Topic: Cancer Survivorship Program for Young Women
Time: Oct 29, 2020 05:30 PM Eastern Time (US and Canada)
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It is almost the end October, "Breast Cancer Awareness Month", and the world is awash with pink, so I thought I would address the "pink elephants in the room" in this blog post. What are the pink elephants in the room and how did I get here to write about them ? Settle in, here is my story...
In early September 2001, I was a young 28 year old newly married physician in my second year of OB/GYN residency in NYC. I'm not sure what came first, the tragedy of 9/11 or me feeling a lump in my right breast, but that month was a blur. I remember thinking "I should probably get this checked out", but frankly I was too busy learning to be a doctor to go to the doctor. So I kept an eye on it. Fast forward 2 months, and I got the dreadful news that my mom, only 54, died suddenly after a short battle with ovarian cancer. Again, I thought,"Hey, you need to check out the little lump", so a few weeks , after a saying goodbye to my young mom, while dealing with the pressures of residency, I had a few of my fellow doctor friends feel the lump. They all said, "Oh, its probably just a little fibroadenoma, you are so young". I popped into to the radiology department and had my colleague do an ultrasound and then a biopsy. I honestly wasn't concerned at all. The week before Christmas, I was at work in the middle of busy prenatal clinic when I got a page from the radiologist, so quickly called her back right in front of my patient. "Sorry Corinne, it's breast cancer". I threw my pager across the room, buried my head in my lap, as my shocked patient, who did not speak English, sat there probably horrified and confused. And so my long journey with breast cancer began. In a frantic rush, I used my doctor connections to get into all the top breast surgeons who specialized in breast cancer in young women in NYC, which was not an easy thing to do 1 week before Christmas. In the end, I decided on a right mastectomy with implant reconstruction. The final diagnosis was estrogen positive invasive lobular and ductal breast cancer, with involvement of one lymph node, making me stage 2. I needed 6 months of chemotherapy and multiple surgeries for reconstruction. Then came years of various hormone therapies, premature menopause, genetic testing issues, fertility issues, multiple other surgeries and more.
Each one of these experiences I will chronicle in their own blog posts at a later date, so stay tuned, but back to the pink elephant! The trauma, and I mean the actual real PTSD that I suffered from being a young woman with breast cancer is counter culture to the rosy feminine pink ribbon world of "Breast Cancer Awareness Month". For many breast cancer survivors, seeing the commercialization and flippant use of the pink ribbon on everything from a milk carton to a pack of batteries is enough to make us see RED not PINK! For the general public the pink ribbons may be a feel good reminder to "check your boobies" or "save the tatas", but to many cancer survivors, it feels like our suffering with breast cancer is being used to sell some retail crap. This phenomenon has an official term , "pink washing". So one of the pink elephants is this pink washing that exists throughout the year . Think before your pink!
The pink elephant has a buddy in the room- and it is the collateral damage and long term survivorship challenges of breast cancer . See, there is another type of "pink washing". It is this false narrative that once you are done with treatment, you are over it, you can move on. In the first year after finishing chemotherapy, I was at a real low point. I was filled with dread for the future, wondering if every ache and pain was mets to my bones, panicked that I would never be a mother, never live past my 30's. But on the outside I looked like a successful "survivor" , my hair had grown back, my new reconstructed breasts looked perky and life was moving on. I had beat it , right? I should be happy! I remember looking at the brochures for the breast cancer walks , with images of women of all ages with big smiles, dressed head to toe in variations of Pepto-Bismol pink and I wanted to vomit. What were they smiling about? The hot flashes? The nightsweats? The loss of their breasts? Their infertility? The recurrence risks? I was more fearful in the first few years after treatment ended then during the time I was undergoing surgery and chemotherapy. When you are getting treatment, you feel like you are taking action, your mind is 100% focused on the here and now. Once that all ends, you are left with "what's next?" That is when the meal trains, the friends checking in, the weekly visits to your medical team ends. Not many women are warned that this may be a particularly vulnerable time for them emotionally and it it can hit like a ton of bricks ( or feel like an elephant standing on your chest- a pink one!) Some women can feel tremendous pressure to put on a happy face for those loved ones around her. Much of the suffering I felt was the horror of knowing my medical problems were causing my husband, my Dad and stepmother, by siblings, my in laws, dear friends - worry and pain. That was why even during treatment I made an extra effort to wear my wig, put makeup on, look the part of a thriving survivor.
