Brand new to all of this and reaching out for support

Hello,

I wanted to first thank you ahead of time for allowing me to be part of this group and giving me the chance to reach out to you.

On 10/8/09 I was rushed to the ER in tremendous pain for what I thought was kidney stones. During my catscan it was determined that my uterous was enlarged. I was told that I had cancer and would need to be operated on, immediately.

When I woke up from surgery, a Dr. said "It's not good, we pulled out a grapefruit size malignacy, and removed your left overy and fallopean tube". I asked what my survival rate was and he quickly said "we don't know yet". and left me alone to absorb this information alone in the recovery room.

Since then I was released from the hospitial in 3 days and ended up having seizures because I simply lost too much blood in surgery. So I was re-admitted for 3 more days.

I immediately retained all of my records from the hospitial and learned that when they removed the tumor, it had burst.

I still havent received a path report yet as my frozen sample, lymph nodes and other samples have been sent to a forth lab because the Dr. is telling me that it is so rare than no one can identify the cancer in order to start treatment.

Because I have all my hospitial records, the only thing as far as my health that was out of place is

1) My blood sugars (but that's because I am a type 1 diabetic)

and

2) My CA-125 was 28 (Going by 2nd generation CA-125 where reference range is 0-21)

This has me concerned as well as an emotional wreck. It has now been 3 weeks since my surgery.

Is any of this normal?

How can the Dr. say that it is malignant if no one can identify it?

Is it possible that his diagnoses was based purely on the elevated CA-125, that may have been elevated from the tumor being benign as well?

Is 3 weeks and counting acceptable to have to wait for path results?

One last thing, I do not have any of the risk factors for this disease, I am 35, have had 2 children, have not started menopause. My periods have been spot on (28 day cycles) since I was a teenager.

I appoligize for my little rant but if anyone could offer me any insight, I would be eternally grateful. Just confused and frustrated.

I am amazed with your strength in this situation.  Its seems everything happened soooo fast.  You went to the ER for what you thought was one thing and ended up with a much more serious situation on your hands.  I applaud you for being seemingly calm about being in such a whirlwind of a situation with little to no communication.  I suggest being very persistent with phone calls and surprise visits to speak with the doctor and consistently demanding some/any morsel of information be given you about what's going on with this situation.  You've first hand experienced how life can change sooooo quickly.  It will be sooo comforting when Revelation21:4 is realized when it promises that God will wipe out every tear from their eyes and mourning nor outcry nor PAIN will be anymore they will all be a thing of the past. Please keep your head up and stay strong and I hope that you will get some accurate information soon.  Pull your kids closer and pray more often.  Best wishes to you.

Ask the doc for a referal to an oncologist asap. Your regular doc does not have the epertise to deal with this if he is saying not sure. If you had a tumor that burst you need more testing to ensure weather you you should be seeing an oncologist. Make them give you an appointment or make one yourself. Do not take no for an answer. It is your life not theirs you have to take charge and stay in charge. If they tell you it's too soon make sure you point out that it is not a request it is a demand. Never let the doc be the only one to worry about how you are doing!!!!! Get yourself a doc buddy right now to go to all appointments as sometimes it is difficult for you to process everything being said. Great job on getting medical records but keep it up request copies of all labs and reports to be sent to you at home, sometimes you read them before doc. And you can stay on top of situation if you know right away.

                                              Milly

Thank you both for your responses. I don't know how calm I have been but I have certainly be trying my best. Thank you so much for your prayers and support. As far as the Dr. is concerned. The Dr. who removed the tumor is a GYN oncologist. I'm sorry I forgot to say that before. The Dr. who I have been dealing with is the same Dr. who removed the tumor. I'm still waiting for pathology results and have my next Dr. appointmet (with the GYN Oncologist) on Tuesday.  I'm just so nervous because during my last visit he told me that 2 labs so far can not identify the cancer (that the cells were not forming a pattarn), so that he sent my slides to Harvard and John Hopkins. I'm just hoping that someone can identify this so that I can start my fight. Thanks again ladies, I appriciate any and all responses here as I feel very alone in this.

Gina, today is Tuesday.  Just wanting you to know I'm praying for you. I remember this all tooo  well.  Pam

As it is wednesday and we have not had a post its either really good or crappy bad i'm sending up a prayer for you right now. Please let us know you r ok.      Milly

Gina,

I also went for suregery on Oct. 30, had hyst and found cancer in ov and ut. I was told i did need chemo, and I am very scared and I am 49 yr old. I see the onc on wed for the stage and treatment which she said will be for 6 months.

I cry alot and I'm very scared, I guess I can just relate

Good luck, Im praying for you.