Just found out I have brain mets..

cro256
cro256 Member Posts: 5
edited June 2014 in IBC (Inflammatory Breast Cancer)
Just found out I have brain mets..
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  • cro256
    cro256 Member Posts: 5
    edited September 2011

    Hi everyone,



    I joined this site last year, but only recently have I really desired and craved the support and understanding with others in my similar situation. I have spent the morning reading stories...and it really helps. I feel a connection with people whom I never even met!



    Let me give a quick background of my cancer's progression. After months of no one listening to me about my cancer that I self diagnosed with in September of 2009, I finally met a breast surgeon in February 2010 who listened and ordered an incisional biopsy stat. The results showed what I already knew in my heart of hearts--inflammatory breast cancer. I was then sent to get pet/ct scans and discovered that I had bone mets. I immediately started chemotherapy treatment but was told that a mastectomy wasn't in the cards due to the cancer already being in my bloodstream.



    I was seeing an oncologist who was very nice and owned her own little office. It was small and cozy and everyone knew everyone. I have been through many various forms of chemotherapy. Taxotere, carboplatin, herceptin. Tykerb and xeloda. Herceptin and navelbine. Also received zometa and Ghent xgeva for the bones. However, I was always told the bone mets were getting worse. Most recently, the breast cancer got a lot worse, spreading to the lymph nodes under my arm and up my nevi and my ctc was getting worse too. But my oncologist was not informing of my ctc results. Then I went to Vegas with my hubby to get away from it all, and while I was gone, my oncologist received my most recent pet/ct scans. She did not make it a priority to push up my appointment to discuss the important new findings with me.when she finally saw me, she wouldn't show me the scans and just told me that the cancer was spreading up my spinal cord and wanted to start abraxane. The last straw was when I complained of severe headaches to her and she brushed me off....



    I decided it was time for a move. A friend told me off Dr. Cristofanilli who is at fox chase cancer center in Philadelphia who specializes in IBC. It took some time, but I finally got my appointment with him and truly felt that this is where I belonged. He immediately ordered another ctc test, a very painful core needle biopsy, a breast MRI, a spine MRI, and a brain MRI. Insurance if course made me jump through hoops, but I got all of these things done...not all were comfortable, but my old oncologist never suggested half of these tests! On this past wednesday, after my brain MRI, I waited in the lobby for my scans when I received a phone call from my new oncologist wanting to admit me to the hospital because the brain MRI showed cancer spread to the brain. I felt like my world crashed down around me. Although I was glad my new doctor was listening and found what might have never been found with my old oncologist...it was scary and I didn't know who to turn to for truly, understanding support. Don't get me wrong, I have a great family and friend support system, but there's only so much they can relate to right now.



    I am now in the hospital still. Really hoping to get discharged today! I'm a kindergarten teacher and their first day is Tuesday and i really want to be there! Need the money too! I've been receiving steroids to reduce the swelling in the brain. And yesterday I got fitted for my scary, but cool, radiation mask and got my first radiation treatment. I will continue this for 10 treatments, then on to chemotherapy. But my oncologist dropped another bombshell on me yesterday afternoon. My ctc test showed 400 circulating tumor cells. I am so so so scared...but I put on a brave face for everyone. If anyone has words of wisdom or inspiration or any knowledge, I am open and ready to talk! By the way, my name is Casey. I am 31. Married a year and a half ago on a cruise and I live right outside of Philly. Thanks for reading this! Hearts and hugs to everyone battling, Casey

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  • Goodwife1
    Goodwife1 Member Posts: 7
    edited September 2011

    Hi Casey,

     I also just changed to Dr.C. I was misdiagnosed for 10 months.  I know what you are going through.  I live near Doylestown Pa.  My story is a little similiar. Private message me and we can talk. 

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  • Claudia413
    Claudia413 Member Posts: 114
    edited September 2011

    Casey,

    Although I did not have Dr. C as my doctor, I know you're in good hands with him. There's nothing like talking to someone who's walked in your shoes and really understands what you're going through. You're in my thoughts and prayers as you continue on your journey. I know that one day I could be in your shoes and would also be reaching out to others who have been there, done that, and lived to tell about it.  

