Does this sound right?

[happyholly]

Hi,
I posted a few months ago about my large bilateral ovarian complex cysts/masses. Everyone was so kind and helpful, and I read this site every day -- you guys provide so much information about what to expect! I am very thankful.

Would you please tell me your opinion about something else? My surgery is this Wednesday (9/13). My doctor isn't sure what the nature of the bilateral complex cysts are, but he said it's possible they are endometriomas, though he said their appearance may indicate a "pathology" and he cannot tell what they are till the biopsy. (He is a regular gyn doctor, not an oncologist.)

He's planning to do a laparoscopy, and then "cauterize and drain" the endometriomas. From what I've read, if it's ovarian malignancy, a laparoscopy could spill the cells. I asked him about this, and he replied, "Well sure, I could spill some cells into your abdomen. But who's to say you don't already have spilt cells?"

Also, if it is endometriomas, I read that they must be entirely removed to prevent re-occurance. But my doctor says he will just cut around the masses and that will kill the growths sufficiently, even if he doesn't manage to get all the cells.

I'm worried. I know it's nothing like what some of you have gone through, but I sure do appreciate the kind support of people like Gatsby and Mickey Vicki. Please tell me what you think. Does my doctor's plan sound reasonable? He just seems a litle too cavilier to me. I am 33 and have two wonderful little kids and am scared. But this doctor is my only option (we have limited choices in my area). THANKS!

[msjulie]

I had an Abdominal hysterectomy in 1983 at 38 years old., my Postoperative Diagnosis was Severe dysmenorrhea. Pelvic congestive syndrome, Uterine prolapse, plus left ovarian cyst.
My gyn said that the Right Ovarie appeared to be normal except a black spot that could be endometriosis and that it was burned with cautery. The Left Ovarie had a cyst on top of the ovary which was removed by wedge resection. The Uterus was removed.
Now in 2007 at 62 years old, I have started feeling pain, discomfort mainly in the left ovary and some slight discomfort in the right that seems to come and go, but both sides getting more noticable.
I spoke to my primary doctor about it and he had me get a CT SCAN, it took a week after I kept calling his office to get him to get back with results, his office called and said the doctor though it was gallstones and no further information, until later in the day another office worker called and said the doctor set up test for 9-12-07 for an Ultrasound for the Abdomen. I am not having systems as from Gallstones. The doctor wants me to see a GI specialist. Can a Utrasound of the abdomen show problems with the Ovaries or do you have to have a seperate Ultrasound for the Pelvic area?
My concern of course is ovarian cancer or could it be possible endometriosis has returned.
Can you just make an appointment with a gyn/onc for test or do you have to be referred by a primary or a gyn? Will appreciate any information from anyone. Thanks

[sami2]

Hi Lissy1, I guess I forgot to mention that when I got pregnant the second time it was on my own. No in-vitro. So that goes to show you that a laporoscopy and lasering the endo can help. Did you have this done also? I didn't read what your age was, but when I had the surgery done for the endo I was 37. Always have hope that it will happen. Good luck to you.

[Lissy1]

Sami, I'm just starting down this road. I found out I had some compelx cysts. Thankfully I don't need referrals with my insurance, so I went to a gyn/onc. Now I'm moving onto a RE because I want to perserve my fertility. I haven't had any testing done other then the discovery of the suspected endometromas, and my low thyroid. I'm 31, will see what happens.

[Lissy1]

I suspect I may be in a similar position (having stuff removed) in a few years. I just found out I had low thyroid and endo a few months ago, hopefully I'll have some time left to get pg.

[sami2]

Hi Lissy1, I had a laparotomy back in 1999 with a fertility doctor because I was having a hard time getting pregnant with my second child. He gave me a video of my surgery and he drained the endometriomas and lasered off all of the endo around my uterus and tubes. In fact my tubes and ovaries were adhered together by the endo. After surgery he told me I would never get pregnant on my own and that the next step would be in-vitro. Well.... I got pregnant the very next month with my second child. So I wish you well and hope that you also will get pregnant.
After my second child I had nothing but problems with pain, hormonal inbalances and heavy bleeding. I suffered for 5 years before I finally said enough is enough. I had the ultrasound which showed the complex cysts on each ovary. Being 42 and not wanting anymore children my doctor said it should all come out because others surgerys in the future were probable. And he also couldn't say it was 100% benign by the ultrasound. So if someone is young and they do want children, they can drain the cysts but it is more than likely they will come back and alot of times with a vengence.

