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Rare breast cancer follow-up question?????

Posts: 1255
Joined: Oct 2011

So.... one year ago I had a double mastectomy for Secretory Carcinoma of the breast. This is a rare BC accounting for less than 1% of ALL breast cancers! It is often missed on mammograms and was found when I had a follow-up PET scan for Anal Cancer (diagnosed and treated just 1yr prior). A while back I registered with NCCN just to become more familiar with treatment guidelines and follow-up care for the AC. I am having a difficult time finding any info on protocal follow-up, ex. scans, x-rays, etc. for my BC. I did not receive chemo or rad for the BC but did both along with a colostomy for the AC. I am taking Anastrozole (Arimidex), and Alondronate, along with iron, calcium, and Vit.D.  I trust my doctor, and feel great, just like to know what "standards" are and kind of make sure I am having everything I am supposed to. It is difficult to even find any info on "Secretory Carcinoma" in specific, so anything you have would be appreciated.

Posts: 1191
Joined: Dec 2010

If I were you, I would post this on breastcancer.org as well. They have a forum just for rare breast cancers called LESS COMMON TYPES OF BREAST CANCER. I always use both sites. 

I hope you find some information. I, too, had problems finding protocols for the type of cancer I had paired with the treatment surgery I chose.It took a lot of googling and digging and I still find conflicted information on the internet and with the "new" breast surgeon I saw who is supposed to be newly graduated within the past 5 years.

I was sure that when I googled, I only used sites that I knew were credible.

Posts: 1255
Joined: Oct 2011

Thankyou I will give that a try!

Noel's picture
Posts: 3100
Joined: Apr 2009

Breastcancer.org can probably help you a lot more as they do have separate topics and a lot more responders.  I wish I could help you out.

Good luck and I hope you get some answers.  Let us know if you do.


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