People ask me to describe how I found out that I have this rare cancer. I have read awful stories on the Internet where doctors and women ignored the symptoms of IBC until it was too late. In my case I am not sure when I started to have symptoms. I feel like it may have begun during my pregnancy with Clayton. At first I noticed swelling in my left breast-actually my whole left side. It went away after Clay was born but when he was three months old I noticed the left breast was bigger, had a lot of lumps, and felt hot. I thought that all of these were symptoms of an ordinary breast infection not unlike one that any nursing mom might experience. So I used hot compresses,cabbage leaves, motrin, and eventually antibiotics. None of these relieved my symptoms which kept getting worse. I went to the E.R. at Pennsylvania Hospital on May 5th. They thought I had mastitis as well, but recommended I get an ultrasound of the breast to rule out abscesses. I took my last two finals ever on Monday6th and Tuesday7th. I felt free to focus on my health for the first time in months. I was happy and confident when I went for my ultrasound. When the Dr. remarked that he could find no abscesses, just a thickening of the breast tissue, and that he thought I should go see the breast surgeon, I knew. I asked,” Do I have cancer?”. He said,” I don’t know, but I think we should try to find out right away.” I changed back into my clothing while he made an immediate appointment for me across the street with the breast surgeon. While in the waiting room I noticed a pamphlet on Inflammatory Breast Cancer. I picked it up and read through the symptoms..doing a mental checklist…I have that, I have that, Oh man I have that too! I walked up to the Doctor and said,” I have this.” He said,” oh good you got the pamphlet.” “No, I have this cancer.” He was less convinced than me. I paced the hall for what seemed like hours but was probably more like 30 minutes. I prayed. I called my husband. I read the words..fatal,aggressive,etc. I held in my tears. I met with the surgeon. A wonderful older gentlemen. I told him that I had breast cancer. Deadly bad breast cancer. He said , “Andrea we don’t know that yet.” I said ,”I know. Well at least now I don’t have to pay back my student loans.” He laughed. From that point on I got an immediate biopsy and mammogram. All on the same day. I loved everyone I met. I decided to be nice and try to just laugh about it. Its not that I didn’t feel sad. I did to be sure. But mostly I just thought it was so cliche’. Very Lifetime television. Mom of six finally graduated from college finds out she has deadly cancer the NEXT day? Implausible. I made up a top ten list ala David Letterman. Top ten reasons its good that I have cancer. Some of them are very funny. I let myself cry only a little. I pray. And although I know that the next world is more wonderful than this one, I will hold on dearly and pray for God to let me remain here with my lovely children and wonderful husband. But I won’t be angry or bitter. Life is too short. Especially mine.
Archive for May, 2007
- What is inflammatory breast cancer (IBC)?Inflammatory breast cancer is a rare but very aggressive type of breast cancer in which the cancer cells block the lymph vessels in the skin of the breast. This type of breast cancer is called â€œinflammatoryâ€ because the breast often looks swollen and red, or â€œinflamed.â€ IBC accounts for 1 to 5 percent of all breast cancer cases in the United States (1). It tends to be diagnosed in younger women compared to non-IBC breast cancer. It occurs more frequently and at a younger age in African Americans than in Whites. Like other types of breast cancer, IBC can occur in men, but usually at an older age than in women. Some studies have shown an association between family history of breast cancer and IBC, but more studies are needed to draw firm conclusions (2).
- What are the symptoms of IBC? Symptoms of IBC may include redness, swelling, and warmth in the breast, often without a distinct lump in the breast. The redness and warmth are caused by cancer cells blocking the lymph vessels in the skin. The skin of the breast may also appear pink, reddish purple, or bruised. The skin may also have ridges or appear pitted, like the skin of an orange (called peau d’orange), which is caused by a buildup of fluid and edema (swelling) in the breast. Other symptoms include heaviness, burning, aching, increase in breast size, tenderness, or a nipple that is inverted (facing inward) (3). These symptoms usually develop quicklyâ€”over a period of weeks or months. Swollen lymph nodes may also be present under the arm, above the collarbone, or in both places. However, it is important to note that these symptoms may also be signs of other conditions such as infection, injury, or other types of cancer (1).
- How is IBC diagnosed?Diagnosis of IBC is based primarily on the results of a doctorâ€™s clinical examination (1). Biopsy, mammogram, and breast ultrasound are used to confirm the diagnosis. IBC is classified as either stage IIIB or stage IV breast cancer (2). Stage IIIB breast cancers are locally advanced; stage IV breast cancer is cancer that has spread to other organs. IBC tends to grow rapidly, and the physical appearance of the breast of patients with IBC is different from that of patients with other stage III breast cancers. IBC is an especially aggressive, locally advanced breast cancer.Cancer staging describes the extent or severity of an individualâ€™s cancer. (More information on staging is available in the National Cancer Institute (NCI) fact sheet Staging: Questions and Answers at http://www.cancer.gov/cancertopics/factsheet/Detection/staging on the Internet.) Knowing a cancerâ€™s stage helps the doctor develop a treatment plan and estimate prognosis (the likely outcome or course of the disease; the chance of recovery or recurrence).
- How is IBC treated?Treatment consisting of chemotherapy, targeted therapy, surgery, radiation therapy, and hormonal therapy is used to treat IBC. Patients may also receive supportive care to help manage the side effects of the cancer and its treatment. Chemotherapy (anticancer drugs) is generally the first treatment for patients with IBC, and is called neoadjuvant therapy. Chemotherapy is systemic treatment, which means that it affects cells throughout the body. The purpose of chemotherapy is to control or kill cancer cells, including those that may have spread to other parts of the body.After chemotherapy, patients with IBC may undergo surgery and radiation therapy to the chest wall. Both radiation and surgery are local treatments that affect only cells in the tumor and the immediately surrounding area. The purpose of surgery is to remove the tumor from the body, while the purpose of radiation therapy is to destroy remaining cancer cells. Surgery to remove the breast (or as much of the breast tissue as possible) is called a mastectomy. Lymph node dissection (removal of the lymph nodes in the underarm area for examination under a microscope) is also done during this surgery.
After initial systemic and local treatment, patients with IBC may receive additional systemic treatments to reduce the risk of recurrence (cancer coming back). Such treatments may include additional chemotherapy, hormonal therapy (treatment that interferes with the effects of the female hormone estrogen, which can promote the growth of breast cancer cells), targeted therapy (such as trastuzumab, also known as HerceptinÂ®), or all three. Trastuzumab is administered to patients whose tumors overexpress the HERâ€“2 tumor protein. More information about Herceptin and the HERâ€“2 protein is available in the NCI fact sheet HerceptinÂ® (Trastuzumab): Questions and Answers, which can be found at http://www.cancer.gov/cancertopics/factsheet/therapy/herceptin on the Internet.
Supportive care is treatment given to improve the quality of life of patients who have a serious or life-threatening disease, such as cancer. It prevents or treats as early as possible the symptoms of the disease, side effects caused by treatment of the disease, and psychological, social, and spiritual problems related to the disease or its treatment. For example, compression garments may be used to treat lymphedema (swelling caused by excess fluid buildup) resulting from radiation therapy or the removal of lymph nodes. Additionally, meeting with a social worker, counselor, or member of the clergy can be helpful to those who want to talk about their feelings or discuss their concerns. A social worker can often suggest resources for help with recovery, emotional support, financial aid, transportation, or home care.
OK. I have totally be doing the worst thing. I have been actually researching my disease on the internet. It is too depressing and painful to read the same comments…aggressive,lethal,incureable…. I would love to just have regular breast cancer. Instead of the industrial strength variety. Today feels like doomsday…just knowing that tomorrow is the start of a really long road. Its kind of overwhelming.
Hi all. I will be brief. The results of my tests
reveal that my cancer is stage three. And confined so
far to my left breast and lymphnodes in my neck and
under my left arm. This is very good news. It has not
really spread beyond what they typically see early on
with my cancer. Â I start chemo on Wednesday. Thank you
all so much. Your prayers and thoughts strengthen me.
Its going to be a tough road, but I have a lot of
friends to help me along. Love you all. Andrea
PS sorry no jokes today. I am really happy because I
might actually live through this.
Hi again! Are you so sick of me yet. This will be
quick and painless I swear. I had a weeks worth of
testing that was well, somewhat awful. But mostly just
because I have bad veins and the lovely people at
Pennsylvania Hospital were forced to stick me over and
over and over. I decided to be nice to them anyway. So
here are some things that I found out.
#1 radioactive material does not give you superpowers.
I am disappointed.
#2 Catscans make feel like I am going to wet my pants,
but apparently that is a normal response.
#3 I really like closed in spaces. No really I used to
hide in the closet as a child. Claustrophobia, not a
problem for me.
#4 People start to sweat after they can’t find your
veins for like the third time. And the person that
does find it thinks their the shit.
#5 If you are really nice to medical personnel they
will do anything for you..including lying to the
doctor so he will get your test results to your
oncologist the next day so you do not have to worry
over the holiday weekend.
But seriously, I should find out tomorrow the extent
to which my cancer has spread. Right now my doctor is
saying I will be on chemo 4-5 months. The ones I will
be on will make me lose my hair, be nauseous,and have
mouth sores. Gross I know. Then I will have a
mastectomy. Then 6 months of radiation and herceptin
which is a bit different than chemo and is more for my
kind of cancer. I told my doctor she is not allowed to
let me die or I am going to make her adopt one of my
children. She laughed…Overall, I am feeling like I
am in good hands. I pray a lot and feel pretty
relaxed.I really can not thank you all enough for all
that you have done for me and my family. Your support
and love is totally appreciated. I am the most
fortunate person to have you all in my life. I thank
God for all of you. Keep sending me info. Keep
emailing and calling. Your friendship means the world
to me. Love always, Andrea
This is my week of tests. Most of them involve so much radioactive material that I feel certain that I will be getting my superpower any minute. I have had a bone scan, which revealed that there is no cancer in my bones. I have also had a muga scan. This is just to asses the quality of my heart, because they want to give me adriamycin. A chemo medicine that can effect the quality of your valves. So they are just making sure that I am healthy enough to poison me. Tomorrow they are giving me a portacath in my chest. This is so they can give me chemo without “sticking” me every time. So basically I am going to look like something out of the matrix. Thursday, I am getting a petscan and catscan. Both of these are done to determine the extent of my cancer. I f it has metasized beyond my breast and lymphnodes then it is called stage 4 and considered incureable. We are hoping for stage 3. I have been trying to not read alot of journal articles about my cancer. All of it is pretty doom and gloom. I am just trying to stay in the moment. We are really thankful for all the love and support we are getting. We appreciate the meals and prayers. Love you,Andrea
This site was created in order enrich, enlighten and entangle the community that surrounds Andrea Collins Smith as she is faced with inflammatory breast cancer. Hopefully, it will serve as a hub where friends, family and supporters can walk alongside Andrea, Kelly and the kids; offer support and encouragement – basically, stay connected.
As various needs and opportunities present themselves we will post information here. This space will act as a real-time documentary of Andrea’s story and process. In time we will add photography, video, and audio to accompany any blogging Andrea and her family wishes to do…it’s a process.
Here is the conclusion to an email Andrea sent out last week:
“Thank you all so much for all your support. I feel so incredibly fortunate to have such wonderful loving friends. I feel a bit anxious. Emotionally though most of the time I feel at peace about the whole thing. God is good. I love you all so much. Don’t worry about me. And don’t be afraid. Its going to be okay. Love Andrea”
I hope that this virtual space, in some small way, will mirror the encouragement, enthusiasm and strength that Andrea exudes…