Talking to My Tatas is on Sale!

Great news! My publisher, Rowman & Littlefield, is having an INDIE-spensable Sale, with 35% off the price of select books including Talking to My Tatas: All You Need to Know from a Breast Cancer Researcher and Survivor. The book must be purchased through the Rowman & Littlefield website to get the sale price.

Use the promo code 22JOYSALE at checkout to get the sale price now through January 6, 2023!

This is a great deal, as you’ll save over $12 on the Hardback and almost $12 on the eBook. Know someone who is going through breast cancer? This would be a helpful gift. Know someone who’s a science loving nerd? They’ll probably like it, too!

Knowledge is power, and humor is healing.

Grab a copy while the sale lasts!

Sharing My Patient Story with Conquer Magazine

Conquer: The Patient Voice is a fantastic publication for cancer survivors and those living with cancer. I was so grateful for the opportunity to share my story in the October issue!

Stories are powerful. I knew that before I was diagnosed with cancer. As a fiction writer and as a science communicator, I understood the value of stories, the impact they could have beyond facts, numbers, and concepts. Personal stories connect us to the experiences of others like nothing else, and they can inform, inspire, give hope, and educate all in one.

I’m a big fan of stories, and the stories of patients in Conquer Magazine have inspired me, given me hope and insight, and educated me in ways no scientific study or statistical graphic could. No disrespect to science. It’s my bread and butter. But using the power of personal stories to engage people is a gateway to informing them.

I encourage all breast cancer survivors and those living with breast cancer to share their stories. At your level of comfort, of course. Share with your family and close friends. Share with survivor groups. Or share with a wider audience and use your platform to advocate and educate.

You are powerful. So is your story.

Here’s the link to my story! When Cancer Asked Me What I Was Made Of

Interview with Fox 13 Tampa for National Breast Cancer Awareness Month!

It’s day 26 of National Breast Cancer Awareness month! Today, I had the opportunity to appear on the Tampa Reads segment of Fox 13 in Tampa with anchor Linda Hurtado! I was able to share my breast cancer story with a bit about science, about my personal story, and a bit about Talking to My Tatas.

It was a great experience and I hope I convinced some viewers to schedule their mammograms! Shout out to Linda Hurtado, Lisa Emerson, and the rest of Fox 13 News Team!

Get Out And VOTE! So Many Lives Depend On It!

It’s day 25 of National Breast Cancer Awareness Month! Elections are coming up November 8, but many states, including Tennessee, provide opportunities for early voting. I voted today, and I have the sticker to prove it! We all know that voting is a right that was hard won, and YOUR VOTE MATTERS! It matters especially in local and state elections where you choose the candidates that will represent you in everyday matters.

See my sticker??!!

This is true for many issues, including health. As a breast cancer survivor and advocate, I lend my vote and my voice to support policies that help with health equity and equality, screening access and affordability, affordable quality cancer care for everyone no matter where you live, no matter your income, no matter your race, ethnicity, gender identity, ability or disability—EVERYONE deserves a fair and just opportunity to be as healthy as possible.

What sorts of legislation is on the line for breast cancer? The Metastatic Breast Cancer Access to Care Act is “a bill to amend title II of the Social Security Act to eliminate the waiting periods for disability insurance benefits and Medicare coverage for individuals with metastatic breast cancer and for other purposes.” That means that people living with MBC will be able to get the financial assistance they need immediately without the barrier of long waiting periods.

Another important piece of legislation is the Triple-Negative Breast Cancer Research and Education Act of 2021 (Introduced in 2021). “This bill requires research and education activities related to triple-negative breast cancer. The cells of these breast cancers are negative for estrogen receptors, progesterone receptors, and excess HER2 protein, so they do not respond to hormonal therapy medicines or medicines that target the HER2 protein receptors. Specifically, the National Institutes of Health must conduct and support research into the disease. Additionally, the Centers for Disease Control and Prevention and the Health Resources and Services Administration must develop information about triple-negative breast cancer, including information regarding the elevated risk for minority women, for the public and for health care providers.” This is so important given the aggressive nature of the triple negative breast cancer subtype.

