“Choosing to have joy is not naively thinking everything will be easy. It is courageously believing that there is still hope, even when things get hard.” – Morgan Harper Nichols
I swear I did a post on this way early on, but I cannot find it in my list of posts, so here goes. It is often unknown that there are treatment options BEFORE surgery to remove the tumor. Initially, most of us just want the thing out of our body, so we likely just go along with getting surgery first. But there are benefits to preoperative systemic therapy for certain types of cancers.
I will only be addressing HER2+/HR+ cancer and more specifically one with a pT2 (pathologic tumor grade 2).
The National Comprehensive Cancer Network states:
In my specific case, had I not chosen to do preoperative systemic therapy, my prognosis would have been poorer and my overall recurrence rate higher. This is because, with neoadjuvant TCHP, I still had 10% of live cells in my tumor upon surgical pathology. This meant that TCHP did not do the whole trick and I needed further more targeted chemotherapy to help kill any remaining cells that were living in my body. Had I chosen surgery first, we would have never known and I would have never received my cycles of KADCYLA.
No part of cancer treatment is a one size fits all so it is important to have serious conversations with your doctors on your care team to ensure you're choosing the right path for your overall outcomes. And pretend this blog post was written in January 2024.
It's official. I qualify for and will be starting the SURMOUNT clinical trial in January 2026. It wasn't without much thinking that this decision was finally made. My family supported me from the beginning and I will be able to see them with my trips to Philadelphia. The clinical trial navigator was very patient as I asked a million questions to ensure I understood what was required of me for the study. My oncologist supports the trials as long as I can be on an aromatase inhibitor to keep my estrogen at bay. I can. It's a pretty set thing that I'll stay off the Tamoxifen at this point.
Both the SURMOUNT and ABBY trials are being completed at the University of Pennsylvania in Philadelphia, PA. It's amazing how a life comes together. I ended up going to Drexel University in Philadelphia for my Doctor of Physical Therapy education. That has now prepared me to feel comfortable in the city of brotherly love, despite living so far away in Alaska.
I started writing this post in July of this year and forgot to finish it. Here you go:
I have previously written a post about tamoxifen. At that time, the consideration was aromatase inhibitor vs. tamoxifen and what is right for me. Per my oncologist, tamoxifen is the better choice at this time due to its bone and heart protective properties as compared to an aromatase inhibitor. The plan is for 2-3 years of tamoxifen then a switch to an aromatase inhibitor for 7-8 to complete the 10 years of treatment.
I have recently learned of certain supplements, medications, and food that should not be taken with tamoxifen and figured I would share. I was not told of these by my care team.
Fast forward to now, being off of tamoxifen. I wrote in my last post that I would explain the mechanism of action. Tamoxifen is a selective estrogen receptor modulator (SERM). Due to this, tamoxifen acts as an anti-estrogen in breast tissue, blocking estrogen receptors to stop tumor growth, but acts as an estrogen-like substance in other tissues. This selective estrogen receptor modulator effect means it can improve bone density and lower cholesterol, but also increase the risk of uterine cancer and contribute to menopausal-like symptoms. This matters because I have a distant history of estrogen induced aural migraines. The hypothesis is that the tamoxifen may have recreated the environment for an aural migraine to resurface. Only time will tell.
All this to say, always speak up if you're feeling something that is off. There are options to get treatment or change treatment depending on what is causing the symptom. Don't just live with it or chalk it up to having cancer.
I had the fortunate ability to be a secret shopper with my patient experience role while needing emergency department (ED) services on Tuesday. I had floaters in my vision and expressive aphasia with both switching words and not being able to find the word I wanted. While I would have told my husband or family/friend to get to the ED ASAP, I kept working my PT shift and then decided to call my oncologist. He advised that I go to the ED. A caring, compassionate, and timely intake and processing through the ED including a brain MRI later, I got the good news there was no signs of a stroke, brain metastases, or brain lesions.
Fast forward to the next day and I get a call from my oncologist to see if I wanted to come in for a follow up visit. I did and based on my horrific ongoing side effects (significant fatigue, brain fog, apathy, weight gain) from tamoxifen along with his hypothesis that tamoxifen may have played a role in what may have been an aural migraine, he recommended I stop tamoxifen for a month, we reassess, and then potentially go on an aromatase inhibitor. I will post on the exact mechanism of action and why this makes sense a different day.
This sounded great to me because me, the person who always does everything by the book, did not have tamoxifen in her pill box for one week and wondered why she felt amazing and was having everyone say I sounded like me again. My oncologist says that likely confirms his hypothesis but wanted to trial off of it for a month, which he said won’t hurt my recurrence rate.
Day one off tamoxifen: I felt like posting. I planned ahead. I took the stairs… every time. I helped so many coworkers with what they need and patients with what they need. One said, “You have no idea how much you've helped me. My husband died 2 weeks ago and my world has been inside-out since then. Nothing makes sense and I've been extremely at odds. Your call this morning is the first hint of hope.” after I returned a simple phone call asking for resources. I felt like me again.
While mammograms are well known to detect cancer, a little known fact is that they may "also be used to assess the amount of calcium buildup in the arteries within breast tissue—an indicator of cardiovascular health." This is very important, especially in the younger female population.
