A worried mom needs advice.

This may sound crazy to all of you. After over a year of running to doctors my daughter has been told she has a 3.5 cm cyst on her right ovary. Her stomach doctor found it. The gyn has scheduled surgery in two weeks. She says she doesn't know what she'll find when she gets in there. The CA-125 didn't show cancer but I've heard its not that reliable. The stomach doctor that found it says it doesn't look like cancer.
So here's my question. Shouldn't she have this surgery done by an oncologist surgeon instead of her regular gyn? I know it hasn't been diagnosed but she is high risk in my opinion.
Her great-grandmother had a hysterectomy for cancer, her grandmother died of breast cancer an I had breast cancer. Also I have a half sister with breast cancer and her dad had prostrate cancer.
Did anyone here consider going to a research hospital in the beginning like Mayo Clinic? She is scared to death and I'm afraid she'll stick her head in the sand instead of looking for ways to fight this.
When I was diagnosed with breast cancer I tried to go to a research hospital here. I wanted both breast removed an the big guns. They said that was over kill.
I did go to a hospital that specialized in breast cancer but not the research hospital.
I think its best to start the fight an be armed from the beginning.
Any advice from the experts here would really be appreciated.
Thank you,
Ban

By FavoriteAunt
Posted April 2, 2009 at 2:30 pm
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Yes, it's probably true they won't know what they are dealing with until the surgery. Did they send her for a CT scan in preparation for the surgery? Since the surgery is in just 2 weeks, would you have time to find a gyn/onc surgeon? That is always the best option, especially if you are unsure about things or have a history.

Regarding hospitals, I know that teaching hospitals are also excellent vs. just plain hospitals. Naturally, it is a personal choice, and dependent on where you live. I wish your daughter the very best of luck with her procedure.

By Jennali
Posted April 2, 2009 at 2:41 pm
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With your family history, I would definitely err on the side of caution. Your daughter may also want to look into genetic testing for the BRCA gene mutations.

I was able to see a gyn/onc very quickly after the regular gyn referred me. Most gyn/oncs will understand the gravity of the situation and see you pretty quickly...I think. I would suggest you really consider that route. If your daughter does have cancer, she needs a gyn/onc to do the surgery.

By Mia0719
Posted April 2, 2009 at 3:43 pm
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Your daughter should see a Gyn/Onc before she has her surgery. I had a cyst on my left ovary and luckily had a gyn/onc perform surgery on me. I don’t mean to worry you, but I went into surgery to have my left ovary removed and ended up having a complete hysterectomy because I had a Borderline Tumor. Hopefully, your daughter will only need a simple surgery, but it’s very important for her to see a specialist, just in case. I gny/onc knows what to look for if anything looks suspicious. Positive thoughts and prayers for you and your daughter.

By Bootyjig5
Posted April 2, 2009 at 5:50 pm
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Hi there.

Your daughter's situations sounds alot like mine. I too had a 4 cm. mass on my right ovary and a 3 cm mass on my left ovary, have family history of OVC, had a some-what high number from my CA test and my gyn is the one who did my surgery. I had a full blown complete hysterectomy 3 weeks ago and even tho everyone is different, my dr. also told me that it didn't look like cancer to him and he was right, it wasn't. I was a lucky one t NOT have OVC. Hopefully everything will work out for the best for your daughter. Both of you will be in my thoughts.

By bannh
Posted April 2, 2009 at 6:59 pm
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Thanks everyone. I've called her an told her our shared opinions. She's making an oppointment to talk to her gyn about all this.
Her husband doesn't understand the big deal. He thinks you can just take it out an everything would be fine. He doesn't think I should upset her talking about options.
Thanks to you all.
Ban

By Shearaw
Posted April 2, 2009 at 7:49 pm
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I agree with Jennali and and Mia on all points. Given the family histories, a specialist might want to do a PET scan to look for any other active areas prior to surgery. I think that if you mention the family histories with BC when you make initial phone contact, they will try to get you in soonest.

