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11 cm complex ovarian cyst very high ca125 11 cm complex ovarian cyst very high ca125

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  #1  
Unread 07-14-2011, 05:49 PM
11 cm complex ovarian cyst very high ca125

Hi everybody. I went to the gyn about six weeks ago with a stomachache that my regular doctor thought was related to ovarian cysts (not unheard of with me). Turns out I have a pair of complex ovarian cysts; the one on the left is just under 3 cm, the one on the right is a whopping 10.8 cm. I've had cysts before - my gyn said the giant one could be the one we were watching and waiting on a couple years ago (I had no discomfort, stuff kept coming up and it basically got forgotten about), and once in the ER getting a contrast CT for another issue a "ruptured hemorrhagic cyst" was noted. (I'd had terrible pain with my period that month - I now figure that's what that was, since my periods generally aren't bad.)

My gyn sent me for a CT the day I got the ultrasound (with and without injected contrast) but assured me that he was 99% sure it wasn't cancerous. The scan showed both the giant cyst and the then-undiscovered little guy on the other side. It's a thick-walled "complex cyst" full of something that could be blood or "proteinacious fluid" with no septations. My gyn says it's smooth and looks totally fluid-filled (I thought complex cysts were solid or semisolid but someone told me that it can also mean filled with an unusual fluid). The radiologist's report suggests endometriomas or mucinous cystadenoma (it's my understanding that these aree sometimes malignant?). Bowel and uterus appeared "grossly normal" and the lymph nodes weren't swollen.

Besides the thick-walled and complex aspects that I know can be danger signs, my ca125 is 249. I nearly passed out when I read that; he'd told me it was elevated, but I wasn't expecting a number that high. He did say it wasn't unexpected with a cyst and if it was cancer it would have been over a thousand.

I saw my regular doctor the other week and he looked at everything and said the one thing he felt very strongly that it WAS NOT is cancer, he put himself as being 95%-98% sure he knew what was going on (I don't know if the doubt comes from possibility of it being cancer, his not being a gynecologist, or both). I asked him about the ca125 and he said that just means it's definitely an ovarian issue, but doesn't mean it's cancer.

I met with a gyn/onc and he did a quick exam and said he couldn't tell what it was, because somehow the giant thing managed to run off and hide from him (...just figures, doesn't it?!). He did say, however, that he feels strongly that it isn't cancer (his words were "exquisitely unlikely"), and his best guess is a mucinous tumor, because I don't have the painful periods that would suggest endometriomas. Again, it's my understanding that those are sometimes cancerous, but I didn't think to question him further about that (nor did I mention the CA125 levels, but he had my test results and I assumed he'd read them...in hindsight I probably should have asked jut to be sure.)

My surgery is the monday after next, and he'll be doing the surgery. (He also looks about 80 years old, not exaggerating...I hope his hands are steady!)

I've spoken to a couple of people who work alongside gyns or in imaging online and they've all said that it doesn't sound very likely that it's cancer, though obviously they've never seen my test results. One of them even said they'd seen a ca125 level of 900 in a woman who didn't have cancer. Another person suggested that if I had two cancerous growths, including one gigantic one, my number would have been much higher, though I'm not sure if that's based in anything but an educated guess.

My main concern, though, is that along with the ca125, I have all the symptoms of ovarian cancer. Gas, bloating, stomach/side/back pain, diarrhea, urinary symptoms, protein in urine, slightly elevated temperature, etc. I've also had really weird periods - about a year ago, I started having "gaps" in my period where they would stop for a day, then start up again. Weird but I didn't pay much attention to it. But now my periods are very light, maybe five days instead of the usual 7-8, with the gap still there and only with heavy bleeding on the first two or three days. I've also noticed some dark brown discharge at the ends of my last two periods.

I'm terrified. I know that at 28 I'm not in a high risk age group and as far as I know I have no immediate family history of any cancers (well, my dad had throat and lung cancer, but he also smoked two packs a day for forty years; I'm going to guess that had more to do with his cancer than genetics!), so my odds are good, and that my doctors don't seem concerned; my gyn told me I could wait a month or two to sort out my insurance problems before scheduling the surgery to remove it. (Yeah, like that was a possibility!)

I understand that the odds are in my favor, but my symptoms don't seem to fit anything BUT ovarian cancer. I'm scared. The surgery itself terrifies me - and I have a weirdly specific phobia about staying overnight in hospitals. So none of this is helping with my anxiety. So I don't really know what the extent of the surgery will be. I could wake up with nothing but a small incision. I could wake up missing some reproductive organs. I could wake up being told that I have a few months to live.

It's the waking up and waiting for someone to come tell me what they found that scares me the most. Whatever comes after that, I'll deal with it. I have no choice. But not knowing is making me miserable. And I hate having to put my mom through this - my dad's cancer took him a year and a half ago. I'm going to the same cancer center he went to for my testing and meetings. I know how much it's upsetting me and I know it's worse for her. And I know that if I do need treatment, she'd never let me go alone.

