PET scan – Life As I Know It

Busy September capped by radiation ☢️

October 11, 2025

September was a busy month for me in managing cancer.

Back in June I had a brain MRI, which includes the very top of your spine (cervical). At that time, it looked like there might be an active tumor in part of my C1 vertebrae. I also had a full body PET scan that showed “stable” cancer at the time (mainly my spine has been problematic).

The stable PET scan means that my treatment (Enhertu) is largely working. However, the tumor on my C1 made me nervous. Your C1 is directly at the back of your head at the height of your nose. If anything goes wrong there it can be complicated and in the words of my oncologist “catastrophic” 😳

After discussing with my oncologist in August, we decided to radiate it. It’s not uncommon with metastatic breast cancer (MBC) to consider radiating smaller tumors if everything else is stable or no evidence of disease (NED).

So, I decided to pack this in to September which was already busy.

After another MRI of my cervical spine I met with a radiation oncologist. He wanted to do Stereotactic external Beam Radiation Therapy (SBRT) – a concentrated radiation that would have been 2 sessions.

My insurance company disagreed with my radiation oncologist and wouldn’t cover it.

I could appeal it but that can take weeks and I didn’t want to give the tumor more time to get comfy and grow. So instead, I had to go for 10 sessions over two weeks.

You have to lay perfectly still for radiation so that the beam hits the intended target. At my planning session appointment they created a mask. A mesh of warm plastic was placed over my face and head and molded to my exact shape. The photo of the mask shows me with a big smile – not that I’m super happy to be doing this, I just naturally smile for photos.

A spanking new mold of my face and head.

Then I got out of town. Drove Maddy to Cal Poly and then back home. The next day I jumped on a plane to Providence for work. Glen flew out at the end of the week and we spent the weekend (our first as official “empty nesters”) with my cousin playing tourist.

Beautiful fall weather made a boat tour of light houses on Naragassent Bay just delightful!

We got home late on a Sunday and Monday morning at 9am I had my first radiation treatment.

The photo shows me right after they finished a treatment. The mask mostly feels like a heavy blanket with a lot of holes draped over your head.

The mask is literally snapped to the table. You can’t move your head at all. You can kind of see through the holes and of course you can breathe. The round equipment above my head rotated all the way around the table that I’m lying on.

I had 10 treatments (M-F) over two weeks. Within those 2 weeks I also had my Enhertu infusion and got my flu and COVID boosters.

As soon as I finished radiation I headed back to the east coast, Washington DC this time to advocate on the Hill for funding for cancer research.

It’s been a lot, however, I refuse to let cancer dictate my life. Most of those days I was in bed before 9pm. I’m grateful that my side effects are minimal and I can still do “all the things”.

The side effects of radiation to your head are not pleasant. This week I developed a wicked sore throat to the point that I couldn’t swallow. Food doesn’t taste like anything. My fatigue has been ridiculous.

October is a little more quiet but more travel for work and fun.

I hope you all are living your best life and doing the things that make you happy and matter to you, whatever that might be.

Onward!

Our last family dinner before Maddy left for college.

September update

September 22, 2025

It’s been a bit so a short update here. Short version: currently stable, minus a pesky tumor in my C1.

I had a PET scan earlier this month. I met with my oncologist today and the imaging didn’t show any change. I’ve been feeling pretty well lately so that is a good sign. My tumor markers keep climbing which is worrisome but there is no evidence prompting a change in medication since my imaging doesn’t show anything. I’ll continue on Enhertu for the next 3 months.

I do have a tumor in my C1 and compared to June it’s a bit more active. It’s possible that this is the reason for the rising tumor markers – it’s hard to say. I’m having radiation on the C1 (started today). More on that later.

Overall, I’m trying to stay active and have balance in my life. I think that’s hard for all of us, cancer is just one more thing to navigate.

We are officially in fall – hopefully you had a great summer and fall is off to a good start.

Onward!

Grateful for walking paths from the cancer center. I took a walk before my appointment today.

It’s Summer & I’m Feelin’ Fine ☀️

July 13, 2025

Hi all – it occurred to me I haven’t shared an update in a while so here we go.

It’s been a busy spring and summer. Maddy graduated in May and had dance commitments through June (she’s actually still dancing in July. Evelyn finished her junior year and started a summer research internship at University of Colorado Anschutz Medical Campus (studying lobular breast cancer). Both the girls are studying engineering in college.

I’ve been trying to keep up with it all. In May I started doing Pilates regularly in addition to my daily walking. So far it’s been helpful with gaining back some strength, especially in my core.