I was referred directly to a research hospital that is within an hour's drive from my home. I think that the treatment options may be slightly more diverse in that setting. Also, they tend to treat many more cases of similar disease... and they are quite comfortable giving second opinions. (I have also done that at another research hospital near me.)

One other comment...with the family history, have you considered getting BRCA testing and genetic counseling for yourself? Some BRCA mutations, but not all of them, associated with hereditary Breast Cancers also point to increased risk for OvCa in the same individuals. It may be worth it to have a phone call with a genetic counselor. It is highly likely that your insurance would cover the costs...and the counselor would know that, too.

Sending wishes for good outcomes.

By mommasbaby
Posted April 3, 2009 at 12:39 am
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Ban,

I wish you luck. I understand taking the cautious route. I just drove 750 miles to move my mom because she has a tumor. No surgeon yet, but she is in the right place. Based on all of my research the university hospitals usually have a tumor center. Everyone is just scared - I know I was when my mom's trumor was "accidently" discovered 5 days ago. My fiancee's coworker had a grapfruit size tumor on her ovary and it turned out to be just a fibroid (spelling??) But she went the route of the gyn oncologist and saved herself from a total hysterectomy as the reg gyn wanted. Her and her new husband are now expecting their first child!

I wish you and your family all the luck.
Love and light!

By momanderson920
Posted April 3, 2009 at 12:42 am
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Regardless of where she has it done, a gyn/onc is imperative to either do the surgery or assist in case it is cancer. They know how to do these operations to contain the tumor when removing and map for potential metastasis sites....plus the omentum is removed as it is a target tissue for the cancer. It could not hurt to check out having a top notch facility do the surgery if you can. But do get that gyn/onc onboard. They don't know for sure if it is cancer until they go in and get a pathologist to look at it. I had two oncs say mine didn't look like cancer and it was ....they did qualify their diagnosis with "we don't know for sure until we go in and it is biopsied", but it doesn't have the look of cancer. I had Stage III3C serous papillary epithelial ovarian cancer.

By momanderson920
Posted April 3, 2009 at 12:43 am
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On the flip side, there are tumors that are benign and hers very well could be, especially if she has a normal CA125. One kind is called dermoids and there is another benign type. Don't panic until they do the surgery.

By momanderson920
Posted April 3, 2009 at 12:47 am
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Sorry for the multiple posts....there are downsides to big teaching hospitals...I can tell you from firsthand experience since I went to a teaching hospital for my surgery. The infection rate is often higher, you often have residents doing much of the followup work....I know I did and they missed something major and I have kidney problems now because of it. I was told by a gyn friend that the big teaching hospitals statistically have higher postop infection rates.

By kathy6
Posted April 3, 2009 at 8:25 pm
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I agree with MomA. Where do you live, we can find you a great center close to where you are. She needs to look at it like this- if this was you or if she has a daughter and this was happening to her, would she just go along with a regular surgeon or would she find a specialist? If she would get the specialist (which I am sure she would) why is she any less important? There is a good chance that this may not be cancer, but if there is even a small chance that it is, why not get the surgery done right the first time rather than possibly having it done again? She needs to set herself up for the best possible outcome.. If it's not cancer, then great the gyn surgeon would be the best person to determine that, if God forbid it is, then she will be set up for the best possible outcome... She needs to do for herself what she would do for her loved ones. Find a gyn surgeon. I'll find one for you, give me your city and state..

