Just diagnosed with UPSC

Sandy3185
Sandy3185 Member Posts: 229 Member
in Uterine/Endometrial Cancer #1

Hi, my name is Sandy. I was just diagnosed with UPSC and have not yet seen a gyn oncologist. I am really frightened! I have been reading some of the posts here as well as researching online and it doesn't look good. I am wondering what the next step will be, how long treatment will take and what are my chances?? I have not yet been staged so I alternate between thinking I am stage 1 and then I swing to the other end of the scale. On top of that, I live in a small city and my insurance does not cover either of the specialists that are near to me so I may have to travel over 50 miles for treatment. They are also dragging their feet with the referral for treatment. Can anyone tell me their experience and timeline?

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Comments

  • debrajo
    debrajo Member Posts: 1,095 Member
    #2
    UPSC

    Hi Sandy!  Sorry you have to find us like this, but glad you did!  First...don't panic!  I am UPSC also and if everything is clear Nov 6th I will be three and one half years clear.  The kind we have is one of the worst in aggression, but they usually start with a full radical hysterectomy you might have already had then the sandwich chemo and radiation.  I had six rounds of Taxol/Carboplatin and five rounds of internal radiation.  You will lose your hair, but wigs are great!  No nausia for me and no neuropathy  either.  I have a two hour drive both ways to Houston and I drove myself there and back, alone, with no trouble.  There are quite a few of us UPSC'ers here that can go into great detail no matter what stage you are  when you need info.  Best advice at this point?  STAY OFF THE INTERNET, take one step at a time, ask questions, and BREATH!  We are here and you can email any of us prively throught this site, but we talk about EVERYTHING here, nothing is out of bounds!  Let me know if I can help.  Best, DebraJO

  • Sandy3185
    Sandy3185 Member Posts: 229 Member
    #3
    debrajo said:

    UPSC

    Hi Sandy!  Sorry you have to find us like this, but glad you did!  First...don't panic!  I am UPSC also and if everything is clear Nov 6th I will be three and one half years clear.  The kind we have is one of the worst in aggression, but they usually start with a full radical hysterectomy you might have already had then the sandwich chemo and radiation.  I had six rounds of Taxol/Carboplatin and five rounds of internal radiation.  You will lose your hair, but wigs are great!  No nausia for me and no neuropathy  either.  I have a two hour drive both ways to Houston and I drove myself there and back, alone, with no trouble.  There are quite a few of us UPSC'ers here that can go into great detail no matter what stage you are  when you need info.  Best advice at this point?  STAY OFF THE INTERNET, take one step at a time, ask questions, and BREATH!  We are here and you can email any of us prively throught this site, but we talk about EVERYTHING here, nothing is out of bounds!  Let me know if I can help.  Best, DebraJO

    Thanks DebraJo!

    No, I have not yet had surgery. I received the diagnosis from my gyn on this past Weds and have not yet received the referral from my insurance for the gyn oncologist. The not really knowing anything more is driving me crazy! I have continued reading posts to various threads and they are very inspiring. Thank you for your support.

  • SettledSue
    SettledSue Member Posts: 55 Member
    #4
    Don't delay

    I have clear cell endometrial cancer, which is another very agressive form of endometrial cancer. As many others here will tell you, the most important thing for you right now is to have your surgery done by a gynecologic oncologist rather than by a regular gynecologist.       You should get an appointment with one as soon as you can. Good luck to you! Let us know what happens.  Sue

  • janh_in_ontario
    janh_in_ontario Member Posts: 151 Member
    #5
    Don't panic

    Hi Sandy

    I had the basic uterine cancer diagnosis in Sept 2010. Like you, the worst of this journey has been the not knowing and the waiting. My advice would be to try and read as much on here but leave the rest of the internet alone. There are many ladies on here who have stood in your shoes and undrstand what you are feeling, fearing, and thinking and while every one of us are unique, most of our stories have a common thread. I have been 3 years without recurrence but I have had many scares - and this is where I come to prepare before seeing the doctor. Take someone with you when you go and ask for copies of everything.   hugs, janh

     

     

     

     

     

     

     

     

     

     

  • debrajo
    debrajo Member Posts: 1,095 Member
    #6
    Sandy3185 said:

    Thanks DebraJo!