These are just two examples of legislation at the national level (you can find information about other important legislation for breast cancer here). Check your state legislature’s website for pending legislation specific for your state. Let your elected officials know you support legislation that helps breast cancer patients, survivors, caregivers, and the general public. And remember to VOTE! Check out this site for dates and details for your district.

I’m going to be on TV!!!

It’s day 23 of National Breast Cancer Awareness Month! I skipped a few days due to lack of spoons (see my previous post about spoon theory and chronic illness), but I have some extras today and am excited at the prospect of bringing my message to folks in Tampa, Florida, and beyond!

Photo Source Here.

My amazing Literary Agent, Barbara Rosenberg, put me in touch with Linda Hurtado, an award-winning news anchor by day who writes heart stopping thrillers as Linda Bond (and I totally recommend checking out her books!). Linda then invited me to appear on her live show for Breast Cancer Awareness Month! It’s scheduled for Wednesday, October 26, at 12:00 pm EST for her Tampa Bay Reads segment. I’ll be talking about breast cancer from both a patient and research perspective, talking about the book, and hopefully convincing viewers to schedule their mammograms!

This will be my first television appearance and I’m both excited and a little nervous, but I have faith in Linda and I’ll just be prepared to be poised but still be myself as I share my story and hopefully some more information about breast cancer that the public needs to know.

Super grateful for the opportunity and hope it helps me make a difference! Wish me luck!

I’ll be sure to post the link in a future blog post!

A Brief History of Tamoxifen

It’s Day 16 of National Breast Cancer Awareness Month! Today’s topic will cover one of the oldest targeted breast cancer drugs developed that is still used in the clinic today—tamoxifen. I’ve been taking it for 3 1/2 years, and millions of other breast cancer survivors with ER+ breast cancer have taken this drug as part of their treatments to prevent recurrence. But how was it discovered? How does it work?

Image Source Here.

Like many scientific discoveries, the discovery of tamoxifen was an accident. ICI46,474, later named tamoxifen, was first synthesized in 1966 by scientists working for a company that would become AstraZeneca. The goal of the project was to find a new chemical compound that could be made into a birth control drug. Laboratory studies were promising, but they found it didn’t work as a form of contraception in humans. This could have been the end of the story for tamoxifen, but one of the members of the team thought it might work as a breast cancer drug. In 1971, tamoxifen was tested in a clinical trial conducted in the UK on “late or recurrent carcinoma of the breast.” Thankfully, it worked!

Photo Source Here.

How does it work? Since it started out as a candidate contraceptive, it makes sense that it was designed to block estrogen, a female hormone that helps prepare the uterus and uterine lining for pregnancy. It is in a class of drugs known as Selective Estrogen Receptor Modulators (SERMs), which are compounds that compete with the hormone estrogen for binding to its receptor. Normally, when estrogen binds to its receptor in the body, it triggers processes in the cell that make it divide, or produce more cells. This is called proliferation. In cancers with too many estrogen receptors (ER), estrogen in the body makes these cells grow uncontrollably. By binding to estrogen receptors in breast cancer cells, tamoxifen blocks this action and stops breast cancer cells from growing.

Around 70-80% of breast cancers are ER+, meaning that abnormal estrogen receptor activation is a key driver for growth of the breast cancer cells. Tamoxifen was a game changer for women with ER+ disease, reducing the annual breast cancer death rate by 31%. There are other drugs on the market that also block the activity of estrogen or downstream molecules in the estrogen receptor pathway, but tamoxifen remains standard of care for many cases of ER+ breast cancer.

As with any medication, tamoxifen comes with side effects that include: hot flashes, vaginal discharge, nausea, mood swings, fatigue, depression, hair thinning, constipation, loss of libido, dry skin. I experienced hot flashes, vaginal dryness and libido issues, and hair thinning, but they were not as severe as those I experienced with other estrogen blockers (aromatase inhibitors). For me, tamoxifen is a better balance between protection from recurrence and quality of life, but everyone’s physiology and experiences are different.

Be sure to talk to your healthcare providers about any side effects you experience. You don’t have to suffer in silence, and there are options to reduce side effects and improve your quality of life.

Quick Post Before Tomorrow’s More Thank Pink Walk!

