There was no lump -- a Breast Cancer blog

This blog is about my experience with Inflammatory Breast Cancer.
You can learn more about Inflammatory Breast Cancer at
http://cis.nci.nih.gov/fact/6_2.htm or http://www.ibcsupport.org/

The names of my Doctors have been changed.

 

 

Contact me at Liane58 at gmail dot com
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Location: United States

Wednesday, July 14, 2004

My Care – the Doctor, Support Group, the Hospital, Advice

A couple of people have asked me about the quality of care I'm receiving. To try and keep the names of the staff anonymous (can this blog be Googled? I don't know.) I'll be elliptical about the where as well as the who.

Anyway, I am very pleased with my quality of care, and feel lucky that it is at one, very respected Hospital, whose geography I am starting to feel comfortable with. I'm glad it's not a really huge hospital, and that the oncology wing is in a small, easily navigable separate building.

I continue to marvel at Dr. Smith's energy and optimism. She is just so upbeat, yet sensible. But best of all is the Social Worker who meets with my support group every week. She is such a knowledgeable resource -- all she does is work with breast cancer patients -- and so endlessly compassionate and caring. Every theory, every study about possible treatments, she knows about. It's just great to have someone like this be so accessible.

My Illustrious Support Group

The group members themselves are such great people. The three of us who are dealing with IBC also have cats, so last time we devolved into a cat care and psychology discussion. At home I feel like I run senior feline assisted living center (although there are only two cats -- a third passed away in 2001).

My group colleagues are just full of important words of wisdom, as well of encouragement. It's so great to know we all go through (occasionally) things like waking up crying, starting to cry in the middle of the day -- not really knowing why, just the abstract weight of it all. We all (in chemo) have mouth sores, as well as hair loss, and it's nice to also see members with hair growing back – a reminder that this is a temporary condition.
I had asked Dr. Smith about my mouth sores, so she briefly pulled my out of my Support Group to look at them. But by then the group had already answered all my questions, I told the Doctor. "Ah, yes, that is a very illustrious group," she replied. And so it is!

IBC

So three members of my group have IBC (Inflammatory Breast Cancer) -- pretty remarkable, considering that IBC is only one to four percent of all breast cancers. But lucky for me, I must say. A group member had this advice, that I decided to write down to help myself really absorb it --

to always ask these two questions, when learning about the next stage of treatment or treatment possibilities:

(1) Are there any other possible side effect or results to this treatment? I'd like to know about the full range of possible outcomes.
(2) are there any specific considerations I should have because my cancer is Inflammatory Breast Cancer?