First off, apologies for the long absence. Between working from home, homeschooling, gardening (I’ve got a CRAPTON of veggie plants and flowers that I love, pet, kiss, and call my green babies), bread baking (while the yeast lasted), quilting (I’m seriously turning into my grandmother), I’ve been a little busy in quarantine.
Busy is good. Busy has kept me from wallowing and perseverating over my upcoming mastectomy. Two years after oncoplastic surgery to remove the tumor in my left breast and reconstruction involving a breast reduction and lift, we found residual disease. My left breast has to go.
Thanks to Covid-19, my reconstruction will be delayed. That’s not super unusual, as women who opt for implants normally get expanders to stretch their skin prior to permanent placement of the implant. But it’s still stressful. I’ll be lopsided for a while, but I opted to keep the right breast to preserve sensation on at least one side. You knew you lose ALL sensation following mastectomy, right? The new boobs look fantastic and do you no good from an intimacy standpoint.
More on that in a later post.
This post is about perspective, looking ahead to tomorrow, the next few weeks, the next few months, and how to move forward. I received the following message from a Facebook friend, and it is perfect. I’d like to share it with all of you:
“Happy Mother’s Day, Dana. The most Hallmarkesque of the Hallmark Holidays. I trust that Patrick and the brood are making a fuss over you today, and every day.
Patrick has spilled the beans about tomorrow. I imagine that you must be both determined and more than a little whacked out and scared. If you weren’t, I’d be more worried about you.
Surgery is a big deal, and you wonder what life will be like on the other side. At least I did as I prepared for mine last year, when I was blindsided by news that my prostate had to go. I’ll spare you the gory details, but I am delighted that you will be spared the indignity of having a rubber tube jammed up your wee wee for 2 weeks.
I can report that almost a year later, life is still good. Turns out that my masculinity had virtually nothing to do with the operational status of Mr Happy. Your femininity has nothing to do with your hooters, to use the most inoffensive yet funny term I can think of. Bazooms ran a close second.
The most attractive part of a woman to me is her brain. I pray that with the surgery behind you, your brain can be free from worry, and that you can fill it with more good, tranquil and beautiful thoughts.
Your family loves you, especially that bizarre Dutch guy. We are all pulling for you, and send healing thoughts, love and joy.”
Thank you, Survivor Brother. That’s exactly what I needed.
On this, my second “Cancerversary,” I want to urge my fellow citizens to take this pandemic seriously, shelter-in-place, flatten the curve, and listen to scientists and health experts rather than politicians and rabble-rousers who value the economy over health and safety.
I originally submitted this as an Op-Ed to several news outlets, but in light of my upcoming surgery, the first of two thanks to Covid-19 dangers that have delayed my reconstruction following mastectomy, I decided to do a blog post. This is important. We’re all in this together, and those who choose to ignore expert advice are putting people like me in danger.
This isn’t the time to be selfish. Self-isolation isn’t just about you.
Like many Americans, I’ve been working remotely to comply with social-distancing and shelter-at-home measures. As a biomedical research scientist, I understand the particularly insidious way SARS-Cov-2, the coronavirus behind the deadly pandemic, can be transmitted exponentially through populations. Death tolls are rising. We’ve been told we need to flatten the curve, which means we need to slow the spread of the virus so we do not exceed the capacity of the healthcare system to treat severely affected patients. There are a limited number of ventilators available, a message that was driven home by Dr. Emily Porter, board-certified emergency physician and sister of U.S. Representative Katie Porter. Dr. Porter used her sister’s approach to educate the public on how exponential spread of the virus could overwhelm the U.S. Healthcare system, forcing doctors to ration resources and decide who gets a vent and who doesn’t. It’s a horrifying, ugly scenario with 1 patient in 50 getting a vent, and 49 patients left to die.
Her words at sent chills down my spine. “Imagine if you had to say, ‘Oh, I’m sorry. You’ve had cancer before, so therefore you don’t have a perfectly clean bill of health, so you’re not worth saving.’” I am a person living with cancer. My surgery has already been postponed due to the pandemic. Luckily, my tumor is slow-growing, giving me the luxury of time. Many thousands of other Americans and cancer patients around the world do not have that luxury. Cancer treatments cannot be suspended during the pandemic. As I passed through the Vanderbilt-Ingram Cancer Center on my last day of work, I saw a room full of men, women, and children, some in masks, waiting for their chemotherapy treatments. On the floor below, others waited for radiation therapy, and in the hospital a block away, cancer patients were recovering from surgery. These people are not only at risk for exposure while at their appointments, they are also immune-compromised or immune-fragile due to their cancer treatments and are less capable of fighting off the virus. To put that in perspective, a portion of the roughly 650,000 cancer patients who receive chemotherapy annually, not counting those receiving radiation therapy or the host of other patients with co-morbidities, are already more vulnerable to covid-19 death. Without ventilators, an unfathomable number of these patients will likely die. If we ration ventilators based on co-morbidities like cancer, I wouldn’t get a vent if I became infected.
I don’t want to die. None of these cancer patients, or patients with co-morbidities like autoimmune diseases, obesity, diabetes, or others want to die. Can you imagine beating cancer only to succumb to a virus, knowing that your fellow humans didn’t care enough to follow measures to flatten the curve and that’s why you can’t get lifesaving ventilation? Imagine your mother, your grandmother, your child, a newborn baby, your best friend, your colleagues, and imagine life without them—knowing they are gone because the people in their communities didn’t care enough to follow the rules.