So what can you did if you love someone going though cancer? How can you help chase these pink elephants away for them?
The pink elephants still are in "my room", I just have learned to ignore them most of the time. When I can't ignore them, I live with them. By consulting and helping newly diagnosed patients and survivors, I have found purpose and focus, which is energizing and fulfilling to me. Not to "pink wash it" but that is one of my silver linings in living with breast cancer.
When a patient comes in to see a doctor, we often check their temperature,respiratory rate, blood pressure and pulse . For women, we should always include their last menstual period as the fifth vital sign. This is true for all females but is particularly important for teen girls. Many teen girls are private about their periods, and event their moms don't know whats really going on. Other times, teens and their moms think it is just "normal adolescence" to have irregular periods, heavy periods, infrequent periods, or mood swings with their periods. In the first two years after menarche ( when a girl gets her first period), it is normal to have SOME irregularity. After 1 year, 50% of adolescent girls will establish a regular menstrual pattern anywhere from 21- 46 day cycles. After another year, half of those who did not have regular periods in the first year will develop a pattern. ANY period problems that disrupt a teen girls quality of life deserves to be investigated. Our teen girls are trying to navigate and deal with so many intense pressures in every life- all in this ever changing new world of social media. When you add period problems - from pain and heavy bleeding, to mood issues and PMDD ( that will be my next post!) to infrequent or absent periods (often associated with disordered eating or PCOS) it is a lot for a girl to handle! I advise moms to talk to their daughters about their period as a fifth vital sign and encourage them to track their periods. Some apps that are good are "Eve", "Flo", "Clue" , and "Magic Girl". If you suspect an issue, talk to your pediatrician and ask for a consult with a gyn who deals with adolescents. The good news is that it is often very easy to diagnose and treat the underlying causes of period problems. We just have to ask our girls whats going on and educate them that it it NOT normal to suffer with you periods. I have spoken to countless adult women who report that they suffered for years with irregular, heavy, painful or infrequent periods, all because they thought it was just normal and nobody asked them about it . Some very common and treatable conditions the we see with period problems are : Polycystic Ovarian Syndrome , endometriosis, female athlete triad, disordered eating, hypothyroid Disorder, Von Willenbrand's Disease and other bleeding disorders, dysmenorrhea, PMS, PMD, menstrual migraines, just to name a few. Bottom line is ask your daughter, speak up if there is even a question of a problem and understand that teen girls quality of life and happiness can be greatly affected by her periods- AND she doesn't have to suffer!
For more information check out this article :
For period tracker apps, check out :
FLO, EVE, MAGIC GIRL or CLUE.
I see so much misinformation and fear among women and health care providers over menopause and HRT. We need to change the conversation, and base it on facts and evidence. But first we as providers also need to start the conversation with women about menopause ! I see so many women who have needlessly suffered with peri-menopause and menopause because their providers told them to just "deal" with it or gave them outdated misinformation that scared them . I have also found that many women feel reluctant to complain about their symptoms , or feel embarrassed to talk about things like the sexual dysfunction that can occur.
Here is a follow up post in regards to risks and HRT. I follow the North American Menopause Society guidelines for my HRT recommendations as well as my years of clinical practice and personal experience with menopause, when counseling my patients. Decisions about HRT should be based on:
1. Most importantly the UNIQUE health risks and symptoms of each individual
2. The age and time from menopause
3. The goals of therapy
The evidence from extensive research shows us that for menopausal women younger then 60, or within 10 years of the onset of menopause, who do not have contraindications to HRT, that systemic HRT benefits outweigh risks for relief of menopause photoflashes and sleep disturbances and for prevention of bone loss. There are risks however to anything we do, so let's review what the latest research shows. We have come a long way from 2002 when the Women's Health Initiative (WHI) study was released. It caused needless widespread panic and concern among women ( and providers) taking ( and prescribing) HRT. It showed increase risks in heart disease, stroke and breast cancer. BUT THE DEVIL IS THE DETAILS! In the past 15 years since the headline grabbing initial results, additional studies, further analysis of the data and continued longer term follow up has been done. The picture has become much clearer and now we know that in younger menopausal women, near the age of menopause, using low dose and transdermal HRT in particular, that the benefits outweigh the risks in symptomatic women. A very important fact to point out about the WHI was that on average women were 63 years old and were 13 YEARS from the onset of menopause and MOST women did not have any symptoms of menopause. The women were given synthetic equine estrogen in the form of oral Prempro. That is different from more modern offerings of estradiol transdermal patches with an oral progesterone or a progestin combined in the patch. l
Proven benefits of systemic HRT
Known Risks of Systemic HRT
I hope this post helps clear up some of the myths about HRT. To summarize, it is important to remember that each patient's menopause transition is unique and treatment needs to be tailored to each patients unique needs and risks.
