Should I be more concerned about the giant cyst growing in me?
January 21, 2010 4:24 PM   Subscribe

I had an ultrasound today because I've been experiencing a lot of ovarian pain, and I've long suspected PCOS and never had it comfirmed. They called with the results to say that I do indeed have PCOS, with many small follicular cysts on my left ovary, but in addition they found either a) 2 complex septated cysts both 4 cm in diameter or b) 1 giant complex septated cyst (giant is my word, not theirs). They can't tell if its joined or not. My question is: is my doctor taking this seriously enough?

He told me to come back in 6 weeks for another ultrasound to see if it's stable (i.e. not changing); if not, he would refer me to a gynocologist (he's just a regular internal medicine md). If it's stable, they'd just ignore it.

From my reading up on these kind of cysts (septated especially), they have a potential to be cancerous and the general consensus on treatment seems to be removal and biopsy. It looks like they don't generally clear up on their own and have to be removed. Not only that, but complex cysts in general are reportedly "very dangerous" because of the risk of rupture and internal bleeding. The dr did say that if I experienced any sudden, severe pain to call him. The internets say go to the ER immediately.

I did notice that while I was supposed to have an abdominal ultrasound, they also did my chest. Is this normal for an abdominal ultrasound, or was she looking for something as ovarian cancer often spreads to the lungs and chest?

So I don't want to be that person who automatically assumes "cancer" and starts freaking out, but am I right in thinking that I need to go see a gynocologist at the very least *NOW* rather than in six weeks?

I tried to call my dr. back to just ask for the referral and screw waiting for the second ultrasound, but they have yet to call me back.

I guess I'm mostly upset because while I try to be an informed patient, proactive about my health, and ask lots of questions, the information I get from googling "complex septated ovarian cyst" is absolutely nothing like the information I got from my doctor.

I know, y'all are not my doctor, but does anyone have any personal experience with this? Should I trust my doctor or trust my instincts? I don't want to overreact, and thank God I have insurance but I don't want to have to reach my deductible over something that might dissipate on it's own.
And I almost forgot to mention, we have a LOT of family history of gynocological cancers, including ovarian.

Also, for those of you who've had this or something similar, what kind of effects, if any, did this have on your fertility?

(Some more pertinent info about me- 22 years old, married, no children but I would like some in the next few years, not pregnant, healthy weight, everything else in me is working great according to the doctor)

What's your opinion on all this?
posted by nataliedanger to Health & Fitness (16 answers total) 2 users marked this as a favorite
My wife experienced PCOS with cysts etc for years, and really only beat the condition by visiting an endocrinologist who recommended she lose weight and pay attention to what she ate, in order to moderate blood sugar and insulin levels, which in turn moderates hormonal levels that can potentially prolong or shut down PCOS. So while you may have a healthy weight, your BMI or muscle vs. fat ration can also play a role, even if you are within what is considered a healthy weight.

As I said, my wife's approach worked, but it took some time, so the only advice I can give is to get a second opinion, preferably from an endocrinologist.
posted by KokuRyu at 4:42 PM on January 21, 2010

Oh yeah, we were also able to conceive our second child after that, too.
posted by KokuRyu at 4:42 PM on January 21, 2010

First, make sure you're getting your info from a reliable medical source on the internet. Not from googling ovarian cyst. Try eMedicine. Unless your Internist specializes in women's health, you should get an appointment with an Ob to discuss these issues. You should probably get set up with an Ob and develop a relationship with them so your ovarian issues can be followed up.

"The dr did say that if I experienced any sudden, severe pain to call him. The internets say go to the ER immediately." -- He's just going to tell you to go to the ER when you call him. Then they will do a CT scan or another ultrasound. But call him and let him know.

"I did notice that while I was supposed to have an abdominal ultrasound, they also did my chest. Is this normal for an abdominal ultrasound, or was she looking for something as ovarian cancer often spreads to the lungs and chest?" -- No, likely they were doing subxyphoid views of the heart which may be a part of the ultrasound tech's abdominal ultrasound protocol. Or they were looking at your liver or spleen.

"So I don't want to be that person who automatically assumes "cancer" and starts freaking out." -- Good. "...but am I right in thinking that I need to go see a gynecologist at the very least *NOW* rather than in six weeks?" -- not necessarily. You're 22, not 62. Ovarian cancer is uncommon in young people.

Overall, considering you're googling this and asking questions on the internet you would probably be happier with seeing an ObGyn right away. Mental health is important too. No need to be worrying about this for the next 6 weeks. However, please ask yourself what your answer would be if the specialist has the same recommendation (watch and wait)? Will you be okay with that?
posted by ruwan at 4:44 PM on January 21, 2010

Some of these questions are ones you need to ask your doctors, but I wanted to caution you not to worry too much about the use of the word 'cyst' in this context.