Until recently, Tennessee has had a subpar response to the pandemic. Nashville has fared better thanks to measures implemented by the mayor, but there are too many state and local communities that aren’t taking this seriously. I implore them and I implore each of you reading this: follow the rules. Social-distance, shelter-at-home, don’t go out unless absolutely necessary, and take precautions when you do. Wash your hands. Hunker down. We can and will get through this, but only if we all do our part. Please do your part so people like me don’t have to die.
As much of America (not enough, but we’re getting there) and the world at large continue to shelter-at-home, self (or mandatory) quarantine, and take other measures to flatten the Covid-19 curve (In epidemiology, the curve refers to the projected number of new cases over a period of time), we’re facing many new challenges. We’re worried about our finances, job security, food security and the supply chain, medical supplies, and the economy, of course. We’re worried about our families, friends, communities, and the long-term impact of this pandemic. We’re worried about our childrens’ education, which like most of the rest of societal norms, has been put on hold. We’re worried about how and when the pandemic will end, and what we can do to prepare for the next one.
There will be a next pandemic. It’s inevitable.
For many of us who are classified as non-essential workers, we have more time to worry as we remain isolated from friends, family, and other social supports. It’s the perfect storm for anxiety and depression to thrive, and it’s a problem. Maintaining mental well-being, as well as physical and spiritual, can be a struggle in these difficult times. But it is essential if all of us are going to get through this.
I’m fortunate to have access to Telehealth services – hell, let’s be real: I’m fortunate to have access to healthcare and coverage in this nation, something we should ALL HAVE. I’ve been receiving tips from my wonderful therapist (and my son’s therapist, too), and I’d love to share this advice with all y’all. I hope it helps.
Keep a Regular Schedule
Keeping a routine is beneficial for health and well-being. You don’t have to be super rigid about it – flexibility is key. For us, weekdays consist of a regular wakeup time at 8:00 a.m., a loose homeschool schedule, regular healthy meals, free time in the evening, and a regular bedtime. Small steps, but they are sanity savers in uncertain times. We don’t know what’s coming tomorrow in the wider world, but we know what we need to do for the hours in the day. This is especially good for children.
Tune Out The Noise – News and Social Media
The media is a double-edged sword and has been for a long time. It’s important to keep abreast of local, national, and international news in a time of crisis, but too much apocalyptic doomsday speculation, news of tragedy, talking heads arguing back and forth, and watching our leaders at their worst isn’t healthy. Social media is much the same. Take a break. My therapist suggested having a designated 30 minute to 1 hour slot for checking in with the news and “unplugging” for the rest of the day. News is one thing, but I’m a social media addict! I love FaceBook, Twitter, and Insta, and these tools can be useful in terms of feeling connected with people during the isolation period. But avoid fights, don’t use social media as a gateway for too much bad news coverage to seep in, and don’t fall into the rabbit hole of 3 hours in TikTok land. That’s just not healthy.
Healthy Eating and Exercise – Essentials of Self-Care
This one’s been a challenge for me – eating healthy is hard when you love to bake and have time. But there are no downsides to healthy eating and exercise, and many of us have time now! The Internet is full of amazing recipes, which is especially useful when you’re working with a limited supply of ingredients. Check out this site for tools to help you plan meals based on what’s in your fridge and pantry. If you’re having trouble feeding yourself or your family, check with your school system (MNPS is continuing weekday meal service for students and families), food banks (find one near you here), and for state and local programs in your area.
For exercise, something as simple as stretches, sit ups, jumping jacks, and leg lifts are always a good choice. I’m working on strength and flexibility to manage side effects of tamoxifen and prepare for my mastectomy, so yoga is my go-to. Yoga with Adrienne is my online go-to. Walking through your neighborhood (while maintaining social distancing) is another great option, as is yard work, housework, and games like Just Dance and video game fitness options. Move your body several times a day in whatever way works for you.
Need to unwind? Warm baths and showers with extra pampering time are fantastic. Deep condition your hair, massage your scalp, practice mindfulness as you take care of your body. Whatever spiritual path you follow, rituals work to calm, heal, and comfort in difficult times. Use them, but do it safely. No mass gatherings!
Find Connections When and Where You Can
Remember when I said to avoid social media? While avoiding the negativity on social media is a great thing, using it as a tool to connect with people you cannot see in person is a beautiful thing. I’m appreciating all of the amazing talents on display in FaceBook, Twitter, and Insta videos, which is even more fun with people I know! Have an IM chat. Call a friend or family member. Use Zoom, Skype, or FaceTime if you’re so inclined and are willing to put on a bra (pants optional). Human connection, even for introverts like me, is essential.
You might consider creating content to share during quarantine. I’ve done my part with this dramatic reading of “Does It Fart” to educate and entertain the public with the subject of animal flatulence.
Don’t Drink, Sleep, or Work Too Much: Moderation
It’s tempting to use this shelter-at-home thing as an excuse to over indulge. If you’re drinking or using drugs to self-medicate, though, please stop! You’re risking your life, health, and emergency medical services are already strained due to the pandemic. Get help! You are important, you matter, and we can’t lose you!
