Secretory Carcinoma of the breast

eihtak

Hi,

I first posted to this board a little over 5 years ago when dx with secretory carcinoma in my left breast. This is a rare cancer and still struggle to find much information regarding it. The year before my dx I was treated for anal cancer Stage 3b with surgery, chemo and radiation. It was on a 1 year follow-up PET scan that led to the breast biopsy and dx of this breast cancer.

The treatment recommended was a mastectomy and I chose to have a double. I was also put on Anastrozole (Arimidex) shortly after, so have been on that for over 5 years. I have had little to no complications (that are at least obvious to me or my doctors) from that drug. About 2 years ago I was dx with anal cancer mets to my lung and had a thoracotomy followed by aggresive chemo and as of "today" am doing well. As we all know, tomorrow can be a whole different story.

I saw my doctor today for a follow-up and he recommended stopping the Anastrozole, not because of any current side effect concerns, but just because he doesn't think it necessary to be on anymore. I have mixed feelings of stopping, as on one hand I feel it is a sort of safety net, and on the other, I question the adverse effect of being on any drug that could have negative consequences long term.

I am wondering if others have experience with secretory carcinoma (sometimes referred to as juvenile carcinoma...it is more common in children and men) and / or do you know if in my case it sounds usual to stop the Arimidex.

I appreciate any advice, and wish you all blessings of health and peace along this journey.

katheryn

eihtak

Just me again...

Hi all, 

Its just me again bumping this post up and really just still on a search for more information on secretory carcinoma. I have checked a couple other sites as well, but information is scarce. Thanks for the help.

katheryn

Apaugh

So sorry

Katheryn,

I am so sorry your not finding any answers to your questions.  I dont have any for you either.  Praying for you to find a good outcome.

Hugs,

Annie

Kats2

Second opinion time

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Hi eihtak, 

You have an unusual breast cancer and need more eyes to look into your situation. Definitely go for a second opinion at a well-known Cancer Center. I went to Dana Farber for my 2nd and 3rd opinions. They were 2 years apart as my medicines were changing and I wanted to know if this was the way to go. It's always good to get other specialists' opinions. For my 2nd time, the Oncologist disagreed with the drug my present Oncologist wanted to put me on. I'm now on that different drug. My Oncologist encourages other doctors' opinions. It's a win- win situation. Plus it's reassuring for you.

I encourage you to do this. Don't rely on just one doctor or facility.   Kats2

 

 

eihtak

Kats2 said:

Second opinion time

---

Hi eihtak, 

You have an unusual breast cancer and need more eyes to look into your situation. Definitely go for a second opinion at a well-known Cancer Center. I went to Dana Farber for my 2nd and 3rd opinions. They were 2 years apart as my medicines were changing and I wanted to know if this was the way to go. It's always good to get other specialists' opinions. For my 2nd time, the Oncologist disagreed with the drug my present Oncologist wanted to put me on. I'm now on that different drug. My Oncologist encourages other doctors' opinions. It's a win- win situation. Plus it's reassuring for you.

I encourage you to do this. Don't rely on just one doctor or facility.   Kats2

 

 

Kats2...

Thank you,

Thats a good idea and I know my doctor will be on board with that as well. When some questions arose regarding my previous anal cancer situation we sought opinions of two other specialist. My doctor is well known and respected in this area and I trust him completely. He follows protocal recommendations from NCCN, but I am still curious due to the rare cancer that this is. Thanks again!

katheryn

eihtak

Apaugh said:

So sorry

Katheryn,

I am so sorry your not finding any answers to your questions.  I dont have any for you either.  Praying for you to find a good outcome.

Hugs,

Annie

Annie...

Thank you for your response and prayers...We can never have too many!!

katheryn