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Old 09-11-2005, 08:29 PM   #1
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Hello, this is the first time I have every posted anywhere on the web. My name is Laura and I consider myself a breast cancer survivor, even though I am mid-stream in my fight. I was diagnosed on January 3rd, 2005 and my life has been a whirlwind since. I have no history of any cancers in my family and I have found out that I do not have any genetic markers (BRCA1 and BRCA2) either. That seems to be the most frustrating aspect of having breast cancer, 70% of the women do not fit into the neat Gail Model for breast cancer risk assessment.

Regardless, I was 32 at diagnosis and am now 33. My initial tumor was 1.6cm and I had 1 out of 5 lymph nodes involved through sentinel lymph node testing. The 1 lymph node dropped me into Stage II, however, it also made me eligible for Herceptin in a research environment. I had a bilateral mastectomy with TRAM flap reconstruction. I chose this aggressive treatment even though I still could have done a lumpectomy. I did this because my cancer had all the characteristics of being extremely aggressive. I am ER/PR negative....with 0% responsiveness on my path report. I am also Her2-neu overexpressed and my tumor was grade 3. I did 4 round of dense dose Epirubicin and Cytoxan and then we moved on to Taxol and Herceptin for 12 rounds. I had a couple of bumps in the road, but chemo was fairly tolerable for being chemo.

I just completed that chemo in August and had a MUGA(heart) and PET/CT scan. We did a MUGA and CT before chemo and they saw a couple of lumps on my liver, but through the CT they just thought they were hemangiomas. (These are benign masses that people are born with.) My oncologist decided to do the PET/CT scan this time and I believe it is saving my life. There were still two masses on the liver. One could be excluded as a hemangioma, but the other looked suspicious on the PET scan so I had to do an MRI. Cancer makes us go through so much physically, but the MRI has been one of the worst experiences thus far.

Through all of this, they still determined the lump was suspicious so I had a liver resection about 2 weeks ago, which went well (for getting a piece of my liver cut out). The tumor ended up being 1 cm and was cancerous. They did a sonogram on the rest of the liver when operating and determined the rest of my liver looked good. The pathology was similar to the original tumor on the breast. I am so thankful now that I have had the more aggressive surgery and that I am getting Herceptin. I find that it is disappointing because I want someone to tell me that I am free from this disease. I believe all of us should be after going through our various treatments. But, alas, I must just rely on my faith to get me there.

Although I have the option not to do chemo this time because I am still doing Herceptin, my husband and I decided to still act in aggressive mode and do chemo as well. We will do Taxotere and Cisplatin along with Herceptin every 3 weeks for 3 months. I am also considering enrolling in one of the Herceptin vaccine trials. I will have to be NED to be eligible, but my new-found Stage IV status might come in handy in making me more eligible for trials.

I am a writer by nature so I have been documenting this whole process all the way through. There have been many highs and lows, but I want to be able to write a story that will attract everyone to read it, but at the same time they can learn about cancer. Most people think Cancer books are not for them until they get diagnosed, but that is not true. There is so much people can learn about living from Cancer Awareness Books. I want people to understand that I was just like them a year ago, thinking I was healthy based on little to no information proving otherwise. Advocacy is at the core of my heart. I am creating a mailing for all the women. I am mailing them 2 Breast Self Exam cards, one for themselves and one for a friend. Doing a BSE was the first step in becoming free of this disease and there have been many miracles along the way.

Right now, I am getting to the point that I see the light at the end of the tunnel. I just want to get through this next set of chemo and have clean scans. My oncologist has been amazing. I have a great family as well. I have an almost-five-year-old daughter, an eighteen-month-old son and a wonderful husband. This experience has brought us all closer. My daughter has chronicled my hair loss and growth (it started to grow back on Taxol...not sure what will happen now). My son would just rub my thick hair and laugh. He does not really know what is up, but some day I will talk to both of them about all of this, about advocacy, about taking care of their own health.

One of my lessons learned is that no one gets through a long-lived life withouth being touched by cancer. It is so scary, yet it can bring out the best in all of us. I believe it is being expunged from my system. I know it and have faith that it will happen. I am thankful for this web site and for the women who have come before me. I hope I represent them well and can help women who will fight this nasty disease down the road.

God Bless,

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Old 09-12-2005, 11:43 AM   #2
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Your story is similar to most of us here. welcome to the board. Did you have extensive lympho/vascular invasion at your breast site, just wondering how it went to liver so fast.

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Old 09-12-2005, 12:46 PM   #3
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Hi Laura, my story is somewhat similar to your's. I was dx'd Dec '01 while pregnant with #4 child. 5cm tumor er+no nodes invloved. I had mastectomy while pregnant and then chemo(4 AC) and 16 rads after. Liver mets and resection last summer, 6 taxol/herceptin 3 before surgery and 3 after. One small tumor. So far liver looks good!!! Surgery was Aug 23/04. I was well enough when school started to take my kids, Motherhood sure doesn't give you much time off!!
I think your smart to be aggressive with your chemo, I sure hope your onc keeps you on herceptin for at least a year. Also trials for the vaccine also require you to be 6 months out from any chemo treatments and you must be on herceptin. But you may be able to participate in phase III trials next year sometime????
Take care of yourself and try not to push yourself too much you did just have major surgery.!!!!!!
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Old 09-12-2005, 06:38 PM   #4
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Thanks, Julie and Tammy. I only had one lymph node, the sentinel node, that was involved at the breast site. There was a small focal point on the sentinel node. Since the other 4 were not, they did not take any more nodes. I am moving forward with herceptin for a year in total. I started that in June, 2005. I am not sure how my liver tumor grew so quickly. Even though it was small, it was close in size to my primary tumor on the breast.

I find that this situation of having breast cancer can be so confusing. I was not upset when I had one lymph node involved. I felt lucky that there were not more than that. However, I am dumbfounded by the liver involvement. I am not even really upset about it, I am numb to most of it at this point. I do get frustrated about the lack of knowledge other people have in relation to this issue and I want to change it. When you tell someone that you have a metastases, it seems like it is the kiss of death to some people. I try to put it in context and make sure they know we found it early and explain the sophistication of herceptin, but then I wonder if I am fooling myself??

I am glad to hear about the Herceptin vaccine trials. It is good to know that I will have to wait six months from the end of chemo. My oncologist and I are gathering some information to figure out how I can be eligible for them. If you all have any insight on anything I have written, let me know. I know I have gotten the best bit of information from people in my support group. We all learn from each other and I hope to help others, too.

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