Nervous Wreck

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  • toomuch
    toomuch Member Posts: 901
    edited November 2011

    Nancy - I agree WTH!!!! Local recurrances are just that, local recurrances and that doesn't make them stage IV. Skin involvement does cause the BC to be categorized as stage 3. I agree with you that it's time to look for a new onc! Ofcourse, you were stunned when the MO said this but it sounds to me that he was talking off the top of his head and not making a statement based on evidence based medicine. I bet he couldn't supply you with any published research data to support it. Women who are Stage 3 and are treated have a greater then 50% chance for survival and so do you! We all have fear. I hope that you can push yours back this holiday weekend and enjoy the time wiith your family! Sending cyber hugs.

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  • IllinoisNancy
    IllinoisNancy Member Posts: 722
    edited November 2011

    Dear Wallycat and Toomuch,

    Thank you so much for your responses. I could not believe he said Stage 4.  When I questioned him about it and said I thought that was for distant mets he said no it is for any recurrence of BC.  He is supposed to be knowledgeable and works out of the Peoria Oncology Dept in Peoria, IL which is affiliated with the Susan Koman Center.  He made me feel like I am defeated again.  My DH was mad that I pushed for a stage but the reason I did was because I figured he would say 3 or less.  I never dreamed in a million years that he would say 4.  My recurrence was on the left breast right where the first BC was.  I feel like I want to prove him wrong more than ever.  I would really appreciate you asking your MO's if this is the way they stage it.  Today is my DH and my 30th wedding anniversary.  I was hoping for at least another 10 but now I'm wondering about making another year.  I appeciate your support and value your opinions.

    Love,

    Nancy

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  • wallycat
    wallycat Member Posts: 3,227
    edited November 2011

    Happy Anniversary, Nancy!

    None of us is guaranteed any time, cancer or no cancer so we live each day and try 

    to enjoy it!!

    My WI onco used to say that if you walk into a Walgreens, you have no idea how many of the women (or men) walking around the day you walk in will be dx with breast cancer that week....so ANYONE can get cancer, even those never dx.  That's what happened to us initially, no?

    And if you read some of the stories of women with stage 4 that have 10 or 20 years under their belt, there is no reason to assume stage 4 means anything than a medical term.

    I will email my onco here in WA and ask her what she would define it as and report back.

    I guess maybe your husband may be right in not asking or knowing...why mentally defeat yourself.  I just reread an old private message from Matic asking me if I had pleomorphic because of my high oncotypedx score and then I read some othe rpost here about ER and how high it can score and I freaked out that I maybe have a more aggressive cancer than I mentally accepted.  I ended up NOT going back to my pathology report and am just trying to focus on the day to day.

    If I found out I had more aggressive cancer, what would that garner me?  More worry? fear?  in the end I cannot control how tings will turn out so why not live in a little denial and enjoy the journey.

    Just my humble opinion.

    xx00

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  • wallycat
    wallycat Member Posts: 3,227
    edited November 2011

    Hi Nancy, me again...sorry for so many posts Embarassed

    (I meant "things" in my previous post...typo).

    I just got an email back from my onco ...isn't she wonderful?? responding the day after Thanksgiving!  I think her use of "cureable" means that it has resolved in terms of the local/regional aspect---but I pasted exactly what she typed...OK, I copied and pasted exactly what she typed from my email: 

    ----------

     No, a local, regional recurrence is NOT stage IV. It can be treatable and curable.
    I think we all have a difficult time with assigning a "stage" to a patient who has had a local recurrence. In the absence of evidence of any distant spread, though, I would say it is NOT stage IV.
    Hope this helps...

    Dr. M

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  • Gitane
    Gitane Member Posts: 1,885
    edited November 2011

    Hi Nancy,  I'm so glad Wallycat contacted her onc and got the professional word on this. IMHO there was disease left behind in your breast that ultimately spread into your skin.  This local recurrence in IMHO does not indicate systemic spread and you are NOT stage 4.  Hugs and more hugs!!!   G.

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  • path49
    path49 Member Posts: 2
    edited November 2011

    Nancy, I just went through MX surgery (Sept. 20) for breast cancer for the second time. Some people called it a recurrence but my oncologist said it was  a new breast cancer since it was not in the same location as the original BC. The original BC was 16 years ago. At no time did my breast cancer doctor or my oncologist say that I was automatically stage 3. My BC Dr. does not like to depend on stages for treatment because he says there are many more factors involved in treatment than just staging. He is such a positive thinker that I don't think he wants his patients to get depressed if they are in stages 3 or 4. He has experienced over the years many people classified in those stages do just fine. I went through all of those tests that you mentioned including the Oncotype, BRCA, tumor markers, MRI and I don't even remember what else. I understand how difficult it is to be patient while going through all of that. I also had the appt. with the plastic surgeon and that made me very nervous too. I opted for no reconstruction and have been happy with that so far. My next part of treatment is the hormonal therapy with Arimidix. Try to stay positive and take one day at a time. Hang in there and be strong. I'll be thinking of you. 

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  • IllinoisNancy
    IllinoisNancy Member Posts: 722
    edited November 2011

    Dear Wallycat and friends,

    Thank you so much for checking with your onc.  I wish I had yours instead of mine!  You have put my mind at ease and confirmed my belief that I am not stage 4 when I have clean nodes and clean PET scans and clean MRI's.  I am so thankful for all of my friends on this site.  I wish I could meet some of you.  I know we would have a wonderful time.

    Love you,

    Nancy

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  • toomuch
    toomuch Member Posts: 901
    edited November 2011

    Nancy - I'm glad that you're feeling better again! You will have a long relationship with your MO and I hope that you are still considering meeting with some new  ones!

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  • IllinoisNancy
    IllinoisNancy Member Posts: 722
    edited December 2011

    Hi Friends,

    Thought I would check in with all of my ILC ladies.  I hope all of you have a wonderful Christmas and are able to enjoy your family and friends. I'm looking forward to having my family together and hope that we all have many more Christmas's ahead of us.  I find myself in a dark place sometimes where doubt and worry take over but I try to keep positive.  I know everyday is a gift and we need to enjoy the time we have. 

    Love,

    Nancy

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