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MATRIX PRODUCING CARCINOMA VERY RARE

arkansasgirl's picture
arkansasgirl
Posts: 84
Joined: May 2009

 

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

 

 

 

CypressCynthia's picture
CypressCynthia
Posts: 3954
Joined: Oct 2009

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

cinnamonsmile
Posts: 1049
Joined: Dec 2010

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.

arkansasgirl's picture
arkansasgirl
Posts: 84
Joined: May 2009

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.

 

 

eihtak
Posts: 833
Joined: Oct 2011

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.........

arkansasgirl's picture
arkansasgirl
Posts: 84
Joined: May 2009

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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