Returning to the discussion board…feeling frustrated with my doctors!

It's been quite a few months since I've posted anything on the discussion...or even looked at the board!  I stopped reading posts because some got a little depressing and some were just too overwhelming...and then I was just so disillusioned by my doctor that I kind of went into a "denial" phase!  In January 2012 I was diagnosed with uterine and cervical cancer.  I went to one of the top treatment centers in the US, thinking I was doing the right thing.  At that point, I researched many things about my condition and felt that I was very "self-informed".  I did ask the doctor many questions, being new to this whole cancer thing!  She answered some of my questions, but referred me to the center's website for more info.  In March 2012 I had a radical hysterectomy, five weeks of external radiation, and three weeks of internal radiation.  I was able to tolerate the treatments fairly well, with just diareahha.  I did not know the "standard protocol" and put all my faith in my doctor.  

Fast forward to the summer of 2014.  My stomach was still bothering me and I still had diarrhea.  I thought it couldn't still be due to the radiation, so I went to my mother's GP.  He thought I might have gallstones and sent me for an abdominal CT.  He could see the bottom of my lungs in my scans, which showed some tumors.  He sent me for a full chest scan which revealed 16 large, bilateral tumors...inoperable.  That's when I first went on this discussion board.  I learned that the protocol for post-treatment is scans every three months.  Long story, short, I did not have that!  I called my original surgeon who said that I had many scans, but when we checked, I only had one scan, and that was in September 2012.  The next scan, not given by this hospital, was eleven months later!  And it showed I had 16 inoperable tumors!  When I was finally able to look at the scan results from September 2012, it showed that I already had a tumor, but the doctor did nothing about it!!

Forward to now...I had six rounds of chemo - taxol and carboplat - starting in November.  After the second round the doctor wanted to stop the taxol because I was developing neuropathy.  I had to fight to keep the taxol and after six treatments, the number of tumors went down to 12 in January.  It was a constant battle with the doctor every visit to keep the taxol, which I did, and after six treatments in March, I was down to 6 tumors!!  At that point she said she was discontinuing the taxol, against my wishes, and I had two more treatments of Carbo.  After my most recent scan, two of the tumors started growing again!  After the 8th round of chemo, she said the IV chemo has done all it can and started me on what she called an "oral chemo".  When I filled the script, the pharmacist told me it was a hormone, not an oral chemo.  

After my 5th treatment, they drew blood to see if I were eligible for a genetic study.  When I went back after the 8th tx, she said, "We have good news!"  I'm thinking, "Yes, my cancer is gone!"  She said, "no, two of the tumors have grown, but you do have seven mutations in your tumors!"  I'm thinking, "How the heck is this good news?!?!"  She said it makes me eligible for the study.  So I said, "Great! When do we start?"  Her response was "When you get worse!"  I have to get worse before they with start the experimental treatment...and then I may only get the placebo!  Then I started hearing stories from so many people that this hospital is a research hospital...they are only interested in research...maybe they stopped your chemo because they want you to get worse so you can be in the study...

So...now I am neurotic, confused, and overwhelmed!  Then I just read some postings here about "maybe the doctors are not telling us everything..."

Oh, and a few other things from the discussion board...I also have the swelling of the feet and ankles!  Moving up my calves.  Had to buy the next size up in shoes because my right foot is so swollen.  I asked the doctor, she did not seem too concerned.  And the only good thing I thought would happen with the cancer is that I would lose weight...did not happen!  Just the opposite!  I have put on over 25 pounds since I started chemo in November and I am only eating a little each day!  Not because of nausea, but because I have no appetite and I am not hungry.  The doctor said she "was not concerned" with this either.  She said it might be because I am not as active as I was.  I am still active, though!  

Stressed, frustrated, and confused...and looking for answers!

Comments

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,248 Member
    Barbara De, I am sorry to

    Barbara De, I am sorry to hear you are having so many problems.  I agree this site can be hard to read sometimes, I would skip over a topic when it started going somewhere I didn't want to go, but with time I was able to deal with it. 

    Is there a possibility for you to go to any other doctor or hospital?  I always think you got to love your doctor, as you are putting your life in their hands, and I just don't hear that with your post.

    From listening to the other ladies on this page I have heard follow ups do vary based on your doctor.  It sounds like some women get PET scans, some a PAP, some get a CT, and others just a CA125 and physical exam.

