Inflammatory Breast Cancer Stories

Inflammatory breast cancer stories - There is a reason to look forward to! Until quite recently, the diagnosis of inflammatory breast cancer is virtually a death sentence. Only 2% of patients survive for five years, and long-term survival is almost unheard of. While overall survival rates for breast cancer have only a little improved since the 1950s, there have been significant improvements to the IBC, and recently published research provide a five-year survival rate of 40% in an environment with relatively little recurrence after five years. Newly developed drugs and the use of high-dose chemotherapy can improve survival rates even further.

The following is a story from a few brave women have lived through or live with the IBC. In some cases names have been changed to protect their privacy. Not all stories from IBC has a happy ending, and you will find those stories here that might be both uplifting and scare you. Fear is natural, but should not be allowed to overwhelm the willingness and hope you need to confront this crisis.

Inflammatory Breast Cancer Stories

Jenee's Story: The first words that I would like you to read about me is I have to BEAT IT. In January 2003 I was 32 years old and I am the little girl who was only two. I went for a routine examination with the obstetrician (gyn) and decided on the visit is that since I'm not planning to get pregnant that year I'll start on the pill. I have been taking the pills for about 8 years before quitting three years before had a daughter. In a few weeks this new pill called Yasmin I see that both my breasts are swollen and tender. This is a common side effect of the pill so I didn't think too much about it. After completing 28 day cycle pills I realize that only one of my breasts continue to become swollen and it also becomes very painful. After one half-cycle pills, I went to see that same gyn to discuss the swelling/soreness/redness. He didn't seem too concerned with what I am saying but with a test confirms that my left breast slightly bigger than my right. Little did I know because I have never heard of the IBC that I actually read off the checklist of IBC symptoms (swollen, red, soft) and he didn't even snap to the fact that this could be cancer? He didn't feel there was a bump and so am I. He suggested I "get off the pills" and wait a few months and come back and see him. I think this is a stupid idea and asked for a mammogram. He said it was not needed. I do not agree. Don't listen to this doctor saved my life.
See also: Inflammatory Breast Cancer Stages
I see a breast surgeon 6 days later. Just a few days after a Gyn visit, I found a lump. I originally found only when lifting my left arm seemed to make it come closer to the surface so that I could feel it. I'm not sure if it was there when I saw a Gyn or not but I have recommendations for breast surgeons from close friends and see him next week. This breast surgeon told me it is the possibility of infection, but that there is little possibility of Inflammatory Breast Cancer (IBC). I consider myself very fortunate that this doctor know the warning signs. This doctor suggested one week of antibiotics (Cipro) and if not resolved within 7 days, she suggests a biopsy. Although I wish Dr has performed a biopsy and then there is a very reasonable thing that he prescribed Cipro for a week.

When the bumps, redness, swelling (dimpling when squeezed known as peau d'orange) showed no improvement in 6 days my sister and my mom's best friend started searching on the internet for IBC. What they found, as I am sure you are finding out is that the information is alarming to say the least. Realize how serious this case we decided to go for a biopsy with breast surgeon and soon began calling the m. d.Anderson (MDA) in Houston. I got to see them live, most likely due to the fact I had so many symptoms of IBC which as you know is the most aggressive type of breast cancer.

On March 28, 2003, m. d. Anderson has done a series of mammograms. Because I was only 32 years this is the first I have ever had a mammogram. A mammogram confirmed not only one but two big bumps, 3.5 cm and 1.2 cm. on the left and a suspicious there on right breast. I then sent for a sonogram guided biopsy. I have a few fine needle aspiration core biopsy as well as on breasts that are all positive and unfortunately my lymph nodes in the armpit (2) and super clavical area (above the collarbone) is positive for cancer. I was devastated.

From there we went back to meet with the nurse practitioner who explained the seriousness of the cancer and the fact that it's been confirmed to be stage III b. I would need a liver, bone, Lung tests to rule out spread throughout my body. What a shocking news! I feel generally fine and can't believe I was so sick.
See also: Hormonal Breast Cancer Survival Rate
The weekend is already blurred, worry and fear from what I have been told. Monday I've got all my tests which were all negative. I Stage IIIb. No metastatic cancer. I met with my oncologist, Dr. Thomas and he explained what I had to do and again explained the seriousness of it all. I prescribed six months of chemotherapy, 4 round of FAC and 4 Taxotere every 3 weeks. I have a Nuelasta shots after all sessions of chemotherapy that helps keep me counting up. After 2 rounds of FAC I tumors have shrunk dramatically, this is great news.

