Seeing my hometown gyn/onc Wed

Hissy_Fitz
Hissy_Fitz Member Posts: 1,834
I am worried about the "small amount of ascites" that showed up on my CT scan last week, so I am going to ask my regular gyn/onc if he will send me next door to the hospital and get them to take a sample of the fluid and test it for malignancy. I'm betting he won't do it, but I'm going to ask.

My doctor came very highly recommended but I have been unhappy since the get-go with his approach, which is not as aggressive and pro-active as I want. Our first issue was the IP chemo, which he refused to give me.

My husband says it's the "doctors' ego" thing, that they don't like patients (or even other doctors) trying to "call the shots." That could very well be true. When I was accepted into the vaccine trial in NYC, my local guy asked me if I wanted to continue seeing him or not. I was shocked! I said, "Of course! This has nothing to do with monitoring my status or deciding on more treatment down the road, if I need it." I'm wondering now if he was hoping I would opt out, as his patient. I found the trial on my own and only told him about it after I had applied. The gorgeous, semi-famous Dr S at MSKCC has been diligent about making sure all the labs, scans, etc were faxed over ASAP to to both my PCP and my surgeon.

What do you guys think? Dr S says I am an extraordinary patient, and he means that in a good way, because I am so pro-active. He thinks more women would live longer if they educated themselves more, advocated for themselves more, etc. (He also thinks all gyn/onc doctors should be better informed regarding clinical trials, current studies, etc). I think my local doctor may just think I am a PITA.

I maintain that no one is more invested in this whole Cancer thing than I am, because it's MY cancer, MY life. And let's face it, the odds don't look good. Shouldn't it be okay for me to make some noise, express my (admittedly) uneducated opinion? Or am I supposed to just sit back and trust that I was sent to the best doctor around, and quietly, meekly, do whatever he says is "best?"

Should I start shopping for a new hometown doctor? How does one do that, anyway? I always said my Plan B was MD Anderson, if I had a recurrence. It's about 600 miles away, but I have a cousin who lives near Houston, and I fly for free, so it wouldn't be prohibitively expensive. Or I could ask Dr S if he would treat me, but I think he is pretty much limiting himself to research and clinical trials.

I'm borrowing trouble, I know. Or I'm being pro-active and "extraordinary." Either way, I'd like to hear what you guys have to say on the subject.

Carlene

Comments

  • lindaprocopio
    lindaprocopio Member Posts: 1,980 Member
    I say you work your considerable charm on your current onc.
    I am also very out-with-it when it comes to expressing my ideas for treatment options, and have prevailed on some things my oncologist had serious doubts about. I try to share my ideas in a way that allows him to retain his status as the expert in the room, because, of course, he is. I thank him regularly and let him know I appreciate the delicate balance my cancer journey has been these past 3 years and the high quality of life I've enjoyed throughout, for which I give him sincere & justified credit. And in with all of that, I press for what I want.

    I see you as a woman with considerable wiles. Maybe you are adverse to feminine manipulation & I'd respect that. I just think you'd be good at it. (That's meant as a compliment!) Guess my suggestion comes from my sales background; I'm very good at getting my way and leaving a person with his dignity so I can come back again with my next great idea! HA!
  • LaundryQueen
    LaundryQueen Member Posts: 676
    I would see your hometown
    I would see your hometown gyn/onc first & if he doesn't hear you, find someone else local. If you don't have a lot of ascites, you risk perforating the bowel if you try to get a sample of the fluid. I think an ultrasound to monitor the fluid is reasonable--unless you're in an HMO. HMO insurance plans want to kept down the expense.

    Unfortunately, there is no justification to do any additional testing in someone who has such a good CA-125 as you do.
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834

    I would see your hometown
    I would see your hometown gyn/onc first & if he doesn't hear you, find someone else local. If you don't have a lot of ascites, you risk perforating the bowel if you try to get a sample of the fluid. I think an ultrasound to monitor the fluid is reasonable--unless you're in an HMO. HMO insurance plans want to kept down the expense.

    Unfortunately, there is no justification to do any additional testing in someone who has such a good CA-125 as you do.

    No HMO. My husband, bless
    No HMO. My husband, bless him, has always been a big believer in insurance, so we have primary and secondary coverage.

    How does one shop for a new specialist? This is the one my PCP sent me to, so???

    Carlene
  • antcat
    antcat Member Posts: 270
    I think it's great that you're so active in your care
    I admire you Carlene, that you are so involved in your care. I, myself, have been involved with my care and I truly believe that some doctors do not like this. My primary care and gyn/onc are not like this but my medical oncologist, I believe, in my heart did not like that I was so active. I have changed oncologists. After all, we are the ones that chemo (poison) is going into our bodies, so why shouldn't we have some sort of a say. I am sorry that your gyn/onc feels that way. I say, keep doing what you're doing, because I am. In the beginning with my cancer, I never said anything and I learned to ask for copies of my tests, scans, etc.
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834

    I say you work your considerable charm on your current onc.
    I am also very out-with-it when it comes to expressing my ideas for treatment options, and have prevailed on some things my oncologist had serious doubts about. I try to share my ideas in a way that allows him to retain his status as the expert in the room, because, of course, he is. I thank him regularly and let him know I appreciate the delicate balance my cancer journey has been these past 3 years and the high quality of life I've enjoyed throughout, for which I give him sincere & justified credit. And in with all of that, I press for what I want.