Hugs,
Kathy

By bannh
Posted April 4, 2009 at 2:51 am
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We live close to Little Rock, Arkansas. We have a large University here but it's not a cancer research hospital, it more education an teaching I think. If you get a good doctor that's wonderful but doesn't always happen.
We Have a good breast center. That's where I went. I just don't know where is best for Ovarian cancer. I'd like a place that specializes in just that. If anyone knows of one or a good gyn/onc I would sure love the information.
I talked with my daughter today. She wants to have my grand daughters birthday party next weekend before she has surgery. I can understand that. She has an appointment with her gyn the following Monday. She will talk to her then about an onc/gyn. I'm going with her so I'll get the chance to tell her my concerns.
Thank you guys for all the replies. I really appreciate it.
Ban

By OvCaMom
Posted April 4, 2009 at 9:35 am
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My daughter was diagnosed with stage IV ovarian cancer 5 years ago and was in remission for only 5 months during that time. As a result, she 7 different chemo/research protocols and has been treated at a community hospital, a teaching hospital, and at a research center. But the important thing is that she is still here! She has been ascertive in seeking the best available care for herself throughout this long and difficult journey.

The top three cancer centers are MD Anderson, Sloan Kettering, and Dana Farber. Then of course there is NIH in Bethesda if she should have cancer and want to explore trials at some point.

You might start by checking her insurance plan to see if there is a gynecologic oncologist within her network. That way she can walk in the door and request a consult with a specific person that her gyn can easily (and for her affordably) refer to.

We have been extremely happy with the team of gynecologic oncologists at OU Physicians in OK City... and a new cancer center will be opening in OKC this fall. That is not too far from where you live.

By adsiemens
Posted April 4, 2009 at 10:54 am
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I had my OBGYN do my surgery. At the time they just thought I had a few cysts on my ovaries that they would remove. They didn't realize how bad it was until they were in there. My surgery turned out excellent. The doctor did a full hysterectomy and probably saved my life. I found out I had stage3c Ovarian Cancer. I think that without him knowing what to look for and taking the time to make sure he got everything he could see I would have been alot worse off. The biggest thing for your daughter is to make sure she trusts the people doing the surgery and that they know what to look for. Good Luck to her and your whole family. I know how hard it is to go thru this and how hard it is on my family.

By dragonflynan
Posted April 4, 2009 at 12:03 pm
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Hi Ban,

Lots thrown at you and it is overwhelming. My gynocologist thought I might have a cyst or benign tumor on my ovary last Nov. and she referred me immediately to a gynocological oncologist to do the surgery. I felt very comfortable with the gyn/oncologist and also felt in better hands since he knew exactly what to look for during surgery. My gynocologist could not be present at the surgery. The surgery found a benign tumor just beginning to transition to cancer so I felt lucky it was caught early enough. I strongly believe your gyno should make that referral or at least bring one in to assist. Time is always precious and when you have the correct people in place from the beginning, your peace of mind will help going forward.

Your daughter could very easily have a benign tumor or cyst so focus on that as well. But do be prepared for any senario.

I wish you both the best and stay positive! One day at a time helps me get through life!

By verlinda
Posted April 4, 2009 at 3:19 pm
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CA125's aren't reliable for everyone. Unfortunately, by the time you find out which group you're in, you've already had the surgery. I can't stress enough the importance of having a gynecological oncologist doing the surgery. It's wonderful if he or she proves to be unnecessary. If it's malignant, their immediate involvement can mean the difference between another surgery, between taking just the right biopsies, and between having optimal or best-guess subsequent treatment.

A gynecologist who refuses to admit remote possibilities of cancer without giving you research to back up that opinion is a gynecologist who is dangerously out of date. Her family history of cancer should be sending up red flags all over the place. However, 90% of ovarian cancers do not have a hereditary genetic basis. (I'm a BRCA1 positive person, but we didn't find out until 7 months after chemo ended, and then, through my persistence. I had a wonderful gyn-onc, but I saw his nurse practitioners half the time and somehow, no one picked up on the huge family history of cancer. I had typed up a list of questions and requested to see the gyn/onc. One of my concerns was a request for more than an annual mammogram. He said, "Why do you think that's necessary?"

I said, "Well, my mother, and two paternal aunts had breast cancer. My sister died of ovarian cancer. One of the paternal aunts also had ovarian cancer before dying of lung cancer. My dad was one of seven children. Six of them died of cancer."

