HRT and Quality of Life

HRT and Quality of Life

My mother is not perimenopausal, but her recent experience highlights what happens to so many women in their menopausal journeys: their quality of life is overlooked, often out of fear and due to misinformation.

The following is not an endorsement of hormone replacement therapy* (HRT). Nor is it medical advice. It is my point of view on the importance of choice, the need for better research, and why each of us have to be informed and advocate for the care we deserve.

It is above all, a story I want to share about how proud I am of my very brave mom.

Proactive About Healthspan

My mother has always been ahead of her time. She’s never shied away from a challenge or from advocating for her needs. Particularly when it comes to her health. She is young beyond her years. And intends to be here for a very long time. She has always proactively worked to ensure her healthspan. I have vivid memories of doing Jane Fonda workouts together in our living room. Those workouts were on vinyl.

This proactivity has not only kept her active and healthy, it has arguably saved her life.

Breast Screening Guidelines

The U.S. Preventative Services Task Force (USPSTF) now recommends mammography every 2 years for women ages 40-74. An improvement, but other organizations recommend that screening should be done annually. The task force still does not have sufficient studies to make recommendations for women ages 75 and older. You can find current guideline information here.

There’s also a school of thought that screening beyond the age of 74 has a risk over diagnosis. Meaning where a small cancer is found, but it would grow at a slow rate. So best not to find it in the first place. Implying that any treatment may be too aggressive. If the woman has an underlying health condition or is frail, she could have a hard time recovering from surgery or a treatment like radiation or chemotherapy.

Dismissed and Infantilized

In the context of my mother, it’s hard not to see the above guidelines and concerns of over diagnosis as anything but dismissive and infantilizing.

If my mother had followed the guidelines her cancer would have gone undetected. Would it have become problematic? Life threatening? We’ll never know. What I can tell you unequivocally: she would always want to know and have the choice.

Informed and Insistent

My mother has insisted on annual breast screening for many years. She has extremely dense breasts which put you at a higher risk of developing breast cancer. Higher than if you have a first-degree relative with breast cancer. She has also taken hormone therapy for years to manage menopausal symptoms. The data is controversial, and without better research, my mother considers HRT a risk factor. She determined long ago, and continues to believe, that the benefits of HRT outweigh the risks – for her. She also believes supplemental screening is a good choice. My mother knows of too many engaged in, or who have lost, battles with cancers that weren’t detected at an early stage. At 76 years of age, my mother is just getting started. The thought of rolling the dice because she’s too old is not just ridiculous, it’s offensive.

Fortunately, she has a GP who agrees.

A Routine Follow Up

A routine screening mammogram prompted my mother’s GP to recommend a 3D mammogram. This led to a biopsy. 10 days later my mother went in to see her GP for something else and the GP said: “I have the results of your biopsy. You have breast cancer.”

“Oh.” Pause. “What are my options?”

The GP said my mother could have a:

  • Lumpectomy and radiation treatment, or
  • A mastectomy, single or double.

Another pause, “I want a double mastectomy, with reconstruction if possible.”

“Oh. That was fast. Are you sure?”

“Yes.”

“Okay, I’ll make a referral to a breast surgical oncologist.”

No Shortage of Strong Opinions

My mother is decisive, especially in the face of adversity. That doesn’t mean she wasn’t scared. On the contrary, she was very scared. And when she’s scared, rather than bury her head in the sand, she takes action.

At no point did anyone on her care team suggest that she had been over diagnosed. Nor did they try to talk her out of treatment or surgery. They did ask her to confirm her choice. Then they respected that she is a well informed, vibrant member of her community, with a lot left to contribute. And that she did not want to chance her cancer progressing.

Some of her friends were not as supportive and aghast that she would elect to have her breasts removed. One termed her choice as ‘inappropriate’. There was no shortage of strong opinions. And although well-meaning, the truth is that most strong opinions have one thing in common, fear. They’re also often short on facts.

Despite protests from some of her closet friends, she remained steadfast. “I don’t want to spend the rest of my life worrying that the cancer is back. I want it, and my breasts, gone.”

HRT and Quality of Life

My mother takes hormone therapy and has for years to manage unpleasant, and at times significant symptoms. She will tell you she is a shell of a human being without hormone therapy.

At the appointment where my mother learned she has breast cancer and decided on a double mastectomy, her doctor said: “You’ll have to stop hormone therapy after your surgery.” My mother was not surprised to hear this because her doctor does not agree that my mother should be using hormone therapy. My mother’s GP is a breast cancer survivor.  And my mother had a TIA, also known as mini stroke, 16 years ago. After the episode, a different doctor said that all hormone therapy had to be stopped. She did stop. And she was miserable.

At a bi-annual appointment with her neurologist following her TIA, my mother had a hot flash. A bad one. Her neurologist stopped mid-sentence to ask if she was okay. She said, “It’s just a hot flash.” He said:

“That was ‘just a hot flash’!? Do these happen often?”

“Yes.”

“Do you have other symptoms?”

“Yes.”

Quality of Life Matters

As she started to go through the list, he stopped her and said, “Quality of life matters.” He went on to explain that transdermal estrogen does not increase your risk of stroke like oral estrogen. He told my mother she should start taking menopausal hormone therapy (MHT) again.” Relieved, she did so immediately. My mother is still under the same neurologist’s care. And he continues to support her use of hormone therapy, particularly as the carotid artery blockage suspected to be the cause of her TIA is now gone.

My mother’s GP does not agree, but she does believe in shared decision making.

The Menopause Society’s 2022 hormone therapy position statement states: “There is no general rule for stopping systemic hormone therapy in a woman aged 65 years. For otherwise healthy women with persistent VMS, continuing hormone therapy beyond age 65 years is a reasonable option with appropriate counseling, regular assessment of risks and benefits, and shared decision-making.” Further, “Controversy exists regarding how long hormone therapy may safely be used and when it should be discontinued.” And “If hormone therapy is being used for prevention of osteoporosis, it is important to remember that protection against bone density loss and fracture prevention is lost rapidly with discontinuation.”

My mother listened to her GPs point of view but needed more information to make her decision about continuing with hormone therapy.

Your Cancer Is Not Hormone +

When my mother met with her breast surgical oncologist, she asked her if she could continue to take HRT. “Yes, you can. Your cancer is not hormone positive. Tests were performed on your tumor to determine if estrogen and progesterone hormones stimulated the growth of your cancer. Both your estrogen receptor and progesterone receptor status are negative. ” Good news.

The plastic surgeon who was to perform the reconstruction, gave my mother the same facts.

The information she needed. Decisive. Resolute. Grateful that she had been proactive, and the cancer had been caught early. My mother was confident about her decision. And then she got a call from her gynecologist’s office.

The nurse she spoke to was, in my mother’s words, frantic.

“You have to stop all hormones today!”

“Today?”

“Yes! Today! You cannot continue to take hormones!”

“Why?”

“You could develop a blood clot!”

Wait. What?

It wasn’t only the mastectomy decision that brought out strong opinions and fear.

Why is HRT So Controversial?

My mother knows that there is an increased risk for blood clots with oral estrogen that varies depending on a woman’s age. But there is no increased risk with transdermal estrogen, which my mother takes, along with progesterone. So why the panic?

The WHI

In 2002 the flawed Women’s Health Initiative (WHI) inaccurately linked estrogen to breast cancer, causing a global scare and halting HRT use overnight. Estimates are that 80% of women stopped. The inaccuracies from that study have been walked back, but the fear and misinformation around HRT persist.

