HER2 Support Group Forums - View Single Post - 12 years Stage 4 - Still A-OK

TiffanyS · 09-26-2016, 05:12 AM

Hello Mamacze,

As a new person to this forum, it makes me very happy to read that you are still okay after 12 years of cancer treatment. I was diagnosed with HER2 positive breast cancer in January, and had a full mastectomy in February along with 14 lymph nodes removed (eight has cancer in them). After surgery, we found out my tumor was 7 cm! I was in shock as I never even felt a lump! I stared Docetaxel, Carboplatin, and Herceptin in March, and 25 rounds of radiation at the end of July. I also started the drug Tamoxifen in mid-July. Everything was going well until a week before I was supposed to finish radiation. At that time, we noticed that the scab over my scar tissue had come off, and the doctor decided to biopsy the area. It turns out that there were still cancer cells there. I went back to see my surgeon, who told me the growth was left-over from my first surgery, and that he could remove it and all would be fine. In the meantime, my oncologist sent me for tests in order to “re-stage” me. The ultra-sound and bone scan were clear, and the breast MRI showed three small masses in my surgery site, but nothing in the lymph nodes. We were all happy with these results, and I was getting ready to have surgery until we got the results of my CT scan. It turns out that there are new spots on my lungs. One is 1.4 cm, which is not huge, however, there are dots on both my right and left lungs, and a lymph node in my centre chest that is quite large. This means that that cancer has spread! Given these new results, I will no longer be having surgery, and will be starting TDM1 tomorrow, which I will be taking every three weeks for an indefinite period of time. My oncologist is also going to try and get me into some clinical trials. She told me that I am a rarity, and that she’s never known anyone who has gone though the treatment I’ve gone through, and still have cancer. She says that my breast cancer is the most aggressive cancer she’s ever seen, which doesn’t make me feel confident. Based on the research I’ve done on TDM1, the drug looks promising, however, right now, my biggest fear is that my oncologist is going to tell me that I have 6 months to a year to live, even with the new medication, and that’s not what I want to hear at the age of 41! It’s nice to hear that someone else has gone through this and is still around after 12 years, and I am glad that I found this forum in order to read your posts. It’s helpful to know that there are other’s out who have gone through the same thing as me and have survived!

09-26-2016, 05:12 AM	#37
TiffanyS Senior Member Join Date: Sep 2016 Posts: 459	Re: 12 years Stage 4 - Still A-OK Hello Mamacze, As a new person to this forum, it makes me very happy to read that you are still okay after 12 years of cancer treatment. I was diagnosed with HER2 positive breast cancer in January, and had a full mastectomy in February along with 14 lymph nodes removed (eight has cancer in them). After surgery, we found out my tumor was 7 cm! I was in shock as I never even felt a lump! I stared Docetaxel, Carboplatin, and Herceptin in March, and 25 rounds of radiation at the end of July. I also started the drug Tamoxifen in mid-July. Everything was going well until a week before I was supposed to finish radiation. At that time, we noticed that the scab over my scar tissue had come off, and the doctor decided to biopsy the area. It turns out that there were still cancer cells there. I went back to see my surgeon, who told me the growth was left-over from my first surgery, and that he could remove it and all would be fine. In the meantime, my oncologist sent me for tests in order to “re-stage” me. The ultra-sound and bone scan were clear, and the breast MRI showed three small masses in my surgery site, but nothing in the lymph nodes. We were all happy with these results, and I was getting ready to have surgery until we got the results of my CT scan. It turns out that there are new spots on my lungs. One is 1.4 cm, which is not huge, however, there are dots on both my right and left lungs, and a lymph node in my centre chest that is quite large. This means that that cancer has spread! Given these new results, I will no longer be having surgery, and will be starting TDM1 tomorrow, which I will be taking every three weeks for an indefinite period of time. My oncologist is also going to try and get me into some clinical trials. She told me that I am a rarity, and that she’s never known anyone who has gone though the treatment I’ve gone through, and still have cancer. She says that my breast cancer is the most aggressive cancer she’s ever seen, which doesn’t make me feel confident. Based on the research I’ve done on TDM1, the drug looks promising, however, right now, my biggest fear is that my oncologist is going to tell me that I have 6 months to a year to live, even with the new medication, and that’s not what I want to hear at the age of 41! It’s nice to hear that someone else has gone through this and is still around after 12 years, and I am glad that I found this forum in order to read your posts. It’s helpful to know that there are other’s out who have gone through the same thing as me and have survived!