What the Heck do I do now?

I don't have much to offer except sympathy.  I don't know your complete circumstances, but I assume you can't try another doctor for some reason?  I wish I could help, as my heart goes out to all the women who can't get their doctors to take them seriously.  I guess all I can say is don't give up whilst realizing that's probably easy for me to say and hard for you to do.  But, this is your life.  Paula

Paula,
I will take the sympathy LOL
He is my 2nd opinion doctor.  I have cysts on my ovaries, a mass on my uterus and something floating around in there, that they think is ademyosis.  The ultrasound suggested doing an MRI and so did Dr. Goodman.  I am frustrated.  I am calling them today and requesting another ultrasound and I guess go from there.  My last one was in November, so it should show any differences.  Thank you for your support. Very much appreciated.
Colleen

Colleen,  I'm so glad you aren't giving up, and I hope you have no trouble getting another ultrasound or an MRI.  I don't like that word, "think" in your diagnosis.  What are they doing to change "think" to "know"?  I agree 3-4 months is enough time to show any new developments.  Please, let there be NONE unless they're changes for the better.  Paula

Hi Colleen,
I agree with Paula, THINK doesn't equal KNOW.  I'm glad to read you're calling for that ultrasound.  I would push for either a CT or MRI, too.

I'm with ya, Cysta!
Lori

Thank you Lori and Paula,
I have an appt for Monday which is the quickest I have ever been able to get one, so I am taking that as a good sign!  Just that I am meant to be there.  After this one and what is reports, I will be in a better position (I think!) to insist on further testing if "I" think I need it!

Thank you so much!
Colleen

Can you switch drs?   At the very least, get the US and then be VERY and insist follow up right away.  Print out something from a cancer site.  Once you start talking liability drs. seem to put on their listening ears.  I don't know what the problem is for giving you a CT or MRI right now.  You should insist.  So sorry you are having to wait. Let us know how it goes.

Love,  Shelly

Thank  you Shelly for your response.  I will wait to see what this ultrasound shows and go from there.  Lori (Cirella on here) gave me good advice about documenting all my symptoms, when they started, how long I have had them, what have I done about checking them out, etc.which was great.  I had done something similar to that when I first when in to see him. That is one of the reasons I am so frustrated with him. Thanks so much. I will definitely let you all know once I know something!

Colleen

Colleen,
I'm sorry you're so frustrated. Are you near or in a town/city where there are lots of doctors available?   I'm in a town with good facilities and enough docs to choose from.  With some issues, I ask my onc.  About other things, I ask my radiation onc.  Still others I direct to my family physician. Sometimes I even call my surgeon.  If I don't get satisfactory answers from one, I get an appointment with another.  It's not the same as getting second opinions; it's getting questions answered quickly.
I will pray for you and for your upcoming appointment on Monday.  Good luck, dear lady.
Kathy

Oh! AND if I can't get an appointment over the phone, I'll drive to the doctor's office and stand there and wait in front of them until I get one. Humph.
You GO girl!
Kathy

Colleen...the ONLY reason the docs found my cancer (Stage IIIc) is because I said, no more ultra sounds...let's go for the CT...INSIST!!!  

Rhonda

  Colleen, I can feel you frustation, I just wish there were something more that I could do. The other girls have given you excellent advise. Push on and do not give up. If you don't get answers to suit you, then find someone who does. That is your choice. I wish you the best of luck when you do go. Maybe if my mind was a little clearer I could help a little more. But right now the best I can give you is my support.
     Chris

Kathy,
Yes, I live in a good populated area with lots of doctors. I don't want to write my complete story again on here or you will fall asleep, lol, but I have been to the gastro doctor (everything so far ruled out), except I am having another colonoscopy (because of some rectal bleeding), my gp ran lots of tests (abdominal ultrasound - for the gallbladder and all, blood work).  I even got a complete workup from the cardiologist because about 6 months ago I was having chest pains,etc.  That came back completely clear.  So, the only doctor that hasn't done a complete workup is the gynocologist.  I did try to get into a gyn/onc in Orlando but they wouldn't take me without a referral and I can't get my doctor to give me one.  He doesn't think I need it.  

Rhonda,
I didn't know your story and I am sorry to hear that you were diagnosed IIIc, especially after you apparently were given the run-around.  I have read so many stories on here that if you all hadn't insisted on more tests, you would still be sitting there and wondering. I really do not understand these doctors at all. How are you doing now?

