Prognosis Factors

There's one questions that I can not bring myself to ask any doctor that we've met with so far.

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.

All the Best...and All the Worst.

In October of 2012, I heard a snippet of a comedy set from comedienne Tig Notaro. They used an excerpt from a show she did in LA on This American Life (one of my favorite things ever). I love so much of the material they use for This American Life, but I've never purchased anything extra - no books, no dvds, etc. I haven't even seen Mike Birbiglia's movie (ha!). This set though, called Tig Notaro - Live!, I went home and purchased immediately.

Tig was diagnosed with breast cancer and just hours after finding out, she went onstage and did a live comedy set. I can't imagine why I was so drawn to it, but since last October, I've listened to it over and over again. I am a person who LOVES to feel feelings. The intersection of comedy and grief in this recording was so poignant - I never got tired of it.

I have listened to Live! a couple of times in the last few months. What struck me the hardest this time around is a section where Tig says that - as she gets diagnosed - she is experiencing all of the best and all of the worst times in her life. I hate to say it, but I feel like I'm in the same boat. Luckily, I don't have as much on my plate as she did, but it still feels overwhelming.

It's hard to handle the "good stress" in my life. Stress that I would have happily - even giddily - embraced a year ago. Applying for jobs, interviewing, planning the course of my career...

Making decisions about my life, my work, long-term goals, and all these other little choices is just hard. I just started working full-time, I just finished my master's degree, and we just moved into a great new area. There's so much to do and so much to experience. 

My personal issue now is the difficulty in negotiating how much having cancer should factor into making decisions. Should I just plow through, pretending like it never happened? What if that isn't good for me? What if I don't ever reach any of the goals I want to reach? I don't know if I should be okay with that. So...if I seem in a haze lately - that's why... I don't want to be to hard on myself, but I see no benefit in coddling myself either.

Decisions, decisions...

**Someone fun that I know suggested that I use Bitstrips to spice up the visuals of this blog, since I was wary of putting a bunch of actual pics of myself. I think I love it.**

Patience

Well... I had a doctor's appointment on Monday. It was time for me to get my monthly shot (a bone strengthening medication) and some labs done. 

I don't know why, but I didn't ask my husband to go with me. Probably because I went for the shot alone the first time. This time, though, I met with the oncologist and he did a quick exam.

I'd been on tamoxifen for 35 days (38 days today). I'm going to be honest, I was hoping for something. But so far, there is no shrinkage - I was/am very disappointed. Shrinkage after 5 weeks is a lot to ask though, so we're hanging in there.

I'm scheduled for an ultrasound and mammogram at the end of this month. That will better show results (if any).

The great thing is I have a lot of options. Some are better than others, but they are options - a privilege not afforded by everyone.

Gratitude

It's Thanksgiving, and I have a lot to be thankful for. It isn't perfect, but I have a good life. I am often in situations where I just don't understand how I got so lucky. I'm a people person, and good people, people I love, literally give me life. They give me energy, they bring me excitement, and right now, they make me feel loved.

I'm not the most selfless person - I frequently get overwhelmed with life and thoughts (even pre-diagnosis) and as a result, I'm not the most thoughtful person either. I get distracted.

A byproduct of a cancer diagnosis is suddenly having to deal with all the communication surrounding the patient (me). People say that when times get tough, you see who your real friends are - but I'm not experiencing that type of distinction. Right now, my times are tough - really tough, and instead, I'm getting to see how amazing my friends, colleagues, and family are. People are stepping up to the plate.

Not to brag - but my peeps have been out of control supportive. I always considered relationships real - no confusion there. This experience has given me an real opportunity to reflect and appreciate how great the people in my life are. Cards, flowers, gifts, emails, texts, offers to help (which I take seriously - I will call you, don't act all surprised)...none expected - and none have gone without appreciation. 

You all make the world (and my life) a better place.

Thank you all.

Time to Grieve

During my personal time of panic, right after being diagnosed, I had this conversation with the Nurse Navigator at the medical center. I was sitting in her office and asking her questions. Soon, I started to cry (this is how most conversations were going at the time). In those first few days, I wanted reassurance, I wanted someone to tell me that I was going to be okay. I wanted someone to tell me that I could still live my life – the one I was currently living. I wanted someone to tell me that I could still have kids and be happy with my husband. I think what I really wanted in those first few weeks, was for someone to just take it back. It didn’t need to be some dramatic production, but I needed someone to just sort of roll things back. I was willing to pretend like nothing happened, if they were willing to tell me they made a mistake.

