Newbie-Please help!! Wait on Surgery??

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Corinna11
Corinna11 Member Posts: 75
in Breast Cancer #1
I'm an RN but know nothing about BC. Please help. Found lump in February. Was DX on March 15th in L breast. Then DX cancer in R breast as well. Since I'm 45 they did genetic testing. Waited over 6 weeks for results (nobody told me they waited to get approval from ins. first. - was supposed to be only 3 weeks).

Anyway, I see surgeon this Thursday to sign consents BUT he cant schedule surgery till JUNE!! This will be over 4 months since the tumor was found and since I have it in BOTH breasts, I just don't feel comfortable waiting this long while it mets to other parts of my body.

Am I being paranoid?? Is it normal to wait this long? My cancer is actual invasive ductal and tubular on both sides.. Im losing all confidence in my surgeon and I cant sleep at night just thinking about waiting. Sorry that this is so long but Im really concerned. Anyone please help.... Thanks!

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  • ender
    ender Member Posts: 167
    #2
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    Im so sorry to hear about
    Im so sorry to hear about your diagnosis. Waiting 4 months sounds insane if you ask me :( I was diagnosed on March 3. Met my surgeon on March 8. My surgeon immediately did a million test, such as testing for the BRCA gene malfunctions. I had surgery on March 31 (23 days after I first met my surgeon). Because I am only at stage I, we could "afford" to wait a little after surgery so I could have an egg harvest procedure before chemo. I just met with my fertility doctor yesterday and he had another patient my age (29) who could not wait the extra 2 weeks, because she was stage III. My point is that time really matters, and waiting like this sounds far from normal. You should also be told if tests will take time and for what reason. Most of us are not swimming in cash and when our insurance requires pre-authorization we wait rather than pay thousands of dollars. But you should at least be given the option.

    Eva
  • Corinna11
    Corinna11 Member Posts: 75
    #3
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    ender said:

    Im so sorry to hear about
    Im so sorry to hear about your diagnosis. Waiting 4 months sounds insane if you ask me :( I was diagnosed on March 3. Met my surgeon on March 8. My surgeon immediately did a million test, such as testing for the BRCA gene malfunctions. I had surgery on March 31 (23 days after I first met my surgeon). Because I am only at stage I, we could "afford" to wait a little after surgery so I could have an egg harvest procedure before chemo. I just met with my fertility doctor yesterday and he had another patient my age (29) who could not wait the extra 2 weeks, because she was stage III. My point is that time really matters, and waiting like this sounds far from normal. You should also be told if tests will take time and for what reason. Most of us are not swimming in cash and when our insurance requires pre-authorization we wait rather than pay thousands of dollars. But you should at least be given the option.

    Eva

    Thanks Eva!
    I agree, and I'm looking into a 2nd opinion today. Unfortunately, being on government insurance means nobody want to see me... I just need to to calm down, pray and do the best I can... Thanks!
  • Texasgirl10
    Texasgirl10 Member Posts: 668
    #4
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    Corinna11 said:

    Thanks Eva!
    I agree, and I'm looking into a 2nd opinion today. Unfortunately, being on government insurance means nobody want to see me... I just need to to calm down, pray and do the best I can... Thanks!

    I am so sorry
    I am so sorry that you are going through this. I agree with you, four months is a very long time to wait. I am just dumbfounded and speechless about this. What does your onc say? I saw your post where you said that you will be getting a 2nd opinion and I am glad. Please do not put this off.

    I will be praying for you. Please keep us posted.

    Dawne
  • MAJW
    MAJW Member Posts: 2,510 Member
    #5
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    Corinna11 said:

    Thanks Eva!
    I agree, and I'm looking into a 2nd opinion today. Unfortunately, being on government insurance means nobody want to see me... I just need to to calm down, pray and do the best I can... Thanks!

    Waiting...
    That seems to be a long wait considering the type of bc...invasive dc...mine was invasive ductual also...I was dx on April 16, 2009....path showed Stage I..had a lumpectomy on May 19, 2009....by the time I had the lumpectomy I went from Stage I to Stage II ...this is a fast growing type of bc...I had a normal mammo and ultrasound less then 3 months before finding it myself..!

    You said you're an RN...when I worked we always had what's called Professional Courtesy with physicians and surgeons....no wait for appts and seen sometimes the same day...and if it wasn't a "no charge" it was nominal....or only what my insurance would cover....do you not know any physicians on a professional or personal level that you could consult with? Where were you or are you working? Surely someone would see you sooner...

    Wishing you better days
  • LoveBabyJesus
    LoveBabyJesus Member Posts: 1,679 Member
    #6
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    Don't Wait
    Hi Corinna -- Where do you live?

    You can't wait this long. This is what I did. I went for a second opinion. Got my pathology report, including the tissue that was removed from me and took it to Memorial Sloan Kettering (good place! - and they take govt. insurance)for them to review again. It turned out it was invasive breast cancer, grade 3 like you. I pushed them so hard to remove this tumor from me ASAP! they too did the BRCA test for me, but I was so nervous I didn't wait for results. I just removed tumor and if I wanted to remove breasts later (according to the BRCA results) I would have.