It’s day 14 of National Breast Cancer Awareness Month. Whew, a blog post a day is hard, y’all! But I hope these posts have been informative, entertaining, and full of hope. We all need hope. And we all need to be inspired.

That’s what I’m aiming for tomorrow. Between the pandemic and other turmoil in the world, it’s been over 4 years since I’ve done an in-person race/walk event. I still fundraised and still kept momentum going, but there is just something about seeing a sea of supporters – people with breast cancer, survivors, caregivers, loved ones, and everyone who shows up to raise money and shine a light on this awful disease!

There’s nothing quite like it.

I’ve seen beautiful bald women and women with gorgeous scarves, women with short and long hair spray painted pink, women who’ve traded illness for the graceful bodies of athletes, women with curves for DAYS rocking it, Black, Brown, White, Asian, Indigenous, gay and all the other letters of the alphabet mafia, old, young, and men who’ve also endured this horrible disease and stand in solidarity, not to be forgotten. It’s beautiful. It’s inspiring. It gives me the will to keep going!

Please, keep going!

I walk in memory of my cousin Sherri Killian, taken from us too soon by breast cancer, my uncle Jack, who we lost to cancer, and in honor of my mother, Carol Brantley, survivor. I walk in honor of my bestie Pam Jasper, and my friends Sue Daugherty Draughn, Linda Horton, Janet Piper, Karen Pugh, Tanisha Jones, and so many others who are more private about their cancer stories. So many family members, friends, colleagues, and acquaintances have been touched by cancer. We all know someone.

Sometimes we are that someone.

I walk for you. I may not know you personally, but we are connected. I work for you. I will not rest. If I can help one person, it is worth it. We fight cancer by holding one another up, celebrating victories, and witnessing and remembering those who leave us too soon. We fight.

Post-surgery Check In

It’s day 13 of National Breast Cancer Awareness Month! Today, I’m taking a break from the usual programming to talk about my breast reconstruction journey, which I hope is (finally) over. I had the misconception that breast reconstruction was relatively simple, one or two procedures and done!

Image Source Here. Also has information about different types of reconstruction!

Yeah, that was before I got breast cancer. Oncoplastic reconstruction (lumpectomy followed by reduction and lift) was a one and done, as is (or can be) aesthetic flat closure (going flat). But building new breast(s) after mastectomy is complex and involves multiple surgeries/procedures to achieve symmetry and an aesthetically pleasing result. That’s where I’m at in the process.

I talk about this in Talking to My Tatas, and include pictures of where I was in the process as of 2021, but it might be useful to include a timeline and description of the various procedures I’ve had. Everyone’s reconstruction process is unique and tailored, but it should give you an idea of how involved the process can be and often is for people who’ve been diagnosed with breast cancer.

June 2018 – Tumor removal from left breast by lumpectomy and oncoplastic reconstruction

September 2018 – Radiation therapy on left breast

February 2020 – Diagnosed with residual disease in the left breast (at the beginning of the Covid-19 pandemic)

May 2020 – Unilateral mastectomy to remove left breast and to implant expander

(Involved several intervening procedures like 3X saline fills for expander and physical therapy to regain mobility after mastectomy, which was compounded by radiation damage to the skin over my left breast and breast tissue)

November 2020 – DUG flap reconstruction (grafting of thigh and muscle/skin tissue from right thigh to build foundation of left breast plus mastopexy (reduction and lift) on right breast

(Required lots of at home massage therapy on irradiated tissue to soften it)

February 2021 – Liposuction and fat grafting into left breast + more tweaking on the right breast

(Required lots of at home massage therapy on irradiated tissue to soften it)

July 2021 – Liposuction and fat grafting into left breast

(Required lots of at home massage therapy on irradiated tissue to soften it)

December 2021 – Liposuction and fat grafting into left breast and scar revision on right breast

(Required lots of at home massage therapy on irradiated tissue to soften it)

October 2022 – Liposuction and fat grafting into left breast and minor scar revision on right breast

Image Source Here. Also has information on thigh flap reconstruction procedures.