"Heart disease is the leading cause of death in the U.S., with stroke at No. 5. But while cardiovascular mortality rates have been declining, the reduction has been more pronounced among men and remained stagnant among women under 55."
I had to let myself recover and focus on one day at a time. I am now 6 months post-chemotherapy. For the first time since I started chemotherapy on January 29. 2024, I feel like me. My energy is returning, my brain is firing, and I feel able to put some effort into more than just living. People are noticing I'm more like myself. All of this is positive, but I am still giving myself grace, because recovery isn't linear.
While I've been working on living, I was sent an email from Outcomes4Me about some clinical trials at the University of Pennsylvania. The article "Pioneering strategy may keep breast cancer from coming back" outlines current clinical trials at UPenn which focus on the chance of recurrence when there is a presence of dormant or disseminated tumor cells (DTCs) or "sleeper cells" in bone marrow and proposed treatment by existing medications already on the market. The article states, "'Our research shows that this sleeper phase represents an opportunity to intervene and eradicate the dormant tumor cells before they have the chance to come back as aggressive, metastatic disease,” Chodosh said. “Surprisingly, we’ve found that certain drugs that don’t work against actively growing cancers can be very effective against these sleeper cells. This tells us that the biology of dormant tumor cells is very different from active cancer cells.'"
I am considering participation in the SURMOUNT and ABBY clinical trials.
In short, the SURMOUNT clinical trial "screens qualified patients for the presence of DTCs in the bone marrow" via a bone marrow aspirate. This occurs most commonly in the hip area of the pelvis and is known to be very painful. If positive for DTCs, the patient is then "offered enrollment into a clinical trial that targets DTCs to prevent recurrence". In this case, that would be ABBY. If negative for DTCs, the patient remains in the SURMOUNT study and a new bone marrow aspirate is taken every 6 months for 3 1/2 years unless it becomes positive. If it becomes positive within the 3 1/2 years, the patient would again, qualify for ABBY.
Example of SURMOUNT Clinical Trial Method
In the ABBY trial, the patient would take a study medication with the hopes of targeting the DTCs. The patient would be taking either abemaciclib (Verzenio) alone, or abemaciclib (Verzenio) with hydroxychloroquine. Once participants enroll in ABBY, they are required to have in-person provider visits every 28-days (+/- 3 days), so basically once per month for 6-12 months. Treatment is for 6 months (or six 28-day cycles). If the patient continues to be DTC positive after the 6-month bone marrow aspirate, they have the option to continue on treatment for 6 additional months.
Now here's the catch, these studies are located in Philadelphia, PA.
How much is a life worth? If you watch Forensic Files, it can be for as little as $28. But really, what a moral dilemma between the potential to prevent recurrence of my breast cancer and the time and money it will take to get to the clinical trials. I know the potential benefits of participating are not just my own, but for the future of breast care treatments. It took many pioneers before me to be clinical trial participants to ensure I had the correct chemotherapy, radiation, and surgery for best possible results.
The Facts (with a reminder that my breast cancer was HER2+ and HR+ or triple positive):
Triple negative (HER2- and HR-) and HER2+ breast cancers have a higher risk of recurrence and often recur within the first few years (within 5 years).
HR+ breast cancers have a higher risk of late recurrence (after 5 years).
Of note, there are many other factors that increase (or decrease) the risk of recurrence but the study focuses on the receptor status so we'll keep it simple.
So far, in the SURMOUNT study, 90% of patients have negative DTCs while 10% have positive DTCs and are referred to a treatment trial, such as ABBY.
Abemaciclib (Verzenio) has the following side effects:
Diarrhea
Nausea
Risk of Infections
Low red blood cell counts (anemia)
Decreased appetite
Headache
Hair thinning or hair loss (alopecia)
Abdominal pain
Tiredness
Low white blood cell counts (leukopenia)
Vomiting
Low platelet counts (thrombocytopenia)
Hydroxychloroquine has the following side effects:
Nausea
Vomiting
Stomach cramps
Diarrhea
Loss of appetite
Headache
Dizziness
Fatigue
Irritability
Hair loss
Rash
Itching
Changes in skin or hair color (including white spots or dark patches)
Mild muscle weakness.
So the question therein lies, do I feel these same side effects as chemotherapy now, if I'm positive for DTCs, and add to the future treatment options for breast cancer, or do I wait to see IF I have recurrence and get treatment with likely the same side effects as above IF and when that occurs?
As mentioned by my loved ones, ultimately, the decision is up to me.
I’ve reached another milestone in my cancer experience. On June 30th, I got my port removed. It was an in office procedure, unlike the OR visit I required to get it in. A bit of lidocaine and I didn’t feel a thing! Because it was a foreign body, a pocket was formed around it and had to be removed as well. It decreases the risk of a seroma (fluid filled pocket under the skin).
It is just another checkbox off my list. Now it’s a daily pill of Tamoxifen and scans every year for 10 years to keep the cancer away!
