Here is How My Appointment Went...

[missaboo]

Hi everyone,

I am soooooooooooo confused. I had my first appt. today with the gynecological oncologist. Ok, first of all, when they say that he could arrive at anytime, he really could get there at anytime. My appt. was at 12:30. Did not get out of there until 4p.m. Then, I had to listen to interns and residents cackle and gossip. Yeah. Then I had to go through not one, but 2 recto-vaginal exams. They both hurt! I've had this before and it usually is never gone past uncomfortable. And don't get me started on this man's arrogance... "I've been doing this for over 30 years, blah, blah, blah..."

So, after he does the recto-vag exam, he proceeds to tell me that I do not have cancer. GREAT HUH? BUT! I thought it could only be diagnosed with a biopsy? And he was madder than h#!! at my gynecologist for testing me for CA-125. He said that the test is only to be used to determine how well a patient is responding to chemo, and then he apologized for my doctor, saying he is sorry I have had to worry and wait for an entire month for nothing. He also said that he sees ovarian cancer everyday in his practice, and that I do not have it.

I go back next Friday for an ultrasound to see if this mass has grown, if it is actually a cyst, etc. I am so confused you guys. I want to rejoice and be happy but I am not feeling 100% sure about what he said. And I feel hopeless because I can't get a second opinion. He's the only gyn/onc for miles and I am getting everything paid for through the clinic's charity care.

What do you all think? I know my tumor is only an inch in diameter. I am completely baffled.

[kcd86]

I am sorry you have to pull teeth to get the right test needed. Be politely agressive
Good luck :-)

[missaboo]

I don't know why he wanted another TV sono, other than to say that if this mass has grown then we'd need to think about "surgical intervention". Um, ya think?

I'm considering calling in to see if they could get me an MRI instead. But knowing them they will try to drag this out for as much money as they can.

[kcd86]

I agree that you can't read everything on the internet because there is alot of wrong info being put out there. I assure you the posts you have been recieving are right on the money with what you should be doing.
I am also confused why you need another TV sono??  Your description from your TV sono way back when in the original post was not as if they could not tell what you had.  I would with out a doubt be demanding an MRI
It can get VERY frustrating and exhausting when you have to keep fighting the fight, stay tuff and remember you are your own advocate.

[missaboo]

Hi there,

I just found out that the referral cannot be made until a week from tomorrow. My doctor is out of town and won't be back in til next Tuesday. The other doctor that is in now will not sign the forms because he'd prefer the referring doctor do them. So right now I am sitting tight until then. My DH says I still should go for the u/s on Friday to see what they say about it.

I agree with you about everything. And I'm not even in the medical field. Everyone keeps telling me to quit reading what is on the internet. But if I had not done so, I wouldn't know that the only way to diagnose is through a pathology.

[kcd86]

Oh boy, it must seem like the world is sitting on your shoulders. It can be very paralyzing to have to deal with any one of your current issues, I wish there was an easy answer or statement to ease your anxiety but there is not. You need to keep strong and put your head down and get to the bottom your issue. Take it day by day because if you constanly look at the big picture it will overwhelm you. I hope you are going to have an MRI I don't understand why you Dr's just want to keep telling you that you do not have something without a pathology report. Please push for at the very least an MRI and the best scenario is to have the "soloid Nodule" removed intact and have a pathologist view it.

[missaboo]

I keep coming back to this thread to read your responses of encouragement.

I keep thinking, "Am I blowing this out of proportion? I'm feeling fine. Maybe I should let this go." But then I come here and read this all again and get the push I need to go.

I cried like a baby when he told me that I didn't have cancer. Not because I was happy. I was not. I wasn't happy because I know O.C. cannot be diagnosed by pelvic exam. And I am especially sad now, because my hubby has to travel out of state tomorrow to consult with a surgeon about his pending colectomy. Dysplasia was found in 4 places in his large bowel. Plus he has Ulcerative Colitis (for 11 years now). It seems like all this came upon us at one time. We have 2 kids, one who is 14 and has Autism. Another who is 8. Our kids need their parents.

