As told to Erica Rimlinger

I can’t remember a time when I didn’t have the fear. My mother was diagnosed with breast cancer when I was a senior in high school, and I was her caretaker until she passed away when I was 27.

My mom’s genetic tests showed she carried the BRCA gene, which I knew meant I might carry this genetic legacy too. But I delayed getting my own genetic test because I wanted to have more children. I wasn’t ready to have my breasts, uterus and ovaries removed if I carried the gene — and that would have been next.

Fortunately, I had a doctor who understood both my fear and my reluctance to get tested right away but was willing to follow a course of action that assumed I had the gene. So, I got early annual mammograms and pelvic ultrasounds starting at age 27.

After I had my last son, my OB-GYN, who was a breast cancer survivor herself, reminded me it was time to get the genetic testing. So, I finally had it done in October 2019, around the same time I had my annual mammogram. The mammogram results were normal, but the genetic test results would take much longer to return.

Unfortunately, three months later — before I had the results — I felt four distinct breast lumps while on vacation with my husband. A biopsy confirmed that these were four tumors that later turned out to be triple negative breast cancer. It was then that I finally got the results of the genetic testing: As I feared, I did have the BRCA gene.

I began chemotherapy as the pandemic shut down the world around me. Nobody could go into treatments or appointments with me: I walked into battle alone against this lifelong enemy. I started with a course of tough chemotherapy, then scheduled a double mastectomy and reconstruction.

Ten months later, tests in October 2020 showed that I’d had a complete response to chemotherapy: My tumors were gone by the time I had my mastectomy. After my mastectomy, my pathology reports declared me cancer-free. I was so relieved.

But I wouldn’t have been relieved if I, or my surgeon, had been paying closer attention. At the bottom of my post-mastectomy pathology report filled with medical terms, unfamiliar abbreviations and numbers that meant little to me, there was a red flag no one noticed. It was a single line of text that read, “No clips were found.”

During biopsies, doctors often place small metal clips in your tissue to mark the locations of the tumors. These clips show up on future scans to monitor whether the tumors are growing or shrinking during chemo. They also show the doctors where to remove cancerous tissue during surgery.

To make sure they got all the tissue, my doctor should have taken out all the clips during my mastectomy, but none were found in the tissue they removed. My tumors, which had grown close enough to my skin’s surface for me to feel as lumps, may have shrunk away during chemo, but the tissue they were in remained in my body.

In March 2021, four lumps re-grew in the exact same spots as my tumors, in the tissue of my chest wall. “It’s too soon for a recurrence,” my doctor tried to reassure me. “It’s probably just scar tissue.”

But it wasn’t.

After more chemotherapy and a second surgery to remove the new lumps, a radiologist noted that the pathology reports from my first two surgeries didn’t mention finding any clips. Further imaging discovered the three clips in my chest wall. They had been there for almost an entire year. My surgeon — who left the clips in the first place — had to perform a third surgery to find and remove them before I could even begin radiation, which delayed my treatment.

I’d assumed the double mastectomy had made me safe against a recurrence, but my tumors were always along the chest wall rather than in my breasts. I’m thankful for the radiologist who re-read my pathology reports and spoke up.

After they removed the clips, I was able to finally start proton therapy radiation, which is a more precise type of radiation. Unfortunately, all radiation has side effects, and I ended up with a recurring infection that nearly killed me. I was in and out of the hospital for most of 2022. I eventually had to have my breast implants removed in an emergency surgery and returned home on IV antibiotics. During one of my hospitalizations, we learned my cancer had spread to my lungs, meaning I now had stage 4 cancer, which later spread even farther to my liver and spine.

