? Re:recurrence surgery

Daughters3
Daughters3 Member Posts: 18
in Uterine/Endometrial Cancer #1

Hey ladies! Thank you all so much for the wealth of information you have shared. my family has learned so much from you all! Just sad there is a need for a board like thi!!! My mom (originally stage 1a upsc ) recently learned she had a recurrence in her omentum. we went to gyn oncology chair at Cleveland clinic for a second opinion. Plain as day was a small tumor outside colon which dr & radiologist in Buffalo completely missed :(! She is scheduled for surgery at Clinic in mid July, but I'm so scared it's so far off! Have any of you ladies waited a whole month before surgery? Also we are praying her Medicare supplemental insurance will approve her to go out of network. Any advice on that?? She is scared to death and not sure of what to do! Thank you!! Ali

Comments

  • Kathy G.
    Kathy G. Member Posts: 245 Member
    #2
    Hi Daughters 3,
    I noticed no

    Hi Daughters 3,

    I noticed no one had responded to your post so I thought I'd give it a shot...

    1st, I am sorry to hear about your mom's reoccurence. That has to be so worrisome & frustrating!

    I waited almost 2 months for my surgery due to scheduling issues, work & a screw-up on my pre-op testing. so yes, there are ladies who have not had surgery immediately. However, my surgeon was somehow able to determine from the biopsy & ultrasound that my tumor was very small & probably very early stage. He was right. It was not an aggressive cancer like upsc.

    If the surgeon is comfortable w/waiting a month I would assume it is not an issue, but I would still call & ask if waiting could result in spreading in that time frame. Never hurts to ask, and you are dealing with the Cleveland Clinic that has a wonderful reputation. Plus, they found what the 1st doctor missed...

    I have no idea about the insurance question. I would call Medicare & ask them if you will be allowed to go out of network.

    Best of luck for your mom & your family.

    Kathy

  • Daughters3
    Daughters3 Member Posts: 18
    #3
    Kathy G. said:

    Hi Daughters 3,
    I noticed no

    Hi Daughters 3,

    I noticed no one had responded to your post so I thought I'd give it a shot...

    1st, I am sorry to hear about your mom's reoccurence. That has to be so worrisome & frustrating!

    I waited almost 2 months for my surgery due to scheduling issues, work & a screw-up on my pre-op testing. so yes, there are ladies who have not had surgery immediately. However, my surgeon was somehow able to determine from the biopsy & ultrasound that my tumor was very small & probably very early stage. He was right. It was not an aggressive cancer like upsc.

    If the surgeon is comfortable w/waiting a month I would assume it is not an issue, but I would still call & ask if waiting could result in spreading in that time frame. Never hurts to ask, and you are dealing with the Cleveland Clinic that has a wonderful reputation. Plus, they found what the 1st doctor missed...

    I have no idea about the insurance question. I would call Medicare & ask them if you will be allowed to go out of network.

    Best of luck for your mom & your family.

    Kathy

    Thank you Kathy!

    i truly appreciate you taking the time to respond- great advice too! We have a call in to Cleveland & Medicare. Hope the sun is shining where you are!! Ty again! Ali

  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #4
    For my first surgery, I ended

    For my first surgery, I ended up waiting seven months (although they didn't realize I had cancer).  When I had a recurrence, I went and got second and third opinions, and it was five months before I found a doctor (at Cleveland Clinic) and then I was to have surgery the following month but my doctor got sick and I had to wait another month.  So no, it is not unusual.  It does happen.  Nerve wracking for patients though!

    I have no advice about insurance.  Although I live in another state, I have highmark which is accepted by Cleveland Clinic.

    My best to your mom

    Kathleen

  • Daughters3
    Daughters3 Member Posts: 18
    #5
    Kathy G. said:

    Hi Daughters 3,
    I noticed no

    Hi Daughters 3,

    I noticed no one had responded to your post so I thought I'd give it a shot...

    1st, I am sorry to hear about your mom's reoccurence. That has to be so worrisome & frustrating!

    I waited almost 2 months for my surgery due to scheduling issues, work & a screw-up on my pre-op testing. so yes, there are ladies who have not had surgery immediately. However, my surgeon was somehow able to determine from the biopsy & ultrasound that my tumor was very small & probably very early stage. He was right. It was not an aggressive cancer like upsc.

    If the surgeon is comfortable w/waiting a month I would assume it is not an issue, but I would still call & ask if waiting could result in spreading in that time frame. Never hurts to ask, and you are dealing with the Cleveland Clinic that has a wonderful reputation. Plus, they found what the 1st doctor missed...

    I have no idea about the insurance question. I would call Medicare & ask them if you will be allowed to go out of network.

    Best of luck for your mom & your family.