Getting rest is a good thing, but too much sleep isn’t healthy. See above – keep a routine, including a normal sleep routine, for health and sanity.
It’s tempting to use this time to dig deep into work-related projects, as many of us feel the pressure to catch up, not get behind, and are worried about career and job security in this difficult time. But, as noted above, routine is key. Work, take regular breaks, and STOP each day. This is therapist-recommended!
Have fun and Be Weird
You’re at home with family, pets, or possibly on your own.
Embrace your weirdness and have fun with it!
In my house, we have Bob, the Halloween skeleton who we’ve decided is (a) not just for Halloween, (b) gender fluid, and (c) a being for all seasons. Bob likes to dress for the season, so he’s sporting one of my favorite sundresses, a lovely cap, and is striking a sassy pose with flowers. That’s my weird (one of them, anyway).
Resources for pandemic: Ready.gov, Benefits.gov (resources for unemployment, healthcare coverage, food), GrantSpace.org (links to resources for bill pay assistance, grants, etc.)
Day three of quarantine for me. My institution is doing the right thing by sending us home. Shutting down laboratory research sucks, but by being cautious and practicing social distancing, we will survive, stay healthy, and be able to get back to work after this necessary pause. I’m privileged to have an employer that recognizes the necessity of these measures, and thanks to National Institutes of Health measures, I’ll still be paid. So my plan is to catch up on scientific literature review, write a review paper, and work with my student remotely on her manuscript in preparation.
I also plan to blog, to write, to spread a bit of information, humor, and hope through the Internet to folks near and far, starting with this post. I’ll cover a bit about the science behind the covid-19 virus – the type of virus, its origin, its mode of spread, and its capacity for mutation and formation of unique strains. Then, I’ll provide information and links to resources to help minimize the risk to cancer patients actively recovering from surgery, on chemotherapy and radiation therapy, and the general considerations patients and survivors should consider during this pandemic.
First, some nomenclature (fancy term for naming things): The virus is actually called Severe Acute Respiratory Syndrome Coronavirus 2 (SARS-CoV-2), formerly known as the 2019 novel Coronavirus (2019nCoV). The virus causes the Coronavirus Disease 2019 (COVID-19). Covid-19 is used interchangeably by the media and government agencies for both the virus and the disease it causes. It’s related to the SARS-CoV virus that caused severe acute respiratory syndrome in 2002-2003, as well as MERS-Cov (Middle East Respiratory Syndrome). They are a part of the Betacoronavirus genus, which are characterized by a viral envelop and positive-strand RNA. What does that mean?
Structure: As you can see from the transmission electron micrograph on the left, the virus is round, and its internal contents are surrounded by an envelop. the spiky protrusions sticking out from that envelop are actually proteins. This inspired the name of this type of virus, as these proteins make the virus look like a crown. These proteins include: (1) clusters of the Spike, or S proteins, latch onto a specific protein on the target cell (receptor molecule), and also help the virus fuse to the target cell membrane and become internalized by the target cell; (2) the Membrane (M) glycoproteins are under the spikes, where they help maintain the shape of viral particles and bind to the inner layers of the virus; (3) Lipid (fat) is taken from host cell membranes during previous infections and incorporated into the viral particle; (4) Envelope (E) glycoproteins help assemble new viral particles and help with release and infectious properties of newly-formed viruses; (5) Nucleocapsid (N) proteins that bind and package the RNA genome also help the virus hide from the host immune system. See figures below.
Viral Replication and Infection: These viruses break the rules of the Central Dogma of Molecular Biology (i.e. genetic information flows from DNA to RNA to protein – see previous post). Their genetic information is stored as RNA, which is normally the intermediate cells use to create proteins from the genes encoded by DNA. This works to their advantage, since they trick the infected host cell into translating viral RNA encoding the structural proteins that protect the virus, as well as protein processing. They also trick the host cell into replicating the viral RNA genome and packaging it into new viral particles that are then released from the cell to infect other host cells, as shown in the figure below. The cell surface receptor for SARS-CoV-2 is angiotensin-converting enzyme 2 (ACE2), which is expressed on, among other cell types, lung epithelial cells.
One of the most insidious things viruses do is adapt rapidly through mutation of their RNA genomes. This property is actually what allowed both the original SARS-CoV coronavirus and SARS-CoV-2 to cross species and become infectious to humans (zoonotic). SARS-CoV-2 may have originated in bats, and likely made the jump to humans in a wet animal market in Wuhan, China where domestic and wild animals were slaughtered for meat on site, allowing blood and meat from multiple species to mingle (some of the first patients were epidemiologically linked to the market in Wuhan – Reference Khan et al. J. Clin. Microbiol. doi:10.1128/JCM.00187-20 – hit me up for PDF since the article is not yet publicly available). Many infected individuals can be asymptomatic (not sick) while spreading the virus, which makes it even scarier (Lai et al., 2020, Journal of Microbiology, Immunology, and Infection, in press – hit me up for the PDF since the article is not yet publicly available).
