I can't muster the courage to ask how long I have to live.
First, I would feel like I was being super dramatic if I did. Other reasons include: 1) it is so cliché, 2) I don't feel it's fair that I have to contemplate this, 3) the information would likely haunt and overwhelm me, and so....4) I don't want to know.
Thinking about it too much is what leads to a lot of the conflict I feel about my future and my long-term plans. Everyone will die...eventually, but my eventually seems like it might be sooner than originally anticipated. When I was first diagnosed and sharing the news with those around me, one of the things that reassured me most was that no doctor told me I had "x" number of years to live. In light of such devastating news, this was a real relief.
I don't believe that any doctor can be extremely certain when they attempt to predict survival - and everyone has heard stories where doctors predicted incorrectly. Instead, my oncologist went through a set of prognosis factors* with us to give us an idea of what's working for me...and what's working against me in this sitch:
1. Size: My original breast tumor was approximately 4.5cm in length. That's pretty big. It's the tumor that prompted me to schedule an appointment to see a doctor. This tumor and it's location in my left breast make me a candidate for a mastectomy rather than a lumpectomy. If tamoxifen shrinks my tumors down a little, it will make surgery easier. When breast surgeons remove a breast tumor, they have to remove a clean margin around the tumor to make sure they get it all...so my 4.5cm tumor and a clean margin would be a large chunk of boob. Verdict: Size, not working in my favor.
2. Lymph Node Status: Breast cancer will often spread to the surrounding lymph nodes first. Cancer can spread once it's gone to the lymph nodes, and pathology reports will include results from the biopsy to see if there is lymphovascular invasion, which means that cancer cells are found in the lymphovascular system. I have multiple (numerous) affected lymph nodes. I tested negative for lymphovascular invasion, but false negatives for this are very common. Verdict: Lymph nodes, not working in my favor.
3. Grade: Grade is different from stage, but is also categorized with numbers, so it can be confusing. There are three grades, and cancer grade does not factor into staging. Grade is an indication of the aggressiveness of the cancer. The pathologists will look at samples from the tumor(s) and see how similar they look. The more similar they look, the better, this means that they are not multiplying, growing, evolving very quickly. Most patients my age have very aggressive, fast-growing cancer. My tumors, however, have been categorized as grade I. Samples from all three sites (breast, lymph nodes, and spine) look the same. So....that's weird. Verdict: Grade, totally working in my favor. Yay!
4. Hormone Receptor Status: Tumors are made up of all sorts of things. For real, Google it. When doctors test a tumor, they check for proteins that are hormone receptors. A hormone receptor is a protein that feeds on estrogen or progesterone. Tumors are categorized as hormone receptor positive or hormone receptor negative depending on the presence of these proteins. My tumors are very hormone receptor positive, the tumor in my breast is 99% positive for estrogen receptors and 90% positive for progesterone receptors. This is a good thing because it gives us endocrine therapy as an option. Verdict: Hormone Receptor Status, working in my favor.
5. HER2: If a tumor is HER2 positive, it contains proteins known as human epidermal growth factor receptor 2 (HER2). HER2 positive breast cancer is typically more aggressive, but with it comes other drugs and treatments that may work (like Herceptin). What's really tough is when someone tests negative for HER2 and hormone receptors, that can really limit treatment options. Verdict: HER2 status, working in my favor - go me!
6. Metastases: Metastatic cancer is when cancer spreads beyond it's original location. It's different than having two different types of cancer (ex: breast cancer and lung cancer at the same time) and doctors check the pathology of the tumors to learn if they originated from the original cancer, or if they are distinct. Metastatic cancer is bad, as I'm sure you've heard. I am grappling with why...but basically (from what I understand), once it's in your system just moving about, it's there...so...that sucks. As I mentioned before, metastases means Stage IV cancer, which is not considered curable, which is why I can't get aggressive treatment, put this all behind me, and have some babies (Bitter? Yes, thank you for noticing). Here's the good thing though, metastatic cancer to the bone is not as bad as metastatic cancer to a visceral (vital) organ. So...yay? Verdict: Metastases, NOT working in my favor. Bone metastases, working in my favor...considering...
This is a long boring post, I know this, but I think it answers a lot of questions that people have. After going through this with my oncologist, the primary factor that I choose to focus on is the grade. I am so grateful every-single-day that I have a slow growing cancer. It's like my little security blanket and I will take it with me everywhere as long as I can. Considering that my cancer has already spread, knowing that it can't really go anywhere fast is very comforting.
*These are just a handful of prognostic factors that my oncologist decided to go through with me. This article lists more prognosis factors. Relevant prognosis factors are uncovered throughout the diagnosis and treatment process. Please note, that this is the first article I found, it is from 2007, and some things may have changed.