light at the end of the tunnel

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lostinthefog
lostinthefog Member Posts: 20
in Uterine/Endometrial Cancer #1

so a little bit about my journey so far, back in april I had been told that my gyn had found cancer, he then referened me to a gyn-oncologist, at first i was blinded by everything that was going on. i mean someone has just told me i have cancer. i thought to myself it could not be true im to young, i just got married, i want to have a family. all the horriable thoughts began to run wild. as the months have gone on my oncologist has become less and less helpful in my oppion. he began to judge me based on my weight, would not help with pain management even though i have been into the er more times then i can count in the last 4-5 months. he even made the comment to me that my pain was not cancer related but could not explain it edge wise. he also told me that good luck finding anyone eles that will help me. right then and there i made up my mind and decided to take matters in my own hands. if he wasnt going to help me medically i would find someone who will. so i made a call to the seattle cancer care allience center and they got me in almost right away and started ordering all my records, tests, scans etc. on the day of my appt my mom and i made the 2 and half hour drive to see the new dr. she was amazing gave me more info then i can imagin. never once making me feel like this was my fault that i brought this on myself. for the first time i finally found someone who was on my side medically and not just looking down and belittleing me. there are some things that i found out that this dr. is more concerned about she did state to me that my cancer is very aggressive and she fears this other dr. basically ignoring it and me not having any scans in the last 3 months that it may have spread. that fear aside she is going to do surgery, no more pain, and she also at this time has given me a 75% cure rate. so surgery is scheduled for the 27th of this month. i cant explain the releafe i felt from this dr. to finally have a medical team on my side. 

Comments

  • Editgrl
    Editgrl Member Posts: 903 Member
    #2
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    Lost in the Fog, I'm so glad

    Lost in the Fog, I'm so glad that you've found a doctor who is concerned about you, listens to you and is taking action for you.  I don't understand doctors who don't.  It makes me wonder why they are doctors in the first place.  Congratulations on taking power back from your unhelpful gyn/oncologist.  It sounds like you are now getting the medical care you need and deserve.

  • Abbycat2
    Abbycat2 Member Posts: 644 Member
    #3
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    Editgrl said:

    Lost in the Fog, I'm so glad

    Lost in the Fog, I'm so glad that you've found a doctor who is concerned about you, listens to you and is taking action for you.  I don't understand doctors who don't.  It makes me wonder why they are doctors in the first place.  Congratulations on taking power back from your unhelpful gyn/oncologist.  It sounds like you are now getting the medical care you need and deserve.

    Wow, lostinthefog, I am impressed

    with your self-advocacy. Your first doc is a jerk and I think you made the right decision to find a competent and compassionate doctor. This is YOUR life- not your doctor's. You are paying for good care and should expect it!

    Wishing you the best,

    Cathy

  • Kathy G.
    Kathy G. Member Posts: 244 Member
    #4
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    Lost in the Fog,
    Had no idea

    Lost in the Fog,

    Had no idea you were dealing with such ignorance! I hate hearing stories about medical professionals acting like your original doctor. Doctors are not God, and although obesity can be a contributing factor to some cancers it is not the sole cause. There are so many complex reasons why some of us develop cancer and others do not. As evidence, we have had...and still have many members on this board who are slim, fit, health-conscious, etc. and still got diagnosed. So who does this guy think he is? I would report him to the AMA now or down the road. I truly believe some doctors specialize in oncology because of the money they can make...not out of any interest or concern for their patients.

    I am glad you found a more compassionate doctor. Hopefully your testing will show you are totally treatable despite the time lost by the first doctor.

    Please come back and keep us posted...especially when you are having problems. We care...

  • Port39
    Port39 Member Posts: 7
    #5
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    good for you!

    If the better doctor  is that far way. DONT give up. NO MATTER WHAT!

    I have to travel that far to find a doctor  and getting back there every week has been difficult as I cannot drive myself (I fall asleep when given benadryl). Hopefully, you can find a supportive group like my fellow church members are doing for me. Someone takes me every week! 2 hours each way and 6 for treatment and they don't even let me help with gas. I have met so many people I didn't even know went to my church, they just answered the call for help that went around. They are all amazing. And they listen to me snore all the way home or sing like a drunk woman with the giggles. 

     

    Keep going!

     

     

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    #6
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    Port39 said:

    good for you!

    If the better doctor  is that far way. DONT give up. NO MATTER WHAT!

    I have to travel that far to find a doctor  and getting back there every week has been difficult as I cannot drive myself (I fall asleep when given benadryl). Hopefully, you can find a supportive group like my fellow church members are doing for me. Someone takes me every week! 2 hours each way and 6 for treatment and they don't even let me help with gas. I have met so many people I didn't even know went to my church, they just answered the call for help that went around. They are all amazing. And they listen to me snore all the way home or sing like a drunk woman with the giggles. 

