My GYN/ONC Evaluation

[Nanc257]

I went yesterday for my appt. Felt invisiable. Done the necessary paper work, was weighed and measures, placed in a room and interviewed for personal info, placed in computer. then given a gown, instructed on were to place my butt and waited. Gyn/Onc came in, introduced himself and proceded to tell me from reading my Radioligist report that I had Ovarian cancer. Seemed to already know what kindof tumor it was and he hadn't even saw it. Said it was slow growing and had been there a while, and I had a peroid because it gives off hormones. Then he said he will have to remove everything. Also mentioned lymph glands? Then will have to stage and type and discuss plan of treatment.
He did not have my pap which had already been done, and was clear, nor my blood test, the good old CA-125, which was 85. He did not want to see the DVD I brought of the US scans that had been done.  I was so upset!  
He is ordering a CT scans and blood work and I will be called for appt when they have it set up. He said they will send for my pap results  He gave me no hope and I felt like a hunk of meat visting the butcher.  Why did he just read the Radiolgist report and pick one of his readings which was the worst assumption on it. Why not look at the US scans also and the pap being clear.  Why so sure its a cancer?  He hasn't even seen it. Is it because I am 67 and post-menapausal?  Am I just being in denial here and not trusting his knowledge because I just don't want to beleive him, or do I really have a reason to doubt him?  I just thought he was so hasty.  He did do an exam to feel the tumor. He also told me that this type of ovarian tumor has only a 30% chance of being benign.  I am trying to sort all of this out and accept what I have and move on with my life. I guess I just don't want to beleive it, but then who ever does. Sorry to be such a whinner, but just really having a difficult time dealing with my Gyn/Onc visit. Thank all of you for all the hope and support.

[manneca]

Unfortunately there are no screening tests for ovarian cancer. Nor for uterine, I believe. For ovarian cancer, you just have to hope that you have symptoms before too late and that you have a doctor who will pick up on them and not assume that you are over reacting.

[manneca]

I was diagnosed on March 27 last year with a tumor. I had a complete hysterectomy on March 31. I had been trying for six weeks to get a diagnosis. I finally got someone to listen on March 26. They got it early. I did four rounds of chemo. I'm 62 with no history of cancer in my family except colon cancer at an advanced age. My prayers are with you as you go through this. It is a scary disease. You have gotten good advice so far. I hope that the oncology group has support groups to help you.

[cbuggababy]

I just read your message to Nanc.  I can't believe how ignorant I am!!  I never knew that a pap smear only detected cervical cancer.  I thought it pretty much picked up on anything going on in there.  Do you know what specific tests to ask for as part of an annual check-up?  Are there any other than mamogram and pap?  thank you,  carolyn

[jane65]

Hi Nanc,
You sound so much better now, I felt sure that when you have the test and surgery dates in place, you'd start feeling more in control.

My GN/ONC surgeon had me get chest, abdominal and pelvic scans before my surgery so he could have an idea of what we'd be dealing with. I'm sure yours will do the same.

We can give you advice about what to ask him as it gets closer. Please be sure to take someone with you, there's so much info. that you really need another person to help you remember. He'll be explaining the surgery and hospital stay to you, at that time.
Be sure to ask him for a recommendation of an oncologist for your treatment. Lots of the ladies use a GYN Oncologists, mine is a Medical Oncologist.
Get copies of every test you have, start a folder.

Thanks for your good wishes, we'll be with you every step of the way.
Jane

[Nanc257]

To all my angels, I am hanging in there inspite of my racing mind and being an idiot.

March the 6th I am scheluded for consultation at his office and I am to have any questions ready that I may need to know. I don't know what to ask since I have not yet had the surgery and know little about the tumor. The surgery will be the 17th of March at 12:45 pm. When they called it was so final. My stomach did flip flops.  I have not had CT scan as of yet and am still waiting for their call.

Dear Jane you have beat it once and you will beat it again, I know you will. My heart and prayers are reaching out to all. I am so thankful we have each other.

[JC145]

I totally agree with Jane.  Tomorrow I get a blood test to see if the chemo is working .. then a PET/CT in a couple weeks to make sure it is working.  

Waiting is horrible .. but more than likely whatever is there has been there for a while.  Don't panic .. think positive .. you are on the right road.

Judy

[jane65]

Dear Nanc,
I understand how frightened you are, and that you want everything to move smoothly and quickly, we all want that when we're waiting to get a diagnosis, and treatment plan in place.. Unfortunately we have to wait for doctor's appointments, and tests to be scheduled, and that's hard when your mind is racing as yours is.
Tomorrow I'm having my CT scans to see how the chemo did. Hopefully I can breathe when I get the results in a few days. I know that I'll be on "pins and needles" till I get the results, so I empathize with you.

You've seen the GYN/ONC and that's a very important first step, I'm sure you're calling his office about getting the CT scan appointment, I hope it's scheduled by the end of today.

Of course you'll have treatment,don't even think about letting this monster win! If it is OVCA, you'll have surgery and chemo, and then you'll feel in charge of this monster that has invaded your body and you'll be pro active in getting it out!

