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Crohn's patient on Remicade diagnoised with breast cancer

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Posted 7/13/2014 5:09 AM (GMT 0)

Hi! I have Crohn's disese.  I got  an ostomy in 2006.  I was put on Remicade in 2009.  Everything went relatively well till my recent mammogram. The biopsy showed that I have Grade 3 DCIS.  The surgeon told me that I can choose to have lumpectomy + radiation or mastectomy.  I read from somewhere that I am immune compromised till the drug is completely out of my system, which probably means I can get infection easily during and after the surgery.  I don't think either my G.I. doctor or the surgeon is familiar with my situation.  Is there anyone out there who have similar experience ?  Would greatly appreciate your input.

I am scared and depressed.  I thought that I had tried very hard to take care of myself since I was diagnosed  with Crohn's.   I still got so sick that I had to have an ostomy.  Now this.  Life is very hard.

Posted 7/15/2014 9:10 PM (GMT 0)
I do not have Crohn's, however I am immune-compromised.

Have you posted in the Crohns forum at all and presented the same question? We have a whole lot of "cross over" between various forums. Sometimes it takes poking around in the different forums to find some helpful information. Even when you do, remember nothing can take the place of your doctor's guidance.

As I came to understand it, for me, my life was most important and when I had surgery and radiation, they just monitor you more closely. As it is, when you have radiation, you'll probably meet with your rad onco once every week, and meet with an RN once every week. You are watched very closely in general.

I had all of my doctors communicate so everyone was on the same page and well informed because I have a number of complex issues going on all at the same time.









M.
Posted 7/16/2014 6:23 AM (GMT 0)
Hi! Merrida,

Thanks for writing me. I did posted the same thread to Crohn's and Ostomy forums. No specific answers pertained to my situation. To my horror, when I re read the pathology report today, I found that I am also triple negative. I don't know why the surgeon did not mention it when she was going through the report with me. Maybe she did not want to worry me. With triple negative bc, Chemo is actually the more effective way to treat it but Chemo causes extensive ulceration of the intestines. I only have small bowels left. I have so little confidence left because I have tried so hard to take care of myself and things just keep popping up.

I am not having much luck getting hold of the bc nurse (I would like her to arrange a meeting with the oncologist or whosoever is in charge). At the same time I probably should not delay the treatments due to the aggressive nature of the illness.

I will try to call the membership services again tomorrow and hopefully they can give me some answers.
Posted 7/16/2014 8:38 AM (GMT 0)
You're right. If you're triple neg, the usual course of action is chemo.

I don't know if it's of benefit but you can also ask your doc for an oncotypedx score. I did that afterwards but it was for the hormone therapy. I was double positive, single negative, so I'm on an estrogen blocker.

There are different types of infusions, so perhaps discuss this with your onco?

This is a big piece of the puzzle of what you're facing. I don't know why docs often do not tell us things. Maybe because they don't want to alarm us, but I sometimes think they don't want to be the one who took the responsibility of informing us.

But that's a very important factor that must be addressed. You are correct!









M.
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