I was at my lowest point physically. I was so sick and had lost so much weight I couldn’t even drive my son to school. But I knew I had to regain my strength and fight back. I began to rebuild my stamina with high doses of vitamin C IV infusions. Also, my infectious disease doctor recommended hyperbaric oxygen therapy, a treatment that was developed for diabetic and burn patients to promote wound healing. Now, it’s also used for radiation patients who develop infections that can’t be cleared with antibiotics due to poor blood flow. I spent three hours every day for three months in treatment. The therapy reportedly stimulates stem cells to grow new blood vessels, which helps to increase blood flow, and I noticed a huge improvement. My chest wall, which had felt like a rock for months, had its softness and color return. I could lift my arm over my head again.

Now, I’ve started cancer treatment with a new drug, called a PARP inhibitor. Although I’m in treatment, I feel the healthiest I’ve felt in a long time. I’ll stay in treatment for as long as it works. And so far, it’s working.

I’m not sharing my story to blame or scare anyone. The fact is, doctors do their best, but they’re human. I want women to know healthcare works best when, as patients, we learn as much as we can about our treatment. That lets us be the best partners we can be to our medical team. Because it’s your life on the line, nobody will ever be a better advocate for you than you.

I’ll never know if I would still be in remission to this day if they had gotten all the tissue — and the clips — during the very first surgery. I can’t go back in time and ask the question, “Weren’t the clips supposed to be removed?” Even if I’d read that line in the report, I probably wouldn’t have understood its importance. The people who were supposed to know didn’t notice either.

But maybe after hearing this story, a woman out there will read her pathology report just a little bit closer. Maybe she’ll be encouraged to have better conversations with her healthcare providers — maybe she’ll know to ask about the clips.

This educational resource was created with support from Daiichi Sankyo, Hologic and Merck.

Have a Real Women, Real Stories of your own you want to share? Let us know.

Our Real Women, Real Stories are the authentic experiences of real-life women. The views, opinions and experiences shared in these stories are not endorsed by HealthyWomen and do not necessarily reflect the official policy or position of HealthyWomen.

Period stigma may just sound like something unfair but actually, there are harmful consequences associated with it. 

And because it can come about in a variety of ways, many of which lead to a lower quality of life, illnesses, and worse, these societal issues are widespread and often debilitating.

This shouldn’t be the case when in fact, period stigma is merely a product of myths, miscommunication, misconceptions, and misinformation. 

It doesn’t serve a useful purpose at all but rather, harms those who suffer because of it.

After all, menstruation is a normal, natural, and healthy part of the reproductive cycle.

So, let’s talk about period stigma, how it affects some menstruating women, and how everyone could work towards making a change. 

Period stigma is a broad term for the discrimination faced by those who menstruate. And there are many different ways that this discrimination can read its ugly head.

To name a few: lack of access to sanitation supplies, financial difficulties, reduced education and less job opportunities, verbal shaming such as using the words “dirty” or “unclean”, and women feeling embarrassed or ashamed of their period. 

In the bigger scheme of things however, how does period stigma affect the women who menstruate?

The harmful effects of period stigma

Women feeling embarrassed and ashamed, being called names because of their period, and not having proper access to menstrual products is only the tip of the iceberg. 

There are so many profoundly harmful effects of period stigma that can change the trajectory of people’s lives for the worse. 

Here are some of the harmful effects of period stigma:

1. Implications due to a lack of education

Did you know that 1 in 10 girls across Africa miss school during their period (10-20% of school days)? This can carry a number of negative consequences. 

For example, many school-going girls might decide to drop out of school altogether because they’re falling behind and unable to get the adequate education they need with so many missed days. 

This could lead to a greater risk of them becoming child brides and/or falling pregnant. 

Not just that, but it’s highly likely that they’ll struggle to find work because of their lower levels of education. 

The result is often life-threatening economic issues and hardships, and possibly the cycle repeating itself. 

2. Unsafe & unsanitary living conditions aka period poverty

In some developing countries, there is a lack of or no access to adequate toilets or clean water. And while this affects everyone involved, girls and women have an even bigger burden to carry as they’re unable to manage their monthly period in a safe and hygienic way. 

Additionally, many of these developing countries lack a reliable source of supplies and solutions, making it difficult for girls and women to leave home for school or work. This can have major implications on one’s mental and physical health, among other things.

