Update for June 12, 2015

Today is our 22nd anniversary. (We actually had to go back to 1993 and do the math to figure out how many years we’ve been married.) 🙂

This husband of mine . . . the absolute best! The last ten months have given a whole new meaning to “in sickness and in health”. He hasn’t missed a beat in all these 22 years. Loving. Serving. Caring. Encouraging. There’s none better than this one.

Happy anniversary Patrick. I didn’t even know it was possible to love someone so much. Thank you for loving me back and loving me so well.

Okay, now I’ll stop with the mushy stuff. 🙂

Wanted to give an update since it’s been awhile.

I am 5½ weeks post op and doing very well. So well, in fact, that we were able to go on vacation with the kids before the craziness of our summer schedule begins. I relished every moment and am so grateful we were able to have this time to relax and recharge after all we have been through in the last 10 months.

Since my last post, when I told you the good news about my pathology report, several of you have asked exactly what that means for me and my future. If so many have asked, several more are probably wondering and just haven’t asked yet, so I wanted to explain more throughly.

After hearing it in these terms, I think you will understand even more what a HUGE miracle has taken place here!

Cancer diagnosis and prognosis are very difficult to understand, even when you’re the one going through it. In addition, my particular type of breast cancer and subtype make it even more confusing, but I will try to explain this to you as my doctors have explained it to me.

On my first visit to MD Anderson I was given the statistics for past MDA patients, like me, with Triple Negative Inflammatory Breast Cancer. I have never posted those stats on here because they’re so grim. However, I will share them with you now, only so you can see what we have been dealing with and why my pathology report is so remarkable.

First of all, Inflammatory Breast Cancer is very rare. It only accounts for 2-4 percent of all Breast Cancer, but accounts for over 10% of Breast Cancer deaths in the U.S. due to it’s aggressive nature. In addition, I am Triple Negative, also very rare. Out of all patients diagnosed with Breast Cancer, only 7-9% are Triple Negative. So yeah, pretty rare all around.

And for those who don’t understand the Triple Negative part, here’s a quick explanation:

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.

Because it is so rare, and so complex, there are very few treatments available for people like me.

Here are the simplified stats:

Triple Negative IBC patients treated at MDA in more recent years have a 50% chance of making it two years and 42% chance of making it five years. After five years, the other subtypes (hormone positive) often have the cancer show back up, but for the 42% of triple negative patients that make it to 5 years, cancer rarely shows back up for them.

My doctors wanted me to know what I was dealing with, but didn’t want me to focus on those stats. They were optimistic, even with my diagnosis, because a promising phase 2 clinical trial (only available at MDA) for those with HER-2 Negative IBC (and those with Triple Negative as well) was currently accepting patients and they felt like I would qualify as a participant for the trial.

The research team was limited to 40 patients. (They only get about one patient a month with this diagnosis that qualifies for the trial.) 

They felt that if I responded well to this experimental chemo, I had a good chance to make it to five years, and if they could get me that far, then I should be okay. The question was how my cancer would respond to the treatments, that, they said, would determine everything.
There are several factors that are considered in order to qualify for the trial including age, past health history, insurance approval, and whether or not the patient has had prior treatment for their current diagnosis. Thankfully, I qualified. I was number 29. I agreed to be a part of the clinical trial for a couple of reasons.

Firstly, those stats were frightening (even though MDA told us they were actually quite good compared to IBC stats outside of MDA), secondly, I didn’t want to waste this. If someone in the future is given this dreadful diagnosis, I want to do whatever I can to help them beat it. Someone else did that for me, which is why this clinical trial was an option, and I wanted to do it for the next person.

Lastly, I didn’t have a lot of other options because of the rarity of my disease and the limited number of treatment options available. That is why we made 20 trips to Houston during chemo treatment. I will forever be grateful for all that made that possible, from grandparents watching the kids while we made those all those trips, to medical researchers working hard to give people like me a chance to see my kids grow up.

(Interesting to note, I spoke with my research nurse at MDA this morning and she just enrolled the 40th and final patient for this trial this week. VERY thankful I was diagnosed within the time frame to be a part of this very promising and targeted treatment for Triple Negative IBC.)

I had 17 rounds of chemo. Then I had surgery. Then we found out the long awaited answer to my chemo response via the pathology report. 

How do the results of the pathology report predict prognosis?

Although pet/ct scans can give a somewhat accurate look at the affected area, it doesn’t always pick up on all the cancer cells that may be present. The only way to know exactly how much, or, if any cancer remains, is combing through the removed tissue to find cancer cells and/or measuring the size of the removed tumor and lymph nodes and comparing them to the size they were prior to treatment.

The chance of recurrence directly correlates to how well the cancer responds to chemo and prognosis directly correlates to recurrence. Basically, chemo response predicts the percentage of someone living through this, or not.

