Diagnosis - Metastatic Breast Cancer (Stage 4)

This was written by Karen's husband, Dan. I was reading her postings and I realized that from what is there you would assume that she has had a mastectomy. This is not the case. The CT scan came back showing two tumors in Karen's liver. One was 2 cm. and the other about 0.5 cm. The location of these tumors is only inches away from the site of the original tumor. The biopsy proved these tumors to be malignant. Therefore the mastectomy was cancelled - the only purpose of a mastectomy is to keep the cancer from spreading. Since hers has already spread, the mastectomy serves no purpose.

You can imagine that this was shocking news. After all, last September her mammogram was clean, and now she has breast cancer already metastasized to her liver! The answer to this is probably Her-2/neu. Never heard of it? Neither had we! It turns out that something like 20% of women with breast cancer have the Her-2/neu factor. Her-2 is formally known as human epidermal growth factor receptor. What happens is the Her-2/neu gene is over-expressed in the cancer tumor. This causes the cancer to be excessively aggressive. Her-2/neu is graded on a scale of 0 to 3+. Values of 2 and over are considered to be over-expressing. Karen tested 3+. The good news is that in 1998 the FDA approved a new drug named Herceptin (Trastumazab) - a monoclonal antibody engineered through biotechnology which binds to the HER-2 proteins (receptors) on the tumor cell surface. The bad news is that the administration of Herceptin can result in the development of ventricular dysfunction and congestive heart failure, particularly when combined with certain chemotherapies. The heart damage is usually reversible.

Karen is receiving Chemotherapy every week for three weeks with one week off. She is receiving Taxol and Carboplatin. This combination of drugs usually results in some amount of neurotoxicity (nerve damage) which is not reversible. She gets Herceptin every week. This is expected to last for six months. Adding Carboplatin to Taxol doubles the toxicity, but it also doubles the response rate and the time to progression. The oncologists are aiming for a complete response.

If you want to know more about Herceptin or Taxol and Carboplatin, just enter "metastatic breast cancer" and the other words you are interested in into Google or other search engine. There is lot's of good data out there.

The two rules for visiting/calling Karen: Don't come if you or anyone with you have a cold or are sick, and no war stories. We need you to help her keep a strongly positive outlook. We thank you for your calls and cards, and especially thank you for your prayers. We are counting on a miracle!

chemo brain

I have not written in the blog for weeks because I just felt overwhelmed by having one more thing to do. But today Mark helped me find some of the emails I wrote last month and posted them to get you caught up with what is new in my cancer treatment. I have finished my first round of chemo and started the second round today. I am getting Taxol, Carboplatin, and Herceptin besides a few pre-medications given to keep me from getting nauseous. I go every Friday and it usually takes about 3 1/2- 4 hours. I am very thankful that even though my doctor is at Duke, I can get the chemo administer here in Wilson. That saves me at least 3 extra hours of driving. The doctor here is in contact with the doctor at Duke and so I feel like I am in good hands.

The side effects of chemo have been daunting. I realize now how much I have taken for granted my good health. I have had so much energy for so long that it has been a major adjustment to feel tired, sick, nauseous, and sore much of the time. I know this is part of the battle, but I don't really enjoy it. On the other hand, I want to beat this thing, so I go in to chemo with the " bring it on" attitude in order that I can have the tools to fight off the cancer. At this point I have about only 1/4 the hair I used to have. I usually wear a wig or a hat. I am planning to cut my hair again so that it will be about 1/2 inch long. I falls out everywhere and is getting to be a nuisance.

My chemo schedule is 3 weeks on and 1 week off. Well, not quite one week off: I don't get a week off Herceptin since that is the drug that controls the Her-2 condition that I have. But as I learned last week, that drug doesn't have many side effects. I felt like my old self last week and it was wonderful! I went to school (Southeastern Baptist Theol. Seminary) for the first week of Fall classes. It was so great to be there. I am getting my Masters of Divinity degree and hoping to graduate in May. It is a 3 year program. I have already completed 2 years and it has been my goal to graduate this year. This was supposed to be my easy year, but now that I am fighting cancer, it doesn't look so easy. But anyway it felt great to be there this week. As I was sitting in class thinking about Hebrew, writing papers, reading books etc somewhere during that time I forgot about my cancer, chemo, and condition. It was wonderful! As far as how well I will do this semester and if I can handle a full load of classes, only time will tell. But for now I am taking it one step at a time and trusting the Lord to help me.

This pretty much catches you up to date.

Karen

Explanation of posts

Mom sent out various emails to different people prior to setting up this blog. In order to help explain how things have developed over the past couple of months, I have edited them and posted them on the day sent. This also keeps them in the present tense instead of hindsight. These email posts are found below.

Learning I have cancer

This summer has proven to be very memorable for me. In early June, Dan and I went on a cruise to the western Caribbean. We had a great time and I never felt healthier. I remember snorkeling in the beautiful warm water and rejoicing over feeling so well and being thankful for being so healthy.

I knew that I had a lump in my left breast, but I normally have lumps and I regularly get them checked and they are always nothing to worry about so I didn't worry about this one either. This lump was large and very painful and it didn't feel like the "frozen pea" that I have always been told to watch out for. After we returned from the cruise, Dan encouraged me to go to the doctor and have him check the lump. I did so and he assured me it was not cancer, but suggested that I get an ultrasound to be sure. He said I didn't need a monogram since I had one only 9 months ago. The ultrasound showed there was something there, but the 2 technicians and a radiological concurred it was nothing to worry about. I was just told that if it changed, then I should go back to my doctor but if it remained the same, then I shouldn't worry about it. I told the technician that my doctor had also made an appointment for me with a local surgeon to get his opinion. I asked if I should keep that appointment, she assured me I should so I did.

I went to the surgeon early on Monday morning, June 28th. He examined the lump and said that usually he would do a needle biopsy, but he recommended we skip that and just remove the lump. He said we didn't need to do the biopsy since "it's not cancer" and he could spare me some unnecessary poking and prodding.

He did the surgery later that day and told me it was rather large, but not to worry about it because he was 90% sure it wasn't cancer. He said he would sent it to the pathologist just to be sure, but not to worry about it. Two days later when I came into his office to get the bandages changed he told me that the pathology report came back and that it was cancer. I was shocked, of course, since up until that time each person who had looked at it assured me it was benign. I figured that there must be some mistake. I am so healthy and feel great, but the doctor said there was no mistake. He said he went back and looked at the ultrasound from the previous week and said the cancer was there. He also looked at my September mammogram and that it wasn't there then. The pathology report said it was an aggressive form of cancer. The surgeon told me it was important for me to get a mastectomy immediately before it spread. He said the cancer was only at stage one, which means it is localized just in the breast. He wanted to schedule me for the surgery on Friday. I told him I wanted to get another opinion and that I would think about it.

Although I was shaken, I also had a peace. It 's hard to describe what I was feeling.