First visit to GYN/ONC, what do I ask?

[juliesmom]

Well, my gyn says he's not comfortable waiting and keeping an eye on the 10cm mass he found on my left ovary, especially since my CA-125 was slightly elevated and there is family history of OVCA, so he's sending me to a GYN/ONC.  Just the thought of it scares me and I was wondering, does anyone have any suggestions as to what kinds of questions I need to ask?  I want to get as much info as I can.  My gyn thinks the ovary needs to be removed and I suppose that if the gyn/onc agrees I'll do that, but with much trepidation.  Any help or suggestions greatly appreciated.

[hopeshell]

It definitely can be a cyst.  My drs. nurse had a dermoid as large as yours. I am not sure if you have had any tests other than the US but an MRI or CT will give a better idea of the clinical picture.  For example, it will show if you have enlarged nodes or omentum, etc.  However, my scans didn't show anything other than the mass (yes my dr. liked that word too) and yet I did have OVCA.  But still...I am getting back in the swing of things and am hopeful about the future.  Life has no guarantees even if you don't have cancer.  Life will not be over even if it is a malignancy.  For me, it helped to know what to expect if it was malignant.  I began reading a wonderful book, "Ovarian Cancer, Your Guide to Taking Control", by Kristine Conner & Lauren Langford.  After my surgery confirmed malignancy my husband brought it to me in the hospital and I continued to read it.  It helped me feel more knowledgeable about what to ask when speaking with my dr.  Again, best wishes and let us know how it goes.

[juliesmom]

I think that if when he found it he'd have said it feels like you have about a 10cm cyst, instead of using the word "mass".  That word alone is enough to scare just about anyone.  I'm just trying to remain hopeful and tell myself that it's simply a cyst and at the worst it will mean removal of the ovary.  Yet, in the back of my head I know what the worst prognosis could be...I'll keep that in the back of my head for now though.  Thanks for your kind words of hope, I greatly appreciate it!

[hopeshell]

My gyn also told me not to worry and I did anyway.   You wouldn't be human if you weren't concerned.  I doubt there is anyone who didn't feel worried when cancer was mentioned related to them.  Odds are with you that it will be benign.  That would be great!  If it does turn out to be malignant...there is still lots of hope!!!!!  No two cases of OVCA are exactly alike and statistics don't define us.  I have found that I am more grateful for every single day.  The littles things in life don't get to me as much and that has been a great thing.  Of course, I still have my worry days but I try to replace them with positives as much as possible.  Keep us posted on your progress.

[juliesmom]

My gyn told me that I shouldn't be alarmed because a large portion of these things are benign, but he can talk til he's blue in the face and it won't keep me from worrying, at least a little bit.  I know having a cyst rupture is extremely painful, I've had a few to do that, but part of me wishes that this would do that and get it over with.  Then again, as you said, if it is malignant having it rupture may only cause further problems.  Gee, what's a girl to do?  I guess we'll just wait and see, I go in 2 weeks to see the GYN/ONC, on the bright side, if I do have to have surgery I'll get to be off work through the holidays...that hasn't happened for me in years.  I'm trying to find anything I can to be hopeful and happy about, can you tell? ;)

[hopeshell]

I sure wish there were a way they know if it is malignant before surgery....but they don't. I did have a CT and MRI prior to surgery which confirmed the US results that it was complex and suspicious.   My tumor was 6cm. and my gyn/onc. told me I simply had no choice but to have it removed due to the size and fact that it was complex.  I also had a elevated CA-125 at 61 but at the time they didn't give much credit to that because I was premenopausal.  I don't think you have a choice but to have it removed based on what my dr. told me about mine.  I fully understand the fear and worry about not being around for your child.  But, facing this head on gives you the best chance of being here for her.  My dr. really didn't expect mine to be malignant and if it hadn't he was going to leave my ovaries, etc.  The frozen section during surgery proved it was malignant so he took everything.  If I hadn't proceeded right away I would not be staged at 1a.  I also had benign cysts in the past and an operation twenty years ago to remove a ruptured ovarian cyst.  One thing to remember is that even if your mass is benign it can still burst and cause you pain, pressure and trouble since it is a large size.  It is better to handle it now before it is an emergency situation.  I know it is hard.  It is hard to realize there really is nothing you can do to change this situation except to face it.  You can do it!  Best wishes and prayers your way.  

