This Is My Story
Breast Cancer ListServ
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! Please  don't forget to sign my guest book!!! Thank You!!
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    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 an assisant teacher at Minnesota Renaissance School . My husband, Perry, is a truck driver with Vitran Express.
  St. Cloud State University,    St. Cloud, Minnesota
    
Vitran Express, My  Husband's  Employer

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 was cancer! 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! Dr. Beitsch    has a wonderful site that explains the Sentinel Node Biopsy proceedure!

What About  The Kids? I mentioned earlier that  I have three school aged children.  David (now 13), Mary Beth (now 12)  and Anna (now 9) 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  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 day....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 American Cancer Society has some very easy to understand explanation   available.  In Addition, the Y-ME National Breast Cancer 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!

     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 January 22, 2002.... 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 .



Updated 04/02/02
  Please note....I am not a medical professional, just a woman living with  Breast Cancer. This website is based of my personal experiences and opinions.  I have provided links to all authorative websites used to gain information.
                    UPDATES
April 11, 2001 - Much has happened over the last 2 years. In May I had a hysterectomy with ovary removal. This was done basically to reduce the amount of estrogen my body was making, therefore reducing the risk of recurrance. Even if it would reduce that risk by a mere 1% I was willing to do whatever it took! I had thought long and hard about the procedure, being as invasive as it is, before the desicion was made.  During the surgery my GYN was able to locate only 1 ovary. My left ovary had canished. Months later I had commented to my oncologist that I thought I was still PMSing. To put my mind at ease he ordered a FSH test to prove I had minial estrogen in my body. To our suprise the test came back a 12 indicating that there may be ovarian functioning. The missing ovary may not have vanished...just decided to play hide-and-seek.  I am now in the process of going through another GYN (mine has since retired) to determine if the ovary is still indeed there, and if so...what will the next step be?

October 19, 2001 - Happy 12th Birthday to Mary Beth!!  Last month I saw my oncologist. I am still NED (no evidence of disease). The BEST news ever! I have now been upgraded to visits every 6 months rather than every 4 months. This is a little scary for me. Every ache and pain still terrifies me. Once you have cancer it seems you can never again have "just" a cold! This fall has brought horrible battles with allergies and asthma. But, it actually feels good to have a "normal" illness again!

January 16, 2002 - Things have been fairly normal in my life since the last update in October. I still am feeling wonderfully and my energy is starting to become more normal. A year ago when I started working I was sleeping my 10:00 every night being absolutely exhausted. Now I find I can lead a "normal" life and even watch those wonderful late night movies once in a blue moon!

We've had a little issue with the insurance company recently. They've denied payment of a set of tests done on September 15, 2000 (MRI, mammogram and bil;ateral Hip x-rays). They claim that the results found were due to an accident or injury and they were unable to research the details sufficiently. The only problem is that I
did fill out and submit an accident/injury form way back in 2000 and apparently it was not enough for them. I explained that the tests were ordered by my oncologist to rule out a progression of my cancer. The results showed arthritis (which may have been chemo induced) as well as degeneration of my spine in the lumbar area.  I have now been asked to fax them the information needed to they can make the proper adjustments to the claim. Sure wish they would have told me this rather than having me figure it out when I opened the two bills totalling $5,000!! Talk about a heart attack!

WATCH FOR MORE TO COME!





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