    No, I have not yet had surgery. I received the diagnosis from my gyn on this past Weds and have not yet received the referral from my insurance for the gyn oncologist. The not really knowing anything more is driving me crazy! I have continued reading posts to various threads and they are very inspiring. Thank you for your support.

    One more thought

    If you are waiting for a referal, ask in advance for an oncologist/gyn who has had experance and knowledge of working with UPSC patients.  Even if your stage is a 0 or one  when it is UPSC, the perfere treatment is NOT  just surgery.  We have heard of some here who's dr. recomended only the hysterectomy, but this is a grade C aggression cancer and you must hit it hard.  They threw the who range of treatments at me even though I was only a 1a due to the "C".  Keep reading the ppost here, start writting a list of questions for the dr. and us.  I think Ro10 is the board  expert on UPSC  She is on vacation to Austrailia, but will be back soon.  Read her treads and see how she just keeps on going!  Let us know your surgery date and the outcome aand we all will help you get through.  As our friend Jazzy1 says"cancer is a word, not a sentance!  Best Debrajo

  • tattooedtxgirl
    tattooedtxgirl Member Posts: 61
    #7
    Welcome Sandy3185

    I'm sorry you had to find this website this way...

    But welcome! and know that their are many knowledgable and wonderful ladies here.

     

    I will keep you in my thoughts. Hugs

    Crystal

  • ConnieSW
    ConnieSW Member Posts: 1,688 Member
    #8
    tattooedtxgirl said:

    Welcome Sandy3185

    I'm sorry you had to find this website this way...

    But welcome! and know that their are many knowledgable and wonderful ladies here.

     

    I will keep you in my thoughts. Hugs

    Crystal

    Advice

    Hope you're feeling better after all this good advice.  You are dealing with the worst part of this now.  I am not prone to anxiety but it got a good hold on me during the waiting period where you are now.  Surgery, chemo, brachytherapy were all easier.  I wish I had found this site as early as you did.  Keep coming back.  We'll take good care of you.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,488 Member
    #9
    It is ok to be scared - I think we all were!

    I would just say first, take a breath.  Next, as everyone here as told you, find a gynecological oncologist.  They know what they are doing with gynecological cancers.  Take another breath and take this one step at a time.  Come back and ask us any question you want.  The warriors here are INCREDIBLE and will help.  Keep in mind that everybody is different and we all are effected differently by treatment. 

     

  • Sandy3185
    Sandy3185 Member Posts: 229 Member
    #10
    NoTimeForCancer said:

    It is ok to be scared - I think we all were!

    I would just say first, take a breath.  Next, as everyone here as told you, find a gynecological oncologist.  They know what they are doing with gynecological cancers.  Take another breath and take this one step at a time.  Come back and ask us any question you want.  The warriors here are INCREDIBLE and will help.  Keep in mind that everybody is different and we all are effected differently by treatment. 

     

    Thank you all so much!

    I appreciate your advice so much. I will update when I am able to get a gyn oncologist adn see where I am going. Thanks again, Sandy

  • miachloe
    miachloe Member Posts: 1
    #11
    Hi Sandy:)

    Hi Sandy:)

    I was just diagnosed with stage3c1 endometrial cancer. On Oct. 2nd I found out a endometrial biopsy came back cancer. Then on Oct.11th I had a robotic assisted hysterectomy with staging. And on Oct. 22nd is when I found out what stage. It has been an overload of emotions. I really know what you are feeling as everyone else on here does. I hope the best for you! Just do a lot of deep breathing and keep positive:) This is my first post/reply here and it's nice to know I am not alone. And that means...YOU are not alone either!:) 

  • tattooedtxgirl
    tattooedtxgirl Member Posts: 61
    #12
    miachloe said:

    Hi Sandy:)

    Hi Sandy:)

    I was just diagnosed with stage3c1 endometrial cancer. On Oct. 2nd I found out a endometrial biopsy came back cancer. Then on Oct.11th I had a robotic assisted hysterectomy with staging. And on Oct. 22nd is when I found out what stage. It has been an overload of emotions. I really know what you are feeling as everyone else on here does. I hope the best for you! Just do a lot of deep breathing and keep positive:) This is my first post/reply here and it's nice to know I am not alone. And that means...YOU are not alone either!:) 

    best advice...