[juliesmom]

My mass is 10cm, about the size of a baseball.  US results couldn't rule out cystic ovarian neplasm, which I'm sure is standard protocol for the radiologist to cover their rears.  I've had cysts in the past, but the largest before this was about 6cm and it shed on it's own.  I guess that's why I'm upset about this, I never really had to deal with the others, they resolved themselves and were small enough that my GYN just made note of them and let it go.  He's being very persistant about this one, insisting that I keep at it until I have a definitive answer as to what this is.  Luckily I've never had to have chemo or anything like that.  As a child I had cholestatoma in my mastoid cavity that destroyed most of the hearing in my left ear.  We were fortunate enough to find an ENT that diagnosed it and removed it about 2 months short of it killing me.  That type of tumor can recur but I'm not well versed enough about it to know if it's the kind that will spread to other parts of the body.  Maybe I should check in to that...

[juliesmom]

That's what scares me, I don't know if this malignant or not.  My GYN is very conservative, yet proactive, and if he seems concerned, and he is, it makes me wary.  He's referred me to the best GYN/ONC around and if he concurs with my GYN then I'll have the surgery.  It's really the only way to find out if this thing is just a hemorragic cyst or there is more to it.  I whined around and cried a lot for the last two weeks, but yesterday I came to the realization that if this thing is cancerous I'm just going to fight it with everything I've got and if it's not I'm going to thank God for sparing me.  I'm 34 and have a 14 year old daughter and I'm not ready to not be active in her life.  Her father and I have already started her on Gardasil, trying to protect her from everything that we can.

[Shari36]

Your story sounds very hopeful. I feel like my ob/gyn is minimizing my 1.6cm complex mass. I am going crazi waiting for my next ultrasound....4 weeks from tomorrow. I was wondering..how big was your mass? Did you have chemo. I am a 2 year thyroid cancer survivor, so this stuff is much more scary now. What do you think?

[hopeshell]

I totally understand how scared you feel.  Last July, I was in your situation and it was dx as ovca stage 1a after surgery.  I am very thankful for the early finding but there were many weeks (including post surgery) when the dr. told me he thought it was more advanced.  I don't know your age but I am 37 and have two small kids.  There probably isn't anything that will take away the nervous feeling when there is a possibility you have cancer.  I think you are right that the ob/gyn is going to want to surgery and as nyc lady said...it is wonderful you are getting a ob/gyn.  When I went to my ob/gyn I asked him what he recommended and I went with it.  I also gained much peace through prayer.   Most masses are benign so there is a great chance your mass will be removed and that will be it.   In the meantime, try to have fun...like go to a movie or something you enjoy and tell yourself that you are going to be able to make it through whatever is needed to get well again.  Best of luck to you for a benign outcome!  

[juliesmom]

I go on Oct 30.  My husband is going with me, though right now I'm not sure just how much help he'll be.  He's a paramedic and with all of the things that he sees every day at work, he's grown a little cold to these things.  I'm sure it's just a defense mechanism to help him keep his distance from all of the pain and suffering that he witnesses on a daily basis.  The good thing is that he's pretty knowledgeable about alot of this stuff.  

Yes, I am nervous, scared to death to be more precise.  I have a feeling that Dr. DePriest is going to say that surgery is what I need and I don't want to go through that again.  I will if I have to though.  Right now I'm just trying to get myself prepared for whatever he has to offer me and hope that it's good news, seems like all I've had for over 2 weeks now is bad news.  I've read a lot of posts on here and have great admiration for those of you who have been battling this for years and feel ashamed of myself for already being fed up with it.  I hope that I can draw some strength from all of you wonderful women.
Shelley

[nyc lady]

I am so glad to hear that your GYN is sending you to the GYN/ONC...remember they are the experts in all gynocological issues, not just cancer....they treat many patients with benign conditions.  

Now,  your maternal grandmother having OvCa, does not truly increase your risk, the risk is increased (and that is only less then a 10 percent increase) if a first line relative, mother, sister, father, has been diagnosised with OvCa, Breast Cancer and in some cases Colon Cancer.

At 10CM there is still a possibility of keeping the ovary....I had a bigger one on my left ovary, and they removed the cyst and I kept the ovary (true I am dealing with alot of problems now - scar tissue and ovarian remnants because of keeping the ovary) for another 3.5 years.  Again, you are seeing the experts, they will tell you what is best for you.

Try to take a deep breath and try really hard not to worry until you know for certain that you have something to worry about.  I would suggest bringing someone with you to the GYN/ONC office, because you will not able to listen or hear what they are saying, if you are anything like me, you are going to be extremely nervous.  

Good luck  -when is your appointment?

Pam