8.5cm complex, separated ovarian cyst - 26yo. Scared!

Women's health
1

Hi all! I guess I am writing this more for reassurance and comfort, as sometimes it helps to get things out. I'm just under 27 years old, and here's my experience so far with a complex ovarian cyst. 

Two weeks ago I went to the ER after suffering from severe pain on my right side. Blood work was normal, but a CT scan revealed a 7cm cyst on my right ovary. The ER doctor and nurse told me to follow up with my regular gyn, who would most likely monitor it and complete ultrasounds every 6-8 weeks to check for growth. They said it was not an emergency unless I suddenly developed major, excruciating pain. They both said that ovarian cysts sometimes have to be removed, but ones like mine (the said the shading on the CT scan looked like a normal cyst) should be fine and probably go away with my cycle. (I've never had any issues previously. In fact, just two weeks prior to this happening, I had my annual appointment with my gyn, and all of my tests came back normal. I have no family history of ovarian cancer or cysts.) 

Three days later I met with my gyn, who promptly scheduled me for an ultrasound. She seemed concerned about the cyst due to its size and said she thought it'd definitely have to be removed, since it was already so large and because of the fact that I I have it while being on birth control (birth control, she said, is often prescribed to lessen the change of developing cysts. Go figure...) I became nervous after this, because the ER doctor and nurses didn't seem concerned at all, but my gyn did. 

The next day I went for both my regular and transvaginal ultrasound, which returned the following results: 

"8.5cm Complex cystic lesion with septations and what may represent a small papillary excrescence. No flow is noted to the solid component of the cystic portion. The appearance is nonspecific and both benign & malignant etiologies could give this appearance. Its size however is concerning." 

Upon receiving those results, my gyn referred me to a gynecological oncologist; my gyn said that due to the fact that they cannot tell whether its benign or malignant, a gyn onc. must be the person to handle it. 

My consultation with the gyn onc is on Tuesday, and while I'm trying to stay calm and optimistic, I've been a wreck at the thought of cancer. Of course, I Googled...and I read about so many characteristics of complex malignant cysts that seem to match up with mine, which scared me. The fact that the cyst seemed to grow so much in just three days between tests (1.5 cm) is frightening too...although, I'm wondering if there could be a discrepancy between a CT scan and an ultrasound? I am nervous to see how much it will have grown when I meet with the gyn onc. 

The hardest part has been the waiting - I just want to know what it is. It's been a long couple of weeks. At times, I had myself worked up into a frenzy of worry, which only made the pain worse. My gyn has been fantastic through this, reassuring me to just take it easy and try not to worry too much...but it's easier said than done. Meeting with a doctor who specializes in cancer treatment and practices in a cancer hospital is just a scary thought (but also comforting, since God forbid it is cancer, I know I'll be in good hands...) It doesn't help that I've also always been a hypochondriac smile 

I guess I just needed to get that out...the thought of cancer is just making me a nervous wreck. Thanks to anyone who took the time to read this...I'm not sure how much sense it makes. But it felt good to get that all out!

2

*Septated

3

I had a 7 cm cyst and both ovaries removed last August. I honestly don't think they can tell anything until is is removed and sent for testing. Mine was not cancerous and I would doubt that yours is either. Waiting is the worst part the surgery was a breeze in at 11 home by 1 so don't worry about that. Take care hope you feel better and get answers soon!

4

Hi there,

I am going through the exact same cyst situation, except mine is double the size of yours and I am 48. I too went through family doctor, gynocologist and gyno-oncologist. 

Two weeks ago, I got a call that the gyno-oncologist will remove the cyst. He feels there is a 20% chance that it is cancer. I have no family history, and my CA-125 test was 16 (anything below 34 is good). They are basing their 20% chance on how it looks (solid component and septum). 

I live in Canada and have to wait until June 30 for the surgury. I am on pins and needles as I have 5 kids. As I sit here typing this, my pants and belt are undone because I feel so bloated. I know how you feel about the agony of waiting for an answer. 

There is nothing we can do to change the situation, so we have to keep our minds busy. I have Googled everything that can be Googled, so I have stopped. Sometimes I feel better after Googling, but most of the time I feel worse. 

I just want you to know that you are not alone in this. Please let me know anything knew that you encounter. When will you have surgury?

5

Thanks for the encouragement, Sheri! I'm so glad that your surgery went so smoothly!

In my case, I am praying that if they have to remove anything besides the cyst, that it's just one ovary instead of both (my boyfriend and I would like children someday.)

Thanks again!

6

Hi Michelle,

So sorry you're going through this as well! I know the bloated feeling all too well. Luckily, my cyst is not visible, but every once and a while, the bloating feeling comes and then the pants get unbuttoned >_<

I have my first consultation with my surgeon this Tuesday (I haven't met with her yet) so I'm assuming I'll know then when my surgery will be. I'm assuming she'll want to run some other tests beforehand, though.

June 30th seems like a long time to wait, especially since you've already met with your surgeon and had testing done. I pray that you are as comfortable as possible up until your surgery! I am lucky that I am able to see a gyn onc just a bit over 2 weeks after my initial diagnosis - originally it would have been a 3 week wait, but my gyn referred me to a  different surgeon to reduce the wait (because of the pain I was experiencing then.) Still though, who knows after that how long I'll have to wait. Unfortunately, Dr. Google told me that many women have long waits in between diagnoes and surgery

Best of luck to you, and thanks for the kind words!

