Need some opinions re: Complex cyst

I decided to post here because I thought you ladies might have had some experience with this.

I had a TAH in October, kept both ovaries, had continued pain, had ultrasound(s) Feb 1st, and a cyst that wasn't there on the day of surgery had grown to the size of a tennis ball.

Prior to seeing my gyn last Wednesday, I did a ton of research and was looking forward to talking to my doc, since I now knew what questions to ask. When I asked him what kind of cyst it was, he said "I don't know". I asked again, and at that point he flipped to the path report and read part of what follows:

"The left adnexal region demonstrates a complex mixed cystic and solid mass effect appearing to involve the left ovary. There are multiple cystic chambers of irregular shape with a solid posterior central region and thick septa between the chambers. There is vascular flow within the solid areas showing a resistivity index of 0.40 which is borderline low. An ovarian neoplasm is a possibility. This measures 6.5 x 5 x 3.7 cm.

The right ovary is normal in appearance and measures 3 x 2.1 x 1.5 cm. There is no free pelvic fluid. The patient has undergone previous hysterectomy.

IMPRESSION: COMPLEX CYSTIC MASS OF THE LEFT ADNEXAL REGION, RULE OUT NEOPLASM"

Before I walked in there, I already knew the huge difference between a "simple" and a "complex" cyst. Yet, even after reading the words "complex cyst", he still said "I don't know what kind of cyst it is." Then he gave me a prescription for Aygestin and told me he'd redo the ultrasound in a month to see if the cyst would shrink.

That is the treatment for a "simple" cyst, not a "complex" cyst.

Many of the characteristics described in the report are the hallmarks for potential malignancy. The cyst contains both fluid and solid matter which categorizes it as a "complex" cyst, rather than a "simple" cyst, which only contains fluid; it contains "multiple cystic chambers" (also called "multilocular"); "thick septa", which are the walls of the chambers; and has a borderline low vascular resistivity, which is also associated with possible malignancy. The only good thing is that there's no free pelvic fluid (ascites). I also know that most times even this type of cyst is benign, but . . .

I've also told my gyn several times, before and after my TAH, that I have 2 aunts who died of ovarian cancer.

Because I'm got an HMO, I have to get a referral from him to see a gyn/onc, which is what I think I need. However, I didn't feel (and still don't) strong enough to challenge him and basically tell him that I thought he didn't know what the heck he was talking about.

Do I wait for a month and let a doctor who doesn't know anything about cysts do a laparascopic removal of my ovaries? Prior to this, I trusted him, but now I've lost complete faith in him. He happens to be the head of the department of a prominent women's health group. How could he not know what type of cyst it is?

Thanks for listening and any help you could be provided would be extremely appreciated.

Connie

I would try to get him to give you a refferal to GYN/ONC, if for nothing else but piece of mind. Given your history, and the description of the cyst, that would make me more than willing to consult with a gyn/onc.

If they even mention possible malignancy I'd ask for a referral to a gyn/onc. Just tell this Dr. you have concerns and would like a second opinion. If he balks, then you know you need another doctor pronto--a good doctor will welcome a second opinion. Given the family history, and the mention of possible neoplasm, I'd ask for this asap. Far better to jump the gun than to wait. Best wishes.

Connie:

I wasn't there, but it sounds to me like, in telling you that he doesn't know "what kind of cyst it is" that in fact he is telling you that this could be features of neoplasm but also this sort of cyst is consistent with endometrioma. Obviously it will take pathology to be sure exactly what sort of cyst it is!

My cyst was larger, and so involved one ovary that on multiple ultrasounds AND CT we never did find out off which ovary it arose. Even with a CA-125 of 200, it did turn out to be endometrioma.

Has your doctor done a CA-125? They are not perfect, but armed with that result and the ultrasound, you should have enough "ammunition" to ask for the consult. A discreet way around this, since you're uncomfortable asking directly, would be to ask him, if in fact this is malignant, what the plan is for lymph node sampling, etc. and how could that possibly be done laparoscopically. Let him know that you are in no mood for yet a third surgery, should it turn out malignant, to "take care" of things later on! Most GYNs are not able to do the more extensive surgery that this may require. I was very happy that mine was done by a GYN-oncologist, as they were able to remove the cyst (via abdominal approach) WITHOUT rupturing it. I honestly feel that my recovery has been as good as it has because of that one fact!

I can understand how distressing this is for you, and how reluctant you would be to take Aygestin for this. Is it possible to get a second opinion within this HMO system? Even the most restrictive of HMOs encourage a second opinion prior to a surgery this significant. And ask for that second opinion to be with the oncologist, citing the line in the report "neoplasm is a possibility".

s to you...I know, first-hand, how difficult this is. I had about a month in between discovery of this giant, complex cyst, and my surgery. There's a lot of worrying you can do! But I do hope that you are able to get the care you need. You're articulate, and should be able to have the right to a second opinion. And I would let him know, when you call to ask about a second opinion, that there is a strong family history of ovarian CA, and that "watchful waiting" with Aygestin is an option that makes you nervous.

