Welcome to our Foundation Blog
The News Story that started a movement across the U.S., to educate the public about Inflammatory Breast Cancer.
Statistics are just that! Statistics. Everyone is different and with all the success stories about battling IBC, some time in the near future the statistics will be changed.
While you are here please check out the IBC Clinic at Fox Chase Cancer Center in PHILADELPHIA, PA.
Dr. Massimo Cristofanilli is leading this new clinic, which our Foundation had the pleasure to tour on May 11, 2010.
Under (Dr. C's) careful tutelage both the clinic and the research facility, with their growing data base working in tandem with other facilities,including MD Anderson Morgan Welch IBC Clinic, Dana Farber IBC Program and others who share the passion of finding the cause and hopefully soon finding the cure for Inflammatory Breast Cancer, there will someday soon be a V for Victory over this aggressive disease.
We will continue to educate and continue our mission until not one person says...."what is this? I've never heard of Inflammatory Breast Cancer"
Please keep in touch Jody. Let us know how you go.
Patti
Looks like I am headed to Fox Chase for answers. It’s not concrete but in the process for Feb 14:) Thank you again for the wonderful education you provide!
Jody
Patti ~ I was sent by my g.p. to a breast surgeon 12/16 for a sore that didn’t respond to antibiotics. Because of the education you are doing I’d learned that IBC needed to be ruled out! However two breast surgeons here in GR, MI (1 @ Spectrum and the 2nd at St.Mary’s(Mercy) only did the MRI because I insisted!!! I want to let this go … just don’t understand why my breasts are at this moment feeling like my milk let down … I haven’t nursed since 1987:( So I am feeling pretty foolish and maybe it’s some kind of psychosomatic thing… I’m feeling kind of lost… don’t know how I can manage to get to and pay for ibc qualified biopsy??? Thanks for any direction you might give. Jody
Hi Jody,
Sadly the major tests can miss “seeing” IBC. But a biopsy of the tissue in the area that is inflamed or swollen or skin changes, should be the definitive answer.
What you are doing, and it sounds like your doctor is doing, is trying to RULE OUT IBC. The biopsy is usually done along with the tests. Remember that someone else reads the biopsy so making sure you are in the hands of people familiar with IBC is really important.
I hope all will be well with you. Write back if you need any help.
Patti
I have experienced several symptoms over the last two months but have had negative mamograms, ultrasounds, and last week a clear bilateral breast mri. Does the mri "rule it out"... or if the pink and other symptoms continue... should I try to get to an ibc clinic???
Thanks for the awesome information/education you provide!!! Jody
Hi Cheryl, So sorry this is late in getting to you. Hopefully by now her doctor has either changed her chemo or given her something to help with the sick feeling. There are many things they (the doctors) can do to ease the nausea and anything else associated with chemo. Let us know.
Cyber hugs for being a good sister.
Patti
Hi Renee,
So sorry your Mom is dealing with this, I know how hard it is to sit on the sidelines.
Since IBC is a “clinical” diagnosis, which means they can visible see it from the breast’s appearance, I would be pushing for them to Rule Out IBC. And no….the whole breast does NOT have to be red. Some women don’t even have any redness, just a swollen breast like my daughter had. IBC is in the “derma” (skin). If the biopsy was not taken in the area of pain or discoloration, then they usually do it again. Did they stage your Mom? Tell her if she is ‘hormone receptor positive or negative? (very important for the drugs she will be give). AND…..with IBC surgery IS NOT FIRST….chemo is first. There are IBC specific clinics around the U.S. What area does your Mom live?
You can write me if you want…..p.thewriter@frontier.com
Patti
HI,
I’m not sure that I am in the right place to ask this question. My mom was diagnosed with cancer last week. She woke up one morning with pain in her breast and under her arm..it seemed warm and slightly red with a lump also..after a week of assuming it was an infection she went to the breast surgeon who did a biopsy of the lump and said it was cancer. He didnt ask about onset, only dealt with the 3.2cm tumor. I am still worrying about IBC because of the way it came on so quickly. Her Dr. said no, because usually the entire breast is red with that. Should I continue to question the diagnosis when I see the oncologist, or would the Dr.’s know for sure due to the biopsy information what type of cancer this is…??? thank you, so much, Renee
Good afternoon Everyone,
My name is Cheryl and my sister was diagnosed with IBC on June 15, 2011 She is 44 years old So far she has had one round of AC chemo, now she is on taxol and herceptin weekly through Mid Nov. She is getting very sick from the chemo. She used to just be sick for a few days now this past week she was sick all week long. If she has surgery or not will be determined sometime in November She was diagnosed with stage 3. She is petrified of chemo and so am I She crys everytime she goes. Help us please!