Every month, healthy ovaries produce a follicle - basically a lumpy thing that looks like a cyst - which eventually bursts and releases an egg. If this process goes wrong, as in PCOS, the follicles don't burst and you end up with more than one. And if a follicle grows larger than 2cm, doctors will start calling it a cyst, even though it's an extension of a normal bodily process. So the word 'cyst' when you're talking about ovaries doesn't mean quite the same thing when it does in other parts of the body.

Also, stop googling. Patient-run sites particularly have a huge selection bias. People don't go online to tell the world how they had a health problem, saw a doctor, followed her instructions and got better quickly and without incident. They go online to share their horror stories of failed treatments and obnoxious doctors with a community of sympathetic readers. What you read online will almost certainly not happen to you.
posted by embrangled at 4:51 PM on January 21, 2010 [2 favorites]

Wow. Considering your family history, you need to be really proactive about this. Don't even worry about money or your deductible.

You should see a gynecologist ASAP. Find your own, if there is a local medical school they're a great source for referrals and doctor info. They might be able to refer you to a doctor who teaches at the medical school.

If you don't need a referral for your insurance, don't even worry about your doctor--make an appt with a gynecologist. Take copies of your ultrasound results, your medical chart, etc. You can get them from your internist. Don't be worried about hurting his feelings.
posted by kathrineg at 5:00 PM on January 21, 2010

If cost is an issue, see if you have Planned Parenthood in your area. They should offer a sliding scale of fees. Ovarian cysts are very very common (I've had them, and I asked a sort of similar question here) but what you describe sounds like a second opinion is in order.
posted by wowbobwow at 5:03 PM on January 21, 2010

Response by poster: KokoRyu, I actually have been taking care of my PCOS that way for quite some time- I lost a significant amount of weight and have been watching my sugar intake. It almost completely cleared up my other symptoms and I've had a regular period for the first time in my life.

embrangled, I'm not concerned about the follicular cysts because I've had them for a long time and I have my "symptoms" pretty well managed. It's just this crazy large one that is supposedly not related to PCOS that I'm concerned about. But thank you for the advice. I know google isn't always reliable, but when your doctor isn't around to answer any questions, it's hard not to turn there!
posted by nataliedanger at 5:10 PM on January 21, 2010

And good points are made about the internet...don't let it freak you out. Instead, be proactive about getting opinions and second opinions, if necessary from your doctors--and be proactive about choosing great doctors who know what they're doing.
posted by kathrineg at 5:16 PM on January 21, 2010

I had a crazy large ovarian cyst that I didn't even know was there for weeks and weeks - by the time we found out about it, it was about as big as my ovary itself -- that mother was 10 centimeters long. And yet, it was completely benign and non-cancerous -- although, still freaky in its own right (the tests showed it was a dermoid cyst).

Granted, in my case a cyst that big triggered a whole other problem, but even that's hella rare (in fact, only 3% of all women get that particular "whole other problem"). But my point is, big ovarian cysts don't always mean "holy shit cancer". By all means get a second opinion for the peace of mind, but please take my own anecdotal evidence that "a big huge ovarian cyst can also be completely benign".
posted by EmpressCallipygos at 7:07 PM on January 21, 2010 [1 favorite]

....Uh, sorry if this warning is coming in too late, but fair warning that the picture in the link for "dermoid cyst" is pretty ick inducing. (And I say this as someone who has seen a color picture of her own uterus.)
posted by EmpressCallipygos at 7:08 PM on January 21, 2010

You have a family history that would, for me at least, mandate a trip to a gyne sooner. Kathrineg's point about not letting it freak you out/that your mental state is also important is a good one - try to take charge rather than panic. You have the scans, so take them with you when you see the gyne. An MRI can give a detailed picture of the cyst structures. They may suggest a scan.

Like you, I wouldn't be as concerned about the smaller ovarian follicles [they are usually able to be reabsorbed by the body during our cycles] but the larger structure is over the 3-4cm should be further investigated. It could be a fibroid.
posted by honey-barbara at 9:04 PM on January 21, 2010

I have PCOS. In 2001 I had a 10-cm ovarian cyst when my family doctor sent me for an ultrasound. By the time I got into the gynecologist and gotten a 2nd ultrasound 3 months later (she's in extremely high demand and I had no idea it was 10cm, just that I had a cyst), it had grown to 16cm. My GYN wanted to do surgery that Saturday (it was Monday when I saw her.) I was a scared 20-year-old and I said no, it was too soon, so she gave me 3 weeks as long as I didn't have any pain. I tried not to lay on my stomach for those few weeks but otherwise I was okay. She had to drain off a liter of the almost 2 liters of fluid it held before she could even get her hand into my abdomen to work. (It was the size of a small canteloupe.) Had it been smaller, she would have been able to do the surgery laparoscopically, but it was so big that I ended up with a Pfannensteil incision (fancy medical name for bikini-line) 7 inches long, in addition to the bellybutton laparoscope scar.