My apologies for the long break in posting any information, but I was holding out for my final imaging (Echocardiogram and Mammogram) to determine where I stand after this long 525 days from diagnosis to no evidence of disease (NED)! I am not "cured" and I am not "cancer free". Close but not exact is in remission. The correct description is called no evidence of disease (NED).
"No evidence of disease” or, NED, is a term I use frequently, meaning there is no evidence of visible or detectable disease at the moment. The best example is when a patient who had cancer has repeated imaging and/or bloodwork drawn for tumor markers and neither demonstrates any findings of recurrent malignancy."
Remission
"When I tell a patent they are in “remission,” I typically mean that following a treatment (surgery, definitive radiation, chemoradiation, and/or chemotherapy) there is:
No evidence of visible disease on medical imaging.
I have a reasonable expectation that it won’t come back.
But they have risk for recurrence within a specified period, typically five years." (For me it is 10 years, due to my age)
Cancer-Free/Cured
"I don’t think I would use “cancer-free” until I was ready to say that someone is cured."
In other words, I achieved the best situation I could achieve in my situation with the type of cancer I have. My ongoing cancer treatment is Tamoxifen for 2-3 years and an Aromatase Inhibitor for 7-8 years for a total of 10 years of hormone suppression. I've posted on this before but to elaborate:
Tamoxifen is a hormone blocker. It is a selective estrogen receptor modulator (SERM) that blocks the effects of estrogen in breast tissue. Tamoxifen prevents estrogen from binding to receptors in breast cancer cells, which inhibits their growth and proliferation. This makes it an effective treatment for hormone-positive breast cancer.
Aromatase inhibitors are a type of hormone therapy used to treat breast cancer, especially in postmenopausal women. They work by blocking the enzyme aromatase, which turns the hormone androgen into small amounts of estrogen in the body. By reducing estrogen levels, they can help to slow or stop the growth of breast cancer cells that rely on estrogen for survival.
Today I had a total hysterectomy (removal of uterus) with oophorectomy (removal of ovaries) and salpingectomy (removal of fallopian tubes). This is a surgery that may or may not be required when one has hormone receptor + breast cancer. There are pros and cons to keeping them vs. removing them so it is important to talk through all the options if you find yourself in my situation. For me, they’ve got to go!
I recently returned to reading books, which I used to do often. I thank my patient who shared his own book and allowed me to return to taking time to sit down and read. I also thank my friend and colleague for inviting me to a book club where I’m reading a book I would have never chosen but am enjoying. I’m finding it peaceful and relaxing, taking me to new places such as New Caledonia.
Returning to reading is also possible due to my ability to attend to the task and process what I am reading, which has been limited due to my brain fog. I am finding it is easier to do these tasks and am focused to practice these skills so it continues to get easier and allow me to return to my prior thinking potential. I am taking another course from A Time to Heal which focuses on Brain Fog. I am looking forward to the evidence-based approach to return to my prior level of thinking.
This book parallels my blog, focusing on internal changes rather than external changes. A quote from the book:
"Although we're not all born equally happy, we can all become happier. Revolutionary findings in neuroscience have demonstrated that we can change our happiness setpoint. But it's not through changing our external life. It's through changing our internal landscape."
Since my colonoscopy, I've had some new found energy! I think a cleanse does a body good. Also news of no polyps or sign of cancer gives some relief as my familial risk of colon cancer was much higher than my risk of breast cancer (only 15% chance on my genetic testing).
With this new found energy, I was able to begin resistance training. We went to the gym and worked out our legs today.
Benefits of Resistance Training during Acute Therapy (Acute treatment options for breast cancer range from surgery, to chemotherapy, hormonal therapy, targeted therapy, immunotherapy, and radiation therapy, often in combination.):
Muscle Strength
"Resistance Training (RT) was found to be safe and effective at improving upper- and lower-body muscular strength in women with breast cancer undergoing acute therapy."
Secondary Lymphedema
"RT has been found to be safe for women surgically treated for breast cancer and does not worsen breast cancer-related lymphedema (BCRL) symptoms."
Cancer-Related Fatigue
"The exercise guidelines published by Campbell et al. added RT as an effective method for treating cancer-related fatigue (CRF).
Quality of Life
"Quality of Life has been reported to be affected positively by RT during adjuvant therapy."
Mental health stigmas are rampant and should be put to rest. Seeking mental wellness should never be looked down upon. One doesn’t have to be the extremes of mental illness to seek therapy as an avenue to navigate thoughts and feelings of an event or situation in their lives.
In my life, I have had two therapists. The first one I interviewed and she sent me NPR recordings of her work. I chose her and it was a great fit. She was a Psy.D which is a Doctor of Psychology and is a licensed clinical psychologist. She was what I needed at the time and although we only needed a few sessions, she was essential to my ability to move on from my experience.
I am now seeing and LCSW which is a licensed clinical social worker. Better yet, she is a cancer sister. This helped to make my decision on her being my therapist as someone who could truly understand what I was going through. I find it important to find the right therapist for you and to not be afraid to try a few out until you find the right one.
I’ve often thought, why can’t I just talk to my friends instead of a therapist? There are benefits to both but here’s why:
Finally, therapy isn’t just talking to someone about your problems, it is much more:
