CSN Login
Members Online: 4

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

Posts: 1057
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: 1156
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: 1057
Joined: Oct 2011

Thankyou I will give that a try!

Noel's picture
Posts: 3101
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.


Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2016 © Cancer Survivors Network