    Kathy

    Thank you Kathy!

    i truly appreciate you taking the time to respond- great advice too! We have a call in to Cleveland & Medicare. Hope the sun is shining where you are!! Ty again! Ali

  • Daughters3
    Daughters3 Member Posts: 18
    #6
    Kaleena said:

    For my first surgery, I ended

    For my first surgery, I ended up waiting seven months (although they didn't realize I had cancer).  When I had a recurrence, I went and got second and third opinions, and it was five months before I found a doctor (at Cleveland Clinic) and then I was to have surgery the following month but my doctor got sick and I had to wait another month.  So no, it is not unusual.  It does happen.  Nerve wracking for patients though!

    I have no advice about insurance.  Although I live in another state, I have highmark which is accepted by Cleveland Clinic.

    My best to your mom

    Kathleen

    Thanks Kathleen!

    It's very reassuring to know this does happen:) My mom is having a bit of stomach pain, which concerns me. In the grand scheme of things I'd rather she wait and have it done right! Again, thanks for your advice! Hope you are enjoying summer! Ali

  • Lou Ann M
    Lou Ann M Member Posts: 996 Member
    #7
    Waited for surgery

    I ended up waiting about 2 months for my surgery.  I got the first hint of this journey that I was going on 2 weeks before school started in 2012.  I had a D&C ( for diagnostic purposes) the Friday before school started.. My Gyn wanted to do surgery the next week, but I asked for a referral to a Gyn Onc 250miles away.  He said he wanted to wait 6 weeks so I was completely healed from the D&C.  That actually worked out well as I had time to prepare my classroom.  getting a good sub and preparing lessons for 4-6 weeks.  I was able to prepare my students so that they would be Ok while I was gone. I was also able to get my mine around what was going on with me.  I do not think my outcome would have been any different if I had had the surgery earlier.  I did have the 1st 6 chemos and the radiation out of network for Medicare, because it was almost 40 miles closer.  They paid the out of netwok rate which was not a lot less.  prayers, Lou Ann

  • Daughters3
    Daughters3 Member Posts: 18
    #8
    Lou Ann M said:

    Waited for surgery

    I ended up waiting about 2 months for my surgery.  I got the first hint of this journey that I was going on 2 weeks before school started in 2012.  I had a D&C ( for diagnostic purposes) the Friday before school started.. My Gyn wanted to do surgery the next week, but I asked for a referral to a Gyn Onc 250miles away.  He said he wanted to wait 6 weeks so I was completely healed from the D&C.  That actually worked out well as I had time to prepare my classroom.  getting a good sub and preparing lessons for 4-6 weeks.  I was able to prepare my students so that they would be Ok while I was gone. I was also able to get my mine around what was going on with me.  I do not think my outcome would have been any different if I had had the surgery earlier.  I did have the 1st 6 chemos and the radiation out of network for Medicare, because it was almost 40 miles closer.  They paid the out of netwok rate which was not a lot less.  prayers, Lou Ann

    Thanks LouAnn!

    i just hate how healthcare is all about the $. Doctors & patients should be making these decisions ! It sounds as though your surgery went well?? I sure hope so! You ladies are all so amazing taking time out of your day to share what you have learned with others! Thank you from the bottom of my heart! Ali

  • mamamoody
    mamamoody Member Posts: 28
    #9
    Wait for surgery

    In my case ... about 6 weeks from the time of cancer diagnosis to my hysterectomy.

  • Hopeful162
    Hopeful162 Member Posts: 82
    #10
    Waiting time

    For me, hysterectomy (and staging) was about five weeks after my USPC biopsy, but I had to call and ask to get an earlier appointment to be given that date.  I had been reading about USPC and was concerned about just waiting around. My oncologist assured me that I was actually getting scheduled pretty fast compared to some! USPC does not spread much in that space of time he assured me.

  • Daughters3
    Daughters3 Member Posts: 18
    #11
    Hopeful162 said:

    Waiting time

    For me, hysterectomy (and staging) was about five weeks after my USPC biopsy, but I had to call and ask to get an earlier appointment to be given that date.  I had been reading about USPC and was concerned about just waiting around. My oncologist assured me that I was actually getting scheduled pretty fast compared to some! USPC does not spread much in that space of time he assured me.

    Thanks Hopeful!

    I really appreciate all the comments. We had bad news today re: insurance approval at the Cleveland Clinic. We have a small local health insurance co from Buffalo called Independent Health. They are great if your young & healthy, but if you get sick forget about it. They force you to stay local even if there are no Drs w/ experience for your type of cancer!my mom is so stressed and having to deal with insurance when you are sick is not something anyone should have to do!!!!

    we will not go back to the dr at our local cancer center who missed a tumor, etc.  on a positive note she's feeling pretty good (hope u all are!!!)! 

    Thanks again for all the advice ladies!! Ali

     

  • pinky104
    pinky104 Member Posts: 574 Member
    #12
    Daughters3

    I waited a whole month until my surgery because my gyn/onc was so booked up.  I was found to have stage IVb UPSC, and I've survived with no evidence of disease for 5 years and one month after surgery now.  My surgery was done by a doctor at St. Peter's Hospital in Albany, NY, who was excellent.  I'm guessing that might be closer to you than Cleveland is. 

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