But the thing is, period poverty exists in both developing and developed countries. For many, choosing between food or menstrual products is a reality. And for others, access to menstrual hygiene products and facilities is not even an option. 

In fact, the World Bank estimates that at least 500 million women and girls across the globe don’t have access to things they need to manage their menstruation.  

The UN Women added to the consequences of period poverty with their statistics. It was found that, in 2019, 1.25 billion women and girls had no access to a safe, private toilet, and 526 million did not have a toilet at all. 

Truth be told, this is a human rights issue, resulting in a lack of dignity and the removal of the right to bodily autonomy.

3. Medical implications

It’s been estimated that half of women and girls who lack access to period products and women’s health services in some developing countries often have to make use of rags, grass, or paper during menstruation. This itself can be dangerous and can cause infections. 

Additionally, female genital mutilation (FGM) is still rife in some African countries today. This will contribute to the dangers and medical issues associated with not having the adequate products and facilities during menstruation.

And then let’s talk about ancient rituals that take place in some countries. Chhaupadi for example is practiced in some parts of rural Nepal and involves girls and women being shunned to huts sheds during their period because menstruation is seen as “bad luck”. There, they have no access to the things they need, which can lead to a range of health issues as well as physical and psychological hardships.

Despite this however, many people around the world still view things such as menstruation and PMS as a joke, telling girls and women that they’re “moody” because it’s “that time of the month” when in fact, it is a medical issue and a women’s health issue.

4. Body shaming

Period stigma can have a profoundly negative effect on the way in which a girl or woman sees herself. 

For example, this stigma can lead to decreased levels of physical and mental well-being, lower levels of sexual satisfaction and expectations, and make them feel as if they have a lower social status. 

This is only made worse by certain rituals that see menstruation as “dirty” or “unclean”.

Take religion for example. There is a traditional Jewish term called “niddah” which is when a woman sleeps separately from her husband when she has her period. And in Islam, women are seen as “impure” during menstruation and are thus excused from prayers.

And then there are harmful myths that have body shaming effects. One being that some still believe that using a tampon will take away a girl’s virginity. 

5. Shame & embarrassment 

While we just touched on body shaming, there is more to be said here: period shaming. 

In an article written by Valerie Seibert called, Nearly Half of Women Have Experienced ‘Period Shaming’, it mentions that “58 percent of women have felt a sense of embarrassment simply because they were on their period.”

Take period product advertisements for example. Are these adverts a realistic depiction of monthly periods? 

Firstly, not only do the women in these ads look as though they love their period, but the text in menstrual ads often portray themes of secrecy, shame, and purity. 

Even Kotex, a popular brand of female hygiene products, once said in their 2013 ad, “Don’t worry. Even your biggest crush won’t know you’re on your period”. 

Then, of course, girls and women have been socialized to believe that asking for, using, or buying menstrual products is embarrassing and shameful. 

Think about school girls who try to hide their pads or tampons by putting them up their sleeve before leaving class to visit the restroom. 

Or what about women at work who feel as though they have to do the same, or feel some form of embarrassment when they take a small bag with them to the bathroom. 

The thing about period shaming though, is that it prevents open conversations at school, at home, and in the media. This, in turn, is preventing acceptance and creating more harm for a bodily function that is healthy and necessary.

6. Tampon tax

Then of course, one should consider something called “tampon tax”. In some countries, period products are seen as a luxury or a non-essential item for VAT purposes. FYI: it’s not! For that reason, menstrual products are even more expensive than they should be. 

And while many countries have now abolished tampon tax, it is still “a thing” in some countries. 

Why? Well, one reason is that VAT can be an important source of revenue for governments. Think about that for a minute.

At the end of the day, there’s a lot that can be done to help remove period stigma. 

For one, adequate period education in schools for all genders, open conversations with parents and their children (including their sons), and avoiding code words such as “Aunt Flo”. 

