Ruptured complex cyst? Questions about timeline/next steps
Hi! This is my first post on this forum, and I'm hoping someone can simply give me some advice on what to do next and to (maybe) stop me from freaking myself out reading questionable (and frightening) web pages on the issue!
I'm 37 and have been on BC most of the time since the age of 19. Before this latest episode, I had no known history of cysts. But, three weeks ago, I had what I now know is a cyst that ruptured into my abdominal cavity--pain developing over a few hours, minor bloating, entire abdomen was sore, extremely uncomfortable sex and bowel movements, right shoulder pain.... the works. I suspected I was dying of some strange and undiscovered disease, but as I was traveling for the holidays, and as I had no fever/nasea/unusual discharge, I managed to gut my way through it and didn't go to the doctor. (Bad me, I know.) Two weeks later, afte an ultrasound/blood test, I got my diagnosis---A "small complex cyst" on each ovary and some fluid remaining in my pelvis. (I'm wondering if, in retrospect, my OBGYN actually was describing what I've seen called a "mixed cyst," as she mentioned that she thought the solid part was possibly a clot. She said nothing about walls or divisions.)
So.... I am now feeling 95% better. My OBGYN wants me to go on continuous birth control for six weeks (to stop all menstruation in case they're endometria, which I also have no history of), then then get a second ultrasound and proceed from there. She did NOT mention the "C word," but of course I'm scaring myself about cancer. Does six weeks of "wait and see" sound reasonable and safe? Or, given that she used the word "complex" and that I do have some fluid, would you push for a 125 bloodtest and even exploratory surgery sooner than that? (I'm going to go back in after the long weekend and ask for copies of the ultrasound/report and the bloodwork, which I didn't think to ask for, so I'll have more specifics, but I don't have that now.)
Any information from someone who's "been there" in terms of what the normal time-line is would be greatly appreciated!
Try not to worry because odds are with you that you have a benign condition. You are so right about scaring yourself on the net. I did that too. But, a little scare and gaining knowledge is worth it. That knowledge will help you make an informed decision if you do end up needing surgery. I am part of the small minority who did have ovarian cancer. I was diagnosed when I was 37 years old and was Stage 1a. I had one complex mass on my right ovary and it was 6cm at the time of my dx. My two main symptoms were urinary urgency and new pelvic pain. But, this went on for months before I got my diagnosis. Since you describe your cysts and small, have a history of endometriosis and your doctor is advising "watch and wait," I think that is the best route. Some free fluid in the pelvis is normal. The kind of fluid you read about on the websites that is related to ovarian cancer is a large amount of fluid called ascites. Your doctor would not be watching and waiting if that was suspected. Also, although ovarian cancer does sometimes occur bilaterally...it would be more common for you to have a large cyst on one side before it had spread to the other if ovarian cancer were the cause. When tumors occur bilaterally, it is usually because they have spread between the ovaries. The fact that both cysts are small is a good sign.
Pre-dx, I was just like you in thinking that I didn't want to mess around and wanted it out yesterday. Any "chance" of cancer made me want it out. But post dx, I have a somewhat different opinion. The only way I would press for surgery is if the masses were worrisome for malignancy or growing larger over time. If you need surgery, then hopefully, they can just remove the cysts. Having a hysterectomy and oopherectomy does cause some long term issues in many women (me included). I would only recommend having your ovaries removed if absolutely necessary due to malignancy or some other serious condition. Small cysts are usually surgically removed by a gynecologist. With larger cysts that are complex (over 5cm), you will get referred to a gynecologic oncologist. Studies have shown your overall prognosis (if malignancy is found) will be much better if a gynecologic oncologist does your first surgery and is able to stage you during that surgery. They usually won't even take a case if a complex mass is not of a certain size and showing worrisome signs. So, it may be an overall better outcome for you to wait until more can be determined about your cysts. Any benign complex mass will not be an issue until it also grows larger. And...in the overwhelming majority of cases, the cysts will go away on their own. So, that is my take on the waiting.
The CA-125 blood test is flawed and not good for diagnostic purposes. It is good to know your pre-surgery number if you have surgery for a complex cyst because if malignancy is found, you will have a baseline number to help assess how treatment is working for you. But, many women have a high result with benign conditions and many women have advanced cancer and a normal CA-125. Only certain kinds of tumors make that antigen. It is recommended that the test be given only when there is a large, complex mass or other worrisome findings. Your small cysts could cause a false positive and so the test won't provide any conclusive information.
You do mention getting copies of your scan reports and I think that is an excellent idea! Then, you can see the size and description for yourself. If you find you still feel uneasy about waiting, then you should get a second opinion rather than just waiting. I think you will know more once you get those reports. If your cysts are close to the 5cm point...then waiting may not be a good idea. Otherwise, be sure to follow-up on schedule and report any new, persistent symptoms to your doctor. I hope that helps. Welcome to the forum! Please keep us updated on how you are doing!
Thank you so much for your detailed answer, Shelly. It was exactly the sort of information that I was looking for, particularly that on the ascites and the nature of it being bilateral.
I should clarify that I have NO history of either cysts or endometriosis. I have no history of anything bad or strange related to my reproductive organs. And, since I've been on BC for 15 of the last 18 years (including currenty) which should suppress most cysts, my doctor did say having a cyst on each ovary was a bit odd.
I will post any relevant details once I get copies of my tests, and in the meantime, I'll just try not to stress, try to quit researching, and meditate to send "go away" vibes to the cysts and the remaining fluid. :)
Well the timeline can be very frustrating...the reason they schedule it so far out is they want to see if any changes/abnormalities are occuring in the growth, makeup, and if it will disolve on it's own. I have a complex cyst that I have been dealing with since last August and we are just now considering surgery to remove it, but that is not the case for everyone. I would have all the tests you feel you need done bc what is worse than having a problem...not knowing you have a problem. I'm sure you've researched this but alot of times these types of cysts have to be removed. My suggestion is that if you ever have the rupturing experience again go to the doctor or hospital bc it could be life threatening. Best of Luck BB
Thanks for your response, BB. Trust me, of I'd known it was a ruptured cyst, I would have gone to the ER, but neither I nor anyone in my family has a history of them, so we didn't know that's what it was.
I'm content with waiting another 4 weeks for a follow-up; I just wish I'd get back to feeling normal. 4 weeks out I feel mostly fine, except that walking (for exercise) still can make me feel 'off' in my pelvis--a bit achy, a bit full. And I wish I knew if my remaining problems are rupture related or relate to the cysts themselves. Patience is a virtue, I know, but I don't have to like it!
Hello. I'm very nervous. I have a 5.5cm complex cyst and a 3.5 uterine fibriod. I have irregular periods with brown spotting alternating with a clear discharge. My ca-125 markers is 28. I'm 32 with only my grandmothers sister having the only known cancer, ovarian cancer at that. My doc wants me to wait 6 weeks and then repeat tests. I don't agree, if there's a possibilityn it;s cancer,why wait?
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