So, if someone diagnosed with Breast Cancer underwent chemo, then had surgery, and pathologists measured the size of the removed tumor and lymph nodes and found they had shrunk 70% since they were first measured at the time of diagnosis, the doctor would tell them they have about a 30% chance of recurrence or put another way, they would have a 70% chance of beating cancer and no recurrence.

In my case, recurrence would mean that I would go from stage 3 (completely curable) to stage 4 (a prognosis of 2-18 months when dealing with Triple Negative IBC.) Obviously, we wanted the lowest possible percentage for recurrence.

Here’s what my pathology report means for my future:

When the pathologists studied my removed tissue, there was nothing there to measure. No tumor, no tumor bed. Not even scar tissue.

They combed through the tissue to look for any cancer cells and found ZERO. When they studied my removed lymph nodes, again, they found no cancer cells and they measured normal size for non cancerous nodes.

As my surgeon told Patrick, “When I saw the breast tissue and placement of the lymph nodes, all was as it should be. It was like the cancer had never even been there.”

My pathology report indicates that since there was nothing there to measure to give a percentage, then my percentage for recurrence is 0%. I had a complete response to chemo and statistically, those who have a complete response never have a recurrence. It can happen, but it’s not likely.

Because of those results, my team of doctors said they are very optimistic that I will make it to the five year mark, and then, because I am Triple Negative, they’ll call it cured.

However, for the next five years, doctors will refer to my diagnosis as NED or, no evidence of disease.

I prefer to refer to the cancer as GONE, HEALED and MIRACULOS.

I have seen Dr. Hagans three times since my surgery and each time I walk into the room he hugs me and tells me what a miracle I am. He told us that about 5% of BC patients have a complete response and of those with IBC, it is only about 1%.

(I am not sure how this all works with other types of cancers, or how chemo response is measured in those who have surgery first, then have chemo. This was just how it was explained to me for my particular case.)

Sorry that was so long, but hope that better explains the pathology, prognosis, and percentage information I’ve been telling you about.

Now for a quick update:

I have my six week post-op visit with Dr. Hagans next Monday morning. If he clears me, I begin radiation that afternoon at 2:00.

I’d like to insert this here; I’m all about second, or even third opinions when it comes to medical care. We have utilized this approach with every stage of my cancer treatment. I highly recommend you do the same if you experience any type of medical problem, regardless of how serious it is.

After meeting with the radiation oncologist at M.D. Anderson we felt we needed a second opinion. Radiation at MDA is extremely aggressive (as is the chemo and surgery there). This type of radiation (which is only administered at MDA) is an extreme, twice-a-day radiation approach with horrendous and permanent side effects. I’d rather have horrendous and permanent side effects than not be here of course, but if I do not need that much radiation to remain alive, then obviously, I’d like to forgo the aggressive nature of their approach.

We met with Dr. Bryan Imamura, the radiation oncologist for CARTI in Conway, for a second opinion. As we have with every other phase of treatment, we feel a great amount of peace about moving forward with radiation here.

In our first visit with him, his advice was to wait until after my surgery and get the results of the pathology report before we made our final decision. If the pathology report showed several lymph nodes and/or tissue with cancer cells, he advised me to reconsider radiation at MDA. However, if I had only a few lymph nodes with cancer, or even better, if pathology showed I had a complete response with chemo, then he felt I would not necessarily benefit any more from the aggressive radiation approach at MDA than I would receiving standard of care radiation treatment at CARTI.

Since I had a MIRACULOUS complete response to chemo, any benefit achieved with aggressive MDA radiation does not outweigh the risk it presents, thus we prayerfully decided to undergo radiation close to home.

CARTI offers the most technologically advanced radiation oncology treatments available, once they are proven effective– standard, not emerging treatments, so nothing experimental. They invest in new technology before 90 percent of the providers in the country, so even though I will only have to travel five minutes from my house, I feel confident I am receiving exemplary care for this phase of my treatment (which by the way is the LAST phase)!

So, if Dr. Hagans clears me, I will begin the first of 28 daily rounds of radiation this Monday. I will receive a dose each day, Monday through Friday, with weekends off. Each visit will take about 15 minutes and the actual radiation will only take 3-5 minutes to be administered. I could actually leave my house, receive treatment, and be back home in 30 minutes. Much better than a 16-hour round trip drive, all day at the hospital, and three days away from my kids!

Wow. I have so much to be thankful for; God has faithfully carried me (and continues to carry me) through the hardest season of my life and we’re almost there!

I have been asked multiple times why I am proceeding with radiation even though I received a cancer-free (or NED) pathology report and I will explain that in another post. I’m feeling like if you’re still reading this, you really love me, and I’ll return the love by ending this post now. 🙂

Sorry this one was so long.

Please continue to pray for me over the next six weeks as I undergo radiation. I’m not at all worried about it, but SO ready to be done with all of this. I’ve got things to do! 🙂

Love to you all,

Tina