I then had a double mastectomy with 13 lymph nodes removed on the left and sentinel node biopsy on the right. Water channel, but in the scheme of things it's not that bad and I'm very glad I had two because my full breasts IBC non in situ cancer that often turn into invasive cancer. I am very good pathology. All the cancer is gone from the chest and only 1 of 13 lymph nodes indicate "rare (slightly) the remaining cancer cells." This is not a complete response but that's as close as you can get. The doc I was very pleased and so is with me. From there I went on to have 5 weeks of radiation twice a day. Inflammatory likes to go back to the skin twice a day so that the radiation given to IBC'ers at MDA because they feel they have been shown to cut the incidence of metastatic skin. I burned to a crisp but all better now. Since I ER positive I now take Tamoxifen for 5 years. Her2 negative so I Herceptin was not an option.

Inflammatory Breast Cancer Stories

I am very grateful to be there is no evidence of the disease (NED). Today as I write it is Feb. 14, 2004. My little girl is now 3 and my husband and the family has been through so much but we are very grateful. You have to help! I could not do this without my family. My husband has been wonderful, my parents and her parents had been bent back. You have to ask for help and to let the people who help. This really wipes out years of your life, but all is not lost as close family and friends come out of the woodwork to help you. I became a stronger person now. I know that I am not out of the Woods, but I feel good.

This IBC web site that really helped me. I am still on the email distribution list and check-in at least 3 times a week. Pete Bevin set it after his wife died, the IBC has been one of the most beautiful tribute to the love that I have ever witnessed. At first it was too shocking to read what all happens with this woman, but the more I learn, the more I feel empowered by it. It is frightening to hear horror stories but it's so uplifting to read. Also, this is very serious; There's no avoiding it, so it's also a "face the music" page to me. Statistics now on survival are low with only a third of women who are still alive 5 years. I think this has gone up because they treat the IBC is now different from the chemo first. As I said before, I HAVE to BEAT this!

Since I am now 33 years old, I also got a lot of comfort from the web page dedicated to young women with breast cancer. There is hope out there and you should not see this as a death sentence. People who don't get better than this, it requires a lot of work, a lot of luck, a bit of suffering and need prayer for me. If you are reading this for the first time please email group at and let this wonderful group of women and a husband to help you.

Other thoughts: Please, make sure you see a specialist, this is not the time to go to the doctor is nice on the road, this is your life, you are talking about. Get a second opinion before doing anything, especially before surgery, chemotherapy is recommended most IBC's first case. I found out that I was a carrier of the gene mutation of BRAC II. I got this from my dad's side of the family.

Causes: what causes it, who knows? For me, I tend to be with BRAC genes; I also take the pill for 8 years, then used progesterone during my pregnancy, and then went on to earn 75 described pounds while pregnant, then went back on the pill 2 years after delivery. I have also been under a tremendous amount of stress at the time of which no doubt was a blow to the Crown for my health.

I wish you strength and luck and hope. Please email list if you have specific questions, you will get your answer.

New entry: today is Nov. 1, 2004. I am almost one year anniversary of the completion of the treatment. I have 1 yrs. 7 months of my diagnosis. I am doing great! No recurrence!! My energy level is coming back and I started to exercise and lose some weight I got during my pregnancy I was 4 years ago. I feel so good I have not felt this good in years. Of course, now I know that I'm exhausted during these last 4 years is probably related to the cancer, I did but didn't know it. I have some fear, pain in my right side needed a CT scan that came back clear. The red area on my back needed a biopsy, all came back clear. I live the most exciting life full of joy. I thank the Lord every day. I appreciate everything. Most negative emotions that just get away from me. I felt like they were beaten out of me and now I have a pure joy. My husband, daughter (almost 4 yrs) and parents and in laws. I'd go for check up Dec. 2004 reconstruction and will have several times in the next two years. For those of you who are wondering, I want you to know that not having breasts isn't a big problem for me. I am very a prosthesis and feel great in clothes. My husband and I have a much clearer and deeper understanding of each other and the deep love that could only come from in these desperate and hard times. Our wedding so much more beautiful and happier than I ever could have imagined. I am so thankful for every day. My goal now is to keep a very good health through diet and exercise and to get the word out about IBC and do what I can to help find a cure for the most pathetic and horrible disease that has caused so many people so much pain.
See also: Triple Negative Breast Cancer Survival Rates by Stage
New entry: today September 18, 2006-it's now been 3 years since I completed chemotherapy and surgery. In December I will be celebrating 3 years from the completion of all my treatment. I continue to have no evidence of disease (NED). I continue to take Tamoxifen and has very few side effects. I NED and I live a very normal life. I thank God every day for this site that saved my life.

Update November 2007 - Now I am 37 years old and still NED. It now has 4 ½ years since my diagnosis, I continue to take Tamoxifen and has no side effects. I remain on this list and read it as often as I can, this list gives me hope. It now has 4 ½ years since my diagnosis, and I want to give others hope. I have set up a foundation to help spread the word about IBC. This is called (the ARF is Advocacy, research, foundations). Update December 2012 – I now 9¾ years free of cancer. I continue to work with the to educate and advocate and am soon launching my own site ready in 2013!