Symptoms: Quoted from Khan et al. J. Clin. Microbiol. doi:10.1128/JCM.00187-10 “Clinical features associated with patients infected with SARS-CoV, MERS-CoV and SARS-CoV-2 range from mild respiratory illness to severe acute respiratory disease (1, 17). Both MERS and SARS patients in later stages develop respiratory distress and renal failure (1, 17). Pneumonia appears to be the most frequent manifestation of SARS-CoV-2 infection, characterized primarily by fever, cough, dyspnea, and bilateral infiltrates on chest imaging (17). The period from infection to appearance of symptoms varies. Generally, it is thought to be 14 days, however, a research group at Guangzhou Medical University reported the incubation period to be 24 days. In a family cluster of infections, the onset of fever and respiratory symptoms occurred approximately three to six days after presumptive exposure (41).” Testing for SARS-CoV-2 is performed by using reverse transcriptase polymerase chain reaction (RT-PCR) to amplify viral RNA in samples from patient until levels are high enough to detect.
Treatments: The bad news is that there are no effective treatments for SARS-CoV-2 infected individuals, though pre-clinical testing for remdesivir and chloroquine shows promise, and existing anti-viral targeting approaches may warrant testing. Vaccines are being developed, but will likely not be validated and available for several months to over a year. The best strategies include social isolation to prevent spread, and management of symptoms for infected individuals (but perhaps avoid ibuprofen to be safe). Reinfection is also possible.
What does this mean for cancer patients and survivors? People with cancer and people who are in active cancer treatment may be at higher risk for SARS-CoV-2 infection and severity of Covid-19 Respiratory Sydrome. Survivors not currently in treatment should not be at higher risk, but check with your healthcare team about the effects of ongoing systemic therapies and increased risk. The American Society of Clinical Oncology (ASCO) is sharing and updating information for cancer patients on their blog, and their recommendations as of March 18, 2020, include:
Be sure to have enough essential medications, both prescription and over-the-counter, to last for up to a month.
Create an emergency contact list that includes family, friends, neighbors, and community or neighborhood resources who may be able to provide information or assistance to you if you need it.
Finally, if you are scheduled for cancer treatments during the COVID-19 outbreak, have a discussion with your oncologist about the benefits and risks of continuing or delaying treatment.
These are additional measures, and cancer patients should definitely follow the social-distancing, frequent hand-washing, avoidance of touching face (eyes, nose, mouth) with hands, and avoidance of close contact with sick people. They do not recommend face masks as a way to prevent COVID-19. But if you’re sick with a respiratory illness, like flu or COVID-19, wearing a face mask could prevent the illness from spreading to those around you.
Bottom line: Stay in touch with your healthcare team for guidance on how to minimize exposure risk during ongoing cancer treatments, and follow general population guidelines for social-distancing, hand washing, and disinfection. Wishing you all continued health and safety!
Metastasis – the spread of cancer from its initial tissue of origin to another part (or parts) of the patient’s body – is deadly. Metastatic disease is, by and large, what kills people with cancer. It is an ongoing challenge for healthcare providers and researchers, and, as you may have guessed, it’s complicated.
But what exactly is metastasis? How does the process work? And why is it so hard to treat? I’ll cover what we know in this blog post, current and emerging therapies, and ongoing research designed to treat metastatic disease and allow cancer patients to survive and thrive by keeping their metastatic tumors at bay.
Here are the basics: tumor cells that have the ability to break away from the primary mass and invade the surrounding tissue can travel through the body via circulation (by entering the bloodstream directly or or by entering lymph nodes and from there, lymph vessels that shunt fluid back into circulation), invade a secondary organ, and begin to grow and form a new mass at the second location.
This isn’t easy for cancer cells to do. One of my grad school professors once referred to metastatic cancer cells as the decatheletes of cancer cells. Losing cell-cell contact with the tumor mass, invading the surrounding tissue, which is often a hostile environment without resources available to the primary tumor mass, is risky. Entering circulation is even more risky. The cells of origin for cancer cells are not normally equipped to withstand shear forces produced by flowing blood. They also have to avoid detection and destruction by immune cells, not only in circulation, but within the tissue of origin and within lymph nodes. Immune cells are programmed to seek out and destroy unhealthy cells, which may harbor bacterial or viral pathogens that threaten the body as a whole. Metastatic cells also have to crawl along blood vessel walls or hitch a ride on platelets, surviving in circulation without the resources available within the primary tumor mass.
If the metastatic cells manage to survive breaking away from the primary mass, evade vigilant immune cells, and travel through the harsh environment of the circulatory system, they face the arguably greater challenge of exiting circulation and setting up shop in an entirely different organ system that may or may not be similar to their original home. Think of them as colonists. They need to secure a space to live, gather resources from an unfamiliar landscape by competing with native cells that are better equipped because they belong, and they need to adapt and change the behavioral programs controlled by their genetic instructions in order to grow and establish a new tumor.
For breast cancer cells, common sites of metastasis include liver, lung, bone, and brain. Why those sites? One theory, the “seed and soil” hypothesis, argues that tumor cells are like plant seeds, which travel in all directions but can only live and grow if they land in compatible soil, meaning something about these particular organ environments allows tumor cells to take root. It’s an old theory, first posed by English surgeon Stephen Paget after studying autopsy records of 735 patients who died of breast cancer and spotting patterns.