Overall, I’ve been feeling quite good. I have some pain occasionally between my shoulder blades in my thoracic spine but that could be how I sit at my computer, or the Pilates, or the cancer, or something else. It’s manageable and isn’t persistent so I don’t give it much more thought.

I was having some vertigo on and off in May and so an MRI of my brain was ordered. (That’s the thing about metastatic cancer, any small thing could be something big – or not.) Fortunately the brain MRI came back clear – yay! (Note: previously I thought that there was new progression on my C1, however, my oncologist confirmed it’s not new, it’s been there or quite some time. This is good!)

I was due for my 3-month PET scan and had that in mid-June. (Read more about PET scans here and how they are used to monitor my disease.)

The results of the PET scans were mixed. Some of the lesions in my spine showed healing, others showed active cancer.

So, what do we do with that?

Since I’ve been feeling fine and I have a very good quality of life on Enhertu, we stay the course. I’ll continue taking Enhertu until we get solid evidence of significant progression.

My (very reliable) blood work tumor marker numbers are climbing high. For now we will just keep an eye on things since it’s not clear the cancer is significantly active.

It’s counterintuitive that the treatment is working in some areas and not in others. You’d think it would be one or the other – but that is what makes metastatic breast cancer treatment a bit of an art. The oncologist has to weigh all these different factors and decide what the smartest path forward is.

My plans for the rest of the summer (besides work) will mainly be going for walks, doing Pilates, water color, some crocheting, maybe some gardening and trying to connect with friends for lunch.

I hope you are soaking up all the hours of daylight we have this season and are living the hell out of life!

Onward!

All About PETs 🐱

No, this is not all about Toulouse, but it could be! He’s such a good little furry guy!

In case you are interested, I’m summarizing how a PET scan can help us monitor metastatic breast cancer. If you are not in a science-y mood, you might want to pass on this post.

A PET (Positron Emission Tomography) scan is often used to detect cancer. It is also commonly used to diagnose heart disease and brain conditions. With cancer it is used to determine if the cancer has spread to other parts of the body (metastasized). [Tomography = a technique for displaying a representation of a cross section through a human body or other solid object.]

A PET scan detects cellular changes in organs and tissues earlier than CT and MRI scans. The scan is painless, although sometimes people can feel claustrophobic as their head moves through the large tube. The machine used to do the scan is shown in this diagram from the Cleveland Clinic.

Machine used for PET (and CT) scans (image from Cleveland Clinic).

Prior to the scan, an injection of a glucose-based radiotracer is given. A person has to wait about 45 minutes after the injection before the scan is started. This gives the radiotracer time to circulate through the blood stream and body.

A PET scan can take 30 minutes to 2 hours depending on what exactly is being examined. The radioactive tracer allows the machine to detect diseased cells. Diseased cells will uptake (or collect) more of the glucose radioactive tracer because they are more metabolically active than healthy cells. This increased uptake is visualized as brighter spots on the imaging.

The most common radiotracer used in PET scans is fluorodeoxyglucose (FDG). Once it’s inside the cell, it’s trapped. The PET scan machine can quantify the amount of tracer uptake using SUV. SUV (Standard Uptake Value) is a quantitative measure used to assess the concentration of the tracer.

SUV represents the ratio of the amount of radioactive tracer in a specific region of interest (like a tumor) to the amount of tracer that would be expected in a similar volume of normal tissue, taking into account the injected dose and patient’s weight.

Changes in the SUV number over time can help determine how well a patient is responding to cancer treatment.

In an imaging report, SUV numbers are reported. The radiologist or oncologist can then compare the SUV numbers to previous PET scans to determine if the cancer is more active (higher SUV number) or less active or inactive (lower SUV number).

While all of this sounds very concrete and specific, it’s still just an approximation of what is happening in the body. Results from a PET scan are used along with other factors such as how an individual is feeling, whether or not there is pain present, and blood work results.

PET-CT

Sometimes a PET scan is done in conjunction with a CT scan. The same machine does both of them and a patient would have both done during the single scanning session. The combination of both a PET and CT scan produces a three-dimensional image that allows for a more accurate diagnosis.

A CT scan is Computed Tomography and uses x-rays to get a detailed view inside the body. It produces still images of organs and body structures (such as bones). Sometimes it’s referred to as a CAT scan – it’s the same thing. CAT = Computed Axial Tomography.

Instead of creating a flat, 2D image, a CT scan takes dozens to hundreds of images of your body. To get these images, a CT machine takes X-ray pictures as it revolves around you.

