Medical Update, First of 2021

Medical Updates 5 Minutes

Still can’t believe that we’re finally in 2021!! Of course, since the calendar system is just a construct, it’s not like much of anything was different as the calendar flipping from December 31, 2020 to January 1, 2021, but I confess to still having hope that things will be different especially since there will be some changes to the leadership in our country coming soon.

So, medical updates … as most of you know, my cancer treatment continued steadily through 2020 and my cancer center made lots of adjustments that kept me and all the other patients there safe along with the medical professionals and staff. I’ve had more telemedicine appointments now than in person appointments and I do like that for some of my doctors, especially the ones that run habitually behind. It’s much nicer to wait at home than in the waiting room at the cancer center.

As 2020 came to a close, on December 11, 2020, I had the third PET/CT scan of my current regimen, which is still Piqray and Kisquali as my targeted therapies. That scan showed that my regimen is continuing to work overall. The pesky met in my right pelvis is still, well, pesky. The size of the lesion itself has remained stable per the CT part of the scan, but the metabolic activity has fluctuated through the year, per the PET part of the scan, which has me a bit perplexed. My medical oncologist gave me three options: 1) continue to watch it; 2) biopsy it to see if anything is different; and/or 3) radiate it.

As all of you are probably aware, if you’ve followed me for any length of time or know me in real life, the first option was just not acceptable. So, I decided to go with the second option, to biopsy the met, which is in the right pubic ramus, a part of my pelvis. The plan was to see what the biopsy said and then consider next steps. Thankful that my doctor is open and willing to do what I ask so long as it makes sense from a clinical perspective. Since that’s the only met not behaving itself, it has occurred to me that perhaps that’s because that met has either gained or lost receptors, which would mean that my treatment would need to be tweaked.

The biopsy via Fine Needle Aspiration (FNA) with CT guidance was scheduled for December 30, 2020 (got it in before my deductible reset!!) and I had high hopes going into the procedure that we’d get actionable information. The only other biopsy I’ve ever had was the initial breast biopsy that resulted in the diagnosis of breast cancer, so I didn’t have much to compare although I was warned over and over that it is difficult to get good information from bone mets. I was under twilight sedation for the procedure and had a combination of Versed and Fentanyl in an IV — all I remember was the sticks from the numbing agent in my pelvis and then waking up about four (4) hours later in recovery. Yep, I’m a lightweight — my poor husband was starting to worry as all the other caregivers came and went with their loved one and he was still waiting.

I didn’t get the results when they told me I would and had to make a bunch of calls before locating it — quite poor customer service in that department — and after all of that, the results were completely useless. They did confirm that I have bone cells inside the bone that was biopsied, but that was it. Frustrating!! Apparently they didn’t get a big enough sample size and pulled from the middle of the lesion, where the cancer had likely exhausted it’s blood supply and moved on, so that part was just dead. Fooey.

While I was considering what to do and interfacing with my medical oncologist, some really cool things happened. First of all, in response to a post on Facebook, I met my new best friend who introduced me to her doctor at Duke who specializes in cryoablation. I’d been eyeing the Bone Mets Clinic at Duke for over a year since I’d read about their innovative approach to bone mets, but they weren’t accepting new patients outside of Duke during Covid, so I’d put that in the back of my mind.

However, in yet another example of how knowing people is key, my new best friend introduced me directly to her doctor who did the cryoablation on her pesky met and now I’m an established patient at Duke. Working on getting all the records and images into the right hands so that we can determine if the cryoablation (a/k/a blasting the met with ice to freeze it so that it can be shattered and removed) makes sense for the pesky met and perhaps another met or two that need to be destroyed.

I like this destroying mets thing!!

Secondly, in the mean time, I met with a radiation oncologist at the Miami Cancer Institute (MCI), my cancer center, who does SBRT, which is typically done on the brain, but can also be done on mets in the bone. It would be a three day process with one treatment per day. I was told that this is pretty innovative and that not every cancer center has the personnel or equipment to do this kind of radiation on the body.