During the process of invasion and metastatic spread, cancer cells experience a lot of pressures, and combined with a relatively unstable genome (covered in previous post), these pressures select for survival of cells that adapt in a process comparable to evolution by natural selection: cells that survive long enough to divide are more likely to pass favorable traits to their daughter cells. One effect of this process is that tumors formed by metastatic cells are often very different from the primary tumor, making them resistant to the therapies used to treat the primary tumor as well as other treatments. Often, they cannot be removed easily by surgery, are resistant to or quickly become resistant to chemotherapy, radiation, and targeted therapies, and grow at a rate that depletes the patient’s body of life-giving resources and causing the organs in which they are lodged to fail. In a nutshell, metastatic disease is incredibly difficult to treat.
So what can we do about it? The good news is that it is possible to manage metastatic disease in some cases, allowing patients to live longer with better quality of life. More therapies are extending the lives of patients living with metastatic breast cancer, including CDK inhibitors like Palbociclib [Ibrance; other similar drugs include Abemaciclib (Verzenio), palbociclib (Ibrance) and ribociclib (Kisqali)] that target cyclin dependent kinases that drive rapid proliferation of cancer cells, slowing their growth. Others include HER2 antibody-chemotherapy drug conjugates (delivers chemotherapy more specifically to HER2+ metastatic breast cancer cells), second-line HER2 targeted therapies, PI3-kinase inhibitors (which target a signaling pathway that is aberrantly activated in ~60% of cancers), PARP inhibitors (block DNA damage repair pathways to make cancer cells respond better to DNA damage inducing chemotherapy), and immune checkpoint inhibitors (activates T-cells in tumors and allows them to kill metastatic tumor cells) among others. See previous post for information about some of these molecular targets. For more on tumor immunology, click here.
These therapies extend the lives of metastatic breast cancer patients, but they are still a temporary fix. As mentioned above, metastatic tumor cells are tough, incredibly adaptable, and able to develop resistance to therapy. Another approach involves finding a way to induce or maintain tumor dormancy, a state in which tumor cells survive but remain quiescent rather than growing rapidly. Many metastatic lesions can persist in a state of dormancy for decades, and we do not yet understand what keeps them dormant, and perhaps more importantly, what activates their growth. But as researchers unravel the molecular mechanism that regulate dormancy and reactivation, new therapies can be developed to maintain dormancy – thus allowing cancer patients to survive and thrive during a normal lifespan in spite of their tumor burden.
Take home message: metastasis is a complex process that enables invading tumor cells to break away from the primary tumor, travel through the patient’s body, and set up shop in different organs. They are difficult to treat and are the main cause of cancer deaths, but current and emerging therapies to manage metastatic cancer are allowing patients to live longer, better quality lives.
I’ve come to terms with the fact that I’m not done with breast cancer yet. But I don’t have to like it, and I don’t have to pretend that I’m entirely okay. I need help. Still in therapy, meeting with my care team on Thursday to come up with a game plan to get rid of this stupid little 6 mm bastard of a tumor, and then meeting with the plastic surgeon the following Monday to discuss Tits 3.0.
It’s a lot. What’s keeping me sane right now, aside from my family, Netflix Comedy Specials, and cat videos on Facebook, is my work. Y’all, I get to kill breast cancer cells ALL THE TIME in the lab. It’s so cathartic and gratifying. I wish with all my heart it was as easy to kill cancer cells in patients as it is in little plastic dishes. It’s not, but what we discover in little plastic dishes could eventually lead to the next cancer therapy.
My amazing student, who’s working with cancer cells that are similar to mine (hormone receptor positive), saved a plate for me. Not only did she save a plate, she decorated it with an adorkable “destroy me” tag that made me giggle snort.
I adore her.
Naturally, we decided to video me killing cancer cells.
As noted in the video, please for the love of your health, do NOT drink hydrogen peroxide to kill you tumor. It’s #toxic and not in a way that will target your cancer. But, as you can (hopefully) see, it stresses out the cells in the dish, overwhelming their defenses against oxidative stress to the point of death.
But, having the power to kill tumor cells that are similar to those growing in my body helped me on a psychological level. And if any patients or survivors want me to kill cancer cells like yours in the lab, I’m down! Hit me up. I can use chemo drugs, approved and experimental cancer drugs, peroxide, detergents, soda (it totally works), you name it. Let’s get creative!
Last week, I had my 6th biopsy. I actually blogged (read: bitched) about it in a previous post. CNN version: when I went in for my routine mammogram, which turned into four separate boob squishes and an ultrasound, a spot showed up in my left boob – the one that had already developed two tumors (surgically removed) and had been irradiated. It was likely nothing, but since it was in the cancer boob, we went ahead and biopsied it.
It wasn’t nothing.
Bad grammar aside, once again (and near what was supposed to be my 2 year cancerversary), I got the call we all dread. It’s cancer. 6 mm invasive ductal carcinoma, ER+/PR+ (probably) HER2-, in the same breast that had been irradiated, and in the same body that’s been on estrogen blockers for nearly 2 years.
Once again, I’m numb, angry, scared, and filled with uncertainty. Invasive. How far has it spread? I should get a PET scan – what if it has metastasized? I’ll likely have a mastectomy at this point, one or both breasts, but what else? Will I need chemo? More radiation? A new drug cocktail?
Will I be alive next year? In two years? The statistics say yes, but what about five to ten years down the road?
