A Decision Made, Another Tumor Board, and a Garage Door!

A Decision:

I decided to go with traditional External Whole Breast Irradiation instead of Accelerated Partial Breast Irradiation with SAVI (APBI). From the first appointment with my radiation oncologist, APBI with SAVI was presented as a really great, easier, quicker option if I qualified. I did qualify – but, the more we learned about the process, combined with the increased pain and swelling I was having from surgery led us to realize it was NOT the greater, easier, quicker option for me.  A sweet friend who has survived her own hellish battle with breast cancer reminded me that just because I COULD “tough it out” didn’t mean I HAD to. Very wise words that in a way, gave me permission to make a better decision for myself instead of the one I “felt” my doctor wanted. Although, to be fair, my radiation oncologist did chime in that in light of the severe pain and swelling I had been having, he did suggest the SAVI might be too painful for me. He and the radiation techs answered a multitude of questions that day and I remembered thinking how “difficult” the process seemed, yet at the same time telling myself silently “I can do this. I can be tough. I can make it.”  (Very typical responses for a trauma victim, apparently. My therapist was quite pleased with the tremendous decision I was able to make by not taking the toughest route. She felt that was a monumental moment for reasons other than the decision itself. Yay me.) Well, SAVI was not for me. I am grateful I had the choice but I am REALLY grateful to my close confidantes who took the time to remind me I didn’t “have to” be tough (cancer is tough enough by itself!) and that just because the “accelerated path” is good for some women – it did not sound like a good idea for me.

Not for me:

• One or more incision(s) for the insertion of the device (I really do not want anyone else cutting into me right now!…. My surgeon, being worried about my pain, even suggested doing the device insertion in a surgical procedure instead of in the office – she was that concerned about my current pain and causing new pain … but then she was worried about how poorly I do with operations and that she’d likely be introducing 3 or 4 additional problems in her effort to reduce the intensity of one different issue.)
• MORE pain and more pain medication (standard treatment includes full doses of pain meds to help patients mange the constant discomfort and … well, pain.)
• SAVI device inserted into my tumor cavity along with the continually growing amount of fluid (seroma) in the cavity…. and the fluid would have to stay in the cavity ALONG WITH the device…… ouch! The fluid was causing so much pain on its own, I couldn’t imagine something ELSE being inserted into that space!
• SAVI device partially inside my body and partially hanging out….. for 10 days…. oh joy.
• Very large gauze dressing covering the outer part of the SAVI, under my arm in an area that was still hurting beyond belief…. uh, nope…. did I mention it would be for 10 days?
• 2 treatments a day for 5 days; including scans and adjustments of the device (adjustments = potential pain and/or increased meds)
• At least 1 course of antibiotics (increased risk of infection due to incision and a foreign device being inserted into my body… duh.)
• 10 days without a shower. (ugh. Yes. I’m a spoiled, privileged, American.)
• 10 days with very little movement (in an effort to keep the device in position because re-positioning causes well, pain.).
• Strong potential of headaches, neck, shoulder, and back pain from limiting movement (my headaches are infamous for being rather ugly.)
• Potential of doing almost all of this, not being able to complete it, and then still having to do the External Breast Radiation anyway. (sigh)
• Missing 8 full days of school ( which would use up ALMOST ALL of my paid sick leave for the school year before the first month is even over!)
• https://www.verywellhealth.com/savi-breast-brachytherapy-device-430391
• https://www.ciannamedical.com/savi/for-women/

What I Chose Instead:

• Whole Breast Irradiation, accelerated  https://www.breastcancer.org/research-news/accelerated-whole-breast-radiation-new-standard
• External Whole Breast Radiation   https://www.breastcancer.org/treatment/radiation/types/ext
• My treatment will likely be “accelerated”. Instead of the traditional 33 courses of treatment (treatments/days), I will have 15 to 21 treatments but with the same amount of radiation (accelerated dosage). Same amount of radiation over a shorter amount of time.
• I might not have to miss any school at all. I likely will…. but it’s not automatic that I will miss… it will depend on how I am feeling.
• 1 treatment a day. Late afternoon, only have to adjust 2 out of 42 classes each week,  for 3 to 5 weeks.
• No one is cutting into me.
• I won’t have a device hanging out of me. Isn’t that a goal for all of us, really?
• Did I say no one will be cutting into me??
• When I made the decision to go with the traditional External Whole Breast Radiation, a huge amount of stress was released. I felt better. No, I’m not overjoyed about the idea of doing radiation – but this option just felt better for me.
• Did I say no one will be cutting into me??

Another Tumor Board:

Last week, I found out my Oncotype dx score is “14”.  https://www.oncotypeiq.com/en-US  A “14” is in the low-intermediate range.  Prior to June 3, 2018 – yep just about 3 months ago – a “14” would have meant chemotherapy treatments (especially considering my high Ki-67 score of 56.8). What happened on June 3?

First, here’s a little bit about the Oncotype Dx test:

The Breast Recurrence Score test is a genomic test—it looks at the activity of tumor genes. Specifically, the test measures the activity of a group of cancer-related genes in your tumor tissue. The activity of these genes can provide information about how your tumor might behave in the future, including how likely it is to grow and spread or whether it is likely to respond to chemotherapy (in addition to hormonal therapy).