    Sandy,

    you are not alone! 

     

    Best of wishes,

    Hugs,

    Crystal

  • Sandy3185
    Sandy3185 Member Posts: 229 Member
    #13
    tattooedtxgirl said:

    best advice...

    Sandy,

    you are not alone! 

     

    Best of wishes,

    Hugs,

    Crystal

    Thank you both!

    Just got a referral to the gyn/onc-waiting for an appointment. I hope it is soon! I hate that anyone else has to go thru this but I appreciate so much the compassion shown here. 

  • SUNGRANNY
    SUNGRANNY Member Posts: 81 Member
    #14
    Sandy3185 said:

    Thank you both!

    Just got a referral to the gyn/onc-waiting for an appointment. I hope it is soon! I hate that anyone else has to go thru this but I appreciate so much the compassion shown here. 

    Thinking of you

    Hello Sandy,

    I join with other UPSC sisters in welcoming you and sharing support on your journey.  

    I was diagnosed with Stage 4 a year ago,  so can relate to the emotional roller coaster.  

    There is lots of good advice on this list.  I agree, bring a list of questions, and someone to take notes if possible. When a friend wasn't available, I brought an inexpensive digital recorder.  I explained that since I didn't have anyone to take notes today, I'd like to record our visit to help me remember later.  None of the docs objected.  Also, be sure to get a number to call if you have more questions.

    Thinking of you,

    Sungranny

  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #15
    Experience

    Hi Sandy:

    Sorry you had to meet here!   Anyway, concerning dragging their feet.   When you hear the word "cancer" we want that ripped out of us as soon as possible.  However, it doesn't always work that way.   When I was diagnosed, it took almost three months before I began treatment.   Then when I had a recurrence, they wanted to start chemo right away (which I didn't allow).   As a result of that, I now see a doctor that is 3 hours away.   So you see there isn't really any set rule and it is usually how a certain doctor likes to do it.

    Just be your own advocate.   No questions is too little or too insignificant to ask.   Everyone's treatment is different and everyone's body reacts differently.   By the way, you are the one who really makes the final decision.   But when we are scared, sometimes we just go along with whatever someone says.    Also, you can get a second opinion too.

    I hope all goes well for you.  

     

    Kathy

  • Sandy3185
    Sandy3185 Member Posts: 229 Member
    #16
    Kaleena said:

    Experience

    Hi Sandy:

    Sorry you had to meet here!   Anyway, concerning dragging their feet.   When you hear the word "cancer" we want that ripped out of us as soon as possible.  However, it doesn't always work that way.   When I was diagnosed, it took almost three months before I began treatment.   Then when I had a recurrence, they wanted to start chemo right away (which I didn't allow).   As a result of that, I now see a doctor that is 3 hours away.   So you see there isn't really any set rule and it is usually how a certain doctor likes to do it.

    Just be your own advocate.   No questions is too little or too insignificant to ask.   Everyone's treatment is different and everyone's body reacts differently.   By the way, you are the one who really makes the final decision.   But when we are scared, sometimes we just go along with whatever someone says.    Also, you can get a second opinion too.

    I hope all goes well for you.  

     

    Kathy

    Finally!

    I finally saw my gyn/oncologist yesterday! I liked him very much. He scheduled my surgery for 12/5. He basically confirmed what I had read here. He needs a release from my cardiologist( I had a heart attack 7 years ago) and already did a CAT scan. I do feel less anxious today. My husband came with me and he was great and took notes for me. Thanks again for all this amazing support.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,488 Member
    #17
    Sandy3185 said:

    Finally!

    I finally saw my gyn/oncologist yesterday! I liked him very much. He scheduled my surgery for 12/5. He basically confirmed what I had read here. He needs a release from my cardiologist( I had a heart attack 7 years ago) and already did a CAT scan. I do feel less anxious today. My husband came with me and he was great and took notes for me. Thanks again for all this amazing support.

    So happy to hear

    Sandy, I was waiting to hear your report back.  It is good to have a "plan", isn't it?  Usually surgery is the first step.  Take it one day at a time and so glad to hear you liked your doctor.  I always think that is important because you are going to see this person quite a lot and will be talking to him a lot. 