[Lissy1]

I'm in a similar situation, except I do want children. I have a endometrioma on my right ovary. My gyn/onc said he doesn't want to remove it/ovary because the other ovary doesn't look so good either. He told me I need to get pg asap. I'm also wondering on the 50/50 of it either being cancer or a endometrioma. My gyn/onc said the risk of cancer is very very low in endometrioma's. I was reading a study saying that with u/s radiologists were with about 85% accuracy able to tell its a endometrioma. Could your dr. during surgery deterimine if its cancerous then do more thorogh removal? I'm guessing the dr. is approaching this with the assumption that its not cancerous and is indeed a endometrioma, in which case draining is somewhat standard (especially since you are young)

[happyholly]

Thanks for your prayers, Sharon! The nurse is supposed to call me today-

[wubbie3]

I'm curious as to how the ultrasound pics are giving them a 50-50 thought of either endo or OvCa. I was told (and everything else I've read) that without actually looking at what's in there, they can't tell what it is, unless it's a dermoid and they can see teeth.
I was dx with a possible dermoid that turned out to be a ruptured endometrioma. My surgeon did the bag removal of the endometrioma, then lasered all the endo she could find. She suspected a dermoid, but said it could be pretty much anything since there's no diagnostic test that could visualize it clearly.
Did your gyn give you a reason why he suspects only those two things?
~Marianne

[happyholly]

Hi Marianne,

I don't think he was being dogmatic about it, because he's repeatedly said he "can't be sure until the biopsy," but just that he has a strong suspicion, which is basically what the original referring gyn said, too.

What bothers me is when doctors get one idea in their head and they are so sure it's one thing, so that they're not looking carefully at other possibilities. It makes you afraid they'll miss something because they're so self-assured that they "know" what it is.    

Before all of this happened (when I had no real health issues to speak of) I used to think doctors knew EVERYTHING. (ha!) Now I am slowly learning medicine is largely a matter of guessing plus trial and error. As patients we have to be super vigilant ourselves and not rely on the doctors. It's been an eye-opening experience, to be sure.

[sami2]

Hi holly, gosh, that is a good question, I don't know if they were on the inside or outside. I'm assuming the outside since endo grows outside the tubes and ovaries, but thats just a guess. It was never mentioned and I never thought to ask. Did they tell you where your cysts are, inside or outside.
I know your surgery is tomorrow but I would definitly be sure that the doctor doing your surgery knows your thoughts on not having any more children. My feeling too was since I was done having children I had no problem with them taking the ovaries. I didn't want to have to deal with this or something more serious in the future. You have to remember that this is your body and you should make the decision on what that doctor is going to do. If your original doc said she feels the ovaries should come out and you agree than I would definitly make sure that this message is given to the doctor doing the surgery. Also, how long is  your doctor out on leave that she can't do the surgery? Is it possible that you would feel more comfortable waiting and having her do the surgery?

[happyholly]

Hi Sami,

Thanks for sharing your experience. Your situation sounds so much like mine, it's uncanny. What your dr recommended (ie: taking the ovaries if it's endo) is exactly what my original gyn advised. Unfortunately, she isn't able to do the surgery because of an injury, so she referred me to this other doctor (the one who is doing the surgery tomorrow). This new gyn is also a baby doctor and is concerned above all else with preserving ovaries/fertility, so he doesn't want to take the ovaries out even if they are full of endometrioma. (I have 2 kids already and am done with childbearing, so leaving my ovaries or taking them doesn't matter to me.)  

I've never known I had endo before or had any symptoms, but both gyns think it's very possible because, like you, the cysts are bilateral.

Please tell me, were your cysts on the ovaries or inside the ovaries? I have been searching everywhere for the answer to that question: that is, if endo is more commonly found *inside* or *on* ovaries. Thanks!  

Holly

[sami2]

happyholly, I had to respond when I read your post. I have been reading this site for quite awhile now but just recently signed in to answer questions. I had a hysterectomy in January for the same thing you are going in for. I had two huge complex bilateral cysts and was told that I would need surgery to have a definite diagnosis. My doctor said it was probable that it was endometriomas since I have a history of it and because it was on both ovaries, but he couldn't be 100% sure. I was scared, really scared, like you. I am 42 and have 2 small children and the thought of cancer was devastating to say the least. My doctor told me that if it were endometriomas that he would take both ovaries because it was impossible to just take the cyst itself when it is of this nature. Just draining them will not do anything, they will continue to keep coming back. I did not have an oncologist on hand, which I would have questioned now reading this site, but I did have bowel specialist there incase the endo had spread to the bowels. I was very fortunate that it was endometriomas and all of the scar tissue and endo was confined to the uterus and ovaries. It was a clean surgery. I do want you to know that my doctor did tell me that because it was on both ovaries he was more assured that it was endometriomas than if I would have had only one ovary affected.
It really stinks that your insurance will not cover the oncologist. How do they think you will get an accurate diagnosis unless you have surgery? That being said you might at least ask your doctor about the bowel specialist incase you have endo and it has spread. My doctor said it can be a very delicate surgery when it has spread to other organs. Good luck and let me know what the doctor says.