7

Hi everyone,

I can definitely empathize with your pain and worry - I too am suffering, having just been told that I somehow have a 7 cm complex cyst on my right ovary, when an ultrasound in Oct 2015 only showed signs of several large uterine fibroids, and nothing on either ovary. I did a course of fibristal from Jan - April to try and shrink the fibroids, did a follow up ultrasound, and lo and behold, there appears this cyst! Since I am in menopause, I am surprised and can only guess that the fibristal had something to do with it, although every doctor I mention this to says "no no, fibristal does not cause cysts" yet when I look online, I read that it can (slim chance but it does happen). I am scared, confused and kind of p*ssed off right now. The gynecologist has already booked me in for laprascopic removal of both ovaries in October. I'm thinking, if it's possibly cancer, why do I have to wait so long? I am going to go to a new GP hopefully this week (I just moved) and I'm going to ask her to order an mri and blood test. Although I'm terrified of ovarian cancer, I need to know! The waiting and wondering and worrying will be enough to make me sick.

I hope we can continue to share our thoughts and concerns, and support of each other. I cannot go through this alone, and although my sister and a couple of friends are sympathetic, they won't really understand what I (and you) am going through.

Thanks for reading. Feel free to reply!

P.S. I understand the chance of a cyst being cancerous in one so young as 20 or 30 is very slim. It is much much higher in the over 50 crowd. That's good news for you! Not so good for me :o(

8

Hi Sheri. Have you had any repercussions since you have had both ovaries removed? I am in menopause so my gyn tells me nothing with happen, but I have read that the ovaries still play a hormonal role even after menopause. May I ask your age? I'm 53. Thank you.

9

Maybe a few more hot flashes. Other than that nothing. Glad mine are gone!

10

I think they have to tell you that just so you are prepared. My ob said she didn't think it was cancer but of course until she saw it she could not be sure

11

Hello,  Please try not to worry.  I had two complex cysts 13cms on right ovary and a 6cms cyst on my left ovary. Mine had grown 3cms in three weeks which the gyn did not like. Both were complex cysts which had solid masses inside each cyst. My blood test CA125 was 39 which indicated a problem. I also started with a severe pain on my right side. To cut a long story short my gyn consultant transferred my care to another hospital under a cancer gyn specialist which I was relieved in a way as I was in good hands. Three weeks ago I had them removed and I was only in hospital for two days and I'm near enough back to normal the results of the biopsy from the cysts came back negative - benign after another week.  I had also a family history of cancer and ovarian cancer in my family, but that doesn't always make any difference. So although I was on the path of believing my worst fears, I am totally fine. So good luck on Tuesday, I will be thinking of you. X

 

12

I was 50! When they found mine and a couple of years into menopause. It is much rarer to have ovarian cyst after menopause but it definitely happens. Mine was removed and not cancer so just goes to show you it may just be a harmless cyst. I am so thankful my doctor remove my ovaries and tubes so at least I don't have to worry about that anymore. Good luck to you I am confident you will be fine. I had to wait one month for my surgery. I do think waiting until October would be a mistake

13

So sorry you are dealing with this, CaringCanuk! I wish you lots of luck - keep us posted when you visit your new GP. Sooner is definitely better.

I have read in many places that ovarian cancer is indeed more rare the younger you are, but of course, I've read some stories of women in their 20s who still got it. Keeping my fingers crossed that it's benigh (for all of us!)

14

Thank you so much for sharing this, Anne! It is reassuring. Your story just goes to show that no matter how things may look, you just never know! That is what I keep trying to remind myself.

I am so glad all went well for you. I will keep you posted as to what happens on Tuesday.

15

Thank you dmd721. Keeping fingers, toes and legs crossed for us all. 

Meanwhile, I have been reading up on how one can manage the symptoms and not aggravate or cause further growth. Eating clean, cutting out alcohol and coffee, getting lots of exercise and managing stress well are what I'll be focusing on in between doctor visits.

16

Thank you Anne, your account has really helped to calm my nerves. 

17

Yes, thank you from me as well. I scour the interenet for positive stories like yours. I'm relieve for you and I don't even know you!

What type of surgury did you have. How was the insiscion made? 

18

Hi Michelle

I'm in Canada too, in my 50's , so post menopausal. My cyst has been 6cm for a year now. I am not sure how long it's been there had an ultrasound done 10 yrs ago just before peri menopause and it wasn't there.

I've never had pain or cramps they stumbled over it when doing an USound for my nausea and stomach issues.

I have never heard anyone talk about shrinking it or dissolving it. This is what I'm trying to do with holistic ways.

Robin

19

Hi Caring Canuk

I take it your Canadian so am I , I've stumbled over a 6cm when I got an ultrasound done a year ago for some bacteria bug I had.

I too am in menopause my cyst has not grown in a year. It is a simple cyst my CA125 was 11 and all the other tumor marker tests showed great numbers no cancer. My obgyn said I can keep monitoring every 3 months or remove it and the ovary. Just not sure have no pain, I will do one more test in July then decide what to do?

Have you been told that you can shrink it with healthy whole foods and walking.... also some apple cider vinegar. This is what I was told so I'm trying.

I have mine on the right also but they will remove only the right side left is good. My obgyn said she can take both out or leave the good one in. Even tho I'm menopause your ovaries does produce hormones.

If I do want to remove it the wait list for surgery is only 2-3 months.

I'm here if you want to talk fellow Canadian

Robin

20

Hi robin, another "Canuk"! :o). I am going to approach this holistically as well. I would be interested to learn what you're discovering in your "journey". Has your gyn not recommended that your cyst be removed? It seems to be all the rage where I am, although it has only been men who have recommended this. I am now seeking the opinion of female health practitioners.

Michelle, it looks like where you are there is not a long wait list. As I mentioned before, I am scheduled for surgery in October! I'm going to see if that can be bumped up, or go elsewhere (I have a few choices I think as I am in Toronto). The question remains, one ovary or both?

Hang in there.