Breast Cancer – Chapter 1
This is a portrait of our family taken just after my first chemo in November 1998. From left to right: Mary (age 8), me, Anna (age 6), Perry and David (age 10). I recall having to bribe them all with Pizza for dinner to get the silly grins on their faces. But it worked! Not long after I lost my hair. Geez, and I had just gotten it the way I liked it!
This is taken from my first web page that I created back in 1999 about my first journey living with a breast cancer diagnosis. Some of the links may be broken so please bear with me during the time I’m editing!
Breast Cancer – Lisa’s Story
As a mother of 3 young children I found myself thrown into the nightmarish journey with Breast Cancer. This is my story. I hope you learn from it…..I have included some valuable links throughout this site and will update it continually! This page is currently under construction!
This Is My Story!
Allow Me To Introduce Myself…. My name is Lisa. I was born in 1965 and grew up in Minnesota. I have lived here all my life. I have a Bachelor of Science in Social Work I received in 1987 from St. Cloud State University. In 1987 I was also married. We have since had 3 wonderful children: David, Mary Beth and Anna. I’ve had a variety of careers ranging from Direct Service in a group home to teaching in a daycare center! Presently I am a teacher’s aid at a Montessori School and doing part time care taking at the apartments we currently live in. My husband, Perry, is a truck driver with Vitran Express.
The Breast Cancer Experience…Diagnosis It was sometime around the 1997 Holiday Season when I had first found the lump in my breast while in the shower. I was somewhat concerned, although definitely NOT about it being cancer. I was only 32 years old at the time….”far too young for cancer!” At the urging of a co-worker, I did go in to have it checked out. I was told that it was probably just an infected duct, or maybe even a cyst. I was asked to come back if it was still present in a couple months. Click Here To Get Information From The ACS On Benign Breast Conditions
I did not go back….over the following months I began to experience pain where the lump was during my menstrual cycle. I falsely thought, “cancer certainly doesn’t hurt like these and swell only at certain times of the month! Has to be a cyst!”
One day, while at work, I bent over and it felt like the lump ripped! It frightened me enough to make a visit to my GYN on September 2nd of 1998. After a very careful examination my GYN set up an appointment on September 8th for me to have a mammogram and ultra sound. She felt it could be a cyst, but we had to have it checked out immediately. The tests were relatively simple and the mammogram was not as scary as I had thought! I was told that if fluid was found it would be expressed that day….when the tech told me I could leave I suddenly knew it wasn’t just a cyst. For Information on Early Detection Click Here
I was sent to see a surgeon who would be doing the biopsy of the “suspicious mass” found in my breast. He was a very gentle, caring man who knew I was frightened and took the extra time to make sure I understood what was happening. He had wanted to perform the biopsy right then, but he read my fear and asked that I came back the next day….he wanted me to read some information he gave me and bring with a friend for moral support.
The following afternoon, September 16th, I had a Core Needle Biopsy in the office. I was given a local pain killer and the procedure was rather painless! When the samples were taken and sent to the lab, my surgeon came back in and set up a time for me to come with my husband to receive the results. “Good or Bad news….you’ll need him!” Click Here For Information From The ACS on Diagnosis Methods Including Mammograms and Biopsies
The Results Are In….Still being in a bit of denial, I did not ask my husband to accompany me to the appointment. Instead, my Mother-In-Law volunteered to come with. At Noon, on September 18th, 1998, I heard the words, “my dear, I’m afraid it’s cancer,” come out of the surgeons mouth. I had to look at my mother-in-law to make sure it was me he was talking to! The tears in her eyes confirmed my worst nightmare.
What’s Next? Dr. Lovett gave us time to absorb the news. He gave me a lot of material to read, but smiled gently as he handed me a card with his pager number on it….”I know reading this stuff probably won’t be of too much help right now. Please page me at anytime if you need any help!” My surgery was scheduled for the following week as well as a meeting with the surgeon and my husband. He wanted Perry to hear what was going to happen from him. It was important to Dr. Lovett that Perry and I feel confident and comfortable with him. I was then whisked off to have blood work and chest x-rays done. Suddenly, we were out of the clinic and back into the real world….what was I suppose to do? How was I suppose to act?
