• Inflammatory Breast Cancer Follow Up

    Asked by DYTYBR on Friday, May 31, 2013

    Inflammatory Breast Cancer Follow Up

    I am a month out from radiation treatment following chemo and double mastectomy. I don't see my docs again till August. I was wondering if you have IBC: what follow up was recommended including blood work, scans, etc. and how often? How do they determine recurrence rate? If you had a recurrence, what symptoms did you have?

    My husband was diagnosed with colon cancer last year and has blood work every 3 months but I don't! I was told that if my BC reoccurs it will have metastasized to the brain, bones or liver.

    Obviously, just a little (oh, a lot) nervous now that I am done with active treatment but for Tamoxifen. Hence all the questions! Thank you!

    8 Answers from the Community

    8 answers
    • Ydnar2xer's Avatar

      This sounds like a good question for Carm or for your doctor. I wouldn't be comfortable "being released" from my doc if I had gone through the same thing as you. Can you call his nurse & ask why there isn't a follow up sooner? I sure would be curious about that, especially w/ IBC. Good luck.

      over 4 years ago
    • DYTYBR's Avatar

      Thank you so much for responding. I think I am going to schedule with my Oncologist before August as I have so many questions. I remember he said to give myself permission to have normal aches and pains (but I don't know what normal is anymore) and that I might be emotional once treatment was over. So yes I am there. Thanks again!


      over 4 years ago
    • Topazcat's Avatar

      I was diagnosed with IBC in November 2010 and had 16 weeks of chemo, double mastectomy, 22 lymph nodes removed from left arm. I get a PET scan every 6 months and see the oncologist every 3 months. I have been cancer free for almost 2 years, but found out Friday that the cancer was back and had metastasized to my hip and spine. Good luck to you. Try not to worry so much that iy ruins your enjoyment of each day. I know that is not easy to do, but life is for living while we can!

      over 4 years ago
    • DYTYBR's Avatar

      Sending you a big hug! I saw your post this morning. Thank you for taking the time to respond to my question. I am scheduling today with my Onc but as you say need to live life!

      over 4 years ago
    • Roo's Avatar

      Hi Sandy,
      I was diagnosed with IBC in May 2012. My cancer was triple negative.
      It was in my left breast. I had 8 chemo treatments over a 16 week
      Period. The first 4 treatments were AC followed by 4 treatments of
      Taxol. One month later I had a Bi-lateral Mastectomy with 15 axillary
      Nodes removed from my left side. The Pathology report came back
      That I had had a complete response. PTL! 4 weeks later I started
      Radiation for 6 1/2 weeks. They really put it to me due to the aggressive
      Nature of my cancer. My last radiation was November 28th.
      I see my Onc every three months for a blood test and my Rad Onc
      and every three months. Every 6 mos my Breast surgeon does an
      Ultrasound. I recently got a rash on my radiated side and went to my
      BS and although she doesn't think it is reccurance, she did do a punch
      Biopsy last Thursday. I am waiting for the results. Meanwhile my rash
      Is very itchy. Sorry this is long but I wanted you all to know my story.

      over 4 years ago
    • DYTYBR's Avatar

      Thanks for responding! I was diagnosed last July and began treatment in August (4 AC and 12 Taxol) followed by a month break too then double mastectomy and radiation 8 weeks after surgery. I am scheduled for follow up in August with all my docs but it seems too long away so I am going to move up my appointment with my Onc. He released me to my Radiation Onc but didn't share specifics on how he would follow me. Good luck with results of rash. Keep in touch!

      over 4 years ago
    • jtsmom91500's Avatar

      DYTYBR, your journey sounds about the same as mine. I had the 4 AC and 12 Taxol followed with surgery after a month break. I am now recovering from surgery and will start radiation soon- 30 doses- 8 weeks post surgery.

      I am, like you, concerned about the follow ups. In my mind, I should get scans and at least bloodwork once and a while but my Dr.s say only if I have pain. (Well, if I have pain isn't that a little late?!?) They are blaming the insurance company. I am scheduled to see my Onc at the end of January so she can start me on Femora, but that's it.

      How are you doing?

      almost 4 years ago
    • DYTYBR's Avatar

      Hi @jtsmom91500,
      I am so glad you found me! I am doing well! Thank you! I have read through your wall and yes we have a similar experience except that I did have reconstruction (a tram flap). I wasn't given any warnings to wait till after I had already done it unfortunately. But so far so good! I went to see Dr. Cristofanilli, supposedly an "IBC expert" for a second opinion about the monitoring piece and he really alarmed me about my reconstruction. But I went back to my team and they answered all my questions. I am really happy with my team of docs. I am headed back to surgery Dec. 9th to finish up reconstruction...it's just a day procedure! I have been on Tamoxifen since last February and doing fine. I have what I consider my "new normal" of aches and pains but it's all doable. I haven't been on the site as much as I use too so I am forgetting how to share emails privately. If you know how, give me a shout with your email and I will respond. I can't even remember how to follow someone! It's the chemo brain, still! LOL! I hope to hear from you again!

      almost 4 years ago

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