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  • Suze35
    Suze35 Member Posts: 1,045
    edited September 2011

    Casey - I do not have IBC, but I read your post, and am so sorry you have had to go through so much.  I strongly recommend you also post on the Stage IV board, there are many women there who can offer support and encouragement for you.  Best wishes.

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  • chester2010
    chester2010 Member Posts: 101
    edited September 2011

    Casey, I'm so sorry you've had to go through all this.  You are so young, it's just not fair.  You sound very strong and have good family supports but it is a very scary and worrying time for you.  I hope you will be able to get to your class on Tuesday and now that you are in good hands with Dr. C I hope that the treatments will help you.  It makes me so sad to read of young vibrant women having to battle this horrible disease.  Thinking of you.

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  • DiamondGirl
    DiamondGirl Member Posts: 1,046
    edited September 2011

    Casey, I'm very sorry that you are going through this.  I echo what the other ladies said and I will keep you on my healing prayer list.  God Bless!

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  • mrsnjband
    mrsnjband Member Posts: 1,409
    edited September 2011

    Casey, so sorry to hear all that you have been through. I glad you have some one now with experience with ibc.  Sending lots of love & support. NJ

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  • ibcmets
    ibcmets Member Posts: 4,286
    edited September 2011

    Casey,

    I'm so glad you found Dr. C.  I hear he is the best with IBC and you should have had these test done long ago.  I'm on the West coast and love my onc and he immediately ran all tests before coming to any decisions on treatment for me.  I wish you much success with your treatments.

    Terri

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  • Laura_Jean
    Laura_Jean Member Posts: 48
    edited September 2011

    Casey:

    So sorry to hear that you are going through this.

    Dr. C is my doctor; we drive from Northern Virginia to Philly to see him. He is very thorough with all his testing much more so (I feel) than many other doctors. I am glad that you are getting the treatment that you need from him at Fox Chase. 

    Another board you may want to check out is www.ibcsupport.org. There are many wonderful women there with IBC and a lot of great advice and support.

    Good wishes going out to you,

    Laura Jean 

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  • chainsawz
    chainsawz Member Posts: 3,473
    edited September 2011

    Casey - you are definitely in the right place....we are here for you!  I haven't done WBR because I had 2 small brain mets 2 years ago, but there are many others here who have done WBR and are doing great!

    As for the circulating tumor test, mine came back as 8 when I was having lung progression so I'm not sure how much stock I put in those things?  Please keep us updated on how you are doing....

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  • cfisher41
    cfisher41 Member Posts: 1
    edited September 2011

    Casey,

    Hi my name is Charlotte and I was diagnosed with inflammatory breast cancer in Dec 2005. When it was found it had already gone into the bones from the skull to the hips through the rib cage etc. I took the normal course of treatment for 2 rounds then was switched to Gemzar and Herceptin for 52 weeks starting in January 2006. I was lucky that the treatment worked and I was in complete remission. I saw Dr. Cristofanilli at MD Anderson and was not impressed. I chose not to have surgery, my oncologist indicated that it would not be life prolonging and if the stats were correct I didn't want to spending 6 months to a year recovering. I stayed in remission for about 9 months. I started having pain in one leg and no other problems after a brain MRI it was found that there were 14 metastatic brain tumors. This took about 2 1/2 years and my last MRI in May showed all clear. I had 15 full brain radiation treatments and 4 cyberknife surgeries. I have taken several combinations of infusion and oral therapies but the combination of Tykerb and Xeloda seems to have had the best results. The MRI, CT's and PET showed a spot on the sacrum but the biospy came back negative.

    I am sure you have looked at the survival stats for IBC and add on mets and it is a gloomy picture. However the folks at MD Anderson said that I probably would not make it past 3 years. I did. After the brain mets I was told , with medication, the prognosis was 17 months. That was in December of 2008. I am at a Stage 4 terminal and I feel good and I owe it to physicans that took very good care and listened. Also a positive outlook and planning for the future has helped me greatly. Hope this helps

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  • lorieg
    lorieg Member Posts: 802
    edited October 2011

    Casey, I am so sorry for all you have been through.  Dr. C is great from all that I hear.  I see my local onc and go to MDA for care.  Best of luck to you.

    cfisher41, what an encouraging story for the rest of us!  Thanks for sharing and best of luck to you!

     Lori

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