I don't fear death, but I don't want to die now. I'm finally turning my life around after a decade of being a total screw-up. Being my dad's caretaker inspired me in a way - I'm applying to a program to become an ultrasound technician, and am hoping to someday go to nursing school. I have a wonderful girlfriend I fully intend to marry. I feel like I'm finally on my way to being a decent person. After years of being suicidal, I'm finally enjoying life and am feeling like it's going somewhere.

I have such a strong bad feeling about this. And I'm pretty scarily good at predicting how someone's health problems are going to pan out. Not that I'm psychic or anything, it's just kind of a gut feeling thing. I'm sure that sounds a bit silly. I've also known SO many people who heard "I'm 99% sure this isn't cancer, let's just biopsy it to give you peace of mind," only to have it be cancer. I had a friend diagnosed with breast cancer when she was barely 30, another friend died of ovarian (or cervical? I'm not sure; this was quite some time ago) cancer when she was about the age I am now. My dad had a bunch of doctors tell him he had pneumonia or infections or whatever; he had two primary cancers at once. I feel like doctors are just saying what we want to hear to keep us from panicking or making a fuss.

I'm sorry. I just meant this to be about my health concerns. I'm not sure how it turned into this. Thanks for listening. Any advice on how to deal with this is welcome.
  #2  
Unread 07-15-2011, 09:51 PM
Re: 11 cm complex ovarian cyst very high ca125

mollyfin,

O.k., sweetie. Time for some deep breaths.

It is very good that you're seeing a gyn/onc and that he does not think this is cancer. Our bodies can produce lots of bizarre things that are perfectly benign. And, other things can cause an elevated CA-125 as well as the other symptoms you've been experiencing. That said, big kudos to you for being proactive with your care!

Our previous life experiences always color our interpretation of current situations. Just take one step at a time and try not to let your mind wander too far ahead of itself.

Hang in there. We're glad you found us!


monami
  #3  
Unread 07-16-2011, 05:50 AM
Re: 11 cm complex ovarian cyst very high ca125

Hi Mollyfin,
I know that you went to a gyn oncologist that was definitely senior status,
80 is old to be still practicing oncology.
I would go and get an opinion from yet another oncologist at a teaching hospital in your area. Make sure the person is a bit younger, but not too young. My gyn/oncologist is 41. Not too young, but not too old.
I looked at his education and work history on the hospital website and he looked great, with years of experience for his young age. He was an ob/gyn, a Phd, and now a gyn/concologist. He had been utilizing the daVinci method for several years.

I would get a 3rd opinion. If these ovarian cysts turn out to be cancerous,
you need to be treated ASAP. Listen to your body. If you have all of the symptoms, your body may be "telling" you something.

Please get a 3rd opinion.

Get all records from both doctors. You may request a copy. Bring the papers with you when you get a 3rd doctor.
Make this doctor a carefully selected one. Do your homework. Get on the nearest teaching hospital's website. Call for an appointment.

Hopefully, it is not ovarian cancer. If by chance it is, you need to be treated fast, because treating ovarian cancer can be challenging to say the least.
Sorry, but I am not sure that I would allow an 80 year old to do the surgery. JMHO

Good Luck.
  #4  
Unread 07-16-2011, 10:33 AM
Re: 11 cm complex ovarian cyst very high ca125

I am mildly concerned about this doctor - the two people on the rate an md site who rated him seem to think he's a disaster, but the fact that he was recommended to me by my pcp as the best guy to see gives me some confidence - my doctor is VERY upfront about which doctors he thinks are good and which are just okay, etc. He's never steered me wrong before, so if he thinks this guy is the one to do it, I'm inclined to trust him. I don't know if he literally is 80, but he's got to be in his 70s anyway - but so is my pcp, who's a great doctor. And I HOPE that NYU wouldn't continue to employ an oncologist surgeon who couldn't practice competently.

If things do turn out to be cancerous (and of course I strongly hope that they aren't), I'll talk to my primary doctors again about who they feel I should get treatment from/where I should go. I'm fortunate enough to have private insurance so I will have some options.
  #5  
Unread 07-16-2011, 11:01 AM
Re: 11 cm complex ovarian cyst very high ca125

  Quote:
Originally Posted by mollyfin View Post
I am mildly concerned about this doctor - the two people on the rate an md site who rated him seem to think he's a disaster, but the fact that he was recommended to me by my pcp as the best guy to see gives me some confidence - my doctor is VERY upfront about which doctors he thinks are good and which are just okay, etc. He's never steered me wrong before, so if he thinks this guy is the one to do it, I'm inclined to trust him. I don't know if he literally is 80, but he's got to be in his 70s anyway - but so is my pcp, who's a great doctor. And I HOPE that NYU wouldn't continue to employ an oncologist surgeon who couldn't practice competently.

If things do turn out to be cancerous (and of course I strongly hope that they aren't), I'll talk to my primary doctors again about who they feel I should get treatment from/where I should go. I'm fortunate enough to have private insurance so I will have some options....... My surgery is the monday after next, and he'll be doing the surgery. (He also looks about 80 years old, not exaggerating...I hope his hands are steady!)


Molly, you crack me up. 70 is a little different than 80.
Since you don't know his age, he could be 65.