After the test, you’ll get a score between 0-100. A low score means the cancer has a lower chance of returning and you have a lower chance of benefiting from chemotherapy. A high score means the cancer has a higher chance of returning and you have a higher chance of benefiting from chemotherapy. Learn more about the test results.  (Currently, 0 – 10 is considered a “low” score. 11 – 25 is “intermediate”, and 26 – 100 is regarded as “high”.)

To date, the Breast Recurrence Score test has been ordered in over 850,000 patients. Many women who received high Recurrence Score results were able to choose chemotherapy as a potentially life-saving treatment. The majority of women with low Recurrence Score results were able to effectively pursue hormonal therapy and avoid the unnecessary side effects of chemotherapy.

Several studies have consistently proven that only the Breast Recurrence Score test can predict whether you will benefit from chemotherapy. Therefore, the Breast Recurrence Score test can help you and your physician tailor a treatment plan specifically for you.

On June 3, 2018 the results of the TAILORx clinical trial was released.   http://www.ascopost.com/News/58904

https://www.cancer.gov/news-events/press-releases/2018/tailorx-breast-cancer-chemotherapy

The federally funded, phase III TAILORx clinical trial showed that most women with hormone receptor (HR)–positive, HER2-negative, axillary node–negative early-stage breast cancer and a mid-range score on a 21-tumor gene expression assay (Oncotype DX^® Breast Recurrence Score) do not need chemotherapy after surgery. The study found no improvement in disease-free survival when chemotherapy was added to hormone therapy in this group, which accounts for about two-thirds of women who participated in the trial. The findings will have an immediate impact on clinical practice, sparing thousands of women the side effects of chemotherapy.

The TAILORx trial enrolled 10,273 women with hormone receptor–positive, HER2-negative, axillary node–negative breast cancer—the most common type of breast cancer. Of them, 6,711 had a mid-range recurrence score of between 11 and 25 and were randomly assigned to receive hormone therapy alone or hormone therapy and chemotherapy.

According to the authors, the findings suggest that chemotherapy may be spared in:

• All women older than 50 years with hormone receptor–positive, HER2-negative, node-negative breast cancer and a Recurrence Score of 0 to 25 (about 85% of women with breast cancer in this age group)  (This is me.)
• All women 50 years or younger with hormone receptor–positive, HER2-negative, node-negative breast cancer and a Recurrence Score of 0 to 15 (about 40% of women with breast cancer in this age group).

The primary endpoint was disease-free survival, defined as recurrence of cancer in the breast, regional lymph nodes, and/or distant organs; a second primary cancer in the opposite breast or another organ; or death from any cause.

Another cool thing about the TAILORx study?

It was funded, in part, by proceeds from breast cancer stamps. Since the stamp made its first appearance in 1998, it has helped raise more than $86 million for breast cancer research, according to the US Postal Service.

The stamp was also the first in the US to be sold at a surcharge in order to raise funds for a specific cause, the Associated Press reported, and its role in funding the TAILORx was critical. The initial $4.5 million of the cancer institute’s $36 million contribution — came from the stamp, said Dina Singer, who is involved in the institute’s use of stamp proceeds. The money was used to pay for the gene test, which costs more than $4,000 per person. FYI: I have been buying those stamps – A LOT OF THOSE STAMPS – since they were first released in 1998. Have you ever bought them? Apparently, A LOT of people have! If you have – THANK YOU!! Makes me think of what I tell my students about bringing fruit for Jog-a-Thon….. “If everyone brings a little, then we’ll have A LOT!”

Seems clear, right? No chemo for me. Yay.

Not so quick. Apparently, according to my oncologist, my age of barely-55 is really, really close to 50 for the purposes of these results, and in the big picture as compared to women in their 70’s or older. Also, I still have that really high Ki-67 score which means my breast cancer is a Luminal B cancer, which can often have a better longterm overall survival rate (OS) when treated with endocrine therapy AND chemotherapy. (Some studies have shown an 11% increase in OS if both chemo and endocrine therapy are added to radiation, as opposed to just chemo and radiation  or just endocrine therapy and radiation. To be fair, a lot of Luminal B cancers have other more aggressive factors than my cancer does and a lot of women with Luminal B cancers are younger than me. All good things to remember and consider.) So, it makes it not quite so clear. At least not to me.  Oncologists in the US don’t really use the Ki-67 score on its own for treatment decisions anymore. The oncotype dx has become the gold standard in the US for my type of breast cancer. The oncotype dx test includes Ki-67, but doesn’t rely solely on that score. Plus, the Ki-67 test has 3 different ways of being calculated – which can result in different results. So, it makes sense that oncologists don’t use it on its own anymore to develop treatment plans.

At least doctors in the US don’t use it on its own anymore. In Europe; however, it’s a different story apparently. Since the majority of healthcare in Europe is offered through “Universal Healthcare”, most women with breast cancer do not have the oncotype dx test performed unless they can pay for it themselves because the oncotype dx test is quite expensive. My Ki-67 score of 56.8 in Europe would mean chemo for sure.

