The first words I want you to read about me are I HAVE TO BEAT THIS. In January of 2003 I was 32 years old and my little girl had just turned two. I went for a routine exam with a Gynecologist (gyn) and decided at that visit that since I wasn't planning to get pregnant that year I would start on the birth control pill. I had taken the pill for approximately 8 years before stopping 3 years prior to have my little girl. Within a few weeks of being on this new pill called Yasmin I noticed that both my breast were swollen and tender. This is a common side effect of the pill so I did not think too much about it. After completing 28 day cycle of the pill I noticed that only one of my breasts continued to be swollen and it also became very painful. After one and a half cycles of the pill, I went to see that same gyn to discuss the swelling/tenderness/redness. He did not seem too alarmed by what I was saying but by exam confirmed that my left breast was quite a bit larger than my right. Little did I know since I had never heard of IBC that I was literally reading off a checklist of IBC symptoms (swollen, red, tender) and he didn't even snap to the fact that this could be cancer? He did not feel any lumps and neither did I. He suggested I "get off the pill" and wait a month and come back and see him. I thought this was a stupid idea and asked for a mammogram. He said it wasn't necessary. I disagreed. Not listening to this Doctor saved my life.
I saw a breast surgeon 6 days later. Within a few days after the Gyn visit, I found a lump. I initially found it only when lifting my left arm up which seemed to make it come closer to the surface so I could feel it. I am not sure if it was there when I saw the Gyn or not but I got a recommendation for a breast surgeon from a close friend and saw him the next week. This breast surgeon told me it was likely an infection but that there was a small chance it was Inflammatory Breast Cancer (IBC). I consider myself extremely fortunate that this Doctor knew the warning signs. This Doctor suggested 1 week of antibiotics (Cipro) and if it was not resolved in 7 days, he suggested a biopsy. Although I wish the Dr. had done a biopsy then and there it is very reasonable that he prescribed Cipro for a week.
When the lump, redness, swelling (dimpling when squeezed known as peau d'orange) showed no improvement in 6 days my brother and my mom's best friend started looking 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. Realizing how serious this was we decided against going for the biopsy with the breast surgeon and immediately started calling M.D. Anderson (MDA) in Houston. I got into see them right away, most likely because of the fact I had so many symptoms of IBC which as you know is the most aggressive breast cancer.
On March 28th, 2003, M.D. Anderson did a series of mammograms. Because I was only 32 years old these were the first mammograms I had ever had. The mammogram confirmed not one but two large lumps, 3.5 cm and 1.2 cm. on the left and suspicious in situ on the right breast. I was then sent for a sonogram guided biopsies. I had several fine needle aspirations as well as core biopsies on the breast which were all positive and unfortunately my lymph nodes underarm (2) and the super clavical area (above the collarbone) were 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 was already confirmed to be Stage III b. I would need liver, bone, lung test to rule out a spread to the rest of my body. What shocking news! I felt generally fine and couldn't believe I was so sick.
That weekend was a blur, the worry and the horror of what I had been told. That Monday I had all my test run which were all negative. I was a true Stage IIIb. NO metastatic cancer. I met with my oncologist, Dr. Thomas and she explained what I would have to do and again explained the seriousness of it all. I was prescribed 6 months of chemotherapy, 4 rounds of FAC and 4 Taxotere each 3 weeks apart. I got Nuelasta shots after all my chemo sessions which helped keep my counts up. After 2 rounds of FAC my tumor had shrunk dramatically, this was great news.
I then had a double mastectomy with 13 lymph nodes removed on the left and a sentinel node biopsy on the right. Drains were a nightmare but in the scheme of things it wasn't that bad and I am so glad I had a double because my non IBC breast was full of in situ cancer which often turns to invasive cancer. My pathology was excellent. All the cancer was gone from the breast and only 1 of the 13 lymph nodes showed "rare (few) residual cancer cells." This was not a complete response but was as close as you can get. My doc was thrilled and so was I. From there I went onto have 5 weeks of twice daily radiation. Inflammatory likes to return to the skin so the twice daily radiation is given to IBC'ers at MDA because they feel they've proved it cuts the incidence of skin metastasis. I burned to a crisp but all is good now. Since I was ER positive I am now taking Tamoxifen for 5 years. I was Her2 negative so Herceptin was not an option.