    I see you as a woman with considerable wiles. Maybe you are adverse to feminine manipulation & I'd respect that. I just think you'd be good at it. (That's meant as a compliment!) Guess my suggestion comes from my sales background; I'm very good at getting my way and leaving a person with his dignity so I can come back again with my next great idea! HA!

    Linda....Yuk. I am so BAD
    Linda....Yuk. I am so BAD at that "fragile little flower" thing. And it goes so against my nature, I would probably vomit before I got out of his office.

    I say grab him by his testicles and squeeze until he does what I want, or is that TOO aggressive?

    Carlene
  • MK_4Dani
    MK_4Dani Member Posts: 314

    Linda....Yuk. I am so BAD
    Linda....Yuk. I am so BAD at that "fragile little flower" thing. And it goes so against my nature, I would probably vomit before I got out of his office.

    I say grab him by his testicles and squeeze until he does what I want, or is that TOO aggressive?

    Carlene

    ROFL
    Carlene: What EVER it takes to be heard and get what you want. I like the way you think.
    Mary
  • carolyn45
    carolyn45 Member Posts: 100
    It's important to LIKE your oncologist!
    Carlene, you're going to beat this cancer (my best guess) because you ARE so pro-active and involved in every aspect of your treatment. I read somewhere and have heard several times that one of the predictors of recovery is truly liking your oncologist and, most importantly feeling that he or she likes YOU and is open to whatever you have to say. That contributes to feeling powerful rather than helpless. My oncologist was young, gorgeous, and would come into the exam room with a huge grin saying, "Where's the list?" I always had a long list of questions and ideas. He went over every one and was happy to do so. David Servan-Schreiber, who wrote "Anti Cancer, a New Way of Life," (SUPER book, by the way, very empowering) had brain surgery twice. Even as a physician himself, he interviewed a number of surgeons and oncologists before picking whom he wanted. I think it's crucial for you to explore your options and pick from your heart as well as your head. You're already fighting cancer. You don't want to have to fight your doctor.

    All the best, always,
    Carolyn
  • carolenk
    carolenk Member Posts: 907 Member

    No HMO. My husband, bless
    No HMO. My husband, bless him, has always been a big believer in insurance, so we have primary and secondary coverage.

    How does one shop for a new specialist? This is the one my PCP sent me to, so???

    Carlene

    Second opinion
    You have to look for a doctor who practices in a different hospital. For your purposes, a medical oncologist would be fine. The docs have to come up with a good reason to do a test/procedure or else the insurance company won't pay even if you can get the doctor to order what you want. Since your blood test is fine, you will have to present with symptoms: bladder pressure, pelvic discomfort, constipation, etc. Do you see what I mean?

    There must be a good reason to order a test--not just for the patient's peace of mind. Although, you might be able to get an ultrasound at the very least as it is non-invasive & low risk. I think you are OK as long as you are not having any discomfort--but you might need to be "uncomfortable" long enough to get tested.
  • Radioactive34
    Radioactive34 Member Posts: 391 Member
    carolyn45 said:

    It's important to LIKE your oncologist!
    Carlene, you're going to beat this cancer (my best guess) because you ARE so pro-active and involved in every aspect of your treatment. I read somewhere and have heard several times that one of the predictors of recovery is truly liking your oncologist and, most importantly feeling that he or she likes YOU and is open to whatever you have to say. That contributes to feeling powerful rather than helpless. My oncologist was young, gorgeous, and would come into the exam room with a huge grin saying, "Where's the list?" I always had a long list of questions and ideas. He went over every one and was happy to do so. David Servan-Schreiber, who wrote "Anti Cancer, a New Way of Life," (SUPER book, by the way, very empowering) had brain surgery twice. Even as a physician himself, he interviewed a number of surgeons and oncologists before picking whom he wanted. I think it's crucial for you to explore your options and pick from your heart as well as your head. You're already fighting cancer. You don't want to have to fight your doctor.

    All the best, always,
    Carolyn

    I agree with everyone here.
    I agree with everyone here. :)
  • poopergirl14052
    poopergirl14052 Member Posts: 1,183 Member

    I agree with everyone here.
    I agree with everyone here. :)

    you have always followed your insticts
    so don't stop now. Keep your appointment and find out what you need to know. ..val
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  • JoAnnDK
    JoAnnDK Member Posts: 275
    unknown said:

    This comment has been removed by the Moderator

    cost of PET scan
    Nancy, how much do you pay for a PET scan?

    Thanks for this info

    JOANN
  • JoAnnDK
    JoAnnDK Member Posts: 275
    unknown said:

    This comment has been removed by the Moderator

    2 gyn oncs
    I go to a local gyn onc and one at Hopkins. So far, both have agreed. I dread the day when there is a difference of opinion.....especially if my opinion differs from theirs!

    JOANN
  • JoAnnDK said:

    cost of PET scan
    Nancy, how much do you pay for a PET scan?

    Thanks for this info

    JOANN

    This comment has been removed by the Moderator
  • JoAnnDK
    JoAnnDK Member Posts: 275
    unknown said:

    This comment has been removed by the Moderator

    $2300
    Wow, that is cheap, Nancy. I was told mine would be $8-9000!
  • carolenk
    carolenk Member Posts: 907 Member
    unknown said:

    This comment has been removed by the Moderator

    Paying for PET scan
    Nancy707

    Does your insurance apply your out-of-pocket payment towards your deductible? I might have to pay for my next PET scan myself.