The cyst was not cancerous. I did lose a Fallopian tube due to the cyst having mangled it, and she said I might need fertility treatments to get pregnant, but that's not something I'm considering at this time anyways, so it's moot for now. In the meantime, I have to be on birth control to keep my periods regular so no cysts grow that large again. (Ovaries are supposed to have cysts - it's how eggs break out each month. The problem is when it doesn't rupture and release the egg, and begins to grow.)

The next time I went into the doctor's office after I left the hospital (about 7 days later), I was greeted by the nurses with "I heard about you! Biggest cyst Dr. (GYN) had ever seen in her career!" What they told me was that they only start to get really concerned (like, surgery concerned) at 8cm or larger. (I wasn't told this until after I saw the GYN - my family doctor didn't mention it.) Mine was double that. So if your cyst is 8cm, it's at the border of when they start to get worried.

Given how fast my cyst grew, it might be wise to get in to see a GYN now, if you can afford it/have good insurance. But, try to relax. You don't have the largest cyst in history by far, and chances are it's not cancer.
posted by IndigoRain at 9:53 PM on January 21, 2010

They gave you an abdominal and chest ultrasound but not a transvaginal?
posted by Sallyfur at 5:15 AM on January 22, 2010

I'd recommend this: go to a regular gynecologist. If they agree it's appropriate, get the CA-125 blood test, which tests for ovarian cancer. It will very likely give you a normal result, and the reassurance is worth the expense. Think twice before taking hormones or doing other panicky things to "reduce" the cyst. If the cyst ruptures and the pain doesn't resolve quickly, get to an urgent care clinic or ER to make sure your ovary is ok.

Here's why I recommend it:

I had a 3 cm complex, septated ovarian cyst that had also leaked some fluid into my abdominal cavity. I also have a family history of gynecological cancers that genetic counselors believe could be caused by a glitch in the gene that suppresses cancer growth (Cowden's Syndrome). My gynecologist said we should wait a cycle to see if the cyst resolved itself. I decided I needed a gynecological oncologist, and in retrospect I'm not sure it was the best idea, because she put me on hormones that I think caused another cyst and more worry.

The oncologist did a CA-125 test to check for ovarian cancer. It was normal, so she said we should wait a month and do another ultrasound to see if it had resolved. To "shrink the cyst" she also put me on Norinyl, a type of birth control, but after several doses I stopped using it with her knowledge because it made me queasy.

The followup ultrasound a month later showed that the scary cyst was gone but I had suddenly grown another, bigger cyst (7.4 cm). According to the radiologist, the rapid growth and size of the cyst meant that it should be taken seriously.

Another CA-125 turned out normal. Since the Norinyl had made me sick, the oncologist put me on a birth control patch that was supposed to reduce the cyst. Luckily I had a local allergic reaction and we abandoned that idea, which in retrospect was a dumb idea given my strong family history of estrogenic cancers. I was also beginning to have strong doubts about the professionalism of the oncologist, who regularly mixed up records and seemed emotionally unhealthy. I should have stuck with my familiar and trusted gynecologist and just asked for the CA-125 test.

So we decided to wait another 6 weeks or so to see what the big cyst did.

A month later, it ruptured. It was extremely painful but not ER-worthy in my opinion. I'd had cysts rupture before, so the sensation was familiar, and the severe pain subsided in about 20 minutes and the residual pain in about two days. If the pain hadn't gotten better quickly, I would have gone to an urgent care clinic.
posted by PatoPata at 7:08 AM on January 22, 2010

Also: Since you're concerned about your family history, you might want to make an appointment at some point with a genetic counselor. They'll use your family history to gauge how likely it is that your family has a genetic glitch that should influence your medical decisions.

If it looks like there's a gene at work in your family, the counselor will probably recommend genetic testing for you to see if you have the gene yourself.

Since gynecological cancers are common, having a lot of them in your family doesn't necessarily mean that you personally have an increased risk of cancer. And even if there is a gene at work in your family, that doesn't mean that you have the gene yourself.
posted by PatoPata at 7:26 AM on January 22, 2010

Response by poster: Sallyfur, I forgot to mention that they did do an intervaginal ultrasound. Sorry!

To everyone, thank you for your suggestions! I know it's not by far the end of the world, but it's just frustrating to *not* know what's going on. A friend's mom suggested a few gynecologists who helped her with her freakishly large ovarian cysts, so I'm making an appointment with one of them.
PS My husband is kind of excited by the prospect that it may have teeth and hair, so he wants to name it. At least someone is getting some sort of enjoyment from this.
posted by nataliedanger at 9:55 AM on January 22, 2010

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