[shazzybow]

i am praying for you in the next few days that everything works out for you, i can fully understand how scary this must be for you and the choices that you have appear so limited, i hope your surgeon listens to your concerns can you get hold of te nurse again and see if she can help in deciding what you do next? good luck sharon

[happyholly]

Hi Mickey Vicki,

I called my "regular" gyn this afternoon (the one who referred me to this gyn surgeon). My regular gyn doesn't do surgeries any longer (she had an injury). She said she was "quite surprised" to hear this surgeon say he's going to merely cautherize and drain the endometriomas/tumors, that she had thought he would excise the tumors completely.

She ended by saying that he is a good doctor and "every surgeon does things differently, I suppose. I'm just surprised by his proposed method."

I admit I am really concerned now after reading what you, NYC Lady, and Rain66 wrote. Because of what you guys said, I called my surgeon just now and told him I really want the tumors/cysts excised completely and NOT drained (and that was what my orginal gyn recommended on the phone today, too). The secretary wrote it all down and said she'd tell him my message. Please pray this all works out the way it's supposed to! I can't believe this is happening in the 11th hour like this.

I appreciate you all so much!

[happyholly]

Thank you, Rain66 and NYC Lady, for your counsel and words of experience.  

My insurance will only allow me to see a gyno oncologist IF a "definite diagnosis" of cancer is made. Then they will take over treatment. The catch-22 is, of course, that a "definite diagnosis" can only be made AFTER the initial surgery takes place (which a regular gyn can sometimes botch beyond repair). But from what I hear women on this forum repeatedly saying: "You only have one chance to get it right" (ie: the first initial surgery).

There is only one other surgeon available who can do this surgery, but he is unable to schedule any more surgeries (for new patients) until late December. I am worried about not doing anything sooner, especially since 2 doctors have told me my ultrasound pictures can 50/50% be endometriomas or OVCA (that the 2 conditions can mimic each other, appearance-wise, on ultrasounds). Also, my CA 125 was mildly elevated, but only by a tiny amount (38 = only 3 over normal).

It's so frustrating and scary when you just don't know what to do. I wish so much I could have an oncologist present at my surgery but it doesn't appear it's possible. The triage nurse at the oncology dept is supposed to call me today to review my case and see if they can make an exception, but she said it doesn't appear likely if the biopsy hasn't taken place yet.  

Thanks SO MUCH for your support and for "being there" -- I will let you know what happens.
Holly

[MickeyVicki]

To answer your question in a word - NO.  His comments do not sound reasonable to me.   Removing the cysts by placing them in a bag to prevent spillage is the proper, recognized procedure even when cancer is not suspected.  According to my  doctor, even if the cysts are merely benign endometriomas,  the cysts should still be removed by the "bag method" as spilling the cyst contents is believed to increase the probability and development of endometriosis elsewhere in the abdomen.  

In my opinion, you truly need another opinion, preferably from a gyn oncologist. Another 'regular' gyn's opinion would be better than nothing.

[nyc lady]

Happyholly, if you are questioning your doctor,then it is worth the wait of getting a 2nd opinion.  Is a gyn/onc the best way to go, of course....and NOT because I think that you have cancer, but, because GYN/ONC have years more training in female "abnormalities" then do OB/GYNs who concentrate a big part of their studies on obstetrics.  

If it is endometriosis, then a GYN/ONC is also the doctor of choice because of their additional training they are better equiped to remove the endo from your organs if it has spread.

How large are your cysts?  And, I agree the doctor does seem to have a very cavelier attitude....I would be concerned with his response.

Good luck....let us know what you decide to do.

[rain66]

I would strongly suggest you wait a bit longer and get an opinion from a good gynocological oncologist (gyno oncologist).Being one of 3 daughters of a mother who was very savvy and worked in the medical field, but who discovered she had Ovarian Cancer Stage 3, it is the best route.
   I am advised to goi n for Trans-vaginal ultrasounds every 6-12 months, just because I am higher risk than the average woman.
    Not trying to scare you, but a gyno-oncologist who comes recommended and has a good reputation, as well as experience ( I use a female DR), is the way to go, as they have vastly more knowledge concerning problems like yours than an OB/gynocologist.
     If you question your DR's abilities and knowlege in this field, I recommend that you do not proceed with a serious operation at this time, until you have researched a better source. Personally, I would allow only a gyno-oncologist to perform the surgery you are going to encounter.