But also, advocating for improved access to menstrual products, better facilities, and better support. 

Everyone can play a role in trying to remove period stigma and to celebrate this life-giving monthly occurrence. 

March is National Sleep Awareness Month.

Sleep … elusive sleep. It’s a much needed, yet somehow complicated part of life, especially if you’re perimenopausal. Luckily, like so many things these days, we have technology to help us figure it out. Enter sleep trackers.

A lot of people use smartwatches to track their sleep. But some people (OK, me) don’t like wearing a smartwatch to bed. It just feels odd — like it should go home to a jewelry box at the end of the day. But if that happened, how would I know my sleep score? How would I feel superior to my partner because of said sleep score? What would I talk about? (OK, these are problems for another time.)

It turns out there are many wrist-free devices out there to help analyze sleep. From an 80s-style headband to a thin mat tucked under the mattress, technology is stepping up its game in the name of good sleep.

If you’ve never tracked your sleep cycle and are wondering what all the fuss is about, sleep trackers can provide important insight on your quality of sleep. If you’re waking up tired but not sure why, a sleep tracker can help you understand what’s going on.

For example, people with sleep apnea may not know that they have it but it’s really dangerous because it causes irregular breathing or can even stop you from breathing while you’re asleep. If left untreated, sleep apnea increases the risk for cardiovascular disease and other serious health conditions.

About 1 in 10 women in the U.S. have sleep apnea. And now there’s a tracker for that: Samsung recently added a sleep apnea detection feature to its health monitor app for the Samsung Galaxy watch. The feature was approved by the FDA in February — a first for the sleep tracking industry and a step forward in awareness for sleep disorders.

Read: The Day After a Bad Day’s Sleep >>

Sleep trackers also can help you and your healthcare provider identify underlying health conditions and lifestyle choices that may have a negative impact on your sleep. In honor of sleep awareness month, here are some unique, wrist-free devices to consider.

If you’ve been on social media lately, you’ve probably seen #attachmentstyle making the rounds. The hashtag has been viewed more than a billion times on TikTok.

So what is attachment style?

Relationship attachment style refers to how people behave in relationships, from expressing intimacy to handling conflict. The term became popular in 1969 when psychologist Mary Ainsworth developed the Strange Situation Procedure (surprisingly not trending on TikTok) to measure attachment between caregiver and child.

Ainsworth’s attachment theory says the emotional bonds we form with our caregivers (usually parents) as babies play a big role in how we behave in relationships as adults. For example, if you had a caretaker who wasn’t attentive to your needs or reliable, you’re more likely to have difficulties in adult relationships.

Therapist Lori Gordon-Michaeli, LCSW, said learning your attachment style can help you better understand the way you tick and how you respond to your partner. “It helps us learn what our needs are and how we can help our partner meet those needs. It also helps us to understand our partner and their approach to the relationship.”

Read: What Are the 5 Love Languages? >>

Gordon said attachment style is driven by the subconscious self rather than the conscious self. “If we know our attachment style, we can navigate a healthy version of interactions. Instead of reacting, we learn to respond in the relationship. A lot of times relationships don’t work because of our attachment styles and a lack of awareness in responses.”

The four attachment styles are:

• Secure
• Anxious
• Avoidant
• Disorganized

The three insecure styles — you guessed them — have negative impacts on relationships. But you can take steps to recognize insecure attachment styles and make changes to help form healthy relationships.

We asked Gordon about the basics behind the 4 attachment styles and what to know if you or your partner has an insecure attachment style.

English

Se proyecta que las mujeres en Estados Unidos pasarán casi
50 años de sus vidas tomando medicamentos con prescripciones. Y el costo de estos medicamentos puede ser dolorosamente alto. De hecho, 4 de cada 10 (el 43%) de mujeres no han podido comprar medicamentos de prescripciones y casi 1 de cada 10 no han podido tomar sus medicamentos tal como se indica en la receta debido a sus costos en algún momento de sus vidas.

