Okay, this post is mostly just for me, to try to organize my own thoughts. Very self-serving, but figured I would take you along for the ride. It is going to be confusing AF so buckle up.
The next step in my odyssey is deciding if I would benefit from chemotherapy. This is a very complicated decision-making process. I will try and outline it as clearly and simply as I can, but that will never happen because I am long winded, will be adding my conjectures and opinions, there are tons of caveats and nothing is black and white.
Some background. An oncotype is: “The Oncotype DX Breast Recurrence Score test provides a genomic-based, comprehensive, individualized risk assessment for early-stage invasive breast cancer in adjuvant and neoadjuvant settings. The test provides valuable information you can use to personalize a treatment plan specifically for each patient’s situation—including risk of distant recurrence, the benefit from chemotherapy and whether your patient can be treated effectively with hormonal therapy alone.“
Your oncologist sends a piece of your tumor to this one lab in California and they run their tests and give your tumor a score, which then relates to a scale which gives you a metric with which to judge your recurrence risk. Now this scale has changed since my initial diagnosis because of a 2019 study called TailorX. I don’t want to delve too deeply into this because I’m simply not smart enough and there is a caveat that doesn’t exactly change the protocol they used for me in 2016.
So in 2016, my tumor met the requirements to be sent for an oncotype. If you want to know what they are, click the Oncotype link above. My score came back at 17. At the time, 18 was the cut-off for chemo being worth it. There are more scientific ways to say that, but ‘being worth it’ works. I probably would have gotten chemo regardless of my score because I had a metastasis to a lymph node, but since I was on the cusp and was young with no genetic reason to have cancer, they decided to give me chemo. My 2016 chemo was Taxotere and Cytoxen. Of note, you cannot get the same chemo twice. Keep this in mind.
I dotted every i and crossed every t in 2016. Had a mastectomy, chemo and have since completed 5 years of hormone therapy. In my case, it was Tamoxifen. The main takeaway of this, for this story’s purposes, is that I did everything the exact way the Oncotype people would have prescribed.
Cut to literally 5 years and 1.5 months after Cancer Round #1 and starting hormone therapy, I am diagnosed with breast cancer again. We do not know if it is a recurrence of the OG cancer, or a totally new cancer. It is extremely relevant, but also completely irrelevant in my case. I can’t explain this, just go with it.
My oncologist and the rest of the oncology team have met to discuss my case twice and both times they seemed to leave with a takeaway no greater than the shrug emoji. They decided yesterday that they would send my new tumor out for oncotype testing. If they were positive it was a recurrence this wouldn’t make sense because you assume that the oncotype would be around 17 since it is the same disease. Since they aren’t sure, they want to send it out. My 2021 tumor barely made the cut for Oncotype testing, as the tumor has to be under 5cm. Mine was 4.6cm.
We are now in the 2 weeks waiting period while the test is being run. When the results come back, we will ostensibly have an answer as to whether or not I will have another, bigger, badder chemo this time. Remember, you can’t have the same chemo twice so you can only progress to the next severest down the line. They are always hesitant to give you chemo because duh, it is poison and as they get more intense, their side effects are worse for both lifestyle and longevity purposes. I can get into this another time if necessary.
But here is where I am going to break this shit down. Things are going to get meta. Stay focused.
So my OG Oncotype was 17. It was on the cusp and barely had any statistical benefit of chemo, but I had it anyway because I had a metastasis to a lymph node, was young and nothing made sense. My recurrence risk was quite low, I want to say <6%. For the next 5 years, I did everything by the book.
SPOILER! My cancer came back. And it came back gangbusters. In hindsight, we know that I had a 100% chance of my disease returning. So really, that Oncotype in 2016 was irrelevant. Chemo didn’t work and neither did hormone therapy.
This begs the question: if the 2016 Oncotype was irrelevant in calculating my recurrence rate, why would we put any weight into it at all a second time? Say my score comes back at 5, very low. No oncologist would recommend chemo. Or say my result is 75, everyone would recommend chemo. BUT DOES ANY OF THIS MATTER? My cancer fucking loves it here in my body. It found a way to come back (or did it never actually leave? I shudder to think about this) despite every effort to thwart it. And it came back in the minute area of breast tissue left. It overcame great odds to exist.
I am having a really hard time feeling like we should be hinging decisions based on the Oncotype results. I realize there is a ton of statistical evidence to its efficacy, but I am one of the outliers. As usual, I can’t do anything regular or within statistical margins. I fear that no matter what choice is made, whether to have chemo or not, I will be haunted by what I didn’t choose.
If I have chemo, it will be one less defense I have if cancer comes back again, which is now statistically more likely since I’ve had it twice. I will also have to deal with real heart and bone loss issues.
If I don’t have it, I will always wonder if I didn’t do enough to stave it off for the future.
I guess the bottom line is that I will always worry. Before December 2021, I truly didn’t think I would ever have cancer again. Now I will worry every day.