     

    Keep going!

     

     

    port39

    You made me laugh out loud this morning. Love your description of your drive.  LOL  Thanks!

    What I have already found in this short journey of mine, is that people WANT TO HELP. And, I have grown spiritually as well. While I have always been a Christian, I am not an active church attendee. That being said, going into surgery was enlightening for me. From the time I got up to head to the hospital and until after everything was done, I was calm. I felt the prayers. I'm still amazed at that. And I'm grateful too.

    I agree with you, it is worth the drive to get care where you feel the best. So critical to have the trust in the doctors treating you. My drive to Moffitt is about 80 miles but worth every one of them. And, I am lucky to have a very supportive husband to get me there.

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    #7
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    Kathy G. said:

    Lost in the Fog,
    Had no idea

    Lost in the Fog,

    Had no idea you were dealing with such ignorance! I hate hearing stories about medical professionals acting like your original doctor. Doctors are not God, and although obesity can be a contributing factor to some cancers it is not the sole cause. There are so many complex reasons why some of us develop cancer and others do not. As evidence, we have had...and still have many members on this board who are slim, fit, health-conscious, etc. and still got diagnosed. So who does this guy think he is? I would report him to the AMA now or down the road. I truly believe some doctors specialize in oncology because of the money they can make...not out of any interest or concern for their patients.

    I am glad you found a more compassionate doctor. Hopefully your testing will show you are totally treatable despite the time lost by the first doctor.

    Please come back and keep us posted...especially when you are having problems. We care...

    Kathy G

    Well Said! That guy has no business calling himself a DOCTOR. 

     

    Lost in the Fog - So glad you found a REAL doctor to care for you!  Sending you lots of hugs and prayers for a full recovery!

  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    #8
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    TeddyandBears_Mom said:

    port39

    You made me laugh out loud this morning. Love your description of your drive.  LOL  Thanks!

    What I have already found in this short journey of mine, is that people WANT TO HELP. And, I have grown spiritually as well. While I have always been a Christian, I am not an active church attendee. That being said, going into surgery was enlightening for me. From the time I got up to head to the hospital and until after everything was done, I was calm. I felt the prayers. I'm still amazed at that. And I'm grateful too.

    I agree with you, it is worth the drive to get care where you feel the best. So critical to have the trust in the doctors treating you. My drive to Moffitt is about 80 miles but worth every one of them. And, I am lucky to have a very supportive husband to get me there.

    Best wishes!

    So happy you perservered and found someone who would communicate with you and not lecture!  It sounds like your former oncologist should switch specialties - not work with people who have cancer!  It's our oncologist's job to help cancer patients, not belittle them or place blame.  And a huge part of their job is educating patients.  Most of us want to know what's going on and why suggestions and comments are made.  Obesity?  Gimme a break!  Yes, for some cancers this is ONE risk factor.  No one can say why you have cancer.  One risk factor is age and you say you're young!  Well . . . there's a risk factor you don't have and you got cancer.  Grrrrrrrrr.

    wishing you the best,

    Suzanne    

  • molimoli
    molimoli Member Posts: 514
    #9
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    Double Whammy said:

    Best wishes!

    So happy you perservered and found someone who would communicate with you and not lecture!  It sounds like your former oncologist should switch specialties - not work with people who have cancer!  It's our oncologist's job to help cancer patients, not belittle them or place blame.  And a huge part of their job is educating patients.  Most of us want to know what's going on and why suggestions and comments are made.  Obesity?  Gimme a break!  Yes, for some cancers this is ONE risk factor.  No one can say why you have cancer.  One risk factor is age and you say you're young!  Well . . . there's a risk factor you don't have and you got cancer.  Grrrrrrrrr.

    wishing you the best,

    Suzanne    

    Risk factor.I have come to believe that:

    The only international risk factor for cancer  that is factual is to BE BORN. Teenie,weenie, beenie babies are born with it. I don't see them with no gut or **** hanging south, yet they are on the same bus with me .

    OOPS !!! Did I just describe me in my rant?  You'll never know,lol

                                                                                                  nuff love

  • lostinthefog
    lostinthefog Member Posts: 20
    #10
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    molimoli said:

    Risk factor.I have come to believe that:

    The only international risk factor for cancer  that is factual is to BE BORN. Teenie,weenie, beenie babies are born with it. I don't see them with no gut or **** hanging south, yet they are on the same bus with me .

    OOPS !!! Did I just describe me in my rant?  You'll never know,lol

                                                                                                  nuff love

    thank you everyone

    thank you all for your happy thought and words of incouragement, i have for sure needed it. i am very happy that i took my life and my health into my own hands and found a dr that is on my side. im really nurves for the surgery but glad that i wont be feeling this pain anymore i hope. what are some things i sould expect from the surgery. was there things that i could do that will help during the transition. the dr wont put me on hormones because of how aggressive my cancer is she is to affraid that it will spread, if it hasnt already.

