Local Recurrence after Lumpectomy and declining further surgery

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bellydancer
bellydancer Member Posts: 59
edited July 2014 in Just Diagnosed With a Recurrence or Metastasis

Anyone in this position and care to share your story?  Did you do chemo or hormone therapy instead?

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  • Momine
    Momine Member Posts: 7,859
    edited July 2014

    Why are you declining surgery? Typically surgery is the most important part of treatment.

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  • barbe1958
    barbe1958 Member Posts: 19,757
    edited July 2014

    For my original cancer I just had surgery and no other treatment. That is the most important part!!! I agree with Momine, why wouldn't you get it OUT???

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  • Jujube43
    Jujube43 Member Posts: 178
    edited July 2014

    I was just diagnosed with a recurrence on July 11th.  For now I'm on hormone therapy. My onc says we will likely be doing more chemo soon. I forgot to ask him about surgery, but it's at the top of my list of questions when I see him on August 15th.  I just finished rads on May 9th,  so,this was a rapid recurrence. I really, really, want this out of me...

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  • barbe1958
    barbe1958 Member Posts: 19,757
    edited July 2014

    Juane, are they sure it's a recurrence and not just residual from the original cancer? How the heck did they find it??? I do know that if I recur, I will be put on hormonals as well. But I'd still want the lesion excised, that's for sure.

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  • Kudra
    Kudra Member Posts: 85
    edited July 2014

    belly dancer,

    This is such a personal decision. It would be interesting to know your thoughts on surgery.

    I refused surgery from the get go, but I started stage 4 with mets.

    I went on Faslodex and Arimidex with xgeva for bones. That worked well for a year and a half.

    I have now stopped all treatment and will start taking Estradiol within the next week. 

    Estradiol can sometimes make your hormone receptors sensitive to antihormonals again.

    I am a "quality over quantity" kind of person. I have refused a lot of treatments for that reason.

    Obviously we are all different in where we start this journey and what our picture of quality is.

    Please keep us posted, and again it would be interesting to know your particular reasons for not wanting surgery.

    Much love to you!

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  • barbe1958
    barbe1958 Member Posts: 19,757
    edited July 2014

    Kudra, most stage IV from the get-go don't get surgery. I never did understand that, but you are not alone. In fact, I know of women who wanted surgery and they were NOT approved!!! 

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  • Kudra
    Kudra Member Posts: 85
    edited July 2014

    Well,Barb, I actually was pushed pretty hard to have surgery ( a mastectomy) before I was properly diagnosed.

    Thankfully  I don't just do something because I'm told to by a doctor to do it and I refused. Not long after I went to Moffitt Cancer Center in Tampa and got properly diagnosed.

    I also have stage one cervical cancer and was pressured to get a radical hysterectomy which I also refused.

    Although it's not a widely accepted concept, there are highly respected oncologists that don't think invasive surgery( such as mastectomies) are a proper first line treatment regardless of the stage.

    I understand that most people believe in surgery, radiation and chemo as the way to go. 

    But not everyone. 

    It is a very personal decision.

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  • Tomboy
    Tomboy Member Posts: 3,945
    edited July 2014

    i was told that if i had a recurrence, that i would have to do mastectomy. at lunch with slowdeepbreathes the other day (YAY!), we had told each other that all we would want is another lumpectomy. which is why i really didnt want to do radition, either. but apparently, since there are standards of care, they own your ass and do what they want. my bs told me she would not do lumpy unless i agreed to rads. why not? why not what i want? and, also encouraged me to be quick about it, even though it had already been there 8 years. thats what they said. i find myself getting angrier and angrier. And, since pre-surgery pet scan showed some other unusual things, what ever happened to them? was/am i really stage four?

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  • Tomboy
    Tomboy Member Posts: 3,945
    edited July 2014

    like barbe, juana, i do want to know how they found a recurrence so soon?

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited July 2014

    I think you can make a case for doing chemo first. If you can shrink or eliminate the tumor, than I would think that minimized the amount that has to be removed.

    Is freezing a possibility? 

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  • Kudra
    Kudra Member Posts: 85
    edited July 2014

    Kathec, 

    Is it possible to switch to another hormonal therapy? Like Cookiegal said, if they could shrink the tumor maybe they would consider a lumpectomy at that point. Just wondering. I'm all for research, discussing with your docs and then doing what You feel is right for you.

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  • Momine
    Momine Member Posts: 7,859
    edited July 2014

    Kudra, I am curious as to who these oncologists are who reject mastectomies so categorically.

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  • Jujube43
    Jujube43 Member Posts: 178
    edited July 2014

     Barbe and Kath, I was having a PET scan at the end of all treatment to be sure my cancer was all gone prior to going on a hormone drug. I was so hoping for NED, as we all are.  It showed up in the scan along with something on a lymph node. I am planning on asking my onc about it being residual rather than a recurrence when I see him. I have a very long list of questions for him...

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  • lovetodance1
    lovetodance1 Member Posts: 62
    edited July 2014

    It is either a recurrence or new primary because there was still breast tissue left after lumpectomy but regardless, it is pretty obvious you should take a very aggressive course now. It is a very personal decision but I would definitely do BMX and chemo now. Be aggressive, cancer does not give second chances

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