Can we ever be sure? I need your advice

[Gail8247]

Long story short, I had a cystadencarcinoma removed from my left ovary, along with the ovary and everything else it could have spread to Apr 2.  They said the mass was incapsulated, and a little bigger than a basketball, they removed 9 liters of fluid prior to removing the mass so they could get it out.  I was told the night of surgery that it was malignant but that path was doing further testing to determine what type it was.  After almost a week, I was finally told that it was a mucinous cystadencarcinoma, and I was scheduled to see a gyn/onc.

My recovery has been very slow, mostly due to the incision area around my belly button.  When they took the 62 staples out of the 14" incicsion, it came open where it circles the belly button.  I have had a visiting nurse since surgery to ensure the wound heals.  Its slowly healing - it was 3" x 2" and now is only about 1" x 1/2" - woohoo, I thnk I am about done with the visiting nurse.

I met with the gyn/onc and she explained that this was a rare cancer and that I was very lucky.  (Even though my CA125 was a whopping 12 - the test does not cover this type of cancer. So much for the most common test.)  She said had the mass ruptured and leaked that I would have only had a 25% chance of survival.  She said no chemo or radiation was needed, but I would need a CT and blood tests every 3 months for 2 years and then 6 months for 3 years, which will carry me to the 5 year survival range.

The path staged me at 1a - with clean pelvic washings.  Then my mind started playing games with me.  When they removed the fluid, prior to taking out the mass, did they spill any?  Did path do an adequate job of looking at everything?  With only a 25% chance of survival, how can they be sure?

I am seeing another gyn/onc this coming Tuesday, 5/13.  She has all the reports and will discuss them with me then.  I have asked for the slides to be sent for a second opinion also, but she didn't feel it was needed.

Ok, at what point do we as a patient say, with this type of cancer, shouldn't we be concerned something might have been missed, and take a round of chemo or something to ensure it has been taken care of?  I am looking at it like this way, I might only have one chance to fight this, and I want to be as sure as I can that everything was done now, and not later and a second surgery and treatment be needed later.

I have the utmost respect for all of you on this list, and would like your honest answers as to what you would do in my situation.  I tend to be a worry wart, but this isn't a little thing. I am only 51, and very active with my job and breed specific dog rescue.  If it were you, what would you ask or say to the gyn/onc Tuesday?

Thanks
Gail

[LindaF]

I think our mind does play tricks on us. My mind did when I had a cyst and even after it was removed and still does sometimes, i.e. "what if that mole the derm simply cauterized off was actually a melanoma he missed, etc?"  I think that's further complicated by what silver and gold is saying, i.e. getting answers is sometimes difficult. Don't be afraid to badger for answers and get second opinions, and a third if you are still not satisfied. Consider it normal that your mind is racing. I don't think we can ever be sure and personally I think that sucks rocks.

[silver&gold]

Hi Gail,
I was staged 1a with a rare cancer , I did have chemo after surgery as my cancer is always graded as a 3 . I would definately get a second opinion if you feel at all uneasy about anything and take a list of questions with you , make sure you get all the answers !! Im 3 years out from dx now but because I never get to see the same oncologist at my appointments it took me a long time to get answers about what biopsies were taken during surgery etc and I must say things played on my mind a lot .

Best of luck wwith everything , take care Angie

[msjazz]

I think it it great that this was caught early. I am like you I always like to get a second opinion. Hopefully it will put your mind at ease, and you can move forward. I would make a list of what you want to ask her. After seeing your films and reports, she should be able to give you a good answer.
I would be sure to follow up as they suggested. Let us know what you find out. Try not to worry, and concentrate on healing. Don't lift or overdo for a while,    Best wishes  Donna

[Sunes]

Dear Gail.
After my surgery I was staged at 1C and I also was wondering if they did the proper and careful job.Since I grew two cysts and refused another surgery and second experimental chemo(rare type of cancer) I was allergic to first chemo attempt and was sent home.
Put your mind to rest...they sure did do a good job. Do not torment yourself with that it will drive you crazy. Think like nothing happen but take car of your body.
I had 35 staples on my belly and 3 top ones did get little infected around belly button.After surgery your body is so tired that healing is happening but slower.
Take care of yourself.You are so lucky. Keep this in mind.
Best of luck, Sunes