You are probably thinking right now that I have spent WAAAAAY too much time reading about breast cancer, genomic tests, treatment options, etc, etc, etc on the internet…. and, you might be right. But, also, most of the time it helps me make sense of this thing that really doesn’t make any sense. And, before I get “too invested” in a study or something I’ve read, I do pass it by one of my docs  – find out if the study is reliable, current enough, and if I’m interpreting it correctly. Often, I have been on the right track. Sometimes, I’m not seeing the whole picture. Which, makes sense – I’m not an oncologist!

All that being said, my medical oncologist (MO) was also thinking that based on age, Ki-67 score, low-intermediate oncotype dx score, tumor size being almost 2 cm, luminal b category – that he would like to present my numbers and case to the Tumor Board again and see what their recommendations are for treatment: chemo, radiation, then endocrine therapy OR radiation then endocrine therapy? He asked me what I thought about my case going to Tumor Board again, I told him I thought that was a great idea. It’s not that I WANT to do chemo…. no one WANTS to do chemo, are you kidding me? But, I also don’t want to die. I don’t want a stage 4 metastatic recurrence.

Honestly, I don’t want any of this shit, but I’ve got it. So – I’m just trying to make sure we do everything we can that makes sense to us, to me, for us, for me.

You might be asking, then why not just do the chemo? Well, good question. Because chemo has a whole set of potential horrible side effects of its own to consider – many of which are worse than the breast cancer itself. And, factor in that both of my parents had terrible side effects to chemo. My father died from pneumonia and septicemia – brought on by 5 chemotherapy treatments for lymphoma. My mother was on methotrexate (a chemotherapeutic drug used widely for rheumatoid arthritis ) for almost 2 years during a clinical trial with Baylor School of Medicine. While she was on it, she literally went bat-shit crazy. Literally. (We also had an actual flying bat get into the house during that time – I was a teenager and it came in through the attic while the drop ladder was down – she went freaking BAT SHIT CRAZY trying to kill that bat with my Chris Everett wooden tennis racket.) She was taken off the medication after trying to kill herself. So…… I could maybe have a genetic predisposition to not doing so well on chemo. Who knows. Like I said, I don’t WANT to do chemo….. but neither did my friend who died this summer or my friend who died a few years ago – both from breast cancers very similar to mine and both who did not do chemo in the beginning, and both who had stage 4 metastatic recurrences within 2 years of initial diagnosis and both who died within a year after that. I don’t want that either. Of course, neither did they. No one does. My oncotype dx reports gave me a 2.5% chance of better outcome if I did chemo + hormone therapy than if I did hormone therapy alone. The margin of error is about 1.75% to almost 10%. had to think about that, as well.

So, my MO (Medical Oncologist, remember? Pay attention – there may be a test…. you don’t know… I mean I AM a teacher!) is presenting my case at a second Tumor Board at MD Anderson Rust tomorrow morning to get about 8 other “second opinions” from other oncologists and pathologists. We have decided to go with their recommendation. If they say “no chemo, radiation only” – then we schedule radiation. If they say, “chemo, then radiation”, then we start talking chemo. And then, we keep moving forward.

 

A Garage Door:

When I found out I had breast cancer, I had a friend who had been through it and she warned me about being distracted while driving. Honestly, I did have a few times the first few weeks where I caught myself with my mind wandering while driving. One time I sat at a green light longer than was necessary, because, well… it was a green light…. I like the color green. The second time (which was a bit more worrisome), I caught myself going only about 30 mph on the freeway….. just mind wandering, speed getting slower and slower. Um, not good.

Well, last week, I caught myself as I rolled s-l-o-w-l-y into one of our garage doors. Geez. Yep. Just rolled right into it. I’m okay and rental car is okay. The garage door and my pride are not. I had a hell of a headache and was just relieved to be home and in my driveway. I had no reason to doubt I had put the car in “park” – I mean, don’t I always put the car in “park” when I stop in my driveway? (Okay, so there was that other time about 8 years ago involving steroids, Wendy’s french fries, and the corner of our house by the garage door… but we’re not talking about that day, okay.) I placed my hands in my lap, lowered my head, closed my eyes and just breathed. I really did have an awful headache and wanted to just “be” before I got out into the sunshine.

Guess I was gonna “BE” surprised.

Guess what I didn’t know was that I had put the car into that weird 1st gear at the bottom of the gear shift, instead of “park” at the top of the gear shift. I heard a crunching noise and looked up and thought, “What? Where am I? Is that the garage door? Huh?”

Yep. I thought ALL of that BEFORE I thought to put my foot on the brake. My brain was truly in another place. Apparently, it’s fairly common for people going through cancer. MANY, MANY people on the support group feeds relayed their own stories of driver-dysfunction during this time. Oh well. I guess when Robert Frost said, “The only way out is through”… he didn’t mean literally through the garage door.

It was just a garage door, I am thankful for that. It can be repaired. I now, however, must be prepared for years and years of teasing from my family…… from where I sit right now – years and years of anything, including teasing from my family and friends, sounds just wonderful to me. ♥