    It it IMPORTANT to know your pathology results well before you listen to a Dr. tell you to wait all this time. Is he for real?!!??! Grade 3 is agressive (not to scare you) - but 4 months seem too long. You need to be ahead of the game with this as cancer doesn't care. Please get a second opinion, and know your surgeon before you decide to go with him. Also, it would be helpful if you can make sure he/she is an Onco breast surgeon as they have more exp. with this type of surgery. But I know many pink sisters have also had good exp. with regular surgeons. I sugest you do a posting about recomendations for the state you live in.

    Please ask whatever questions you want. We are here to help you and support you.

    Good luck!

    p.s. If you live in NY I can talk to you over the phone.
  • Rague
    Rague Member Posts: 3,653 Member
    #7
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    Corinna11 said:

    Thanks Eva!
    I agree, and I'm looking into a 2nd opinion today. Unfortunately, being on government insurance means nobody want to see me... I just need to to calm down, pray and do the best I can... Thanks!

    What kind of Gov't insurance?
    I've never had any problem with Drs refusing to see me with Tri-Care. Nor was there any problem with all my Drs with cancer care which was through VA.

    Susan
  • Corinna11
    Corinna11 Member Posts: 75
    #8
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    Rague said:

    What kind of Gov't insurance?
    I've never had any problem with Drs refusing to see me with Tri-Care. Nor was there any problem with all my Drs with cancer care which was through VA.

    Susan

    TENN Care Medicaid
    Susan, I have Medicaid through Tennessee. Must qualify by low income which I have now since I'm not employed. So many hoops to jump through. Waiting to talk to right persons, person I leave message with won't call back, etc. It's a nightmare.
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #9
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    my journey with BC started
    Jan 2008 by the time called back for mammo, biopsy etc I didn't have surgery UNTIL April 3rd 2008 (so about 3mths)
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #10
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    my journey with BC started
    Jan 2008 by the time called back for mammo, biopsy etc I didn't have surgery UNTIL April 3rd 2008 (so about 3mths)
  • Corinna11
    Corinna11 Member Posts: 75
    #11
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    LoveBabyJesus said:

    Don't Wait
    Hi Corinna -- Where do you live?

    You can't wait this long. This is what I did. I went for a second opinion. Got my pathology report, including the tissue that was removed from me and took it to Memorial Sloan Kettering (good place! - and they take govt. insurance)for them to review again. It turned out it was invasive breast cancer, grade 3 like you. I pushed them so hard to remove this tumor from me ASAP! they too did the BRCA test for me, but I was so nervous I didn't wait for results. I just removed tumor and if I wanted to remove breasts later (according to the BRCA results) I would have.

    It it IMPORTANT to know your pathology results well before you listen to a Dr. tell you to wait all this time. Is he for real?!!??! Grade 3 is agressive (not to scare you) - but 4 months seem too long. You need to be ahead of the game with this as cancer doesn't care. Please get a second opinion, and know your surgeon before you decide to go with him. Also, it would be helpful if you can make sure he/she is an Onco breast surgeon as they have more exp. with this type of surgery. But I know many pink sisters have also had good exp. with regular surgeons. I sugest you do a posting about recomendations for the state you live in.

    Please ask whatever questions you want. We are here to help you and support you.

    Good luck!

    p.s. If you live in NY I can talk to you over the phone.

    Thanks I will take your advice.
    I live in TN and will post for recommendations for this area. Thanks! =)
  • Corinna11
    Corinna11 Member Posts: 75
    #12
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    MAJW said:

    Waiting...
    That seems to be a long wait considering the type of bc...invasive dc...mine was invasive ductual also...I was dx on April 16, 2009....path showed Stage I..had a lumpectomy on May 19, 2009....by the time I had the lumpectomy I went from Stage I to Stage II ...this is a fast growing type of bc...I had a normal mammo and ultrasound less then 3 months before finding it myself..!

    You said you're an RN...when I worked we always had what's called Professional Courtesy with physicians and surgeons....no wait for appts and seen sometimes the same day...and if it wasn't a "no charge" it was nominal....or only what my insurance would cover....do you not know any physicians on a professional or personal level that you could consult with? Where were you or are you working? Surely someone would see you sooner...

    Wishing you better days

    MAJW
    The Professional Courtesy sounds wonderful! I'm in TN and will have to look into it. I'm going to the same hospital I used to work at - although a different dept. - just wish I didn't feel so alone here...
  • aysemari
    aysemari Member Posts: 1,596 Member
    #13
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    Hello Corinna
    Welcome to the most fabulous club that nobody wants to belong to.
    But I am certainly glad you found us so early on your journey.

    It seems too long of a wait to me. My surgery was within one week
    of my diagnosis. My surgeon whom I adore, was very vehement in
    talking me out of my long planned trip to europe. He told me with
    me being so young the cancer tends to be more aggressive.

    If I were you I would insist on an earlier date and not wait. But I can
    only speak from my own experience.

    Best of luck to you and we are here whenever, whatever!

    Hugs,
    Ayse Ozkaya
  • deeb111
    deeb111 Member Posts: 141 Member
    #14
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    i was diagnosed in
    i was diagnosed in feburary but initial find januaryfrom mammo just had surgery april so they do sometimes wait

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