Once again, I had to call family and friends with bad news, had to fall apart in my husband’s arms, had to tell my daughter. I still have to tell my son. I feel like I’ve failed. I’ve let them down. Should I have toughed it out with the aromatase inhibitors that made me so sore and achy that I could barely get out of my car, out of a chair, out of bed? Should I have gone for chemo in spite of my Oncotype DX results? Should I have just lopped off both breasts to begin with?
Rationally and objectively, no, I didn’t fail. Cancer is insidious, sly, and unpredictable. No one has a crystal ball. Based on the information we had at the time, breast conserving surgery made sense. I stand by that decision. I stand by my Oncotype DX results and decision to forgo chemo and opt for medically induced menopause and tamoxifen – because in order to live life, I needed to be able to get out of my car, out of chairs, and out of bed.
Here’s what I know: My odds are still good for survival. Losing one or both breasts is going to be painful, heartbreaking, and sad, but those are the cards I’ve been dealt and I will play them. I’ve been through this before, and years from now, I may go through it again, but I’m here now. I want to live. I want to watch my children grow and be there for them as they transition from incredible teens into amazing adults. I don’t want to miss a minute. I want more long days and loving nights with my husband. I want to laugh, travel, work, play, and not let cancer rob me of my life.
I don’t know how to get there yet, but I will get there. I will face what’s to come and I will keep fighting in the lab, as an advocate, and as a survivor. Cancer will not defeat my spirit. It will not rob me of joy for however long I may yet live. Strong, weak, confident, scared, sure, uncertain, and everything in between, I will face this.
I learned so many new things today at Patient Advocacy Orientation! My best days are when I’m learning new things. It’s one of the things I love best about being a scientist, and it’s a great foundation upon which to build for my new work as a Patient Advocate.
What exactly are advocates and what do they do? In terms of Research Advocacy Programs, advocates are disease survivors (cancer survivors in my case), caregivers, and members of the community who provide the patient perspective to researchers to help shape the nature and direction of cancer research and patient care. Their role is critical, as they serve as a voice for patients, helping investigators tailor their research with patients concerns in mind – not just in terms of outcomes and sound science, but also in terms patient comfort, respect for patient rights and dignity, and beneficence. This means making sure the goals of research are focused on and aligned with serving patient needs and improving outcomes and quality of life.
This seems pretty intuitive, and I believe most investigators are truly committed and passionate about doing research that will make a difference, be it developing new treatments, better diagnostic tools, reducing side effects of existing treatments, and improving survival and quality of life for patients. I certainly was and am. But most investigators don’t experience what patients do – except in cases like mine where researchers become patients and survivors. My experience certainly changed my perspective, which is why I want to share what I’ve learned with both the research and survivor communities.
That mission became more urgent for me today in the face of some jarring statistics. Tennessee and the surrounding regions have some of the highest cancer death rates in the United States.
Comparing the map above to the map below that shows new cancer cases diagnosed by state, incidence, the frequency with which cancer occurs, doesn’t fully explain higher death rates.
My heart sank when I saw these data, and really drove home my privilege. I am well-educated, have a high socioeconomic status, have access to insurance coverage and some of the best health care available in the United States, and I have inside information based on my work as a breast cancer researcher.
I’m lucky. Far too many of my fellow Tennesseans and Southerners are not. My Institution and Affiliated Cancer Center serve this region. I want to be a part of better serving patients in this region, which will be a HUGE focus of my advocacy work.
What will this work involve? One of the ways I think I can be of use is by helping recruit patients for clinical trials. According to what I learned today, many promising new drugs do not make it through Phase III clinical trial testing* due to failure to accrue enough patients to sufficiently test their effectiveness. That’s such a shame and missed opportunity. Of course, there are many barriers for patient participation in clinical trials – fear/lack of understanding; lack of access due to barriers to travel/transportation, unmet childcare needs, inability to take time off work, etc.; disparities that make minority populations reluctant to participate**. While I am not in a position to combat access to trials, I am in a position to serve as a liaison between patients and clinical researchers accruing patients for trials. I can help educate potential trial participants in the process, assure them of their rights (including the ability to stop participating at any time), alleviate fears through helping patients understand the benefits and how they might be helping a great number of future cancer patients. I am also working with African American advocates and other advocates of color to understand and be sensitive to those communities, their histories, and their needs.
Those needs are great, particularly in terms of breast cancer outcomes. African American women diagnosed with breast cancer have lower overall survival rates compared to white women. Finding out why is crucial for closing the gap. Increasing African American participation in clinical trials is a key part of that process.
For more on cancer disparities across ethnic groups, click here.
*I’ll cover clinical trials in more detail in a future post. Click here to learn more now. Phase III trials test drugs that have already been proven safe and promising in terms of effectiveness.
**African Americans remember the horrific abuses perpetrated by scientific investigators, including those in charge of Tuskegee Study of Syphilis – which resulted in hundreds of African Americans being denied treatment in order to study the long term effects of untreated syphilis
Warning: This post is full of swears. It’s been a total shit day.
Getting “normal” annual mammograms after breast cancer is nerve wracking. I get that. Literally. Today was my second routine mammogram after completing surgical and radiation treatments. What (I’d hoped) would be an hour long visit followed by an, “All clear! Go, and live happy,” turned into a 3 1/2 hour long ordeal that consisted of FOUR FUCKING IMAGING sessions, an ultrasound, and scheduling another biopsy.
