Karena, 35 y.o. with Triple Negative Breast Cancer
Posted Jun 23 2009 6:55pm
I just finished reading/responding/posting Kristy's story (see previous post,) who said she was thankful for all the treatment options that are available now, and I wholeheartedly concurred. But unfortunately for the writer of this next survivor story, and many others, triple negative bc hasn't been so fortunate. From the Triple Negative Breast Cancer Foundation's website:
Understanding Triple Negative Breast Cancer
It is now commonly understood that breast cancer is not one form of cancer, but many different "subtypes" of cancer. These subtypes of breast cancer are generally diagnosed based upon the presence, or lack of, three "receptors" known to fuel most breast cancers: estrogen receptors, progesterone receptors and human epidermal growth factor receptor 2 (HER2). The most successful treatments for breast cancer target these receptors. Unfortunately, none of these receptors are found in women with triple negative breast cancer. In other words, a triple negative breast cancer diagnosis means that the offending tumor is estrogen receptor-negative, progesterone receptor-negative and HER2-negative, thus giving rise to the name "triple negative breast cancer." On a positive note, this type of breast cancer is typically responsive to chemotherapy. Because of its triple negative status, however, triple negative tumors generally do not respond to receptor targeted treatments. Depending on the stage of its diagnosis, triple negative breast cancer can be particularly aggressive, and more likely to recur than other subtypes of breast cancer.
TNBC Foundation is devoted to finding targeted treatment for triple negative breast cancer.
I found your website while trying to find some items to buy. I am a breast cancer survivor and saw you are looking for stories. My story was posted on the Triple Negative Breast Cancer site so I am attaching my story I told them to this email. I am still recovering from side effects from the chemo and my masectomy I had on Mar. 17th. I am a big advocate on telling people about the type of breast cancer I have since it is just now being talked of more. Susan G Komen just this past December (2008) gave grant money to help with the TNBC foundation to do more research on triple negative breast cancer. Hope my story can be of help to someone through your site.
My Breast Cancer Story My name is Karena and I was 35 when I was diagnosed in June 2008 with triple negative breast cancer. I found the lump myself in March 2008 when my right breast began hurting. I put off going to the doctor because I had just had my annual pap exam in November 2007 and was told that everything was fine when my breasts were examined. I thought, "Well it is just something that will go away." In June I had an appointment with my primary care doctor and had not planned on mentioning the lump but something came over me and I ended up telling her. She set up an appointment for me to get a baseline mammogram. The next day, I went to see my OB/GYN. I mentioned the lump to her also and she advised me to get a mammogram and ultrasound right away. I was able to schedule an appointment for the following week. I knew something wasn't right when the ultrasound technician was quiet and went and got the doctor to look at the results. From there on it has been a whirlwind for me. My OB/GYN sent me to a breast specialist who did her own ultrasound and informed me that it could be cancer. In my heart I knew it was. I have a strong faith in God and I felt He had prepared me for all this beforehand because after the biopsy was done and I was told I had cancer, I had peace and knew God would be with me. I was told I had invasive ductal carcinoma grade 3 cancer and was told it was triple negative. My mom and I asked what that is. The doctor told us it affects mostly young African American women and it is an aggressive cancer. We researched and did not find much information about this cancer. We felt good about my breast oncologist because she seemed to know enough about this type of cancer and she was being aggressive in my treatment and setting me up with a good chemotherapy doctor. I had a lumpectomy with sentinel node biopsy done in July 2008. After the surgery when I was awake my doctor told me that I am stage 2 and that my tumor was bigger than she thought - it was a little over 4 cm. She also said that there was another small tumor starting that was .4 cm. I thought to myself, "Man this type of cancer is no joke!" My doctor never even saw the other tumor back in June and she thought maybe it started growing after she did the original ultrasound. I began chemotherapy on August 18, 2008. I had 4 bi-weekly rounds of AC which really took its toll on me. I volunteered to participate in the Avastin/placebo clinical trial so that was being given also. Right when I was to begin my Taxol/Avastin/placebo rounds in October, I got sick with a bad cold. I had to take a week break from chemotherapy and then they started my weekly chemotherapy of Taxol/Avastin/placebo on October 21, 2008. Before they started the treatment, they had me do another muga scan to see how my heart was after the AC treatments. Well, my rate went down to 51. They went on and started me on the Taxol but also had me do another muga scan in November. I had to do 12 weeks of Taxol and I stayed sick and very fatigued the whole time on Taxol. After my muga scan in November came back, the results showed my heart rate dropped even lower to 42. They took me off the clinical trial chemotherapy and I just did Taxol. I had to do another muga scan at the end of December. Those results were a little better; they were 46 but still low. I have to do another muga scan in Feb. 2009 to make sure my heart is better and can handle the surgery I have scheduled for March. I had to quit the clinical trial because of my heart not being normal. My last Taxol treatment was Jan. 20, 2009. I was glad to finally be done with chemo. The five months of chemo did take its toll on me, I got a lot of the symptoms and stayed sick a lot, but I knew I would get through it with the great support of my friends and family. I am going to have a double mastectomy in March 2009 with reconstruction. I talked with my chemo doctor and breast oncologist about it and, since they said people with triple negative had a high risk for recurrence in other breast or other parts of their body, I chose to do the double mastectomy. I feel if I can do something to help and try to prevent a recurrence I want to. I know that I still can have a recurrence in other areas of my body but I now am trying to focus on getting through this stage of cancer. I am thankful for finding this site when I did; it gave me insight about triple negative disease and helped me ask more questions to my doctors about this cancer. Now what I do is tell people about breast cancer and the type I have. I inform friends and family to stay vigilant in checking their breast and getting their mammograms. I feel that I got this cancer for a reason, maybe to help someone else going through it or to be a role model to someone. Only God knows why I got this cancer at such a young age but I know He is with me through it all. I was worried about my 7 year old son and how he would handle it, but he has been great through all this. I included him in some appointments so he could meet the doctors and see what is being done to me. My son has actually helped me get through the bad days with his continual care for me. I just want others who are going through this to know that they will make it through, to not be afraid to ask your doctors questions, and to have FAITH and be STRONG. I know there is still a long road ahead of me, but I am grateful for the blessing of great doctors, friends and family support. If someone doesn't have support you can find it here on the triple negative foundation site. I did meet someone here on the site that is a couple years older than me and our treatment schedule is almost exactly on the same time frame. We have been great encouragement for each other and have formed a friendship also. This is proof that there is support here on this site. Don't give up and remember "We are all beautiful, strong women, no matter what we are going through!"