyway when i had the meeting with my gyn onc (who was lovely) and he told me it had been stage 1A. I felt much more relieved and because it was a conservative approach both my ovaries had been kept. He said i would be having 3 monthly ultrasound checkups and an mri - which i had last week.

The thing is, i have started to have the stabbing pains again on my right side where i had the pain last time - and now i also get pain in my back and into the right side of my bum... both my GP and surgeon have said it is likely to be my body still settling down (its been about 6 weeks since op).. and said wait to see what my mri said.Well i had it last week and it came back that everything was fine, but that i had an inflammation about 1.5cm on my R.ovary - but nothing they were concerned about.

Im really sorry to be so long winded - i think i've written an essay! but at the end of all this - my question is when they say inflammed does that mean it could develop into another borderline cyst? Or is it just a post-op thing that is common? Am i just worrying over nothing..or do i really need to keep an eye on this pain (which im now assuming is related to the inflamation bit).. will the inflamation turn into anything else? Or will it settle down after a while? Like i said - im trying to be positive and get on with life as i do feel lucky that it got caught so early on, but unfortunately i'm a worrier with a big imagination and if anyone else has any advice i would be so grateful.

Thankyou

[Tracy29]

Hi there, I hope that by being on this site you can feel reassured in at least some way, even if its just having someone to talk to. My situation last year was very similar to yours. I was 29 at the time, and like you i was diagosed with borderline ovarian tumours. Its extremely daunting isn't it, as there is so little information about it, and what there is is conflicting. you seem to have confirdence in your GP and surgeon, and I know my consultant was very helpful, but I would suggest that even after the MRI, if you are in pain, always get it checked out. Im not medically trained, and do not know how quickly these things can reoccur, but I know that when I first went to the docs ( and I have a very good docs surgery) they thought inflammation and gave me pills to treat it, and it turned out to be a 13cm growth! Im not suggesting that is the case for you because you are already one step ahead and have had an MRI which has come back fine, but it is always worth double checking as who knows at what stage these things are picked up on a scan, and as they always say, its much better to get things checked thank leave it and hope it goes away. Maybe it is just some scarring, or perhaps you have tried to do too much to soon and just aggravated it at little. I had the microsurgery first adn then the major op 6 weeks later, and I have to say I was only just starting to properly get overy the keyhole surgery after 6 weeks. You will find this website really helpful, i have found a great deal of support on here, it is difficult not to worry. If you are feeling confused about the "borderline" diagnosis, as I know I did, ask your GP for some reliable information, dont look on the internet for yourself as you will find all sorts! My GP gave me some good information. I still have tenderness on my RH side but the removed my ovary so I guess that takes a while to heal anyway. I am not due a scan until july, which will be 7 months after my op. Not sure why......everyone i have read about seems to have them every three months. so I may ask the question! Im generally of the opinion that if your not happy, ask, because its better to ask and find everything is ok.

[charlie12]

Hi there

I am so sorry to hear that you are going through this at such a young age. It's a very confusing diagnosis.

I went to A and E with identical symptoms to you i.e. a bad pain in my right side two and a half years ago, but was told that it may be an advanced ovarian cancer ! After an MRI scan I was then told that I had a very large simple cyst and fibroids. Then months later after the operation which was a hysterectomy plus removal of both ovaries , long afterwards, I found out that the cyst was actually a borderline tumour.

The only snag was that I still had the pain in my right side ! This has been investigated extensively , including having the incision re opened, and nobody can give me an explanation for it.

However I have learned to live with it with medication. I live a very full life, even fuller than before all of this. My hubby and I have had several activity holidays since and I am currently in training for the Race for Life.So honestly there is life after all of this.

Six weeks is very very early days and shocks such as this affect your pain threshold. I would certainly have been more assertive in terms of getting information and asking for copies of reports , letters to GPs etc. It is perfectly reasonable to ask what the doctors think this new area is , are there any concerns , how it will be monitored etc etc. I would also ask them to outline a management plan for you . Give your consultant's secretary a call tomorrow.