After a scan is completed, the technician makes sure the images look ok and then it is sent to a radiologist to interpret and read. The radiologist writes a report of what they see, ideally comparing it to previous PET or PET-CT scans. That report is then forwarded to the oncologist and the patient. The oncologist and patient, together, determine what changes to make to treatment (or not) based on the scan results as well as other factors such as how the patient is feeling and blood work.

Welcome 2025 🍾

January 1, 2025

As New Year’s Day winds down I write to say hello to all my friends and family, near and far. 2024 was actually a pretty good year for me (unlike 2023) and I’m optimistic this year will be even better.

I had a PET scan in December and the results were “fuzzy.” Well, that is the first word my oncologist used. Let me explain.

He agreed that imaging was not very reliable for me. However, the results showed additional uptake of the contrast in a few areas where I have known cancer (mainly in my spine). On the one hand, other areas seemed quiet and unremarkable. (I want to get a t-shirt that says “I’m unremarkable” – if you know, you know.)

Dr. Andorsky said the most important thing is how I’m feeling. I feel great! Really, I am so grateful for my new hip and my fentanyl patch and other meds, and the fact that I can get up every day and work, exercise, read, paint – you name it. On the other hand, my tumor markers have been slowly rising. They tend to be accurate in terms of whether cancer is active or not.

The other thing to consider is that there are a finite number of treatments so you want to make them last as long as possible. I was prepared to argue to stay on the same treatment and I didn’t need to do that at all! He suggested we stay on Enhertu and revisit in 3 months.

In other news, the tingling in my left arm has gone away. I will attribute it to the blood clot I had under my left collarbone and that by this time it has dissolved and so has my arm tingling.

So, I stay the course which is the best possible outcome. I get an IV infusion of Enhertu every 3 weeks. The cancer center is only 5 miles from my house so I’m able to get there and back quickly. A typical appointment is 3-4 hours for labs, an office visit and then treatment.

The rest of life is going swimmingly. We had a lovely (short) visit with family in Wisconsin. Glen, Maddy and Evelyn have hit the slopes already. Evelyn has been popping home now and again. Maddy has a short break from dance so she is home a bit more as well.

Maddy and I head to Texas to see her grandparents, it will be a short visit – we are looking forward to it regardless. I’ve booked a trip to see my BFF in LA for February and our family is making plans for a few family vacations in 2025.

I hope you are able to approach 2025 with optimism, enthusiasm and peace. I hope to see many of you this year. You are always welcome here – we have plenty of room! Seriously, we’d love to show you around Colorado.

Onward!

All Systems “Go”🚦

September 19, 2024

Hello friends and family! Welcome to fall (almost). The nights are getting cooler here and I’ve seen photos from others that the aspens are starting to change color in the mountains.

I write with good news. My PET scan of earlier this week shows that I’m stable. This is fantastic; it means that the cancer is not growing or spreading. The caveat is that lobular breast cancer sometimes doesn’t show up well on imaging. However, my blood tumor marker number dropped as well! The CA 27-29 gives an idea of how active the cancer is. A number of 38 or lower means the cancer is inactive. In mid-August it was 109. On September 11 it was 93! That was very welcome news!

The combination of the tumor marker dropping and my scan not showing progression means I can stay on the same treatment. I’m currently getting Enhertu every 3 weeks. I’ve got medications to deal with the side effects, overall I’m tolerating it very well.

I also spoke with my orthopedic surgeon this week. My recovery is going very well and he wished me a good time on my upcoming trip. He did mention several times how bad of shape my hip was in. I’m feeling grateful that I no longer have pain and hopefully I will be able to walk unaided soon. I still have some swelling and it’s hard getting used to walking since I’ve been using a cane for 2 years.

Tomorrow Maddy and I leave for Belgium. We are attending the International Lobular Breast Cancer Symposium! I received a travel grant from the Lobular Breast Cancer Association for which I am very grateful.

The symposium is 3 days long and the first day is focused on patient advocates. Maddy will come with me that day. The other 2 days are more research focused. We are excited to go and learn where research is headed for lobular breast cancer. My oncologist was not familiar with this conference and asked me to brief him on what I know. I’m more than happy to do that!

Not gonna lie – we are happy to go to Belgium as well. We should have one day where we can sight see. We will be in the city of Leuven which is east of Brussels. Watch for photos in the next blog post.

Life is good, right now for me life is great. I’m going to take it all in while also making sure I rest and don’t overdo it. Maddy may need to help me with that.

Onward!

My shiny new hip

September 7, 2024

I’m happy to share that my total hip replacement was a success! I had the surgery on Tuesday and was home Wednesday afternoon. My first home physical therapy session was Friday and he cleared me to walk the cul-de-sac. All the pre-habilitation has paid off!