No es una sorpresa que las personas tengan dificultades para pagar medicamentos. En 2021, los costos de medicamentos sin reembolso
subieron más del 9% a $633.5 mil millones.

Los costos de medicamentos pueden ser especialmente difíciles para pacientes que deben tomar medicamentos denominados biofármacos y biosimilares porque el costo de estos fármacos puede ser especialmente alto.

Los biofármacos se preparan a partir de células vivientes en vez de a partir de químicos. Actualmente, la mayoría de biofármacos tratan condiciones tales como el cáncer, la diabetes y trastornos autoinmunitarios. Proporcionan opciones valiosas de tratamiento, pero son caros y frecuentemente tienen patentes que están vigentes durante mucho tiempo, lo que significa que la compañía que desarrolló el medicamento es la única que puede comercializarlo y decidir su precio. Aunque solo el
2% de prescripciones en 2021 fueron de medicamentos biológicos, representan casi la mitad (el 46%) de todos los gastos de fármacos ($260 mil millones) en EE.UU.

Los biosimilares, que son copias cercanas de los biofármacos, funcionan de la misma manera, pero cuestan menos. Al igual que los medicamentos genéricos, los tratamientos de biosimilares están disponibles después de que expira la patente de un biofármaco. Usualmente son más baratos que el biofármaco original de marca, que se denomina el producto de referencia, pero todavía pueden ser caros porque su preparación es compleja.

Lee: Conversación sobre la salud:¿Qué son los biosimilares? >>

“Es hora de que todos comprendamos que, en la misma forma en que un medicamento genérico ahorra dinero en lo que se refiere a costos de fármacos, un biosimilar ahorrará dinero en lo que se refiere a costos de medicamentos biológicos”, dijo Lisa Kennedy Sheldon, Ph.D., ANP-BC, AOCNP, CGNC, FAAN, una enfermera oncológica profesional y consultora de enfermería internacional de Dogcove Consulting Group.

Según la
Association for Accessible Medicine [Asociación para medicamentos asequibles] (AAM), un grupo de cabildeo que aboga por biosimilares y medicamentos genéricos, el precio promedio de biosimilares es la mitad del precio (o menos) que los productos de referencia. Otra estimación sugiere que el costo de biosimilares es un tercio menos, en promedio, que sus productos de referencia. Los biosimilares también hacen que los precios de biofármacos bajen debido a la competencia. Consecuentemente, la AAM indica que productos biosimilares ahorraron a pacientes $9.4 mil millones en 2022.

English

Los biosimilares son medicamentos modelados a partir de otro tipo de medicamentos llamados biofármacos. Ambas opciones pueden usarse para tratar una gama de problemas médicos, incluyendo trastornos autoinmunitarios tales como la artritis reumatoide (AR) y algunos tipos de cáncer.

Los biofármacos se preparan a partir de una fuente natural, tal como células vegetales o humanas y los biosimilares se preparan de la misma forma. Para recibir la aprobación de la FDA, se debe demostrar que un biosimilar funciona de la misma forma y con la misma seguridad que el biofármaco en el que se basó su diseño (denominado un producto de referencia).

Preparar un medicamento a partir de materiales vivos es un proceso complejo y largo y el precio de los biofármacos refleja eso. Por ejemplo, los biofármacos que se usan para tratar la AR pueden costar hasta $36,000 al año.

Puesto que los biosimilares se basan en un biofármaco, su preparación es más fácil y barata, lo cual implica que son más baratos para los pacientes. En promedio, los biosimilares cuestan aproximadamente una tercera parte de lo que cuestan los productos de referencia.

Si vives con un trastorno médico que puede manejarse con biofármacos, es posible que biosimilares sean una alternativa más asequible que funcionará igual de bien.

Aquí encontrarás algunas preguntas que puedes hacer a tu proveedor de atención médica (HCP, por sus siglas en inglés) sobre biosimilares.

Este recurso educativo se preparó con el apoyo de Sandoz.

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