What Is Metastatic Inflammatory Breast Cancer?

Please meet and welcome my cyber-friend, Judy.  I ran across her blog (Just Enjoy Him) and realized that not only is Judy a great writer, she’s also a woman of faith. What follows is her story….

I Am The Face of Metastatic Inflammatory Breast Cancer

In January 2008, I was diagnosed with Stage 4 Inflammatory Breast Cancer (IBC). To say that the diagnosis devastated my world doesn’t really describe everything a diagnosis like that does to a person – it’s incredibly scary and I thought I was going to die, I really did. However, with my faith in God and the incredible support of a terrific medical team, my family, my friends, and my church family, I’ve been hopeful through it too. It’s a difficult balance, and sometimes I find myself on the side of despair. However, through great medicine, belief in God, and lots of prayer (mine and others), I’m here, almost 4 years later, and still alive. It’s a tough diagnosis to live with, but I am hopeful and blessed in so many ways. I was asked by Teresa to do a guest blog, and I’d like to talk a bit about my experience with IBC and what IBC is.

My cancer went into remission in December 2008. However, in November 2010, I learned that I have a recurrence of the cancer. It’s been a hard road since then. The recurrence was found in my liver (where it had metastasized to the first time) and some lymph nodes in my chest. I went through two different chemotherapy regimens with them not only NOT working, but during those times, the cancer progressed. Both of those times, I was, understandably, devastated. This third regimen, chemo drugs called Tykerb and Xeloda (both in pill form) are finally working. My oncologist says that some women can be on this regimen for two-three years. One thing to know about metastatic, or Stage 4 breast cancer is that, barring a miracle or sudden death from something else, I’ll be on chemotherapy for the rest of my life. This cancer will eventually kill me. It’s a difficult truth, it’s a truth that makes many people uncomfortable, but it’s a truth that I live with every day. I’m so glad that I also live with an awesome God in my life who helps me get through the tough times and allows me to be a generally upbeat person In Real Life.

It’s important to my particular story that people understand the difference between the kind of breast cancer that I was diagnosed with, Inflammatory Breast Cancer (IBC), and the “typical” breast cancer that most women get, which is called Invasive Ductal Carcinoma (IDC). There are many reasons why this is important. Being someone with IBC can be a lonely journey so I want to reach out not only to cancer survivors generally but to IBC survivors particularly. Perhaps my story can help them feel less lonely. It is also a different journey than one with IDC is: the treatment is sometimes different, the statistics are different, and the survival rate is different. The kinds of chemotherapy drugs are different than those of IDC. The change of recurrence (90%) is different. The rate of recurrence of IDC depends on many factors, but in general, according to the web site Life After Early Breast Cancer (http://www.lifeabc.org/) :

Approximately one-third of women with hormone dependent early breast cancer will experience a recurrence.

The Inflammatory Breast Cancer Research Foundation (http://www.ibcresearch.org/) describes IBC as the following:

Inflammatory Breast Cancer, also known as IBC, an advanced and accelerated form of breast cancer [is] usually not detected by mammograms or ultrasounds. Inflammatory breast cancer requires immediate aggressive treatment with chemotherapy prior to surgery and is treated differently than more common types of breast cancer.
IBC, which makes up 1-5% of all cases of breast cancer, often doesn’t present with a lump. It also has other characteristics that are different from most breast cancer cases. Most breast cancer patients have a form of breast cancer called Invasive Ductal Carcinoma (IDC). IBC is also treated differently than IDC, with chemotherapy occurring before a mastectomy. It is considered to be the deadliest type of breast cancer. Reputable internet sites state that typically:
• The 5-year median survival rate is approximately 40%, mainly due to delays in diagnosis, a physician’s lack of expertise in treating IBC and its resistance to treatment with standard chemotherapy drugs.
Symptoms for IBC include:
• Swelling, usually sudden, sometimes a cup size in a few days
• Itching
• Pink, red, or dark colored area (called erythema) sometimes with texture similar to the skin of an orange (called peau d’orange)
• Ridges and thickened areas of the skin
• Nipple retraction
• Nipple discharge, may or may not be bloody
• Breast is warm to the touch
• Breast pain (from a constant ache to stabbing pains)
• Change in color and texture of the areola
I had some of the symptoms: nipple retraction, breast pain, and a different texture to my breast which they call “peau d’orange.” Unlike most other IBC patients, I did have a lump in my breast.

