Prognosis Data

More recently I’ve had trouble staying positive and not being scared. This is directly correlated with the amount of internet research I've done on IBC stuff. I’ve had everyone close to me over the last week essentially ban me from the inter-webs. However, I'd like to argue that learning this stuff and coming to grips with the situation at hand isn’t necessarily a bad thing.

The first few weeks of all this were actually pretty great- no real symptoms to speak of, lots of cards, fun gifts, and nice messages. You almost forget for a second the reason all this love is getting showered on you- oh yeah, I have a death sentence on my life at the moment! I deep down truly believe I’m going to make it, that God is going to perform an amazing miracle and get all the glory for saving my life. So you take that on top of getting told multiple times a day that- “You’ve got this!” “Cancer doesn’t know who it picked to mess with!” “You are going to beat the odds Ashleigh!”…and soon you forget how grim the situation actually is.

All that to say, I don’t think a reality check was totally out of line this last week. For me, understanding the data and stats is part of my DNA (anyone that knows me personally will be nodding their head right now). There are currently three known hormone receptors on breast cancer cells- estrogen, progesterone, and HER-2. These describe how the cancer cells are fueled to grow. If you have one of these receptors, the doctors can use targeted therapies to decrease your cancer's ability to grow. If you have none of these receptors (aka triple negative), then it is unknown what is fueling your cancer cells and therefore your cancer will not respond to these targeted therapies.

I found a paper from MD Anderson that described the prognosis of patients like me, IBC & triple negative, vs. IBC & hormone receptor positive patients. The conclusion of the MDA paper was that the outcomes for IBC folks are much worse for triple negative than other hormone receptor types. Below is a chart from the paper that shows survival curves for 316 women with non-metastatic IBC that were treated at MDA with similar drugs and treatment as I will receive. The four lines represent four subtypes of hormone receptor status in the study - triple negative (TNBC), HER-2 positive (HER-2+), estrogen positive (ER+), and both ER and HER-2 positive. The y-axis (vertical) is the % of people still alive and the x-axis (horizontal) is the number of years.  Here are my thoughts on the data (you can click on the picture to make it bigger fyi):

For anyone whose eyes glazed over at the chart, the takeaways are:

• IBC triple negative folks treated at MDAnderson in more recent years have a 50% chance of making it 2 years and 42% chance of making it 5 years, while the other IBC subtypes are significantly higher, for example IBC HER-2+/ER+ has a 73% 5-yr survival rate
• After 5 years, the other subtypes often have the cancer show back up making the survival curves continue to go down. For the 42% of triple negative patients that make it to 5 years, cancer rarely shows back up for them.
• My plan is to make it to 5 years, throw a giant 5th bday party for David, and then put all this behind me. If I make it past the 2 year mark, I can essentially move on with my life at that point. Sounds great, right?

While the stats did freak me out at first, I know how probabilities work- while there is a % prognosis, I will be either a 1 or a 0- alive or dead in 2 / 5 years. Seeing blogs or supposedly "survivor" stories of IBC patients that have passed away is obviously depressing, but some of these women do make it through. Why can't it be me? In fact, after searching for survivor stories and only finding ones where the women ended up passing away, my friend Jamie hooked me up with an IBC triple neg survivor contact:

I spoke with Michelle, the first fellow-IBCer I've met, for an hour this week. She first started having symptoms when her fourth child was 2 weeks old. She was misdiagnosed and on medicine to treat "an infection" for 9 months(!!). She had 24 positive lymph nodes in her armpit and some under her breastbone. So there she was with the worst of the worst breast cancer, single parenting 4 kids under 6 years old. She didn't have a complete response (there was cancer still there after the chemo) and the surgery didn't have clear margins (the surgery did not remove all the cancer). Her doctor put her on an experimental chemo drug that ended up saving her life. That finally cleared the cancer up, they radiated the heck out of it, and she is still here six and half years later- praise the Lord!!

Talking with an IBC survivor out past the 5 year mark definitely helped this week. Michelle's main piece of advice was to focus less on the stats and more on caring for your kids. I will try to limit my IBC-research in the future and not focus so much on the "stats". But I will say this, now knowing the stats, if I do make it, everyone will know that it truly was a miracle!

"Indeed, we felt we had received the sentence of death. But this happened that we might not rely on ourselves but on God, who raises the dead." - 2 Corinthians 1:9