Take care

Big hug

Charlie xxx

[sharkbait]

Hey,

Thanks for writing back so quickly - you both made me feel alot better. Whilst all my family and a couple of close friends that i've told have been really nice about everything, i dont think they quite understand how i feel. It's good to hear from people that have been in similiar situations and know what a rubbish thing it is to deal with. Especially in terms of the limbo is it isnt it cancer part!!

Tracey, you are completely right with the daunting bit!! even though you say your GP is great, i bet you feel so glad that you stuck to your guns when you knew something was wrong. Before i saw my own doctor i went to nendoc (the out of hours dr) and he pretty much told me to stop moaning and that it was ibs!!). I guess they are similiar symptoms but sometimes when you know something is really wrong you just know. There might be a valid reason why you are having checkups at 7 months, maybe things take longer to settle down - your surgery was more invasive than mine and your body might take longer to return to normal? I know my surgeon said if they did any scans too quickly then the results might not show up correctly? I may be completely wrong, but like you said it always better to ask Thanks for the tips with the internet..google is not my friend when it comes to borderline tumors! i did find a bit of good info on cancer.org.uk though which has helped - i almost feel silly looking on cancer websites...did we have it? didnt we? meh. confusing.

Charlie - That must have been so horrible being told you might have advanced cancer..and then not..and then something horrible all over again?! Even though everything for me happened so quickly..it also got resolved and diagnosed quite quickly too. Bit of a whirlwind.It must have been a nightmare..for both of you actually. Its interesting to know that they had another look inside to see what was going on -Do you mind me asking if you you felt more reassured afterwards?

I felt relieved after my mri..because even though people were saying it would be fine, i couldn't believe anything until they'd had a proper look - sounds so silly when you remind yourself they are qualified specialists.

.. thanks for the advice ladies and i will definately go back to the doctors if the pain continues..take care

Siobhan xxx

[wendydee in reply to sharkbait]

Hi Siobhan

If you go onto the ovacome.org.uk site, on the left hand side of the page, click on Beat ovarian cancer with Ovacome, then click on the symptom checker. It gives you a document to record symptoms on and you can print it off and take it to your doctor or hospital. Most GPs now take notice of this. I hope it helps. There's some info on various aspects of borderline stuff too.

Good luck

Love Wendy xx

[charlie12]

Hi Siobhan

Really glad to hear that we have been of some help.

Yes the whole journey was a nightmare for a while, but I had to get through it and my husband has been amazing. I kind of did feel reassured eventually after the second operation, but being re-opened whilst things were effectively healing and so soon after the diagnosis was absolutely terrible.I expected a relatively minor procedure as a scan suggested that my gut had been sewn to the abdominal wall during the first operation. I woke up in absolute agony to find that I had had this massive procedure. It's a long story and the only reason I related it was to say to definitely ask for a second opinion if anybody suggests that you be unzipped so they can "have a look".

I have found that talking to people was far more reassuring than googling things. I also found keeping a diary really good, that way I can look back and see how things have improved over time, which I have.Staying really really busy helps lots too.

Do get back in touch if you have any other queries and I so hope that the pain etc settles down for you.

Love

Charlie xxx

[sharkbait]

Thankyou I cant imagine the pain you must have felt when you woke up - must have been absolutely horrible to have to go through it all over again. My boyfriend, too, was pretty great about everything.. im not sure he enjoyed my projectile vomit whilst i was sat on a commode after my op hehe (i didnt deal v.well with the anesthetic) but he was brilliant. Your husband sounds like he has been with you through an awful lot.

I may keep a diary..its always one of those things i've intended to do and start out with good intentions but never keep up. Maybe this will be a good reason to stick with it - plus then i can take it to the doctor if anything dosn't improve..it might help monitor things a little better from my side. I hope you dont have to go through anymore stress and hurt - it sounds like you had had your fair share.

Siobhan xxxx

[Hidden]

I have just read your question and can tell you now that you feel alot of stabbing pain after an op.I am 3 years on from oc and get pains and convince myself that something has returned and my last scan xmas 2011 gave me all clear(thankfully) I really understand how confused and frightened you must be right now but a good gp is fab.Dont be put off,if you are concerned talk to them mx