Is it premature to see a gyn-onc?

[Nerdymom]

I had a pelvic ultrasound in an ER two days ago and the report came back concerning.  (I went in for severe right lower abdominal pain).

"4.4 cm complex left ovarian cyst with vascular flow within a solid intramural mass, concerning for cystic ovarian neoplasm, recommend follow-up.  Adjacent hemorrhagic ovarian cyst, 2.8 cm, small pelvic free fluid.  Uterus within normal limits.  Echogenic right hepatic mass 3.4 cm, possibly hemangioma but consider follow-up MRI or CT".

Saw my gynecologist the next day.  He did an ultrasound and saw the same cyst and found one on the right ovary too.  His equipment didn't seem nearly as good.  Ordered a CA-125 test and said we'll recheck in 2 weeks and if its still there, he can take it out.

Is it too early at this point to just go see a gyn-onc?  Am I overreacting?  After reading all these boards, I know that I will have a gyn-onc take it out if it needs to come out and not let my regular gyn do it.  Just wondering if I'm jumping the gun with getting an appointment with one now.

Thx for your help.

[Nerdymom]

Thanks Hopeshell and AuntPaula... I'm just laying low right now waiting for my appointment next week with the ob-gyn again.  I called and requested a gyn-onc referral and wasn't successful.  They told me to wait to see my doc again and decide from there.  I'm going to push for one at that point.  Second opinions can never hurt. :)  I'll update end of next week.  Thx for all your wonderful advice.

[AuntPaula]

I don't think you are overreacting and think you should see a gyc onc. If any surgery is necessary a gyc onc will need to do it so you might as well consult with one now. Hoping for the best.

[hopeshell]

I am so glad to hear about your CA125 levels.  Just keep in mind that doesn't always mean all is ok.  Odds are still with you though.  

Here's my opinion:  If you really like your gyn,  I would go ahead and wait to see the gyn and still push for a consult with the gyn/onc.  You need to really keep mentioning the family history and how you want complete staging if it is a malignancy and not have to have a second surgery.  Even if your gyn does the surgery, the gyn/onc should be available to step in if frozen section shows cancer.  You should get a consult with the gyn/onc before your surgery.  Push for this. Print data off the women's cancer network to support your claim.  My personal opinion is that complex masses (especially with familiy history of ovca) should be handled by a gyn/onc.  Why take the risk!  

But, if you don't feel totally in sync with your gyn there is no harm in going to see another gyn for ths second opinion.   You need to be in sync with your dr.  I think your dr. should already be giving you the option to have it removed since it is complex and close to the limits.  He could already have the ball rolling as far as surgery scheduling, etc. given your family history.  But, it really is only a decision you make based on how you feel about this dr.  I don't think the nine day wait is going to make a difference in your staging etc. should it be cancer.

The thing about ovca is that most is discovered at either stage 3 or 4.  I don't think the drs. are used to seeing is in the early stages and because most turn out benign, they assume it is benign.  You really have to trust your gut.  Try not to worry. I think yours is still in the early stages even if it is cancer but it is still more likely a benign mass.  Just don't second guess your judgement about pushing for what you want.  It is your body and your life!   Hang in there!  Here is a the link that may help you with info to give to your gyn when pushing for the gyn/onc referral:

http://www.stvincent.org/ourservices/oncology/locations/gyn/default.htm

[Nerdymom]

Hopeshell, thank you for sharing your story.  What an ordeal for you... I'm glad you are doing well :)

My 125 levels came back low at 12.  That is reassuring.  Now I am trying to figure out whether I should wait 9 days from now for my appointment with my regular gynecologist when he'll recheck to see if the mass is there and ask for a referral then or ask for a referral now.  For insurance purposes, I don't need a referral for a 2nd opinion with a specialist.  I have a PPO.  However, it seems the specialist I want to see won't see me without a referral form my gyn or pcp.  My inclination is to wait until next week and get a referral from my gyn.  My mom, who had breast cancer, is pushing for me to go see the specialist now.

So many decisions :(
Thank you for your thoughts and suggestions :)

[hopeshell]

Hi again,

I saw my gyn/onc after just the MRI and CA125.  My regular gyn had felt the mass on examination and did a transvaginal ultrasound before the MRI.  The hardest thing about getting into the gyn/onc was not the doctors willingness but the fact that I have an HMO and the group didn't have a gyn/onc.  I had to get approval from the HMO group to go to a gyn/onc at a major cancer center.  My gyn and the gyn/onc were on board and wanted to see me right away.  The insurance gave me trouble getting approval very fast but I pushed and pleaded and got it approved 30 minutes before my gyn/onc appt.  I had made up my mind that I was going to pay the consult ($450) on a credit card if the insurance didn't come through.  It was really frustrating!!!!  Thankfully, I found a guy at the HMO group who really helped push it through quickly.  I had already been told five times it was IMPOSSIBLE to get it approved that quickly but persistence paid off.