The WHI’s flawed conclusions have made consensus among medical professionals challenging. And a lack of new research means that the data we do have is muddy. For example:

  • While there are known differences between progesterone and progestins, they are classified as one category or progestogens.
  • The WHI studied conjugated equine estrogen (CEE), a formulation that’s not commonly prescribed today. However the WHI results still inform the medical world’s position on all types of estrogen.
  • Systemic and local estrogen are lumped into the same risk category. Despite lobbying efforts by groups like The Menopause Society, the FDA still insists that local or vaginal estrogen, which does not carry the same risks as systemic estrogen have the same black box warning label. Causing many to forgo a safe and effective treatment for genitourinary syndrome of menopause. A condition that will impact up to 85% of menopausal women that can have significant and permanent effects on a woman’s quality of life.

Anyone Would Be Shaken

Even my mother, who is confident and well informed, was shaken by the panicked call from her gynecologist’s office. Later that day, another well-meaning friend told my mother that the reason she got breast cancer was because of the hormones she was taking. Her friend said that she herself was going to stop taking hormones as a result.

Wait. What?

Concerned and feeling the seeds of doubt, my mother called her oncologist’s office. Three hours later he returned her call and said: “You can continue to take hormones. Your cancer is not hormone positive.”

Women Can Handle Risk

Yes, there are risks. There are always risks. Whether you’re taking hormones, black cohosh, or ibuprofen. Everything has risks. And I don’t understand why, especially when it comes to HRT, there is an outsized fear and the persistent notion that women can’t, or perhaps shouldn’t, make their own decisions.

This excerpt from Dr. Jen Gunter’s Menopause Manifesto perfectly articulates this frustration:

“It feels as if we overemphasize risks related to MHT, and to me it seems as if it even goes beyond the concept of infantilizing women and their decision-making skills. Medications for erectile dysfunction cause blindness for 3 out of every 100,000 men who take them, and yet society trusts men to decide if those risks are worth it. Treating erectile dysfunction may be helpful for a man’s well-being, but it will not prevent him form getting osteoporosis, help with his sleep, or treat mild depression. Estrogen, on the other hand – which offers more than quality-of-life improvements – is viewed as risky.”

There are no shortage of differing opinions ranging from HRT will kill you to HRT will save your life. As always, the truth lies somewhere in the middle. And as with most situations, the truth has many versions. Meaning, your unique medical profile determines your truth when it comes to whether hormone therapy is right for you.

So Many Questions Remain

My mother is recovering well. Vibrant. Right back to leading a full and impactful life. I am very proud. And terribly relieved. I am also plagued with so many questions:

  • How do we get medical providers to the same level of understanding when it comes to the known risks and benefits of HRT?
  • How do we get better research on and understanding of HRT so that women are given the support and care they deserve?
  • What about women battling and surviving cancer that is hormone positive? What about their quality of life?
  • What about women who are thrust into treatment-induced menopause that are not offered the recommended standard of care?

  • Who is the medical quarterback when it comes to HRT? In my mother’s case, she decided to continue with hormone therapy based on input from her GP, Neurologist, Breast Surgical Oncologist, Plastic Surgeon, and her Oncologist. What if she hadn’t proactively asked her surgeons and oncologist? Would they have brought it up? Without their input, would she have acquiesced to her GPs preference and her gynecologist’s panic?
  • Will HRT have negative consequences for my mother? Maybe.
  • Will stopping HTR have negative consequences for my mother? Absolutely.

Sadly, when it comes to cancer and menopausal symptoms, many women are left to struggle. Often needlessly. For more on cancer, HRT and quality of life, check out these podcast episodes from Menopause and Cancer, and The Peter Attia Drive:

We Should Always Have a Choice

My mother says she’s lucky. I say she’s proactive and understands how to self-advocate. She also expects that decisions about her health should always be her choice based on the available facts. And that is one of our biggest problems. When it comes to women’s health, particularly in midlife and beyond, we don’t have enough facts. It’s up to each of us to get informed, ask questions, and advocate for better. Better care and support. More research. Consistent acknowledgement that quality of life matters. And choice. We should always have a choice.

*Hormone replacement therapy (HRT) is also referred to as menopausal hormone therapy (MHT) and hormone therapy (HT).

Disclaimer

The intent of this information is to provide the reader with knowledge to support more efficient and effective communication with their medical providers. This information is not intended as medical advice.