That’s seven procedures, not counting biopsies and a lumpectomy from 2016 to remove a benign papilloma, in two years since residual disease detection. It’s a LOT! I count myself lucky to have a brilliant surgeon who has worked with me at my pace to get symmetry between a mostly natural right breast and reconstructed left breast, which is no easy task. And I have a great support system. But it’s a LOT. Each surgery involves recovery from anesthesia, incisions, bruises a plenty (lipo is brutal) and the mental and emotional impacts (which included depression and hypervigilance that made me feral). That required therapy, another part of the process.

Is it worth it? For me, the answer is yes. I’m almost back together and beyond amazed and pleased with how I look and feel. I am whole. Not the same, never the same, but whole. It’s a process. Remember that when you’re checking in with your survivor friends who may be waiting for follow-up procedures, tattoos or surgical nipple-building procedures, trimming of excess skin around incision areas, etc. It’s a process. Be kind. If you’re a survivor in the thick of reconstruction, remember to be kind to yourself and that YOU ARE WORTH IT!

Breast Cancer and the LGBTQIA+ Community

It’s day 9 of National Breast Cancer Awareness Month! Today, let’s cover breast cancer and how it affects the LGBTQIA+ Community—Lesbian Gay Bisexual Trans Queer/Questioning Intersex Asexual Plus other gender identities outside of Cis Heterosexual (Straight). Cancer doesn’t discriminate, but people, particularly those in power, can and do. Fortunately, there are resources available to help people in these communities navigate the healthcare system, including cancer care. My focus is on breast cancer, but some of the resources provided in the list below are more general and include multiple types of cancer care.

Photo Source Deposit Photos.

LGBTQIA+ people often experience discomfort and discrimination during healthcare encounters (and in the current political climate, in their communities and at the hands of politicians who challenge their very right to exist), which may account for reduced odds of receiving annual mammography screenings among some members of the community. This is especially true for trans persons who experience difficulty finding providers who understand their unique needs and who can or will perform appropriate screenings (e.g. breast and pelvic exams for trans men, prostate exams for trans women). One glaring example from my neck of the woods is a recent attack on Vanderbilt University Medical Center’s Transgender Clinic by Republican state legislators. Early detection is key to a positive outcome when it comes to cancer, and anything that creates a barrier to seeking and receiving essential health screenings, including bigotry, can cause unnecessary pain, suffering, and death.

LGBTQ populations have the highest reported rates of tobacco and alcohol use compared to non-LGBTQ populations, which increases cancer risk and correlates with a disproportionate number of LGBTQ individuals living with cancers, including anal, breast, cervical, colorectal, endometrial, lung, and prostate (click here for reference). The intersection of identities (race/ethnicity, disability, cultural) and socioeconomic status compounds inequities in care and screening and disparities in survival and quality of care and life (click here for reference). Clearly, there is need for accessible and tailored cancer care for LGBTQIA+ populations in every location. The same issues with insurance coverage, transportation and accessibility, and availability of care that plague urban and rural communities, respectively, still apply.

What’s available now? There are several resources to help LGBTQIA+ persons with cancer screenings and cancer care. Not enough, but the ones in place are a great start:

Cancer considerations for LGBTQIA+, including checklists and guides for communicating your needs and concerns to your healthcare providers: https://www.accc-cancer.org/docs/documents/oncology-issues/articles/2019/nd19/nd19-cancer-care-considerations-for-sexual-and-gender-minority-patients.pdf?sfvrsn=d116445f_19

Resource lists curated by Cancer.Net: https://www.cancer.net/coping-with-cancer/finding-social-support-and-information/resources-lgbtq-people-with-cancer

Support provided from CancerCare.org: https://www.cancercare.org/tagged/lgbtq+

The National LGBTQ Cancer Project: https://www.lgbtcancer.org/

The National LGBT Cancer Network: https://cancer-network.org/

FORCE (Facing Our Risk of Cancer Empowered) for Hereditary Cancer: https://www.facingourrisk.org/portal/lgbtq

The National Coalition for LGBTQ Health: https://healthlgbtq.org/

Transgender Health Resources: https://www.glma.org/index.cfm?fuseaction=Page.viewPage&pageId=948&grandparentID=534&parentID=938

Transgender Patient Services from the Human Rights Campaign: https://www.thehrcfoundation.org/professional-resources/transgender-patient-services-support-resources-for-providers-and-hospital-administrators

Got any additional resources to add to my list? Please let me know! Knowledge is power, and everyone has the right to equitable and just healthcare!