Thank you to everyone who has sent well wishes and flowers and text messages. They are very much appreciated and each one brightens my day.

So, it turns out that my right leg was 1.5 centimeters shorter than my left leg. Over time, with the cancer eating away at my hip, the socket flattened out. The top of the femur also flattened out. It was months in the making so I didn’t necessarily notice the leg difference. It feels weird now to have both the same length – the right feels longer than the left.

He put a ceramic socket in and attached it to the cement/hardware that he put in a couple of years ago. My hip is not strong enough to have the socket attached to the hip bone, like in a normal hip replacement.

The top of the femoral head is metal (titanium I think). When he was putting it in my femur cracked (again, weak bones) and so he had to wrap some wire around it, kind of like a wine barrel. Overall he said the procedure was good and doesn’t expect any kind of complications with the healing.

Ann came out and was my caregiver for which I am extremely grateful. Maddy took the day from school to come to Denver and wait with Ann during the surgery.

The weather has been good and so I’m looking forward to walking outside. My PT comes again on Monday and I’ll be looking to walk longer. The cat is happy that I’m spending a lot of time in the recliner! On Monday I’ll get back to working, probably from my recliner!

I’ll have a check up in 2 or 3 weeks. I’m still planning to go to Belgium with Maddy for a breast cancer symposium later in September. The work must go on!

I also have a PET scan mid-September to see if the cancer is stable or growing. Keep those fingers crossed! 🤞

Onward!

April 2024 Update 🌷

April 14, 2024. Hi everyone – just a quick update on things here in cancerland.

This past week I had a PET scan and an infusion of Enhertu (chemotherapy). Both went smoothly, no problems at all. I’ve not seen the PET scan report, but I received a voice mail from my oncologist that things were “stable” meaning the cancer did not look like it was growing. The infusion treatment on Tuesday also went smoothly with no issues. My blood work and tumor marker continues to drop, indicating the medication is doing its job.

I am very grateful for all of this!

I continue to have mobility issues with my right hip. It’s not clear if it is cancer related or not. I’m on a lot of pain medication right now due to my lower back. Next week I’ll reach out to my oncologist and see if we can get an MRI so we have more detailed information.

The impaired mobility is significant. I cannot walk without assistance and my hip flexor is extremely tight. I’m trying to work in some upper body free weights and additional lower body stretching. I’ve not returned to doing outdoor walks, my stability is not great. I may look at longer walks on our home treadmill to get some endurance going.

I hope that signs of spring are apparent where you live. We’ve had some lovely weather here and I hope it continues!

You can follow me on Instagram at @nottodaymbc where I tend to post more daily cancer-related updates. I post to Facebook but not much health-related information. Of course I always welcome a text message or snail mail if you feel like getting in touch.

Enjoy whatever weather Mother Nature throws at you!

Onward! New meds and surgery

Lots going on here so I’ll try to summarize for those trying to keep up.

Surgery. I still have continual pain in my lower back, right hip and leg. It’s debilitating and very frustrating to deal with and try to control. An MRI of my lower back shows that I have tumor pushing on my spinal cord. It’s not clear if this tumor is “new” or “old”.

The surgeon (neuro-oncologist) is recommending a laminectomy and tumor “rescission”. He will go in and remove part of 2 of my vertebrae as well as any cancer tumors he sees there. He is very confident this will eliminate my pain (🤞). Note: I find surgeons to be over confident in general.

Surgery is scheduled for Wednesday October 4. I will stay one night in the hospital. I should be up and walking about the same day.

New Meds. The results of my PET scan show the cancer is still limited to my bones (no visceral organs). This is very good! It also looks as though I have been having very slow progression over the past year.

My oncologist wants to stay ahead of the cancer (me too!) and recommends switching medication. I have already stopped taking Ibrance and in late October I will switch to Xeloda (z-low-da). These oral meds are taken twice a day for two weeks and then a week off.

I had a great run with Ibrance – over 4 years and 50+ medication cycles!

I know several other women on Xeloda so there is a support network to plug in to. I’m hoping my side effects are minimal and that my cancer hates this medication!

I will keep taking Xeloda until it stops working. This is determined by doing scans and comparing them to previous scans.

Today I will see my primary care physician to have him sign off that I’m healthy enough to have surgery. Then I’ll be calling my insurance company to see where approval for the surgery is.

Other than all of this, it’s a typical fall day here in Colorado with leaves starting to turn, lots of sunshine, and a high in the mid-80s. I’m looking forward to getting my back/hip/leg in order so I can go out and walk again. Take a walk for me – short or long – and send me a photo.