He said, "My gosh, you don't need more frequent mammograms. You need genetic counseling."

This was the third time I'd raised the issue at the oncology office. It just took presenting it to the right person in the right way. I think the printed questions were less threatening. My verbal questions were always brushed aside.

By Gia
Posted April 5, 2009 at 5:11 am
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It seems most everyone feels a GYN Oncologist is the prefered route and I agree. Your daughter's GYN should help in finding someone in your area or nearby city. Eventhough surgery is scheduled a new plan can be established once you have found a gyn surgicial oncologist---they are the most qualified to do gyn surgery. Good outcomes depend on the first optimial removal of tumors (if any are present). If you cannot find a gyn oncologist in Little Rock---maybe Memphis. I live in Nashville and could recommend someone. Once you know what the diagnosis is you can then decide if you want treatment at a research hospital. Best Gia

By abc123
Posted April 5, 2009 at 11:32 pm
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While I've been 'lurking' for a while reading the great information posted by members on this site, I'm actually new to the group. My situation is very similar to Ban's daughter. I'm 38 years old, and after a sudden onset of significant pelvic pain was diagnosed via trans-vaginal and regular ultrasound with an right ovarian mass 3-4cm, and simple cyst on the same ovary of a similar size. This was about 7 weeks ago. The initial diagnosis 'suggested' the mass is a dermoid cyst (but it was apparently hard to see it clearly on the ultrasound). My OB wanted to monitor it, and scheduled f/u with ultrasound about a month later. That showed no significant change in the mass (its shape had changed; total size was similar); the simple cyst had reduced in size. My OB is convinced this is a dermoid cyst. He categorically dismissed cancer as a diagnosis when I raised it with him, although acknowledged that the only way to really tell is with surgery. I have scheduled surgery for two weeks time, mainly because I am trying to conceive, and he believes removal before conception is probably safer (as I do), as during pregnancy a cyst can cause pain due to compression etc.
While I am of course hopeful his diagnosis is correct, the diagnosis of a dermoid cyst was clearly not categorical via ultrasound (either the first or second ultrasound). I am not sure how to proceed. I do want to pursue surgical removal, but am not clear having read many posts on this site whether having initial surgery with an OB vs GNY ONC is preferable (or, more specifically, whether having the OB do the surgery is a negative). Additionally, I am new to this OB (I just moved to a new area), and haven't any experience with him, and am not clear how he'd react to me pushing the point further on the diagnosis and need for additional consultation. (That said, I am with a PPO, so don't need a referral).
Any advice or experiences that would help me think this through would be appreciated. Two things I am particularly interested in hearing about are whether others had an initial diagnosis of a dermoid cyst that turned out to be cancer, and the pros and cons of initial surgery via and OB if the diagnosis turns out to be cancer.
Thanks!

By verlinda
Posted April 6, 2009 at 6:26 am
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I had cysts that showed on ultrasound which totally disappeared a few years before ovarian cancer. I think that's especially likely to happen before menopause.

Perhaps you could ask your ob if a gynecological oncologist would be immediately available (while you're still under anesthesia!) if the dermoid turns out to be cancer. The advantage of having them involved during surgery is that they know more about where to take the biopsies, etc.

It sounds as though your ob is good and is open to options.

Let us know what happens.

Blessings.

By paintergal
Posted June 15, 2009 at 10:40 pm
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Hi,Im sorry to hear that your daughter is going through suchan ordeal,but its great that she has you there backing her up. As for your question, I definately think you should try and get a gynecologist-oncologist for your daughters surgery. The surgery is the first step in the cancer treatment,because of the debulking that usually happens and also it is at this point that the staging is done. Please dont think that any action is good action. The initial stage is so important,because if it is ovarian cancer getting rid (surgical removal) of as much cancer as possible helps the patient fight any residual disease and influences outcome and treatment otpions. You and your daughter are in my prayers. Take care.

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