Chris,
Thank you so much for your support, especially at this difficult time for you.  I wish I could tell you all how much the support on here has meant to me.  The fact that you all take the time when you are feeling so poorly and going through so much, to help someone who may or may not have cancer, is incredible and it feels my heart up.  I have found it very hard to talk to my family and friends about all this. They all have their ideas what they think it is or what I should do or that it is just menopause, that sometimes I just want to scream.  But I know they mean well.  But on this forum, my questions and fears are addressed like I know what I am talking about, like I know my own body and never ever belittled and that MEANS SO MUCH!  

I will get this ultrasound on Monday and go from there and everyone, you are right! I have to INSIST.  I need to get that through my head and be strong. I appreciate all the support and prayers.

I want you to know that I pray for all of you each and every day and I cannot thank you enough for your friendship and caring.

Colleen

I was told by one of my ovca support group women why doctors don't like to do testing such as scans and laps. She is a nurse and said that doctors get on a preferred status with insurance companies for keeping tests to a minimum. They get benefits for keeping costs down for the major health insurance companies. I hope this is not true. It seems cold-blooded, but it makes sense. Marie

OMG, if that is true, then that is scary.  So many women are suffering and arent being treated because our doctors want to stay on the "Good List".  That is outragous, but it makes awhole lot of sense.  So many being brushed off and misdiagnosed with IBS, (PCOS was my stupid dx mind you I have none of the symptoms),etc.  I have been minimizing reporting my gastro and urinary symptoms because I dont want to get referred to another urologist or Gastro doc, by my new Dr.  ANyway yhis has got to stop, Kimmie is a perfect example of how uneducated and ignorant doctors are when it comes to OVCA.  I read her posts and I have been completely outraged.  The way they treated her was inexcusable!  What if she had just listened to them.  I am so angry.   She has a family, we all have families and we are not being treated how a human being should be.
I will just keep praying.
Love Marge

I am going to put my doctor on the spot at my next appointment and ask her. I'm sure not all docs do it, but I believe the ones that do minimum care and ignore us do it. It makes no sense to me that docs still seem like they aren't up to date on ovca. I'm a CNA with a GED and I've told my docs things they were unaware of.  Marie

Before you get too excited, please see the way my insurance company works the Premium designation.  I've quoted from UHC's website below.  Paragraph 2 explains that the cost efficiency designation isn't considered until they've met the first criteria of quality care.  Also, very importantly, oncologists are ONLY evaluated on quality of care and not on cost efficiency based on claims.  They are the only exception.

"Designation is a two stage process. The first stage is an evaluation of quality based on analysis of 12-36 months of collected claims and/or practice data for UnitedHealthcare members compared to specialty specific national quality standards. Physicians whose claims data demonstrates that they meet or exceed quality criteria, as measured against national quality standards, are designated by a quality star ().

Only physicians who receive a Premium designation for quality of care are further evaluated for the cost efficiency of the care that they provide. Cost efficiency is based on factors such as the use and price of diagnostic testing, prescribed medications, procedures and follow-up care in comparison to other physicians in the same specialty in the same geographic area. In order to make an "apples to apples" comparison in the cost efficiency for doctors, we make an adjustment to account for the types of patients, severity of illness and patients' conditions that the particular doctor treats.

We evaluate specialties that have national quality standards that can be evaluated using claims data. (Note: There is one exception. Oncologists are evaluated against quality criteria only, based on survey responses, and are not evaluated based on claims.) "  Paula

Hello Ladies....look....you guys need to stop being "nice" when it is time to become a "*****" !  I was nice when I first arrived at my gyn's office and stayed nice until he told me I had fibroids, the ovaries were palpable and just fine....to go home and his office would call me in the next few weeks to schedule an ultrasound.  I left the exam room nicely.....went to the front desk and said I wanted an ultrasound TODAY.....they said not possible.....I repeated the fact I wanted one TODAY......she tried to discourage me by saying I would have to wait at least 6 hours....I said "fine".....I went to Barnes and Nobels....got myself some coffee and read .....I returned for the scan.....after the scan the tech said the doc would call me with the results.....I suggested to her he was at the end of the hall.....I would wait in the atrium for him to read the film.  Long story (already long!)....anyway.....he looked at the film and told me I had ovarian cancer....I am glad I didn't go home.....it was caught at IC.....no guarantee it won't come back but hopefully , if it does, it will be caught early again.  That same day, from his desk, the gyn/onc appt was made for the following morning and surgery was the very next morning.  I was "nice" but very insistant.....I refused to bend.  Sometimes there is a fine line that one must step across.....I believe it is imperative we become strong advocates for our health care.....if that means being a "*****" then "*****" it is!  
There are times I get so upset by the way women are being dismissed ....I just don't know what to do.  I shake my head in disbelief....sometimes the tears roll.....all I know is we need to educate eachother, the doctors, society in general.  We need to support eachother in every possible way....on this forum we do a pretty good job, but there are so many of us out there going this alone....we need to find them somehow.  
Colleen....I am so glad someone is finally listening to you...don't let them stop with an ultrasound.....insist on further investigation.  Please do let us know as soon as you know.....Hang in there kid...we are all waiting along side with you.
Peace.
dian