 

 

I am the face of metastatic Inflammatory Breast Cancer. As are other caring, vibrant, incredible, strong, loving women, women who make the world a better place. Women I’d like to be around for a very long time. Women like, and unlike me. Women I’m glad I met, but am sorry about the circumstances of our meeting.

We are the faces of metastatic IBC.

Bassgiraffe's Thoughts Thursday Blog Hop

  • teresak

    Thank You Judy! And praying for you!

  • http://justenjoyhim.com JudyK

    You’re welcome and thank YOU! Glad to spread the word about IBC; it’s such an insidious disease that women need to be aware that any change in their breasts isn’t normal and needs to be checked.

  • Arel Gies

    I to am a survivor of Metastatic Inflammatory Breast Cancer. I was diagnoised In June of 2005, three months after my husband, unexpectedly, passed away. My world was upside down but I have always attributed my survival to the fact that I have a Guardian Angel watching over me. It’s a rough road, but with a positive attitude and great Drs. and a support group, it can be done. I enjoyed this article so much. Thankyou!! Bless you.

  • teresak

    Thank you, Arel, for visiting NanaHood and please come back again. Your comment is inspiring and helpful! Bless you on your journey!

  • http://iluvtosave.net Ola Jaggers

    Thank you Judy, so much for sharing your story with us. I’ve had a few families that have battled cancer (not breast cancer) and some just was not able to fight any longer. My my mom is in her 16th year of remission and I’m so thankful. God is good and he will take care of us!

    You will always be in my prayers!!!!

    I’m a new GFC follower stopping by from bassgiraffe’s Thoughts Thursday Hop (and so glad I did). I would love for you to stop by and visit me (#35 on hop)!

    So very nice to meet you!

    ~Ola
    iluvtosave.net
    facebook.com/il2save
    twitter.com/Ola_Jaggers

  • Rayne Butler

    I too am an IBC survivor, and I have had the awesome pleasure of meeting Judy. She IS everything she says she is, and more. Excellent article Judy, as usual. Hugs, Rayne

  • http://justenjoyhim.com JudyK

    Wow, thanks everyone.

    Hey Rayne! Thank you so much for your kind words. Back ‘atcha, my friend.

  • Danyelle Baker

    Hello: I just read your story and it brought tears to my eyes. My mom just found out she has IBC or IDC on 10/18/11. It is really scary. I am not sure waht her journey holds but all we can do is pray. This disease sucks!!!! Our family knows God will bring us through this and it is His will. God bless you and thank you for sharing your story as there is not a ton of information on IBC/IDC.

    Danyelle

  • teresak

    Danyelle, praying for you and your mom! I know it’s hard but you are not alone!

  • Amanda

    My mom is just now being diagnosed for IBC and we are still in the ‘numb shock’ stage. The thing that has been most upsetting is how the oncologists treat the diagnostic phase. They tell her she’s got this late stage cancer that is very aggressive and then they make an appointment for two weeks later to take another diagnostic test. How can she live with this monster inside of her and not get immediate treatment? We have felt the sting of rejection from doctors. It’s given me a very insecure feeling about our health care system and they way it deals with critical care. They don’t just ‘make everything go away’.

    Thank you for sharing your story. It’s good to know that you don’t necessarily keel over after a month – you can make it and have a productive life for a while. I hope a positive attitude and a humorous outlook on life will get us through this time. It’s a nightmare….but I think there can be positive aspects to the journey, if we look on the bright side.

