Welcome to our Foundation Blog

  • 17 August 2011

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"

 

77 Comments

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  1. James - 09/15/2012 at 1:38 pm

    You should check with her olsonogict to make sure that any alternative treatments are compatible with her current treatment. Some herbs interfere with chemotherapy and make it less effective.You should also make sure you read information about Essiac Tea from the American Cancer Society and the National Cancer Institute studies:National Cancer Institute:American Cancer SocietyKeep in mind that The US Food and Drug Administration has not approved Essiac or Flor•Essence as a cancer treatment. Companies sell Essiac and Flor•Essence as health tonics or herbal dietary supplements, which the FDA regulates as foods, not drugs. Essiac or Flor•Essence would have to be approved by the FDA as a drug for companies to claim that the products treat or prevent a disease.

  2. KAREN WINLAND - 06/13/2012 at 3:54 am

    I am a 9 year survivor of IBC snd a 7 1/2 year survivor of a recurrence. I was diognoised and in treatment in less than two weeks. I have since moved to a small town with a lg. hosp and am amazed at the number of drs and nurses that have never heard of IBC. It just astounds me. I pass out bookmarks with IBC symptoms and talk to every dr. nurse, woman I come across. It may only be 1-4% now but once it starts getting diognoised properly I am sure that % will go up. I am very blessed I had an intellegent dr. that knew exactely what I had when she saw my breast. I also had mamos every 6 months (one just 2 mos before IBC showed up)
    It is not a death sentence, get treatment right away.

  3. Patti - 05/16/2012 at 6:07 pm

    Here’s hoping it’s nothing, but let us know. Try and relax and have a calm weekend.

    Patti

  4. Anonymous - 05/16/2012 at 5:20 pm

    Patti I called and A Dr Karen pollard Murphy will see me on monday. Thanks again for all your help.
    Michelle

  5. michelle - 05/15/2012 at 8:29 pm

    Thank you patti. I will call for an appt tomorrow. I feel better knowing Im not crazy.
    Michelle

  6. kleofa nelson - 05/15/2012 at 6:54 pm

    Thank you so much for the reply, I will definitely be asking them about ruling out IBC, I do have a little swelling with the breast pain and itchyness but no defined lumps. I still feel a little apprehensive about the appointment but your right it needs to be done sooner rather than later. I Hope and pray this is nothing too. I will let you know how i get on. Thank you again and take care.

    Kleofa.

  7. Patti - 05/15/2012 at 6:26 pm

    If you were my daughter I would want a biopsy. Your breast DOES NOT need to be dimpled to be IBC. Best to rule it out. I gave you the doctor in Boston who is very familiar with IBC. That would be my best solution.
    Hoping it is nothing, but better safe than sorry.
    Patti

  8. Patti - 05/15/2012 at 6:22 pm

    Don’t be afraid about going to your doctor or a breast specialist. Just make sure you ask if they have seen many cases of IBC, so they understand you want to RULE OUT IBC. If you have swelling with your itching and pain you should demand a biopsy as it is the only way to make sure one way or the other. Unless there is a defined lump, a mammogram will see right through the mesh like substance that makes up IBC. Praying this is nothing, but better to rule it out in the beginning as waiting is not an option with this fast moving culprit.
    Please let us know how you go.
    Patti

  9. michelle - 05/15/2012 at 6:14 pm

    Hi Patti I fixed my email. I had a mri today it just showed multiple nodules that were difined as adenosis and read normal. I still have that red area. Its not painful and it hasnt changed except sometimes its more reddish then bluish. Should I still ask for a biopsy?

  10. kleofa nelson - 05/15/2012 at 4:58 pm

    Hi everyone,
    I am a 30 year old mum of 4 and I live in England and i was looking for some advice. I went to the doctors yesterday as I have been suffering from painful itchy breasts for about 2 weeks now and he has referred me to a breast specialist as he said he was concerned with unusual lumpyness i have in my breasts! Then he told me not to worry but I’m afraid its not been as easy as that as all I can think is the worst I have a horrible feeling. could this be IBC? I know this may be nothing to worry about has anyone had the same symptoms or simillar, what can i expect when i see the specialist? i’m actually scared about going. Thanks.

  11. Patti - 05/02/2012 at 9:13 pm

    Hi again, (tried your email address but it was returned as undeliverable)

    Boston has an IBC clinic, run by Dr Beth Overmoyer. Beth will be on our radio show on May 16th, but you might want to call (give them our reference).

    Beth Overmoyer MD, FACP
    Breast Oncology
    Dana Farber Cancer Institute
    44 Binney St
    Mayer 220 B
    Boston MA 02115
    phone: 617-632-3495
    fax: 617-632-1930

    Please let me know if I can help

    Patti

  12. michelle - 05/02/2012 at 5:58 pm

    Thank You Patti,
    I live in Bellingham Ma and know alot about IBC as I have read alot about it, when I expessed my concern to my doctor, she looked at my breast and said “thats on ibc because its not dimpled” “my breast have since gone up in size and I have d/c from that breast as well,it hormonal” she said.I just walked away looking for answers from someone else who may have experience. Any informaton you give me would be appreciated!!
    Michelle

  13. Patti - 05/02/2012 at 5:42 pm

    Hello Michelle,
    I’m sorry you are dealing with this problem, as there are many doctors who are not aware of how prevalent IBC actually is.
    Where are you located? There are IBC specific doctors and clinics around the U.S. We can direct you to one of them.
    Sadly for now, patients need to demand of their doctors to RULE OUT IBC with a biopsy (in your case where your reddened area is or was).
    You can also call our toll free line and talk to someone who can help you.
    Please keep in touch.
    Patti

  14. michelle - 05/02/2012 at 5:27 pm

    Hi My name is Michelle and I am 41. I have had a reddened area 5cmx3cb for six weeks. My breast are both swollen and sore for about 3 weeks. I saw a breast specalist who wouldnt do a biopsy because there was no mass (I know there doesnt need to be a mass with IBC)she did order a MRI but its not for 3 weeks. I gained 8lbs this week and havent changed my diet of workout. Im worried that noone is hearing me. Please tell me wwhat to do.

  15. Patti - 03/06/2012 at 4:04 pm

    Jody,
    So glad to know everything went well. Thank you for letting us know that “the system” works.
    Hope your Dad is doing better and your life is coming to a calm (if life ever can do that).

    Please keep in touch.
    Patti

  16. Jody Brown - 02/29/2012 at 1:09 am

    Patti ~
    I had my appointment with Dr. C at Fox Chase two weeks ago today. I had been so certain that something serious was wrong and that it might be IBC. Dr. C was able to tell me definitively that I did not have IBC by reviewing my MRI and doing a physical/visual exam. Words can’t describe how everyone I had contact with at Fox Chase was incredibly understanding, respectful and supportive. Knowing how confused I was, in spite of the enormous relief that he provided, he did a number of other blood tests and a CT scan to try to determine the origin of my symptoms. The tests were done immediately and he saw me again two days later. Although I still don’t know for sure what my body is telling me…. He ruled out lymphomas and was very, very reassuring and not at all judgmental about my taking his valuable time. It was such an enormously positive experience to go there, to meet him, and to see all of the wonderful things they are doing to serve cancer patients.
    I want to thank Peggy in Michigan for listening to me and helping me connect to the Corporate Angel Network. I flew with my sister to Pennsylvania on very short notice at no cost. The very thought of making those arrangements and the financial hardship, made me think I couldn’t possibly manage to travel for an appointment with Dr. C. I am grateful on so many levels and to so many people for what was one of the scariest experiences of my life, made easier and manageable by their kindness and generosity.
    I am sorry I didn’t write to you sooner. My 83 yr old father has had two visits to the ICU here since I returned home. Now on oxygen and with a change in meds for his multiple cardio issues, he is doing much better and looking forward to the spring garage sales where he plans to buy a highchair for his condo… I try to take my 13 month grandson to visit him often.
    THANK YOU doesn’t seem adequate. I will do what I can to educate others that there is another breast cancer, where you may not feel a lump!
    … and I almost forgot Dr. C said hello!
    Jody

  17. Patti - 02/26/2012 at 7:03 pm

    Hi Alaina, it’s Patti here. I did the map just for numbers, for myself, not for distribution. I just used Google Earth.
    Glad you liked the show. Steve, as you know, is one great guy.

  18. Alaina - 02/26/2012 at 6:17 pm

    Hello, I just watched/listened to The Kovacs Perspective about IBC…great show!!! I wanted to know if you have a map online where we with IBC can put a push pin on the map for our location…mine would be for Newbury, Ohio (geauga county). Thank you, Alaina living with stage IV, IBC, ER/PR- and HER2+ since 2004.

  19. Patti - 02/20/2012 at 4:15 am

    Please keep in touch Jody. Let us know how you go.
    Patti

  20. Jody Brown - 02/04/2012 at 11:48 pm

    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

  21. Jody - 02/02/2012 at 4:24 pm


    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

  22. Patti - 02/02/2012 at 4:31 am

    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

  23. Jody Brown - 02/02/2012 at 12:28 am


    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

  24. Patti - 10/20/2011 at 9:21 pm

    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

  25. Patti - 10/20/2011 at 9:19 pm

    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

  26. renee - 10/20/2011 at 6:16 pm

    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

  27. Cheryl - 09/21/2011 at 7:49 pm

    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!

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