I am so thankful to be no evidence of disease (NED). Today as I write it is Feb. 14, 2004. My little girl is now 3 and my husband and family have all been through so much but we are so thankful. You must have help! I could not do this without my family. My husband has been wonderful, my parents and his parents have bent over backwards. You must ask for help and let people help. This literally wipes out a year of your life but all is not lost as families get closer and friends come out of the woodwork to help you. I am a stronger person now. I know that I am not out of the woods but I feel good.
This IBC web site helped me tremendously. I am still on the email distribution list and check in at least 3 times a week. Pete Bevin set this up after his wife died of IBC which has to be one of the most beautiful tributes to a love that I have ever witnessed. At first it was too shocking to read what all was going on with these women but the more I learned the more I felt empowered by it. It is scary to hear the horror stories but so uplifting to read the good ones. Also, this is very serious; there is no avoiding that so it was also a "face the music" page for me. The stats right now on survival are low with only a third of women surviving 5 years. I think this has gone up because they are treating IBC different now with chemo first. As I said before I HAVE to BEAT THIS!
Since I am now only 33, I also got a lot of comfort from the www.youngsurvival.org web page which is dedicated to young women with Breast Cancer. There is hope out there and you should not view this as a death sentence. People do get better from this, it takes a lot of work, a lot of luck, a bit of suffering and for me it took prayer. If you are reading this for the first time please email the group at firstname.lastname@example.org and let this wonderful group of ladies and husbands help you.
Causes: What causes this, who knows? For me, I was predisposed with the BRAC gene; I also took the pill for 8 years, then used progesterone during my pregnancy, then proceeded to gain 75 unexplained pounds while pregnant, then went back on the pill 2 years after delivery. I also was under a tremendous amount of stress at the time that no doubt was the crowning blow to my health.
I wish you strength and luck and hope. Please email the list if you have specific questions, you will get your answers.
New Entry: Today is Nov. 1, 2004. I am almost at the one year anniversary of the completion of treatment. I am 1 yr. 7 months from my diagnosis. I am doing great! No recurrances!! My energy level is coming back and I am starting to exersice and lose some of the weight I gained during my pregnancy 4 years ago. I am feeling so good I have not felt this good in many many years. Of course, now I know that my fatigue over this last 4 years was probably related to the cancer I was carrying but did not know it. I've had a few scares, some pain in my right side that required a CT scan that came back clear. A red area on my back required a biopsy, all came back clear. I am living the most enjoyable joy filled life. I thank God every day. I appreciate everything. Most negative emotions are just gone from me. I feel like they were beaten out of me and I now I have pure joy. My husband, daughter (almost 4 yrs.) and parents and in laws are doing great. I am going in for another check up Dec. 2004 and will have reconstruction some time in the next two years. For those of you who wonder, I want you to know that not having breast has not been a big deal for me. I have great prosthesis and feel great in clothes. My husband and I have a much clearer and deeper understanding of one another and deep love that could only come from such deep dispair and tough times. Our marriage is so much more wonderful and happy than I could have ever imagined. I am so thankful for each day. My goals now are to maintain excellent health through diet and exercise and to get the word out about IBC and do what I can to help find a cure for this most miserable and terrible disease that has caused so many people so much pain.
New Entry: Today is September 18, 2006 - it has now been 3 years since I completed my chemotherapy and surgery. In December I will celebrate 3 years from the completion of all my treatment. I continue to have No Evidence of Disease (NED). I continue to take Tamoxifen and have had very few side effects. I am NED and am living a very normal life. I thank God every day for this site that saved my life.
Update November 2007 - I am now 37 years old and still NED. It has now been 4½ years since my diagnosis, I continue to take Tamoxifen and have no side effects from it. I continue to stay on this list and read as often as I can, this list gave me hope. It has now been 4½ years since my diagnosis and I want to give others hope. I have co-founded a new foundation to help spread the word about IBC. It is called the IBCARF.com (ARF is Advocacy, Research, Foundation).