    I think you might want to get the swelling looked at.  I was concerned about a blood clot, and after discounting that, found it was lymphedemia which needs physical therapy and compression garments. 

    I hope you can find some answers to your questions.

     

  • BarbaraDe
    BarbaraDe Member Posts: 18

    Barbara De, I am sorry to

    Barbara De, I am sorry to hear you are having so many problems.  I agree this site can be hard to read sometimes, I would skip over a topic when it started going somewhere I didn't want to go, but with time I was able to deal with it. 

    Is there a possibility for you to go to any other doctor or hospital?  I always think you got to love your doctor, as you are putting your life in their hands, and I just don't hear that with your post.

    From listening to the other ladies on this page I have heard follow ups do vary based on your doctor.  It sounds like some women get PET scans, some a PAP, some get a CT, and others just a CA125 and physical exam.

    I think you might want to get the swelling looked at.  I was concerned about a blood clot, and after discounting that, found it was lymphedemia which needs physical therapy and compression garments. 

    I hope you can find some answers to your questions.

     

    Thank you for your feedback.

    Thank you for your feedback.  I am not very comfortable with my current oncologist.  She is not the dr who did the original surgery, but they are at the same hospital.  I have been on line for the past few hours looking in to other centers.  I think I might try to set up an appointment at MD Anderson in Houston,  Have you heard anything about them that you can share?

    Thank you so much!

  • BarbaraDe
    BarbaraDe Member Posts: 18

    Barbara De, I am sorry to

    Barbara De, I am sorry to hear you are having so many problems.  I agree this site can be hard to read sometimes, I would skip over a topic when it started going somewhere I didn't want to go, but with time I was able to deal with it. 

    Is there a possibility for you to go to any other doctor or hospital?  I always think you got to love your doctor, as you are putting your life in their hands, and I just don't hear that with your post.

    From listening to the other ladies on this page I have heard follow ups do vary based on your doctor.  It sounds like some women get PET scans, some a PAP, some get a CT, and others just a CA125 and physical exam.

    I think you might want to get the swelling looked at.  I was concerned about a blood clot, and after discounting that, found it was lymphedemia which needs physical therapy and compression garments. 

    I hope you can find some answers to your questions.

     

    Thank you for your feedback.

    Thank you for your feedback.  I am not very comfortable with my current oncologist.  She is not the dr who did the original surgery, but they are at the same hospital.  I have been on line for the past few hours looking in to other centers.  I think I might try to set up an appointment at MD Anderson in Houston,  Have you heard anything about them that you can share?

    Thank you so much!

  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    BarbaraDe said:

    Thank you for your feedback.

    Thank you for your feedback.  I am not very comfortable with my current oncologist.  She is not the dr who did the original surgery, but they are at the same hospital.  I have been on line for the past few hours looking in to other centers.  I think I might try to set up an appointment at MD Anderson in Houston,  Have you heard anything about them that you can share?

    Thank you so much!

    Your doctor seems like an arrogant you know what

    One of the most important things for us is to trust our doctors.  Don't have to like them, but we do need to trust them.  And in order for that to happen, they need to explain why they are recommending this or that - in a language we can understand.  Your care may be perfectly appropriate for your type of cancer (what is it BTW) but it really sounds like your doctor is dismissing your concerns and fears which is part of her job to treat, doggone it.  Yes, they are all busy, but it sounds like this woman is just too full of her self importance and missed the coursework on patient communication.  I get my treatments at an academic medical center.  One of the things they emphasize is teaching (not just research) and that includes patient education.  Have you considered a second opinion?  There are several women here who go to MD Anderson and are very happy.  I'm sure they'll chime in. 

    You are not comfortable with your treatment. I hope you get answers and can move forward.  Clinical trials are a good thing, usually.

    Suzanne 

  • debrajo
    debrajo Member Posts: 1,095 Member
    BarbaraDe said:

    Thank you for your feedback.

    Thank you for your feedback.  I am not very comfortable with my current oncologist.  She is not the dr who did the original surgery, but they are at the same hospital.  I have been on line for the past few hours looking in to other centers.  I think I might try to set up an appointment at MD Anderson in Houston,  Have you heard anything about them that you can share?

    Thank you so much!

    WOW!

    Bless your heart!  So much stress and uncertainty to be dealing with!  I am at M.D. Anderson in Houston.  Can't say enough good about them.  I have UPSC  Uterine Papillary Serous Carsonoma.  It is one of the most aggressive cancers with a grade "C" level.  I got caught early stage 1a/2, lots of other problems, but I have been cancer free for four years this last May.   If you have questions about treatment, facilities at M.D. Anderson, ask away or if you'd rather, you can e-mail me through this site.  Best, Debra

  • BarbaraDe
    BarbaraDe Member Posts: 18

    Your doctor seems like an arrogant you know what

    One of the most important things for us is to trust our doctors.  Don't have to like them, but we do need to trust them.  And in order for that to happen, they need to explain why they are recommending this or that - in a language we can understand.  Your care may be perfectly appropriate for your type of cancer (what is it BTW) but it really sounds like your doctor is dismissing your concerns and fears which is part of her job to treat, doggone it.  Yes, they are all busy, but it sounds like this woman is just too full of her self importance and missed the coursework on patient communication.  I get my treatments at an academic medical center.  One of the things they emphasize is teaching (not just research) and that includes patient education.  Have you considered a second opinion?  There are several women here who go to MD Anderson and are very happy.  I'm sure they'll chime in. 

    You are not comfortable with your treatment. I hope you get answers and can move forward.  Clinical trials are a good thing, usually.

    Suzanne 

    Thank you all for your

    Thank you all for your comments!  I have uterine cancer which has spread to my lungs...stage IV,  In November they gave me a year to a year and a half to live, but I don't believe them!  Suzanne, you are right.  They should explain things to you!  Not my doctor!  we are able to access some of our lab results and radiology results online in a personal portal.  I looked at some of my bloodwork - some levels were too high and some were too low.  I printed them out and brought them to her during a visit.  When I asked her what the levels meant, she responded, "I feel like I am back in med school and have to teach you!"  I told her she DOES have to teach me!  She said she is not worried about the results and that they were expected with what I was going through.What kind of a response is that from a doctor...expecially an oncologist!!

    Debra, thanks for your offer!  I think I may take you up on it!  I also think I will schedule a visit to Houston!

  • ConnieSW
    ConnieSW Member Posts: 1,647 Member
    BarbaraDe said:

    Thank you all for your

    Thank you all for your comments!  I have uterine cancer which has spread to my lungs...stage IV,  In November they gave me a year to a year and a half to live, but I don't believe them!  Suzanne, you are right.  They should explain things to you!  Not my doctor!  we are able to access some of our lab results and radiology results online in a personal portal.  I looked at some of my bloodwork - some levels were too high and some were too low.  I printed them out and brought them to her during a visit.  When I asked her what the levels meant, she responded, "I feel like I am back in med school and have to teach you!"  I told her she DOES have to teach me!  She said she is not worried about the results and that they were expected with what I was going through.What kind of a response is that from a doctor...expecially an oncologist!!

    Debra, thanks for your offer!  I think I may take you up on it!  I also think I will schedule a visit to Houston!

    Education

    If she doesn't want to answer your questions about abnormal labs, I wonder why she doesn't set you up with a nurse in the practice.  As a nurse I spent time with my patients answering questions about lab work.  This dr certainly doesn't have much empathy.

  • debrajo
    debrajo Member Posts: 1,095 Member
    BarbaraDe said:

    Thank you all for your

    Thank you all for your comments!  I have uterine cancer which has spread to my lungs...stage IV,  In November they gave me a year to a year and a half to live, but I don't believe them!  Suzanne, you are right.  They should explain things to you!  Not my doctor!  we are able to access some of our lab results and radiology results online in a personal portal.  I looked at some of my bloodwork - some levels were too high and some were too low.  I printed them out and brought them to her during a visit.  When I asked her what the levels meant, she responded, "I feel like I am back in med school and have to teach you!"  I told her she DOES have to teach me!  She said she is not worried about the results and that they were expected with what I was going through.What kind of a response is that from a doctor...expecially an oncologist!!

    Debra, thanks for your offer!  I think I may take you up on it!  I also think I will schedule a visit to Houston!

    Hey

    Forgot to tell you that my dr. is Kathlene Schmeller and the department head is dr Karen Lu.  I have seen both, but dr schmeller is my regular ong/gyn.  I have some telephone numbers you can call to refer /make appointments for yourself.  There are people you can talk to there that can get you to the right places.  I am seen at the Mays Clinic right across the street from the main hospital.  Much easier to get to and navigate there.  Let me know if I can help!