If you feel confident with him, great. You were the one that voiced concern over an 80 year old gyn surgeon oncologist. I happen to agree,
If he is really 80.
  #6  
Unread 07-16-2011, 12:57 PM
Re: 11 cm complex ovarian cyst very high ca125

The gyn/onc who did my surgery had to be late 60's, and he did a great job. He was also highly recommended. I personally like docs who are more seasoned (of course 80 would be a bit much!). As for the online ratings, I try to take those with a grain of salt, especially if there aren't very many. You should be able to check your state's med board to see if there have been any official actions/complaints against him.

Honestly, you should feel comfortable with your doc, so if this really is a concern, maybe give your PCP a call and discuss it with him. You could always get a second opinion from another gyn/onc as well. (((HUGS)))
  #7  
Unread 07-16-2011, 01:15 PM
Re: 11 cm complex ovarian cyst very high ca125

First take a deep breath. I'm familiar with a couple of surgeons in California who are "mature." They do breast cancer surgeries and are very good at it. The odds are the surgeon you have IS a very good one, and will do what is right for you. During your surgery, one or both of your ovaries will be sent to pathology right away for an initial diagnosis based on something called a "frozen section." This will give you doctor vital information within 20-30 minutes, so when you wake up, some answers will be available.

Sometimes knowing everything is just what you need and other times it is not. If you need more information, DO ask for it and have your surgeon walk you through from beginning to end. Your anesthesiologist will call you the night before and ask you questions and answer yours. They are all there to help you feel comfortable BEFORE your surgery.

Bottom line is, don't be afraid to ask as many questions as you need to make you feel more at ease. Surgeons and the surgical staff are there for you.
  #8  
Unread 07-16-2011, 01:23 PM
Re: 11 cm complex ovarian cyst very high ca125

I'm not too worried. If I had just randomly picked him I might be concerned (he's been practicing for over 50 years so he must be in his 70s), but I'm pretty confident that my doctor knows what he's doing, and knows who the best doctors in the city are. He once asked me who my eye doctor was (I forget why) and I told him, and he said "Oh, he's...okay." So I know he wouldn't give a glowing recommendation just because he happens to know the guy. (And yes I have since switched eye doctors - although not because of that...I had a potential eye emergency and just found someone by cold-calling the phone book, since it was after hours and I just needed anyone. I randomly ended up with a doctor who I think is just great, who I now see regularly even though he doesn't take my insurance - I'd rather pay to see a doctor I feel is the best and I'm lucky enough to be in the position where I can do that - and who, coincidentally, my pcp turned out to be a big fan of.)

I do go out of my way to leave positive ratings for the good doctors on those sites, because I figure it's like product reviews on amazon - people are more likely to review something when they are unhappy with the result. (Actually, I try to positively review products, too, for that same reason.)

I tried the web search thing I found for looking for doctors who have had disciplinary action taken against them and found nothing on him. For now, I'm okay with this guy. If it turns out to be something that needs further treatment, I'll ask my pcp and my gyn if they think I should look for another doctor to deal with that. I'm still trying to remain hopeful that the surgery will be the end of all this. Nine days to go.
  #9  
Unread 07-16-2011, 02:44 PM
Re: 11 cm complex ovarian cyst very high ca125

I'm sorry you are having these worries, but very glad you are in the loop with a gyn/onc.

It's amazing to me how easy it is for all of us (I'm included in this) to immediately jump into the thought that what we have is very serious. That doesn't mean you aren't in a significant situation, but there can be lots of reasons you're having some of these other symptoms.

I think it's highly encouraging that all of the docs in your case really doubt that it's cancer. You're right--your age makes it unlikely that it would be cancer. A very small percentage of women your age would develop ovarian cancer. As far as those other symptoms (gas, bloating, side/back pain, intestinal disturbances), keep in mind that part of the reason those symptoms exist in ovarian cancer is because there's a mass in the abdomen and that causes pressure on the other organs which interrupts the way they work. And a cyst that size would have the same impact on the abdominal organs. There's not a lot of extra room in there. And big ovaries cause pain--there's all that pulling on the supportive ligaments. And then add to that the stress of knowing something is wrong and you don't know how serious it is, well, stress can cause those symptoms too.

So please try not to think the worst. And even if you do wake up and learn you have cancer--it's not a death sentence. Treatment protocols for ovarian cancer have progressed amazingly over the past 15 years. Most chances are you'll still going to go to school and get married and have that chance to make the most of your life.

Good luck! Let us know what you learn. I hope your surgery goes well.

  #10  
Unread 07-16-2011, 05:36 PM
Re: 11 cm complex ovarian cyst very high ca125

Thanks...that makes a lot of sense. If it IS cancer, I'll freak out for a while, but I'll deal with it. It's the waiting. I guess I should be glad that my surgeon is so in-demand that I had to wait a month for an available surgery date I guess you don't REALLY want a surgeon who says "You know, I really have nothing going on all week, we can do this tomorrow!"

I know the odds of my having cancer are slight. I also know that if it IS cancer, there are things that can be done about it. The information on the boards here has been really helpful. (As have the members of course!)
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