If you have an opinion, I would love to hear it. I think the general hive mind may carry just as much weight as actual science (shrug emoji x 100).
I never took statistics in college. I am glad I didn’t waste my time.
grancerblog 
“I am one of the outliers” – this is why decision making is so hard, right? Residing in an area where most of the statistics do not, makes the weight of your decisions feel sticky and fluffy. That’s not a good way to feel about MAJOR life/health choices.
Doing chemo again sounds hard. Especially as you mention the severity increasing. Dang cancer…and life. And kids. And big decisions…
If I put my cancer hat back on and thought about this decision, I would try to think about what I wanted to do in order to be here as long as I could to see my kids get big and tall. And to be able to do all the things I still have planned to do since cancer in your 30s makes you realize it’s time to do ALL THE THINGS!
There really is no simple answer. Stay busy during the wait for Oncotype results. And make a logo with a stranger 🙂 The offer still stands. I can help you pass the time with some distractions. Hugs to you.
LikeLike
I am one of those whom you don’t know, but has followed your journey from the beginning. I’ve had two beloved family members go through their own journeys and I can say that neither of them had this horrible, ‘damned if you do, damned if you don’t’ situation you find yourself in.
That being said, I just wanted to say that I hope what ever you decide to do, you won’t have to worry or wonder if you made the right choice because the one you choose will be the best choice for you.
I admire your choice to share your vulnerability and hope that you have many Greg free years after you make your decision. All the best to you Grace.
LikeLike
Hi, Grace – I am going to reach out to you via the contact page to share my thoughts about making treatment decisions. In the meantime, I just wanted to say how much strength you have given me and undoubtedly so many others as we face various challenges in our own lives. It takes courage to – as you described in your last post – ask your doctor to hold your hand or prescribe you medication for anxiety, and it takes courage to share your struggles with us. From you I have learned that it is not only okay to be scared when we face hard stuff, but it’s okay to seek help, even if doing so looks different from what we think seeking help “should” look like. And what a comfort it is to have that knowledge. I’m so sorry that you are dealing with all this hard stuff right now, and I send you strength back, as well as a big hug. I wish for you, as we say in Hebrew, a “refuah shlema, ” a full recovery. Of body, mind, and spirit.
LikeLike
I have also followed your story since 2016 as my own dance with breast cancer started up several months after yours. While our situations are different, I took great comfort from your descriptions of each stage of your treatment, finding strength knowing what comes next. I appreciate your honesty and your charming writing style. I cheered with you when the video of your tattoo came out. I am sending prayers and good vibes now as you approach another round of treatment. May the force be with you!
Jean
LikeLike
Grace, I too, have followed your posts since way back when. After givimg your post a lot thought and trying to put myself in your place. I would have to say that these decisions you and others will have to make have to be indiviual to the person, their families and what you feel is best for you and them. If you trust your doctors and can talk open and frank with them- that may help you make an informative choice. I know when I have had difficult medical choices to make – I asked my doctor, “what would YOU DO if this was your wife or your daughter?” Yep, it does make them gasp a little that I would be so blunt and it usually does make them take a few minutes before they answer. But when they do answer (after they recover from my strong questioning) I feel like only then did I get the best advice he could offer. I feel like you have an army behind you who is pulling for you and I am certain you will make the best decision you can. I learned a long time ago – we are so much stronger than we think we are.We women just have a little something extra in us. *hugs and prayers to you Grace*
LikeLike
I would 100% focus on what will get you to continue to live and kill Greg now.. Screw long term side effects – by the time you are older science will have figured out better ways of dealing with bone loss and heart issues anyway with all the baby boomers going through this stuff right? That’s what I would think anyway. Good luck! 🍀 You were an amazing doula who helped deliver my two babies who are now 6 and 4!
LikeLike
I just want to say I totally get your decision making process/conundrum. I was diagnosed with Triple positive breast cancer three years ago. I through everything I had into getting well, lumpectomy, 12 rounds of chemo, radiation, 1 year of immunotherapy and now I am supposed to be on Tamoxifen for 5 years. I wrote “supposed to” because I am suffering. I wake up and my bones ache like I am 100 years old. I have toe pain, hip pain, elbow pain and hot flashes that wake me up at night. And yet, I am TERRIFIED to go off of it because should it come back, won’t I be to blame because I didn’t do everything I could. So all that to say, we have no control, if we follow the rules, we don’t, who is to say what our body will do. So I get it, your situation is definitely more difficult than mine, but this guilt and concern is hard and unfair. I wish you the best in your decision making. I am agonizing my decisions as well! Fuck Greg! Fuck Cancer! Go you!
LikeLike
Maybe a second opinion? I know it’s time consuming, sometimes expensive and inconvenient, but when you get into treating the weird Cousin Greg tumors it becomes a bit of an art. And different docs may see different things in the data (the rumor type, oncotype, etc). Sending love and support your way overall. 😘
LikeLiked by 1 person