You have a family who need you, and care about you, and will support you, you know that, We're also your "new family" and we're here to support you as well.
Hang in there, one step at a time, and please breathe!
Keep us updated,.... Jane

[ladyjogger31]

You have gotten wonderful advise from every lady on this board. I want you to know that my prayers are with you.Your a warrior just like the rest of us.
Hugs and Prayers

[Nanc257]

I am still here.  Waiting for my appointment for my CT scan.  All I can think about is the ugly alien inside me spreading its seeds, like a sneeze.  I have been at this since 1-5-09.
I could not get into the GYN until the 14th of Jan. Then the US done on the 26th of Jan.
Gyn/Onc set up for the 20th of February and now waiting for that CT scan appointment.
To me, It is no wonder that this disease can get such a foot hold on ones life. I have been very depressed and have considered refusing treatment. I feel my care so far has been unimportant so why should I think that it will be any different in the long run.  My so called friends act like I have something catching and have began to disapear, which was hard to beleive.  They have made me feel like I'm not even me.  What is wrong with people. I guess it is something they don't want to think about. Thank you all for being at my side.

[jane65]

Once again,  Marie and Judy have summed it up so well, (such smart ladies we have here!)
As I said, I'm in your age group and I completely understand, and empathize with your fear and depression.
This is horrible for you, and your family to suddenly have to deal with OVCA. I know it has taken over your life, as it has taken over my life and my husband's. It's an education you never wanted to have.
I hope you have a support group, family and/or friends, if you do, you're lucky we have little family and no friends in NJ.. Shortly before I was diagnosed, we moved back here from Fla. because the hurricanes were too scary. Ha! Nothing compared to this damn cancer!

Remember, we are a strong support group here, who have been through what you're going through now, and what you will be experiencing, rely on us as we rely on each other.
My surgery, 2 years ago is a distant memory, one remaining ovary and lymph nodes removed, and the staging after path report came back was 4B. Another distant memory is getting the chest port installed, no big deal. My first chemo drugs, carbo/taxol was not easy, but I kept in mind that it was killing any cancer the surgery didn't get.
Don't get frightened, but I've relapsed on a few lymph nodes, and I've been on a new chemo since the summer. That's the nature of this disease, it's chronic and relapses and repeat treatments are most common. This chemo, Topotecan has been easier to go through than the first. I'll repeat the CT scans next month, and if they're clear, we can take a break from chemo.
Please talk to us Nanc, we're here to help and any questions you have, we've all had in the beginning.
I'm hoping we'll hear from you soon, remember it's one step at a time, and get copies of all blood tests, scans, and any other tests you have. Start a folder.
Take someone with you to all doctor's appointments. It's hard to remember all the info. when you're facing something as difficult as this.
....Jane

[JC145]

I agree with all of the above.  Radiologists are better trained to look at the scans.  Have you looked at it ... it is a bunch of "stuff".  I have copies of mine as well and I'm lucky to tell where my rib cage is .. let alone small tumors or spots.  A radiologist is trained to do just that.

Take it one step at a time.  Get your scans, blood tests, surgery.

We are all here to support you .. wherever this goes.

God Bless You, Judy

[marie3B]

You have found the right place for support.  They will sample several lymph nodes, even if they look ok and biopsy them as part of the staging.  I was on chemo for about 4 months.  I had anti-nausea drugs that worked well.  I had 18 total treatments and am still here to tell about it.  No one can say how long any of us have to live.  You will do well with your treatment and we are here to help you through it.  The surgery was so much easier than I expected it to be.  I hope all goes well for you and you heal fast. Remember that if a weakling like me can get through it you can for sure!  Marie

[Nanc257]

Thank you so much. I have been so depressed!  I must have a cystadenocarcinoma as listed on the report.  The other was a cyst adenoma. It has multiple internal septations and is large.  my next step is a CT scan.  What do they do to your lymph glands? I am worried it has spread everywhere. How long on chemo and are you very sick? Does one have to return in 6 months for another surgery for him to check for any more tumors.?
How long will I live do you think?  I have no support and am so overwhelmed with all of this.

[jane65]

Hi Nanc,
Marie is "spot on", as my British oncologist says and she covered everything. I've never had a specialist who wanted to see the DVD, they would read the reports from the radiologists.
My surgeon was excellent in the operating room, but he didn't have much of a bedside manner, just as long as his hands were skilled. I understand your feelings, this must be the most frightening and confusing time in your life, and I sympathize with you.
My nightmare started with a routine GYN exam, and my doctor doing an internal and saying "what the hell is this", it was my 12cm tumor. CA125,ultrasound, CT scan, and then in one week I had surgery, a month later, a port installed, and then chemo. It was whirlwind.
I'm 65 and this was not our plan for our later years, but this is what  is.
Just take it one step at a time, that's all you can do,you're not whining, you'e reacting to a horrible situation.
Let us know what the next step is for you.... Jane

[marie3B]

I am sorry that his bedside manner was poor.  I do agree with his approach though.  It must come out to be biopsied to know for sure what type of tumor it is and if it is cancer.  He must have an opinion on the type of tumor based on what he has seen on the report and by what he knows from experience.  The CA125 is elevated which also goes toward his approach of being careful.  The pap smear results have no place in the diagnosis of ovca.  Those are to detect cervical changes that may indicate cervical cancer. You are definitely doing the right thing by having a gyn/onc in charge.  I more than likely would not have survived my surgery without the skills of my gyn/onc.  I know all of this is scary and overwhelming.  I wish you the best and sure hope you keep us informed.  I will be thinking of you. Marie