You also need to remember that you are in charge of your own health.  Have a temper tantrum or what ever it takes to get the results you need..Someone on here once said... Prove to me that I don't have Ovarian cancer.. and I still think that holds true...
At stage Iv myself I was lucky to be outside the United States... from first pain to exploratory surgery was 3 weeks.. but when I went to the states in between my regular doctor said oh it must be IBS.. so there. Now with my first reoccurence well I am still glad to be here in Costa Rica...
From the time we are little kids we are taught respect for elders and doctors.. go figure... I always would say with all due respect Dr. so and so.. I want.. I need...
I pray for great results for you and hope that the run around stops... Hugs Ronni

Hi Colleen,
Some very good advice here.  I'd print it all out and read it before you see the doctor next.  Something that stuck out that you said about your doctor.  He told you he didn't think you needed a referral to see a ONC.  I would kindly (diane07 ; )  ) say to him that although you respect his opinion, you do think you need it and it would put your mind at ease to see one.  You may say to him what I wanted to say to my GYN...'do YOU want to be the one to say "I told you so?" or do you want ME to be the one to say "I told you so?"'.  

Why must some doctors act like the supreme "gate keepers" when it comes to your health?  Ugh!

Love,
Lori

Hello again.
I didn't realize that so many of you had responsded to my journal entry. Thank you so much for your advice. If it wasn't for everyone on here I would not be pushing even the little that I have. I probably would be doing nothing.  I always think, ok, the doctor must KNOW what he is doing, he is the doctor after all.  So thank you once again for telling me to be strong and INSIST on further testing.  I took it as a very good sign that I could even get in tomorrow (it never happens that fast) so I will get this ultrasound and go from there. I am pretty sure I will have to insist on further testing.  It is going on 1 year now, so there is no excuse.  and Lori, good comment! I am sure he would rather be the one to say I told you so and certainly I would rather hear that too.

Hugs and prayers to all of you and thank you!  I will post again once I know more.

Colleen

I'll be thinking of you tomorrow.  We'll be doctor visit buddies!  LOL

As Marty says...I am woman hear me ROAR!  Get your ROAR on!
hugs, Lori

Colleen  These ladies have been there , done that, the advice you are getting here is straight talk, it is your body and your deceasion to get the answers you deserve.  doctors are not Gods, they are human,  I read an artical yesterday about how to choose a doctor, very revealing.  Experience is the main criteria, age is important, the artical told me that to choose a doctor after age 50 is risky, unless they are from a large cancer , teaching center.  after 50 most do not persue further study into the changes that are happening.  From age 28-30  is again an experience thing, too fresh. We all know that experience is the best teacher, as you have heard from these ladies, they know because it is their bodies that have been used and misused.  When we were searching for a doctor for Leslee we used this criteria, he was 37, assistant Onocologist at Mayo and had written many published papers on OVCA.  There are many ways to find the best, and that is always the best course of action to take.  I worked with doctors for many years and it was a simple thing to tell the good from the bad. Even a bad doctor can deliver a baby,  I even delivered a few myself, but a bad doctor cannot be trusted with the life and death calls of cancer.  The mind, hands, eyes of experience must be there for you.  Insurance companies can be made to work with you,  but you have to be very proactive and  be strong in the conviction that you know what you want and insist it be your way, not theirs if they don't agree.   Yes Lori   I still sing that song,  and I still know how to ROAR    Marty  

Marty,
You are so right about all of this - one reason why I trust all of you ladies on here is because of your experiences and the fact that each of you has shown yourselves to be so strong!! I am sure that Leslee knows what a wonderful mom she has!  You are always such a wealth of information, Marty, as helpful.  I hadn't gone so far as to think about choosing a doctor (if needed) but you have brought up some excellent reasons for choosing one.  I would hope, if needed, that I could find a good one in my area as we do have the M.D. Anderson cancer center in Orlando.  I am probably lucky in that way.  

It took a lot of courage and strength for me to get out of a terrible marriage and raise 5 boys basically by myself so I just need to find that same strength and use it with my doctor.  

Thank you once again for all your advice and help.  

As you know, everyone is in my daily prayers and that includes you and Leslee.

Colleen
(who will start ROARING)