[chelan3]

First of all, make sure you have copies of any ultrasounds, blood work, etc that has been done already and take it with you to the new doc - just in case it didn't get to him by the time you see him.  I had it happen many times that one doctor wasn't copied or couldn't find the report, but if you have it you can just pull it out!
Second, if there are things you want done - for example a CA-125 or anything else ask them for it.  Go in with a written list of what you'd like to happen and any questions you have.  Come in strong, and knowledgable and respectfull and you'll be surprised that some doctors respond well with that.  That's what I found with my experience - although, some aren't happy that we are knowledgable, they know they can't do only what they want.  Even though I was told not to bother asking for that a frozen section pathology during my surgery as they don't do that routinely - well I didn't ask, I just said I want a frozen section pathology done. And it was done!  To many a person's (and my family dr) surprise!

The odds are in your favor that it's benign, but don't let doctors decide for you what's right.  While they do have your best interests in mind they go by the odds most of the time, but most here know how that's played out for them.

Do what's right for you!
Good luck and let us know how the next appointment goes.  Here's hoping the next gyn/onc doesn't have such an aggressive personality!

Debbie

[missaboo]

Hello everyone,

I have started the process with my regular gyn for getting a referral to the other gyn/onc. My dr.'s nurse said she will not be able to begin the process until tomorrow morning. That's fine. At least I know the ball is going to roll. Thanks everyone for giving me the extra support I needed. I wanted to make sure that I was not blowing this all out of proportion.

Do you all know of anything I should tell the new oncologist that would be helpful in getting him to do what really should be done? I really fear that this next one will be the same way. But I am trying to stay positive.

[OCFB]

I agree with Jane39.  This man is a fool who suffers from a serious God-complex.  Unfortunately, many doctors do, but that doesn't alter the fact that you definitely need to seek a second opinion. There just is no way to diagnose ovarian cancer without pathology.

He is also wrong about using the CA-125 only for monitoring chemo.  It is used routinely in work-ups for ovarian neoplasms.

Next!! Get thee to another gyn/onc as soon as possible.  As Debbie said, "It's your body and your life."

Linda

[Jane39]

That doctor should have his licensed pulled, A-hole.  Who does he think he is?  I would hate to think he acted in that manner because of your financial position.  
Here Here to not letting anyone intimidate you, that is just truly horrible.  I know it's hard on you to go seek another oppinion, but if you gamble and lose, you can't take it back, even though I am sure it's all fine, who wants to take the chance with this beast of a disease.  Good  Luck and I am so sorry that doctor treated you that way.  Jane

[chelan3]

Not to scare you but my dr said the same thing and was wrong!!  I KNEW he couldn't diagnose me without a pathology of the complex cyst I was diagnosed with.  I left his office and went phoned my family dr immediately for another referral!!

I was diagnosed with Serous Borderline LMP stage 1a.  I was very very lucky!  

You are darn right to be concerned he tried to diagnose without pathology.  My advise...get a another gyn-onc NOW!  And to reiterate what kcd86 said Do not let ANY Dr intimate you!!  It's your body and your life!!

Debbie

[missaboo]

Hi there,

Thank you so much for your advice!!!! It is awful to let a doctor make you feel like you don't know anything. I have found another gyn/onc that is an hour farther away than the first. I am going to call tomorrow. This center does not have a charity program like the first place does. Just payment plans. I hope something can be worked out. I really hope the 2nd doctor will take me seriously.

BTW, the doctor I seen today has been hit with 3 malpractice suits. Guess what 2 of them were for? Diagnosis (not otherwise coded). Hmmmm....

[kcd86]

Based on your Oct 4th post"Left ovary exhibits a solid nodule measuring 3 cm in diameter" warrants a COMPLETE evaluation. I don't know for the life of me how your Dr can say to you that this solid mass is not cancer without removing it and sending it to pathology. There is no magic ball here to look into. This mass needs to be removed intact and sent to pathology for a definitive diagnoses. He has no right to give you any attitude for any reason. I see you said there is a logistics issues with gyn/onc in your region> You only have one chance to get this right, go wherevere you have to go to get a qualified gyn/oncologist to correctly diagnose this mass. You need to be your own advocate and be agreesive,. DO NOT LET ANY DR INTIMIDATE YOU!!!!