Looking for onc. recommendations. Someone a little bit special.

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TectonicShift
TectonicShift Member Posts: 752
edited December 2015 in Stage III Breast Cancer

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    • mary625
      mary625 Member Posts: 1,056
      edited December 2015

      Hi, TS. I'm going to PM you about Seattle Cancer Care Alliance.
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    • TectonicShift
      TectonicShift Member Posts: 752
      edited July 2020

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    • weesa
      weesa Member Posts: 707
      edited December 2015

      No....No..., TS! Reading this feels like a kick in my gut.

      I don't have any suggestions for you--I had a great cutting edge onc but he has retired.

      Ask some of the stage 4 ladies who have done well if they would recommend their onc.

      Am curious just how high your CTC's are if you would care to share.

      Always admired you from afar, Weesa

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    • TectonicShift
      TectonicShift Member Posts: 752
      edited July 2020

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    • lkc
      lkc Member Posts: 1,203
      edited December 2015

      Hi TS,

      Yes bc does suck, and I am sorry that your ctcs are elevated. I like your Onc. Approach. I was pretty much treated as. Stage IV too.

      I had 12 pos nodes, both axillary and sentinel nodes completely replaced by tumor and no clear surgical margins. I stayed on Herceptin for 6 years and did annual PETs for 5.

      I was txed in Florida initially and then moved back to my home in the Bahamas for my Herceptin.

      I think the key is what mutation is driving your ctcs to be elevated. In my case it was the Her2 amplification. Have you considered getting an expanded panel for DNA mutations. There are tests outthere for 22-25 .

      I pushed very hard for my treatment and getting on board with a progressive Onc is the way to go. ( I do think your current Onc has been great)

      Also you are kind of in a grey area for clinical trials, as you are not technically a stage IV. However you could take a look at the trials for stage III, and see if you fit.

      Www.clintrials.gov. Insert stage III breast cancer, and all studies will pull up with their location.

      I can send you my Oncs information as well.

      Stay positive. I don 't believe you will progress to stage IV, if you get the magic bullet for your mutation.

      My thoughts and hugs are going out to you.

      linda





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    • LisaAlissa
      LisaAlissa Member Posts: 1,092
      edited December 2015

      I don't have any suggestions for you, but if your current onc. is cutting edge (and you like him!), he's probably going to the conferences/has colleagues who are also working at the cutting edge. Why not ask him who he would suggest if you ever needed a new onc.? Tell him that you're scared about who would give you care as good as his if you ever needed a new one.

      That would give you another source of reccomendations.

      Just an idea...

      LisaAlissa

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    • TectonicShift
      TectonicShift Member Posts: 752
      edited July 2020

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    • Kathleen26
      Kathleen26 Member Posts: 210
      edited December 2015

      Wow, TS, so sorry to hear about this. I hope that finding these elevated CTCs before they set up shop somewhere gives you a good fighting chance to knock them out. Please keep in touch with us and let us know how you're doing.

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    • TectonicShift
      TectonicShift Member Posts: 752
      edited July 2020

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    • hopefour
      hopefour Member Posts: 459
      edited December 2015

      Tectonicshift, I so admire your fight and all you have done to stay in remission!! Maybe these CTC will just stay that and become nothing! Have you looked into the copper issue as well as diet for TNBC. Seems I remember the studies showing it to being pretty effective!! Praying you stay in remission for lots of years to come!!

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    • TectonicShift
      TectonicShift Member Posts: 752
      edited July 2020

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    • weesa
      weesa Member Posts: 707
      edited December 2015

      TS, what is the "copper issue?"

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    • TectonicShift
      TectonicShift Member Posts: 752
      edited July 2020

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    • YATCOMW
      YATCOMW Member Posts: 664
      edited December 2015

      With an 8cm tumor and 17 nodes I traveled throughout the US to find an oncologist that thought they could help....Nancy Brinker from Susan G. Komen opened many doors for me and I saw...

      Clifford Hudis at Memorial Sloan Kettering...one of the top doctors there

      Dr. Hortobagyi...MD Anderson....the top doctor there

      Also saw a Dr. Gonzales at MD Anderson and liked her a lot.

      As you know I ended up where you are with Dr. Blumenschein (since retired) because of all the places I visited I felt they were the most aggressive and were determined to keep you in good health.

      The downside in some of the big cancer centers is that they want to throw you into any random clinical trial.....I just didn't feel they had my individual interest at heart.

      Jacqueline

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