FYI, Nurse Navigator was not having any of it. She was not about to let me get all entrenched in denial. That afternoon, I told her I felt sad because I just really wanted to have babies…like, now. I also felt bad because (at the time) we were planning on a double mastectomy, which meant I wouldn’t be able to breastfeed even if I would be able to have children. This is what she said to me, “I know, it’s hard, this is just something you will have to grieve.”

At the time, it felt like a slap in the face. Mostly because I couldn’t conceptualize grieving the thought of something. I couldn’t conceptualize grieving an idea, or my future, or a desire. It didn’t make sense. But it does now. I’m going to be honest though, I can’t do it. I am explicitly unable to put some of these things to rest.

I don’t know if I’m being unrealistic, sometimes I feel like I just don’t know any better, but this is how it is right now.

Treat Me Right

When I was first diagnosed, we went through the process of consulting with doctors and contemplating treatments. Just thinking about the various directions in which we could go was overwhelming. After tumor board, we had resigned ourselves to the fact that I would have to do surgery, chemotherapy, and radiation. I think one of the most difficult aspects of being diagnosed with cancer is not the cancer itself, but understanding the difficult side effects that come with treatment. Surgery was cool, radiation sounded okay, but chemotherapy scared the crap out of me.

During the bargaining phase of our grief, C and I tried to wiggle our way out of chemo...the docs were not amused. Finally though, I decided that it was going to be okay - I was going to endure (obviously, cause you, know...to kill the cancer). I made plans. I called a friend who does hair and asked if she would cut it short, and eventually shave it. I researched wigs - specifically turning my own hair into a wig (it's totally a thing). I made a mental list of friend who offered to sit in sessions with me - sorry if you were just saying it to be nice. :)

When we found that the cancer has metastasized, though, everything seemed to change. It's hard to tell though, if the change happened specifically because of the metastasis.

A few weeks ago, when my bone biopsy had been scheduled, before I had results, we met with an oncologist and went over our Plan A and Plan B. They are markedly different:

Plan A: Stage III: We do chemotherapy first so that the medication can go through the body and kill any renegade cancer cells. Then surgery, then radiation to the chest wall.

Plan B: Stage IV: Endocrine therapy. See how it goes. Take it from there.

If you've seen any of the previous posts, you'll know that we are at Stage IV. The oncologist basically said that we don't want to exhaust our options. We want to try different methods, see what works, and proceed once we know how the tumors respond. Many women prevent breast cancer and/or prevent recurrence by taking tamoxifen. Tamoxifen is a hormone receptor suppressor that blocks the flow of hormones to the tumor. Many breast cancer tumors are very sensitive to estrogen and progesterone. Right now, this little pill keeper is my BFF. I used to have a moment of panic when I didn't put my keys, or my makeup in my purse. Now...on my drive to work each morning, I reach into my purse and make sure this baby is with me.

For the time being, I take tamoxifen everyday, along with my other vitamins. Because the tumor on my spine has already started to wear a little on the bone, I also get a monthly injection of Xgeva, which is typically used to treat osteoporosis. One doctor recommended injections of Lupron as well. Lupron shuts down ovaries and all hormone production. It also puts the patient into menopause for about a month (for reference, women usually experience menopause over a period of two years). I can handle a lot, but I can't handle menopause at 28. Funny how we have our tipping points. I told my oncologist that I'll do Lupron if I don't see decent results in six months. He's down.

Almost one month in, we aren't doing too shabby. I feel grateful each day that I get to hold on to a little bit of "normal" by doing this first. I don't know what the future of my treatment plan will bring, but I'm not inclined to worry about this now. Two weeks ago, I started to feel hot flashes. They don't really bother me much. I find them more amusing than anything - luckily, I'm too brown to look flush.

Achieving the Everyday

One thing that I have been striving towards is stability in my everyday life. I have to say, 7 weeks post diagnosis, I have very few unexpected bouts of crying (compared to before). Success*! A major part (I think) is actually starting treatment. This is the beginning of this part of my life where I take action and do what I can to save my own life. The day to day feels better, knowing that something is being done.

I can't say that I don't love my everyday life - it is pretty sweet. I love my husband, I love my routine, I love Candy Crush...etc. We aren't without stressors, but things we love aren't meant to come easily. Aside from the everyday, I'm trying to be more present so that everyday is good. I am also trying to inject my weeks with little things I love.

A few weeks ago, C and I killed some time running some canyons in San Gabriel Valley. It's where we went on our first official date.

It was fun to go back. It's been over five years now, and we have been married for two. Time races.

*Success is totally relative.