Stereotactic radiosurgery (SRS) is a non-surgical radiation therapy used to treat functional abnormalities and small tumors of the brain. It can deliver precisely-targeted radiation in fewer high-dose treatments than traditional therapy, which can help preserve healthy tissue. When SRS is used to treat body tumors, it’s called stereotactic body radiotherapy (SBRT).

https://www.radiologyinfo.org/en/info.cfm?pg=stereotactic

I have a CT booked for next week to look closer at the pesky met and begin the process of planning for either cryoablation or SBRT; will probably need to get another biopsy too, but the cool thing about the cryoablation is that they can likely do the biopsy right before the met is destroyed in one procedure. The radiation oncologist at MCI is pulling my previous radiation data from up in Orlando to ensure that we don’t re-radiate a bone and to hopefully ensure that the radiation field doesn’t affect my bladder or sensitive vaginal tissues in the process.

I also got to sign up for a clinical trial through my new radiation oncology team which is hosted at Memorial Sloan Kettering (MSK) in New York and it looking at streamlining and improving their ability to look at and interpret Circulating Tumor Cells (CTCs). All it takes is three blood draws and I’ve contributed to science and understanding. The way it was explained to me is that the new process they are looking at might be able to predict progression or reoccurrence eighteen (18) months before a lesion can be seen or felt. Super cool and I’m excited to be able to participate.

Stay tuned for next steps as I work through the possibilities and next best steps in this process!

Published by Abigail Johnston

I'm a daughter, a wife, a mother, and I've been living with Stage IV Metastatic Breast Cancer since March, 2017. All of the words I publish are my own.

Published

36 thoughts on “Medical Update, First of 2021”

    1. I’m amazed at how often it’s we patients that share information about treatments and options. Not that our doctors aren’t doing their job, just that we have such a depth of information and possibilities in the MBC community. I’m grateful to be the recipient of that depth and thankful to be able to pass along what I’m learning. ❤️

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  2. Abigail—I’ve been anxiously awaiting this report since you’d written that you were to receive another PET scan in December.

    It’s good that you have options to consider, and I like the fact that you’re now hooked in with Duke and MSK. And bless you for your “pay it forward” clinical trial participation.

    You are terrific at explaining all these procedures with clarity.

    We’ll now await your report of having sent your pesky mets into oblivion.
    💕

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    1. Thank you!! It’s such a rollercoaster of treatments and scans and waiting and more waiting. I do feel better when I’m “doing” something and I’m thankful that I was able to receive the first shot of the covid vaccine! Makes the thought of traveling to an unfamiliar medical facility a little less nerve wracking!

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  7. Sharing your personal health story with all of us is important because others will know that they are not the only one going through trails with there health
    Thank you and I pray things will improve for you

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  8. Thank you so much for this post! I also have bone mets (way too many to count) and fortunately, they are all behaving themselves so far (18 months into a de novo diagnosis) but as you know well, there is always the underlying worry of progression or other trickiness. This has given me a bunch of new areas of investigation and topics for discussion with my oncologist and that gives me hope! Thank you again.

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    1. Good for you!! As patients, continuing to learn and ask questions and understanding the best we can in a difficult and complex situation is what we can bring to the team. Love and hugs to you!!

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  9. Abigail thanks for this – I had few pesky mets myself but they come and go come and go, seemingly responding to my targeted therapies. But I’m glad to hear about the clinical trial at MSK and will ping my onc about it. He’s so busy he has to be reminded at times especially with a patient whose unremarkable and stable pet scans don’t require much attention. We took care of the met on my spine as you know with regular radiation therapy but it damaged too much of my soft tissue and my energy hasn’t been the same since. I’m glad you met someone through Facebook I refuse to use it as my private information is too dear to me – so much is taken away from us as human beings with cancer it’s hard to give more of myself away but it sounds like the upside is better than the downside. After six bloody years I just don’t even want to think about cancer but it runs my life so I must. Much love my dear friend.

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  10. Good for you on the clinical trial front. Many trials here in the UK are on hold at the moment; not good for current patients or for patients who might benefit in the future. Interesting also to hear what treatments you’re on. The combination of a CDK 4/6 inhibitor and Piqray is not an option here on the public health system. I hope your various treatments keep the cancer in check. That would be a good thing to keep on hold! Best wishes.x

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    1. So many trials halted here in the US too and are just starting to slowly open back up and begin enrolling. Part of the issue is funding as most organizations outside of the federal government stopped funding too. We are definitely going to feel the affect in the cancer community in 2021 and beyond since many people have also not received cancer screening. So very sad and concerning. As to my regimen, it’s not fda approved but my doc and I decided to try it when piqray alone started to fail earlier this year. It’s been working for about 10 months!

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