This is fucking bullshit.
For those of you who’ve been there, done that, bought the T-shirt (that reads, “Of Course They’re Fake – The Real Ones Tried to Kill Me”), you get it. I’ve had several survivors in my circle offer support, well-wishes, and cat memes, and I’m grateful. For those of you who haven’t been there (and I hope you never are), let me give you some background. At the time of this blog post I’ve had:
Six biopsies (last time was a charm with the Big C)
Two lumpectomies (one to remove a benign papilloma and the other to remove cancer – followed by oncoplastic reconstruction involving a reduction and lift)
Implantation of TWO Savi Scout devices to mark my tumors (this was mammography assisted, meaning I was in fucking compression while two GINORMOUS needles the size of small screw drivers were stuck into my left boob and I actually saw the tip of one come out the other side)
Twenty-eight rounds of radiation on my left boob – crispy bacon, anyone?
And a partridge in a pear treeeeeeee!
You’d think that would be enough. Seriously. But, alas, not for me. Whenever I go in for routine checks, I get the extra imaging, the call backs, the ultrasounds, and the biopsies. My breast are pincushions. It’s not fun.
Today’s visit started out well enough. I went into the room with my lovely robe, wiped off the deodorant I’d put on (because I forgot that I wasn’t supposed to use any), flopped out one boob, then the other, let the nice nurse get to second base while positioning my boobs, had my (first) mammogram scans and returned to the waiting room. Aside from being a bit sore (the left boob, cancer boob, is harder than the right thanks to radiation and it’s pretty uncomfortable in the old squeezy squeezy machine), I was content. I texted the lab to tell them I hoped I’d be in soon and then enjoyed some Facebook and Twitter time while waiting. I also had in-room entertainment in the form of a brash and bawdy lady who was Skyping – loudly – and having the kind of inappropriate conversation that you kind of want to film because it’s disturbingly awesome and no one will believe you unless you record it. All in all, not too shabby.
Then, they called me back. Just need a few more images, they told me. Nothing to be concerned about. I groaned, but was still okay. Considering my normal experiences with mammograms, this was a drop in the boob bucket. I got squished, got sore, and was escorted back to the waiting room filled with other women in those high fashion robes you get when you have to get your boobies squished. My entertainment was gone, and I missed her terribly, but I was slightly more concerned with the passage of time.
I mean, I did have work to do.
They called me back again. This time, the nurse (BTW, they’re all wonderful and I don’t fault them for any of this) explained that they’d found a spot. It was of concern because they hadn’t seen it on my previous post-treatment scans. They hadn’t seen it, because apparently this time the nurse was so good that she got images closer to the chest wall and they were seeing new areas for the first time. On the one hand, go nurse! Great technique!
On the other hand, WTF is the spot? Is it something I should worry about? We don’t know how old/new it is because we haven’t seen it before. Seriously, I’m two years out. I shouldn’t have a recurrence.
They needed another set of scans to make sure it was real, especially since they’d seen it only in one image/plane. So, for the third time, back in the boob vise for a trip to fuck that hurts land.
I go back to the waiting room. And…I’m called back for – I shit you not – ANOTHER round of images. This time they let me stay in the room with the owie machine while I wait for the radiologist to have a peek. Shortly thereafter, they tell me, as I predicted by this point, it was ultrasound time!
I’ve had plenty of ultrasounds.
As is my standard practice, I asked if I could see the screen, explaining that I’m a breast cancer researcher. Yeah, I got breast cancer, too, the irony isn’t lost on me. Yes, I’ve become more passionate about my research and am getting into advocacy, too. Sure, I’d love to see the mammogram image of the spot in question. Interesting (i.e. I have no idea if what I’m seeing is bad or not – then again, neither does anyone else or I wouldn’t be here).
I flopped out my left boob, the one I’d called a pain in my ass during my 4th time in the booby squeeze machine (and made the nurse giggle snort), put my left hand over my head, got the ultrasound goo smeared over my bad boob, and then the nurse commenced with the scavenger hunt via wand. And she wanded. And she wanded. And she wanded.
My arm was getting a little numb, and I was a bit concerned that she wasn’t taking pictures, but I just chilled. Then, she told me she wasn’t sure anything she was seeing matched the spot on the mammogram. So she grabbed the radiologist, who came in, goo-ed me up, and wanded. And wanded. And wanded.
The radiologist laid it out for me. They’d seen this spot, which was uniform in shape, an oval, and was most likely nothing to be concerned about – fat necrosis, an artefact of scarring, or a benign lesion. Given that it was in my bad cancer boob, she recommended a biopsy. And since they couldn’t find it by ultrasound, I would need a mammogram guided biopsy.
That’s exactly as sucktastic as it sounds. I will be put in (terribly uncomfortable) mammogram compression and stay there while someone jabs a fucking biopsy needle into my boob. Yes, I’ll have lidocaine, but that’s not going to help with the squeezy squeezy or the HORROR!
And, while I wait 9 days for the biopsy and another 5-7 days for the results, I’ll be stressed out. This is the reality for survivors. We’re ALWAYS nervous with scans, and it’s compounded when extra examinations are needed. It’s terrifying. Yes, rationally I understand that the odds of finding another tumor are extremely low, but the fear is visceral and always there. I’m worried it always will be. Most days, I’m upbeat and snarkily positive, but not today.