The Surgery was on September 24th, 1998. I had to arrive at the hospital at 8 am for tests and procedures. I was asked to be part of the Sentinel Node Biopsy Clinical Trial, so additional tests were needed for that. At approximately 2:00 pm I was taken in to prepare for the surgery. Dr. Lovett had explained that if he felt he had to remove more of the breast than he anticipated he would wake me up enough to get my approval. I told him, “take it all if you need to – I don’t have to think twice about this!” The next thing I knew I was waking up in a hospital room….shivering beyond control. There was my entire family….with my Dad laying on my legs trying to help me keep warm! I felt relief! Even though I had not yet heard ‘how it went,’ or how much was left….I felt this indescribable inner warmth….I knew I had a hard road ahead of me, but I was no longer scared! I truly believe it was waking up from that horrible darkness to see the loving faces of my family that filled me up with so much peace!
What About The Kids? I mentioned earlier that I have three school aged children. David (now 12), Mary Beth (now 10) and Anna (now were all very involved in this cancer journey. We took it on as a family. They all felt the lump….I showed them pictures of what a mammogram was and how it worked…we talked about the different kinds of biopsies….and we discussed what different kinds of surgery I might need to have. My (adoptive) Mom died in 1991 from colon cancer. Anna was not yet born, but David and Mary Beth were very aware of what happened to her. “Cancer” was a death sentence in our household. I knew I had to do something more than ‘tell them it’ll be okay.’ What if it wasn’t?? We immediately found a group for children through the American Cancer Society called “Kids Count, Too”, where they gathered with other children to learn about the disease, treatments and the feelings they may be having. It was a godsend! I had also contacted the school’s social worker who kept her eye on all three of them and let me know if there was anything going on I needed to know about. With our kids, we found that the more they knew, the better they felt. It was almost like they had some little bit of control in this roller coaster life they were thrown into! I’ll have more on the kids as my saga unfolds….
The Official Diagnosis Is In…. when all was said and done I found myself with a lumpectomy. I also had a a drain in to help the excess fluid come out. The recovery from the surgery was a little painful, especially from the incision under my arm where the lymph nodes were removed. I was released from the hospital at 9:00 am the morning following my surgery. Within a week the drain was removed and I healed quickly. Not Long after my surgery I received a copy of my Pathology report to better understand what we were dealing with:
- Infiltrating Ductal Carcinoma – simply put, this type of cancer begins in the ducts and breaks through into the fatty tissue of the breast.
- The size of the tumor was measured to be 2.6 cm
- 0/14 Lymph Nodes were found to have cancer cells
- Histologic Tumor Grade 3 of 3 – basically meaning that these cells look as unlike “normal” cells as possible….grade 3 cells tend to spread more rapidly and are more aggressive.
- Estrogen and Progesterone Receptors Positive – the cancer cells are somewhat receptive to the presence of the hormones. They are also considered to have a better prognosis compared to those cancers that are ER/PR Negative and may respond better to hormonal therapies.
- All of this combined put me at a Stage lla cancer: T2 – tumor greater than 2.0 centimeters, but less than 5.0 centimeters….N0 – no regional lymph node metastasis…M0 – no distant metastasis noted.
If you are interested in learning more about this, the Health.com site has some very easy to understand explanation available. In Addition, the Breast Cancer Network of Strength organization has an online publication called Understanding Your Breast Cancer Pathology Report that you may find to be very helpful!
Treatment begins….The first step of treatment was to determine if I was a candidate for chemotherapy. My oncologist offered me the opportunity to participate in a clinical trial, which I agreed to. I was assigned the therapy of Adriamycin and Cytoxan (or AC)….the other arm of the trial was using Adriamycin and Taxol.
Prior to the beginning of chemo I had a MUGA Scan to make sure my heart was functioning properly. Adriamycin may have negative effects on the heart, and this test is used to monitor that possible side effect. The AC was administered in 4 cycles which were 21 days apart. Prior to each treatment I had labwork done to insure that my blood levels were high enough to tolerate the medications. With each treatment I was given Decadron which is a steroid used to help combat nausea. The AC was administered by IV and usually took between 2 to 2 1/2 hours. As a rule, I did not feel any of the effects until a couple hours after the treatment was completed. I was given a number of medications to also help stop the nausea including Compazine, Ativan, Kytril and Zofran . By taking these medications exactly as recommended by my oncologist I found that the nausea was, for the most part, under control.
On aproximately the 14th day after my first treatment my hair began to fall out. On the Friday after Thanksgiving, 1998, my husband shaved my head to avoid the heartbreak of watch it come out in clumps. This was a very traumatic time for the entire family. My Dad and Step-Mother purchased a beautiful wig for me and I also wore bandanas a lot. The good news is….it does grow back!!
Chemotherapy can have many other side effects whcih you can read about in a booklet put out by the National Institutes of Health / National Cancer Institute called Chemotherapy And You . Aside from the nausea and hair loss, I also experienced a metalic taste in my mouth, weight gain and extreme fatigue. I was very lucky to have suffered basically ‘minor’ side effects.
Immediately after my chemotherapy was completed I began taking the drug called Tamoxifen . There are many different views on Tamoxifen so I will offer you my experiences as well as some links for more information.
I began Tamoxifen in February 1999. To date, I have had only a handful of hotflashes, no weight gain, some mild episodes with depression and I continued having a very regular menstrual cycle (which was also very regular throughout my chemo). Here are some other places you can look to for information on Tamoxifen: From the Susan B. Komen Breast Cancer Foundation, Tamoxifen As A Treatment For Breast Cancer , InfoLink’s Doctor’s Answers To FAQ’s on Tamoxifen , and The NCI’s Questions And Answers About Tamoxifen . I want to point out that I am still happy with my decision to take Tamoxifen to this day! (Notation – After the 3rd year on Tamoxifen the decision was made to stop its use. I had begun to experience nearly debilitating muscle cramping and weakness that may or may not have been associated to its use.)
Radiation was the next step of treatment. An hour long session involving measuring and measuring and more measuring was the first task at hand. They needed to make sure they were hitting right on the target area. I had a number of x-rays to help in determining this. I was also given 3 tiny little tatoos that were used to set up the machine before each treatment. The treatments themselves were tolerable. Even though I had to go everyday, for a total of 36 days, I found a huge positive….I met some very interesting people who were also there for radiation treatments. We learned a lot from each other and cried when our time together was completed! I really missed everyone and felt a loss once it was done. As far as side-effects…I had minimal skin breakdown until the last 2 boosters were given. I then looked like I over did it in the sun! I used Aquaphor (recommended by my techs) daily and for the breakdown was given pure aloe gel. My breast, over time, began to harden….but now – a year later – the hardness is slowely decreasing. The biggest side effect was the fatigue I experienced about 2 weeks post treatment. Caught me very off guard! As I write this it is June 2nd, 2000….21 months after my diagnosis. I am NED (No Evidence of Disease) and I can tell you that I am SURVIVING!!!
A word or two about support….I found it very important for someone who is going through something like breast cancer to establish a good support system. As I previously mentioned, the kids were enrolled in an invaluable group called ‘Kids Count, Too’ through the ACS. They also offer a variety of groups for the rest of the family to help educate and support everyone. There are also a variety face-to-face support groups offered through local hospitals and clinics. I found the Breast Cancer Listserv to be my biggest support. Not only have I learned a lot, but I have gained some precious friendships with many of the 700+ members of this online community. I have been pulled through many dark days by these wonderful people! To subscribe to the BC List simply go to the BC List Webpage . The Friends In Need Forum is another fantastic online support resource! Follow the link below and check them out! It is important to realize that sometimes family and friends cannot totally fill your need for support. Yes, they may do all they can….but sometimes you need to hear from those who are going through what you are going through. I strongly urge everyone dealing with this to look for that support, whether it be a face-to-face group or online!