Before my surgery, the gyn/onc didn't need any other scans except a chest xray and did give me an endometrial biopsy because he wanted to sure there wasn't any cancer in there before going in.   That was negative.  One thing that helped was that he could manually feel the mass during my pelvic exam.  He didn't want me to wait because it was 6cm and complex.   But, even the gyn/onc kept saying it was probably going to be benign but noted it "could" be cancer.  He felt good about it because the imaging didn't show enlarged nodes or disease in other areas.   The plan was to only remove that ovary and leave everything else if he didn't find cancer but if there was cancer to have a full hysterectomy and staging.

Yes, mine was malignant.   My surgery took much longer than expected.  I went into surgery not knowing what would happen.  My gyn/onc came out to my hubby in the middle of my surgery and took him into a private room.  He told him they thought I could be stage 3.  My pathology was up in the air for quite awhile because I did have what looked to be metastasis.  I woke up and asked immediately if it was malignant and the nurse said she didn't know but that I had a full hysterectomy.  Immediately, I knew it was cancer because that was the only reason he was going to take it all out.  

To make a very long story short, I was staged 1a which I originally didn't even think was possible because my gyn/onc said the lowest stage I could be was 1c.  For a month, I prepared my mind that I needed chemo, but, he didn't give me chemo because of my negative nodes and washings.  He also took my omentum and cervix and they were negative.  The thing with ovca is that they just can't know for sure until the pathology (especially if you are in an early stage).  

I am doing well now.  I have had few scares of recurrence.  I go into the cancer center every three months for a check by my gyn/onc.  I have had several follow up scans but thankfully, I am still cancer free.  I didn't take hormones in order to try to avoid the estrogen feeding my tumors and the whole menopause thing was stinky because I lost the hormones so suddenly.  If you end up in that situation, I would be happy to share some things with you that may help.  I am getting better day by day.  

I am so happy to be here.  I feel truly blessed.  I pray every day for all of these ladies on this board and I do believe there will be a cure in the future!  In the two years since my dx, my son has gone to and graduated from kindergarten and my daughter has pierced her ears.  These are milestones I cherish even more now.  

Try to hang in there.  When I first heard the news, I was sure it was the end for me.  I no longer look at it that way.  I think I am finding that all any of us can do it just grab each day and make it the best we can.   I will be praying for you and please let me know how it goes.   I think you should insist on seeing a gyn/onc because of your family history.  Just bring up the fact that you would want complete staging in one surgery if it is malignant and about your family history.  I think that will push your gyn to get the necessary referrals.  If not, call on your own and fight the insurance later to pay for the consult.  Just my two cents.  Take care :)

[Nerdymom]

Hopeshell, thank you so much for your reply.   It is very helpful.  Can you tell me a little bit about your first visit with the gyn/onc?  Did you go see him after just 1 scan at your reg ob-gyn and your elevated 125 levels?  Did the gyn-onc redo the ultrasound?  Order any other imaging?  Did he follow it for a bit or just remove it?

I am like you... just turned 38 and have 2 little kids.   My mom had breast cancer in her 40s and her mom had colon and ovarian cancer... so the family history is there for sure.  Which is why this whole thing is giving me that 'gut feeling' as well.

By the way, did yours turn out to be malignant?  How are you doing?

[hopeshell]

Hi there,  
In my opinion, I think all complex masses that need to be removed warrant a gyn/onc consult.  The bottom line is it has the chance to be malignant if it is complex.  If it were a malignancy, having your staging complete, and a surgeon who has seen many cancers and has the skill to not spread it is very important.  That said, the odds are with you that it is not malignant.  I know it is scary and I remember how hard it was to wait for my surgery.  I had a 6cm mass and was 37, with two small kids and no family history when I was dx.  Everyone (including my gyn) told me not to worry because the odds were with me that is wasn't ovca.  My gyn felt the mass at my annual visit and before that I had never worried about ovca and didn't know much about it.  I had a gut feeling that it was something more than a benign condition and went to great lengths to make sure I did get a gyn/onc after reading info on the net.   My CA125 was elevated and that caused my gyn to refer me to one.  But, I brought up the subject of wanting a gyn/onc with him even before my CA-125 results came back.  He sort of brushed it off and thought he could handle the surgery until after he got my CA125 results.  But, the CA-125 isn't always reliable so even if yours isn't elevated, that doesn't mean you don't need a gyn/onc.  At the time, I wondered if I was overreacting too, but I am so thankful that I did have a gyn/onc do my surgery.   Basically, it "can" be malignant if it is complex and why risk an inadequate surgery even if the odds are in your favor...it is still a risk.

The general standard where they determine you have to remove a mass and not "wait and recheck" is if it is over 5cm and complex, but 4.4cm isn't far from that.  With ovarian cancer, the sooner it is removed, the better.  From your scan results, the hemorrhagic cyst on the right side and free fluid are normal if you are premenopausal.  The liver mass seems a little large to me so I would want follow up on that.  I have some liver cysts but nothing over about one and a half centimeters.  Most people have some liver cysts. Well, I hope it all turns out to benign.  Don't worry about someone thinking you are overreacting....you deserve every safeguard!  You get one life.  Please keep us posted on how your are doing and take care.