Screw The Woo Woo! Avoiding Harmful “Alternative Treatment” Scams

It’s Day 7 of National Breast Cancer Awareness Month! Being on the receiving end of a breast cancer diagnosis is terrifying. Believe me, I’ve been there, done that, and have the internal and external scars to prove it. Navigating the healthcare system to find someone with answers who can tell you what type of breast cancer you have and how best to treat it can be a challenge. And standard of care treatments like chemotherapy and radiation cause major anxiety due to their side effects. It is tempting to look for treatments that will work without side effects.

Scammers prey upon anxiety, fear, and desperation to peddle “alternative treatments” that have not been clinically tested and for which there is no evidence to support anti-cancer properties. These so-called treatments do nothing to stop the cancer from growing and do not kill cancer cells in the body. Some may actually cause harm. And the costs are astronomical.

Quick note: This post is about “Alternative Medicine,” not “Complementary Alternative Medicine.” They may sound alike, but they are two very different things. “Complementary Alternative Therapies” are used in addition to standard of care cancer treatments and are monitored by healthcare professionals. These may include mindfulness meditation, yoga, and acupuncture among others. Spiritual practices may also be complementary alternative therapy approaches. These are fine to try so long as you let your healthcare provider know about them and as long as you take your standard of care medicines or treatments.

By contrast, “Alternative Medicine” scam artists actively discourage conventional standard of care treatments in favor of their woo woo treatments. I’ve covered a variety of woo woo scams on this blog, but when I found this one, I was livid. There are actual “clinics” in Mexico that offer alternative therapies, charge exorbitant prices for them, and cause harm and quite possibly death to desperate cancer patients.

***Note: this is not a dig at legitimate hospitals and cancer treatment centers located in Mexico***

I refuse to link these so-called practices, but they go by names like “Oasis of Hope,” specializing in “Holistic and Alternative Cancer Treatment” like oxygenation therapy (doesn’t do a thing for cancer), hyperthermia (can help other cancer treatments like radiation and chemo work better but isn’t meant to be used alone), vitamins and supplements (see previous post), ozone autohemotherapy (which is not approved by the FDA and is classified as a toxic gas with no known useful medical application in specific, adjunctive, or preventive therapy) and “natural cancer treatments” that they do not define but their white papers (not peer reviewed or published in scientific journals) mention intravenous curcumin (covered in a previous post) and vitamin K (see previous post on antioxidant and supplement therapies). Spoiler alert: these “therapies” have not been shown to be effective at treating breast cancer in clinical trials. Worse, these are on a subpage marketed to people with stage IV breast cancer, some of the most vulnerable people living with cancer. And they do not accept insurance, being located in Tijuana, Mexico, so patients must pay out-of-pocket. For Oasis of Hope, costs range from $19,000 for 18 days of treatment to $29,950 for an “enhanced” experience that lasts 20 days.

Another dubious clinic in Tijuana called “Immunity Therapy Center” is run by a man named Dr. Bautista. He, too, offers alternative treatments much like those from Oasis of Hope in addition to bovine and shark cartilage (not FDA approved for cancer treatment), magna rays (whatever that’s supposed to mean), and “detox,” something your liver does for you normally so you really don’t need specialized chelators and vitamin supplements to do it. As for the immune therapy, the dendritic cell vaccines described on the website are being testing in clinical trials for breast cancer in the United States, but they are not currently approved and we don’t yet know if they really work. That’s another insidious way scammer deceive cancer patients – they use jargon and buzz words from legitimate medical treatments to lend themselves false credibility.

These types of “clinics” are everywhere, not just Mexico. Using a simple Google search, I found them in Arizona, Minnesota, California, Tennessee, the United Kingdom, Georgia, and Illinois on the first page. Many were marked as ads, which is another red flag.

So how do you know if you’re receiving information about legitimate cancer treatments versus scams? This handy video guide from the National Cancer Institute is a great place to start. First and foremost, talk to your doctors and healthcare providers, who should be licensed, board certified, and have expertise in breast cancer diagnosis and treatment. And remember, if something sounds too good to be true, it probably is.