Some days, the best you can do is just hope for better tomorrow.
Essential oils. They’re EVERYWHERE! Articles and posts touting their alleged benefits are all over social media, some news media, and the Internet. A Google search I performed today yielded 1.7 billion results. 1.7 BILLION! Yup, there’s a LOT of buzz about the wonders and medicinal benefits of essential oils.
And almost all of it 100% certified Grade A Bullshit.
This post is dedicated to debunking one of my least favorite bullshit woo woo scams (second only to homeopathy). And I will do so with the power of science and snark, because that’s just who I am as a person.
So what are essential oils? They are oils purified from plants and carry the aroma of the source from which they are extracted. Their name comes from the fact that they are thought to contain the essence of their source, and they smell pretty good thanks to terpenoids, aromatic organic compounds produced by plants that often function as chemical protection against herbivores, insects, and microbes. They also serve as attractants for pollinators, seed dispersers, and in mediating plant–plant and plant–microbe communication. Humans enjoy them because they smell and in some cases taste really good. Sadly, allergies prevent me from enjoying the florals, but I enjoy herbals and fruit oils in a wide array of products – cosmetics, soaps, perfumes, lotions, bath products, and many food items. They’re just nice.
But do they have any medicinal value? What about medicinal value when it comes to cancer? Part of the issue with answering this question involves the (lack of) regulation when it comes to production and testing. The concentration of active chemicals in extracts can vary widely from plant to plant, which parts are processed (different concentrations in leaves, flowers, stems, and roots), which season the plants are harvested, which strains are sourced, etc. Without consistent batches subjected to quality control to assure consistent concentrations of active chemical components (like terpenoids), and without rigorous, scientific studies, we can only rely on anecdotal evidence and (often misleading) claims from suppliers. Some efforts are being made by the WHO for quality and safety evaluation of herbal products, including chemical fingerprint analysis*. Much like vitamins and supplements, which are not subject to the same rigorous FDA standards for safety and efficacy (how well it works) as drugs, essential oils fall under the category of “safe for their intended use,” which does not involve use as medical treatments. They’re considered safe until proven otherwise, a MUCH lower standard than FDA approved drugs.
More importantly, they are (by fairly low standards) rated for safety, but not for EFFICACY. That would require clinical trials and rigorous testing.
Should we be researching them? Sure! Some pre-clinical studies involving cultured cells (cells grow in a petri dish under laboratory conditions) and animal (primarily mouse) models have been published. A systematic review of the literature from 2014 to 2019 identified 79 studies that fit inclusion criteria – including studies investigating essential oils with anti-microbial and immunomodulatory (affects the host immune response) properties, nutrition studies, studies with controls and proper statistical analyses. Of those studies, many documented the anti-microbial (bacteria fighting) and anti-fungal (fungus fighting) properties, antioxidant properties that may help slow food spoilage, and anti-inflammatory properties in laboratory and agriculture models. And, in some preclinical studies, high doses of essential oils can kill cancer cells in culture in a laboratory setting. Does that mean they’ll do the same thing in humans? Not necessarily. See my post on turmeric.
Just for perspective, it’s pretty easy to kill cancer cells in culture in a laboratory setting. I once killed a dish by accidentally leaving the cells in phosphate buffered saline instead of growth media. Yes, salt water can kill cancer cells in culture. So can many drugs, but the majority of compounds with anti-cancer activity in cultured cancer cells and mouse models are not effective in human clinical trials. So, the jury is out on whether or not the active ingredients essential oils can help treat cancer. And inhaling the pleasing aromas produced by essential oils may effect mood, but it doesn’t do anything to thwart cancer growth, survival, or invasion.
These observations definitely warrant more laboratory investigation, but as of this post, there is no evidence that essential oils fights cancer when inhaled or ingested or delivered in any other way into the human body. Advertisements by scammers like the ones listed below are lies:
These are some of the top hits under a Google search for “treating cancer with essential oils.” As is my standard policy, I will not share links for woo woo. The misinformation and outright lies are not only infuriating, they can prove deadly for patients who skip standard therapies in favor of alternative “therapies.” The stats are heartbreaking. In a Yale School of Medicine study (link to original publication here*), “patients who used alternative medicine in place of standard evidence-based medicine had a death rate 2.5 times higher than patients who received standard evidenced-based therapies.”
Women with non-metastatic breast cancer who opted for alternative “medicine” were ~ 6 times more likely to die within 5 1/2 years compared to women who received standard of care therapy. This is a small study – 281 patients – and captures data from patients who disclosed their decision to follow alternatives versus standard of care. It doesn’t include patients who do not disclose or discuss this with their health care providers, so the numbers could actually be higher.
For more information on aromatherapy – separating fact from fiction – click here. Check out this article, too. Bottom line: much like cannabis, essential oils may offer relief from the side effects of standard of care treatments, but they cannot cure cancer nor should they be used as a substitute for standard of care. Complimentary alternative medicine is fine, as it compliments proven therapies, but not on their own.
*Access to this article is limited by a paywall. If you want to read it for yourself, hit me up and I’ll send the PDF.