If you run into a asking, go to the membership services department of your HMO, let them know that, as cancer is a possibility, you want a second opinion. They can bypass him to authorize another opinion...and your primary caregiver (internist, GP) should also be able to.

I would also share this new information with your primary doctor, and let them know how uncomfortable you are with the answers you have been given. Maybe they can give you a more direct referral for the care that you need.

Let us know what happens, OK? I'd be on the phone tomorrow, if I were you, beginning to mobilize whatever resources you can to get that second, GYN-onc opinion...

Audrey

s Connie

It is almost hard to believe that your ob/gyn did a TAH on you, and knowing you have two aunts with ovca, chose to leave your ovaries behind. I say a big shame on him!!!!!!
Please insist that he give you a referral to a gyn oncologist immediately. Would it be possible to get the referral from your primary care doc?
Do not allow this ob/gyn to do a laproscopic removal of your ovaries without first consulting a gyn onc.
I cannot stress the importance of this enough!!!
No ob/gyn is qualified to perform the proper staging surgery.
And every ob/gyn under the age of fifty, learned this as they went through their residency.
Please keep in touch.

karenann

I appreciate the advice you've all given me. You gave me the strength I needed to call my doctor on Monday and tell him I wanted further testing because of my family history and the nature of the cyst. I asked for a CT scan and CA125 test, and to my surprise my doctor agreed. I'm having blood drawn tomorrow and having the CT scan on Friday. I'll let you all know what the results are and what his recommendation is (and I won't agree to removing anything laparoscopically after what I've heard here).

Thanks again.

Connie

Way to go Connie!!!! I'll be watching for your post. oxoxokarenann

Connie:

I'll be ing that you get the answers you need to make your decisions. And if anything comes out suspicious on this testing, most GYNS with your history will know that they are in over their heads -- bet you have NO trouble getting that GYN-oncologist referral now!



Audrey

P.S. If you've never had a CT with contrast before, watch out for the intestinal aftereffects -- gas pains and a "surprise" bowel clean-out -- at least that's the way it worked for me!

Thanks for the advice, Audrey!

Uhhh, how soon after the test should I get the fun "surprise" clean-out? Do you remember?

I see you live in LA - I live in Riverside, but my appointment is in Laguna Hills at 4:30 p.m., so I face a Friday night commute home which takes anywhere from 1 1/2 to 2 hours. Will I make it or should I go visit a nearby and hopefully understanding friend (with no sense of smell) for a few hours before I attempt to drive home?

BTW, I have read a lot of your posts to others - you are very generous with your time and provide a lot of information and great advice and I have learned a lot from you and gotten a lot of comfort from what you have shared.

Thanks again.

Connie

Connie, since you live in southern California, let me share with you my experience with the (yuck) contrast (this was oral contrast by the way):

We live near Dodger stadium and Griffith Park/Glendale...and I had the CT near where I work in Long Beach. We hit the 710 freeway in Friday night traffic with my DH driving (I'd had the entire pre-op that day -- all testing and doctor/anesthesia visits). The gas pains hit just north of the 405, and that was the LONGEST hour or so of my life. The actual "action" did not hit until I got home, but lasted well into the evening! Once I saw the CT pictures (since I do ultrasound, the radiologist offered "professional courtesy" and showed me my films), I knew why I had been constipated for so long. The mass was pushing my sigmoid colon and rectal area nearly 4 inches to the right, and impinging on it all. In a way, though the gas pains were intense, the "cleanout" was a relief.

It turned out that driving home from the same hospital after the hyst was a LOT easier, pain-wise, than that Friday night journey...

I'm glad I've been able to help in some small way. My situation was somewhat similar to yours, although the hyst was actually an "afterthought" to my primary concern. In fact, I knew I had this large cyst, but when my (new to me) GYN said, matter-of-factly, "hysterectomy" my mouth dropped open in shock. Not so my DH, though -- he later said, with my medical history of severe endo and adhesions, that he'd thought all along that it was only a matter of time. Like Karenann, I'm astonished that your ovaries didn't "go" in the first surgery...although I don't know your age, that strong family history should have at least brought the discussion up. We (briefly) discussed keeping my remaining ovary if everything was benign. In the end, interestingly enough, it was reading this site that convinced me I would be in surgery again within a year or so for the same thing if it were endo. That's one portion of the decision that I've never, ever regretted. I don't even really regret the hyst, just that my body took the "choice" away from me. And my DH was right -- I had severe adeno (shoulda known) and would have been a hyst candidate within a year or so anyway.

Connie, I'm digressing, but I just wanted you to know that I have some idea of where you are right now, and just how difficult this is. I'm VERY glad that you went and called your doctor. Do not EVER hesitate to do what you think is right -- it is your body, and no one but you will fight so well for it! If what we say helps you in that fight, it's worth it . There is support in abundance here, and I'm so glad it made a difference to you!



Audrey