  • Carol

    I was diagnosed with IBC November 19, 2010. I have had 16 chemo treatments, a double mastectomy, 22 lymph nodes under my left arm removed (19 were cancerous), and 36 radiation treatment. I have felt so alone on this journey and have not actually talked with anyone else who has this cancer. I live in a small area and most people have never heard of it. I was so glad to hear your story of survival! My family is there for me but I can’t seem to communicate with them about what I feel and think. I have always been one of the strong ones in the family. I will pray for you and everyone who has IBC!

  • Patty Webb

    Hi Judy,
    Thanks for the blog…I’m not quite IBC, but have just been diagnosed with Metastatic in my spine. After almost 8 years in remission.
    You’re right, it’s very different, from treatment options to survival options. I love God, and spending time with Him in prayer. I’m blessed with a wonderful family and church family and friends who share this journey with us.
    I also have an amazing hubby and 11 year old boy that make me want to fight, fight, fight.
    I hope to hear from you, and read other posts, comments from others.
    This is a different world, that is for sure.
    In Him,
    patty

  • Karen Lee

    Hello,
    Last Monday, Feb 11, 2013, I got these weird purple bite like bumps on the side of my left breast. They started itching almost immediately. I mean really itching! In the meantime, I have been having an odd pain on the left side of my back, up by my shoulder blades. It feels like a stress knot. I have tried getting rid of it by lieing on a ball, having someone walk on it, etc. Now it is a constant pain. And I am getting very intense shooting pains in my breast. These pains take my breath away. As of this morning, my breast has light pink splotches and the breast is warm to the touch.
    I looked symtoms up yesterday on line, having no idea this could be cancer. I called my doctor and oth
    going in to see her at 10:15 tomorrow. Im kind of in a fog. Your blog as well as many others has been most enlightening. Doesnt look to good for me, especially with a five year lufe expectancy

  • teresak

    Karen, let me know what your doctor says. Will be praying for you!

  • Sheena Bethell

    Dear Karen, I’m sorry to hear of your uncomfortable symptoms. Inflammatory breast cancer is very rare – my gynecologist had never seen it. I wish you strength as you deal with the diagnosis (whatever it is).
    I have metastatic inflammatory breast cancer (bones and brain) and am currently in treatment. I was diagnosed in November 2009 and it has been a roller coaster ever since. My excellent health care team and supportive friends and family have lightened the burden. I am also HER-2 positive and Herceptin was a real boon, especially in the early stages of the treatment. Radiotherapy also has been very effective, although I have had less luck with chemotherapy. However, still trying to keep positive and have a life, despite the challenges. All the best to all, Sheena

  • teresak

    That’s for commenting and visiting! And many, blessings to you for better health!

  • Janice Ljiljak

    I was diagnosed with IBC in April of 2012. I have gone through chemo, a mastectomy and currently radiation and chemo together. The cancer has spread to lymph nodes in the chest and lesions around the incision site. Does anyone know if there is an online support group for women with IBC? Are there any blogs by IBC survivors?

  • Katie R

    I too have been looking for additional information on IBC for the last 3 years. My mom was diagnosed in July 2010 with IBC. We went through chemo, double radical mastectomy with lymph node removal on both sides (both sides had nodes that were positive), then radiation. Yesterday we found out it is back and it it metastatic IBC. All the hopes from 3 years ago are now uncertain. She’s a fighter though and we have fought this once, we will fight it again. Unfortunately, we weren’t lucky enough for it to be Estrogen receptive or HER-2 positive. We were limited on the options she had then, we may be even more limited now. I too would like to know if there is any other place to find more information. Even though she is a nurse, we are still having to do a lot of research again and the information out there is limited.

  • teresak

    Have you been in contact with MD Anderson in Texas? My cousin has had a positive experience with them. Stopping now to say a prayer now for you and your mom. Teresa