     

  • Ro10
    Ro10 Member Posts: 1,561 Member
    #18
    Sandy3185 said:

    Finally!

    I finally saw my gyn/oncologist yesterday! I liked him very much. He scheduled my surgery for 12/5. He basically confirmed what I had read here. He needs a release from my cardiologist( I had a heart attack 7 years ago) and already did a CAT scan. I do feel less anxious today. My husband came with me and he was great and took notes for me. Thanks again for all this amazing support.

    Sandy, welcome to this site

    I am sorry you have to join us.  I am glad you have a surgery date.  It is good that you like yor gyn/onocologist.  Do you know if you will have robotic or open hysterectomy.   My husband has gone with me to every appointment and has been a great support for me.  I think my initial diagnosis of UPSC 3-C was harder on him than it was for me.  He has been with me through all these years.

    Come back with any questions you may have.  Remember to breathe and take one day at a time.  In peace and caring.

     

  • Sandy3185
    Sandy3185 Member Posts: 229 Member
    #19
    Ro10 said:

    Sandy, welcome to this site

    I am sorry you have to join us.  I am glad you have a surgery date.  It is good that you like yor gyn/onocologist.  Do you know if you will have robotic or open hysterectomy.   My husband has gone with me to every appointment and has been a great support for me.  I think my initial diagnosis of UPSC 3-C was harder on him than it was for me.  He has been with me through all these years.

    Come back with any questions you may have.  Remember to breathe and take one day at a time.  In peace and caring.

     

    Thank Ro10

    I am having an open hysterectomy and apparently he is taking everything! But, for some reason, I am feeling much less anxiety. No more knots in my stomach. I just wish they could schedule the surgery sooner. I will be seeing my cardiologist next week togeta release   for the surgery as I will have to stop taking some of my medications for a week or so. Once I have that release, they will try to move the surgery up if space opens. As it is now, I am looking forward to visiting my kids in Miami and spending Thanksgiving there with our extended family.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,488 Member
    #20
    Sandy3185 said:

    Thank Ro10

    I am having an open hysterectomy and apparently he is taking everything! But, for some reason, I am feeling much less anxiety. No more knots in my stomach. I just wish they could schedule the surgery sooner. I will be seeing my cardiologist next week togeta release   for the surgery as I will have to stop taking some of my medications for a week or so. Once I have that release, they will try to move the surgery up if space opens. As it is now, I am looking forward to visiting my kids in Miami and spending Thanksgiving there with our extended family.

    "What are you doing tomorrow?"

    That is what I said to my gyn/onc the first day I met him.  I wanted my surgery immediately, and even though I had to wait a little longer than "TOMORROW", it was calming to walk out with a date. 

    Enjoy your family and the holiday. 

  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #21
    Sandy3185 said:

    Thank Ro10

    I am having an open hysterectomy and apparently he is taking everything! But, for some reason, I am feeling much less anxiety. No more knots in my stomach. I just wish they could schedule the surgery sooner. I will be seeing my cardiologist next week togeta release   for the surgery as I will have to stop taking some of my medications for a week or so. Once I have that release, they will try to move the surgery up if space opens. As it is now, I am looking forward to visiting my kids in Miami and spending Thanksgiving there with our extended family.

    Sandy:
     
    When they said I

    Sandy:

     

    When they said I needed a hysterectomy (not for cancer), I wanted it done immediately too.  With the tremendous pain I was having I felt like I was dying.  I would literally curl up into a ball becasue of the pain.  But  had to wait (can you believe this) for seven (7) months.   The doctor wanted me on Lupron to make the surgery "easier" for him because of all my lesions.  He said the lupron would soften the lesions.   Of course at that time (even though I had a laparascopy and internal ultrasound), they did not know I had cancer until after the surgery.  Then a month later becasue they found cancer I had to go back in for staging surgery.  Yuck!

    Anyway, make sure or check with your doctor that even though they are doing a total hysterectomy, see if they are also taking out the appendix and the omentum.   It seems that these two places are things were reoccurrences can occur more frequently.   Some doctors do take those out.  Others do not.   

    My best to you on your upcoming surgery.

     

    Kathy

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