Things you might be wondering.
Some have been asking, so we thought we would share all the answers here.
What is Julie’s cancer history? (Answered by Julie)
Cancer runs in my family. My mom died of breast cancer at 53. Many family members have had cancer as well. Some family members have the BRCA2 mutation, but I do not.
If you want the short explanation, I have advanced, stage four, estrogen/progesterone positive metastatic breast cancer. If you want the nitty gritty information, read on. It’s hard to write all of this out. It sounds so negative and maybe, poor me-ish. However, I know it is helpful to people going through something similar and to the people who love those people, so here it is.
In late 2006, right after turning 40, I discovered a small lump in my right breast. After many negative tests, a biopsy was done that found invasive ductal carcinoma.
Shortly afterwards I had an MRI that showed eight more small tumors that mammogram and ultrasound had missed.
Next came a mastectomy and reconstruction, at which time three cancerous lymph nodes were found. 20 lymph nodes in total were removed, which severed the large nerve in my armpit causing phantom arm syndrome (your brain thinks your arm has been cut off!), “roping” and expansive numbness. My DIEP reconstruction required a tummy tuck. I highly recommend never getting a tummy tuck.
Several more reconstructive surgeries were performed, which were really difficult and sometimes very painful.
8 rounds of hardcore chemo came next, taking a few months. I lost my hair and had intense nausea and fatigue.
The chemo was followed by 30 days of radiation which caused pain and fatigue.
All of this treatment took about one year, at the end of which I was declared “cancer free.”
In 2009 I had my ovaries removed to lower the amount of estrogen in my body as my type of cancer is fed by estrogen.
In 2017 I had some concerns about how my reconstruction scar looked. I showed it to several types of doctors and had an ultrasound of the area. I was assured that this was not cancer. However, it is now assumed that this was cancer at the time and is definitely cancerous now.
By 2020 I was experiencing fatigue and pain in some bones as well as the liver area.
In March of 2021 I was having significant pain in the area of my lowest right rib and the whole area around it. I had it x-rayed, which showed nothing. We now know this pain was due to a pleural effusion, extensive rib mets and extensive liver mets.
In May of 2021 I went back to my primary care doctor and insisted on a scan of the area. The ultrasound tech saw two liver masses.
In June of 2021 I had CT scans and PET scans which found extensive metastatic (spreading) disease.
On the PET scan, they saw a significant bone metastasis (cancer) in my neck at C2 and five rounds of radiation were started the next day. Bone mets make your bones weak. If you break C2 you can become a quadriplegic. Wow, wow, wow is radiation to the neck terrible! It hits your mouth as well, making huge sores all over your throat and tongue.
I was also started on a chemo pill, which is much gentler than the effusions I had in 2007. The main side effect I noticed was blisters all over my feet and a few on my hands. I was only on the chemo pill a short time as my cancer grew while I was on it, meaning my cancer is not chemo-responsive.
Next I started on endocrine therapy. I do not qualify for immunotherapy as I do not have any mutations. (Unfortunate for me, most of the exciting things happening in cancer research have to do with immunotherapy therapy.) The goal of endocrine therapy is lowering the estrogen in my body. It’s just two pills (Ibrance and letrozole) every night. The worst side effect is that it lowers my red and white blood cell counts which causes fatigue and makes me susceptible to illness. As I write this, it is October 2022, so I have been on endocrine therapy for about one year!
I also started getting a monthly shot called Xgeva to strengthen my bones. I am currently taking a break from this for various reasons, but will resume soon.
Also upon diagnosis of metastatic disease, I started taking Oxycodone (an opioid) around the clock. I don’t love taking them, but need to, to keep my pain under control
About six months after diagnosis, I was put on Ritalin!!!! I don’t have ADD. A secondary use of Ritalin is to treat breast cancer fatigue. Who knew?
Throughout this current diagnosis I have been researching and trying various natural modalities.
These are the places I have cancer: Left occipital (skull base), C2 (neck), sternum, multiple ribs, 9th rib extensive, T10, T11, T12, L2, L3, L5, right iliac (wing of pelvis), right sacrum (right above tailbone), right ischium (bottom of pelvis). right acetabulum (hip socket), left ischium (bottom of pelvis), left femoral neck (femur), extensive liver mets, extensive lymph nodes, left adrenal, both lower lungs (very small nodes in hila), right moderate metastatic pleural effusion, cancerous reconstruction scars.
In October of 2022, I had most of the fluid drained surrounding my right lower lung, which made me feel a lot better and increased my blood oxygen saturation. This fluid (malignant pleural effusion) will like grow back, but I can have it drained as often as necessary.
In January of 2023 we found out that endocrine therapy failed. Unfortunately my liver and right lung progressed quite a bit. In February I started Enhertu, a new, promising, targeted chemo prescribed by my new doctor at City of Hope Duarte. My oncologist in Torrance retired and we decided to switch to the main campus in Duarte. What a wonderful place. I also had a PleurX catheter inserted into my right pleural space so that we can drain the excess fluid at home. A port was surgically placed as well as I had been having problems with having my veins accessed for blood draws and infusions. The port is a bit uncomfortable, but it sure is nice to avoid messing around with needles all the time.
In April of 2023 I was able to have the PleurX catheter removed! Yay! That thing was uncomfortable. We also found out that the Enhertu targeted chemo was not working well, so it was discontinued. Unfortunately this may be the end of my treatment. My oncologist is running some tests to see if there is anything I can take that doesn’t have a bunch of side effects.
What can I do to help?
Prayer, prayer, prayer - it’s what we need most of and you can stay updated with prayer requests on our blog here.
Letters - lots of people have been sending cards, bible verses and notes. This has been very encouraging and a fun thing to look forward to.
What hospital is she at / what doctor does she have?
Her oncology team is at City of Hope Torrance. She has had second opinions from Cedars Sinai and MD Anderson.
Will her insurance be able to cover everything?
Thankfully, Mic and Julie have amazing insurance and will most likely pay zero copays.
How is Julie feeling?
She is mobile but for sure not her usual self. She has quite a bit of pain in her legs, sides, neck and back. It gets better and worse at different points but is very uncomfortable to say the least. She has not been walking much besides to and from the car, but she loves getting out to water the lawn or to care for her garden box.
Can I visit with Julie?
We have been pretty busy with doctor’s appointments, visitors and still having time for rest. Just text Marisa or Michaela to see if we are free and feeling good enough for visitors. Visitors are very encouraging to Julie when it works out.
If you have any other questions that are not listed here. you can text Marisa.