  • AWK
    AWK Member Posts: 364 Member
    #11
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    lostinthefog said:

    thank you everyone

    thank you all for your happy thought and words of incouragement, i have for sure needed it. i am very happy that i took my life and my health into my own hands and found a dr that is on my side. im really nurves for the surgery but glad that i wont be feeling this pain anymore i hope. what are some things i sould expect from the surgery. was there things that i could do that will help during the transition. the dr wont put me on hormones because of how aggressive my cancer is she is to affraid that it will spread, if it hasnt already.

    You have got this!

    Sometimes I think doctors forget we are at the center of all of this!  I met with one who is supposed to be one of tops in the field nationally.  Big researcher and on the front end of things.  After he left our meeting my husband asked what I thought and I said I noticed he never looked at me during the consult.  (I am big into watching people's body language which has served me well as an executive in a large corporation).  So we moved on.  I love my new doctor in this clinical trial.  It feels personal.  And his communication with my main oncologist has been amazing.  The one thing I have told each doctor is that they need to believe I can do this; and if they don't and are just focused on the statistics then I am not the right patient for them.  It amazes me the responses I have gotten include tears from one.  All positive.  

    And yes in those "drunk" drives home!  i live in L.A. And the traffic makes my drive to Cedars Sinai about 90 minutes.  My brother came up from San Diego to take me to last week's treatment.  He never knew I snored!  

    The surgery run up is the hardest.  I am not allowed anything with hormones as my doctors have said - it is like throwing gas on a fire.  I kept busy getting my house ready, stocking up foods, making sure I had loose sweats to wear and that sort of thing.  You can do this.  Hang tough!  keeping you in my prayers!  Anne

  • lostinthefog
    lostinthefog Member Posts: 20
    #12
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    AWK said:

    You have got this!

    Sometimes I think doctors forget we are at the center of all of this!  I met with one who is supposed to be one of tops in the field nationally.  Big researcher and on the front end of things.  After he left our meeting my husband asked what I thought and I said I noticed he never looked at me during the consult.  (I am big into watching people's body language which has served me well as an executive in a large corporation).  So we moved on.  I love my new doctor in this clinical trial.  It feels personal.  And his communication with my main oncologist has been amazing.  The one thing I have told each doctor is that they need to believe I can do this; and if they don't and are just focused on the statistics then I am not the right patient for them.  It amazes me the responses I have gotten include tears from one.  All positive.  

    And yes in those "drunk" drives home!  i live in L.A. And the traffic makes my drive to Cedars Sinai about 90 minutes.  My brother came up from San Diego to take me to last week's treatment.  He never knew I snored!  

    The surgery run up is the hardest.  I am not allowed anything with hormones as my doctors have said - it is like throwing gas on a fire.  I kept busy getting my house ready, stocking up foods, making sure I had loose sweats to wear and that sort of thing.  You can do this.  Hang tough!  keeping you in my prayers!  Anne

    anne

    thank you for your words of incouragement, i am also the same way luckly my family knows what to expect when i get in the car with them, i dont snore but i have been told i sound something like a owl. thank you for the helpful info on what you did to get ready for you surgery. i'm big about body language as well i think that as soon as i got over the shock, i basically woke up to what my dr was doing and i decided to move on and do what is best for me. and it was the best decision i have made that is for sure.

  • lostinthefog
    lostinthefog Member Posts: 20
    #13
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    SURGERY COUNT DOWN

    I feel and look like a walking pin cusion right now, yesterday was a very long day of preping for surgery between tests and blood draws. so glad that soon this pain that i am in will hopefully be over, i did get some upsetting news the other day i was taken to emergency yet again for the pain, and during what is hopefully my last pelvic exzam for awhile that is. more pulups were noticed in such what feels like a short amount of time. keeping my hope up that things have not spread and is still all contained..just hopping for the best and trying to keep my head above water though most days it feels like i will drown. just counting down to the 27th.

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    #14
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    lostinthefog said:

    SURGERY COUNT DOWN

    I feel and look like a walking pin cusion right now, yesterday was a very long day of preping for surgery between tests and blood draws. so glad that soon this pain that i am in will hopefully be over, i did get some upsetting news the other day i was taken to emergency yet again for the pain, and during what is hopefully my last pelvic exzam for awhile that is. more pulups were noticed in such what feels like a short amount of time. keeping my hope up that things have not spread and is still all contained..just hopping for the best and trying to keep my head above water though most days it feels like i will drown. just counting down to the 27th.

    Thinking of you!

    lostinthefog - you are almost there! So glad you found a caring doctor to help you. Hang tough. The 27th will be here before you know it. And, it will be so much better for you regardless. You will know what you are dealing with and will have a plan to attack it. Better days are ahead for you.

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