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MATRIX PRODUCING CARCINOMA VERY RARE

arkansasgirl
arkansasgirl CSN Member Posts: 84
in Breast Cancer #1

 

Hi PINK ladies

I attended a BREAST CANCER SURVIVOR LUNCHEON today and it was totally awesome. My  BC surgeon was there and

told me there was someone from Tennessee that had been diagnosed with the same type of BC and was trying to locate me.

My BC is very rare - less than 5% has this type  and chemo and radiation has no effect. If you know anyone please

let me know.

I live in Texas.

Thanks

Arkansasgirl

 

 

 

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Comments

  • CypressCynthia
    CypressCynthia CSN Member Posts: 4,014 Member
    #2
    I don't know anything about

    I don't know anything about this type, but just wanted to say good luck.  Sending hugs and prayers!

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  • cinnamonsmile
    cinnamonsmile CSN Member Posts: 1,187 Member
    #3
    breastcancer.org

    I am not sure if you are aware of breastcancer.org, a website only devoted to breast cancer. There different aspects of breast cancer are divided into different forums.

    You may want to post in the forum called "Less Common Types Of Breast Cancer." I look at both sites.

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  • arkansasgirl
    arkansasgirl CSN Member Posts: 84
    #4
    cinnamonsmile said:

    breastcancer.org

    I am not sure if you are aware of breastcancer.org, a website only devoted to breast cancer. There different aspects of breast cancer are divided into different forums.

    You may want to post in the forum called "Less Common Types Of Breast Cancer." I look at both sites.

    I did not know  about that

    I did not know  about that sight - so thank you.. My BC surgeon told me someone who had been diagnosed the same type as me had seen my post on here and was trying to locate me... I think this person is from Tenn. I have not been on here in a few years.

    My type of cancer is very rare. I have been going  to MD Anderson  every 3 months because even though Ive been  cancer free for 3 years - a mass developed on my left adrenal gland and it was the same kind of cancer as my breast cancer. I lost my adrenal gland and spleen in Aug 2012. This cancer flys under the radar - my blood work is always perfect...It's not detected unless a mass has formed and it's caught on a ct scan.

    But as of the last year I'm cancer free again.

    thanks

    Arkansasgirl

     

     

     

     

     

     

     

     

     

    But thanks for the info.

     

     

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  • eihtak
    eihtak CSN Member Posts: 1,473 Member
    #5
    arkansasgirl said:

    I did not know  about that

    I did not know  about that sight - so thank you.. My BC surgeon told me someone who had been diagnosed the same type as me had seen my post on here and was trying to locate me... I think this person is from Tenn. I have not been on here in a few years.

    My type of cancer is very rare. I have been going  to MD Anderson  every 3 months because even though Ive been  cancer free for 3 years - a mass developed on my left adrenal gland and it was the same kind of cancer as my breast cancer. I lost my adrenal gland and spleen in Aug 2012. This cancer flys under the radar - my blood work is always perfect...It's not detected unless a mass has formed and it's caught on a ct scan.

    But as of the last year I'm cancer free again.

    thanks

    Arkansasgirl

     

     

     

     

     

     

     

     

     

    But thanks for the info.

     

     

    arkansasgirl....

    Hi, I just wanted to say I also recommend that site. My breast cancer is also rare....secretory carcinoma. It accounts for less than 1% of all breast cancers and also seems to fly under the radar. Mine was only found on a follow-up PET scan for anal cancer treatment, and was determined that I had it for over 10 yrs. Chemo/rad was not an option and I had a double mastectomy. I have been well for just under 2 yrs now. I was able to locate a couple people treated for this cancer on the breastcancer.org site under less common or (rare). Glad to hear you also have been cancer free.

    Stay well.........

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  • arkansasgirl
    arkansasgirl CSN Member Posts: 84
    #6
    eihtak said:

    arkansasgirl....

    Hi, I just wanted to say I also recommend that site. My breast cancer is also rare....secretory carcinoma. It accounts for less than 1% of all breast cancers and also seems to fly under the radar. Mine was only found on a follow-up PET scan for anal cancer treatment, and was determined that I had it for over 10 yrs. Chemo/rad was not an option and I had a double mastectomy. I have been well for just under 2 yrs now. I was able to locate a couple people treated for this cancer on the breastcancer.org site under less common or (rare). Glad to hear you also have been cancer free.

    Stay well.........

    Thanks - but I looked on

    Thanks - but I looked on there and did serach but came up with nothing.  I will try again though.

     

    Take care ===

     

     

     

     

     

     

     

     

     

     

     

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