cancelling surgery getting second opinion

[PatiC]

Thank you to butterfly, ChrisP and Dian for your responses to my first post today. After reading them along with reading most posts has made me decide to cancel the laparoscopic surgery on Wednesday. I am hoping that the little voice in my head is just paranoia on my part.  I am not comfortable with my gyn doing the surgery, a gyn/onc is the one to do it.  I wish I would have gone with my instincts a few weeks ago. The ironic thing is that I am a RN on an Oncology unit. I didn't want to seem over-zealous with my situation so I played the "good patient" and went along with my gyn's opinion.

Even though I want this thing OUT, I am going to wait until I feel comfortable with a gyn/onc doing it.

Are there many others who have had negative results preoperatively, then come to find out their mass was malignant?  

Any advice, comments, personal stories are GREATLY appreciated!

[ChrisP2236]

I'm so glad you're seeing a gyn/onc.  That's really who you want doing this type of surgery when you have such a strong gut feeling.

I had a CA 125 test before my surgery because my gyn suspected something was wrong based on the shape of the cells in the cysts.  She consulted with a gyn/onc and he said do the CA 125.  It came back 6 so he said to wait 3 months.  I didn't want to wait because I was very uncomfortable so my gyn removed the ovary and said everything looked good. Fortunately for me, she "bagged" the ovary as a precaution to prevent spillage.  At my follow-up visit two weeks later, I heard her grab my chart off the door and then I heard her kind of gasp, and she didn't come into the room for about 10 minutes - she went back to her office to compose herself and double check typical follow-up for granulosa cell tumor. In hindsight, I should have gone to another gyn/onc for a second opinion when the first one wanted to wait as my gyns suspicion should have been a red flag for me, but I guess I was also in denial.  Live and learn...I use the experience to try and encourage other women to avoid my mistake.  Best wishes and let us know how it goes.  Chris P

[manneca]

It just doesn't pay to "be a good patient." That's a hard lesson for lots of women to learn. I wish I had a gyn/onc for my surgery. I had a general surgeon and he did a pretty good job, staging etc. But he left my lymph nodes and now I find that those are generally taken. I was panicky when someone finally listened to me that there was something wrong with me (7.5 pound ovarian tumor 12x10 inches which no one could find, but that's another story), that I opted for immediate surgery with a general surgeon (what you're telling me couldn't possibly be true) who had just done my thyroid.

There had been some hope that mine would be borderline, but it was stage 1, grade 2, thankfully for that. I was in denial for two weeks until I got the actual pathology. I kept thinking I can't have cancer. It just isn't possible. I was even in denial for a while after that.

You are doing the right thing. Blessings on your journey.

[butterflytc]

I think you made the right decision for you. Good luck, and I hope you find a gyn/onc you like and work well together with. Best of luck. Keep me posted
butterflytc

[Sunes]

I was told my cyst was just simple cyst and just because it grew to about 11 cm or so laparoscopic surgery was scheduled.And I was told that in my age (46 then) they are normal simple cysts. I could feel the lump beside my bladder.My gut feeling was telling me something is not right, but I had to trust my doctor.Wow I did and he was wrong.
When I woke up after surgery I knew something was up and the pain was terrible.. The doctor came to see me and  said  that it was cancer and he had to  perform total hysterectomy. I wanted to kick him in the teeth for that... good thing I could not lift my leg.LOL. TCC of the Ovary stage 1C.when I heard cancer I was devastated.
I feel that he should have send me for more scans and tests to be certain what he would be dealing with.Now I know what to ask for ..  Best of everything to you.
Sunes.

[shinyblackpants]

Your story is very similar to mine....

backstory (and I will try to make it concise because it was so involved)-
I had an IUD placed in August "07.  An TV ultrasound to verify placement showed I had a fibroid, my gyn said not to worry, 40% of women have them with no complications.  I went back for checkup with my NP and voiced concern because I knew nothing about fibroids.  To rest my mind, my NP set me up with a full pelvic US.  The radiologist caught the abnormality and located it in my right ovary and said that my gyn would get in touch with me that day.  I was told it looked like a classic dermoid and I was scheduled to have my cyst removed laparoscopically in November.  Initially, I had reservations as well, because it was 3cm, never had pain and obviously found by chance.   I canceled my surgery 4 days before.  I NEEDED to get a second opinion and see what another gyn would say.  I was told even by her that my gyn was the best at this surgery, dx, etc.  Stick with him. (and honestly I have no regrets that I did... but,)
So, scheduled it for 1/31 this year.  Finally came to terms with the scariness of surgery and had my "dermoid" removed.  I was awakened from sedation by my gyn telling me that it looked like a fibrous tumor and that it had to be sent to another lab for a second opinion (the hospitals machine for slicing through tumor samples was broken that day.)  Turns out it was a borderline tumor of low malignant potential (maybe not malignant per se, but close enough).  NOT what I was expecting to hear.   To think that I ALMOST wrote it off to worry about later- like maybe when it would grow and get painful. (I was one of those ladies that thought, if it doesn't hurt then why have surgery?!) It has changed me forever, and I may just be the luckiest person in the world, but I'm still glad I went through with it and questioned EVERYTHING all along the way...  certainly woke me up to a whole new mindset!

I cannot stress enough how important a second opinion is.   Even if they agree, it is better to hear it from 2 doctors than one.   Although I did have my gyn do the surgery, it may not have made a difference if a gyn/onc did it, but everyone is different.   I didn't have the routine ovarian tumor removal (washings, appendectomy, samples, whatever else) because of the faulty lab equipment not catching it while I was still on the table.  So now I am on pins and needles waiting for my first "real" appointment with the oncologist and I somewhat wish she did the surgery after all...  
So I say, go with your gut.  You know what is best for you!

Good luck and I will be watching for your updates!

[silver&gold]

Hi,
I  was told before my surgery that all was expected to be benign, after surgery I was told all looked benign . Three weeks later while sitting at home recovering from a my hysterectomy I recieved a phone call telling me that OVCA was seen in pathology and I would now need to have 6 cycles of chemotherapy.
You can never be too careful , listen to the voice in you,re head and have a gyn/onc do the surgery.
Good luck with everything , Best wishes Angie