In the next installment, I will tackle some unique patient issues and HRT, like women with a strong family history, women with premature ovarian failure, women who are BRCA positive , and women who only have genitourinary symptoms.
For more information , check out The North American Menopause Society.
There is so much confusion, fear and misinformation out there about HRT for symptomatic menopause that I thought I would take some time to outline the approach I use in my practice. I have a special interest in menopause management. As I publicly discuss, I am a breast cancer survivor, diagnosed at the age of 28. Due to treatment, I am in menopause. So I personally relate to my patients who suffer from menopause symptoms, and I am highly sensitive to issue related to breast health, genetics, and risks associated with hormones. The good news for women is that the current evidence based guidelines clearly state that many women who are symptomatic can be effectively and safely treated with hormones. The safety of hormone replacement therapy depends largely on the age of the patient and duration of use . For the majority of women, there risks are very few and the potential benefits are many when HRT is given for a clear indication and therapy is started WITHIN a few years of starting menopause.
The proven benefits are control of menopausal symptoms, maintenance of bone mineral density, and reduced osteoporotic fractures, improved muscle mss and strength. From a recent editorial of the Menopause Journal, ( Vol. 24 No. 9, 2017) :
"The evidence suggests that , for menopausal women aged younger then 60 years or within 10 years of menopause one, without contraindications, systemic HRT benefits outweigh risks for relief of menopause hot flashes and sleep disturbance and for prevention of bone loss"
In my practice, I always start with a comprehensive medical and family history, make sure that all preventative health care is up to date ( i.e. recent pap, pelvic exam, breast exam, mammogram, colonoscopy). I also asses the patients cardiac risk use things like blood pressure, cholesterol levels, and other factors to estimate their 10 year risk of heart attack or stroke. One online model I use is the Reynolds Risk
(www.reynoldsriskscore.org). It is important look at the total picture of health, including that patient's diet, fitness level, stress and emotional health. Finally, it is very important to find the menopause symptoms that most bother the patient. For some it is terrible hot flashes and night sweats. For others, the main symptom is mood changes and increase in anxiety. For other women, particularly women who are a bit beyond 2 years into menopause, it is vaginal dryness and painful intercourse. By identifying what the most troublesome symptoms are, we can target treatment. Some patients may need systemic hormone replacement therapy , most often in form of an estrogen patch. Women taking estrogen patches or pills also need progesterone ( preferably ) or a progestin. For women who only have vaginal dryness, there are many vaginal only treatments that do no require taking systemic hormones . The bottom line is that each patients management must be individualized to their own needs, risks, and goals.
For more information, check out this excellent video from the North American Menopause Society.
Dr. Corinne Menn
Results from a recent study support the idea that if hormone replacement therapy is given near the time that a woman enters menopause, that there is NOT an increase risk of cardiovascular risk. This data should reassure women that low dose, preferably trans-dermal menopausal hormone therapy is safe, effective and can help improve symptoms. Menopausal hormone therapy needs to individualized for each patient after a review of the patient's medical and family history, current health status and menopause symptoms. There is no one "correct" way to treat menopausal symptoms and I encourage women to consider their full range of options, from lifestyle and diet, over the counter supplements , to hormone replacement. There are many great options, and the bottom line is that you should not suffer with menopausal symptoms.
From the KEEP study-
KEEPS hormone therapy trial in newly menopausal women (September 2014)
The Women's Health Initiative (WHI), a set of menopausal hormone therapy (MHT) trials in older postmenopausal women (average age 63 years) reported an excess risk of coronary heart disease (CHD) with MHT. Emerging data, including secondary analyses from the WHI, now suggest that use of MHT in the early menopausal years is not associated with excess CHD risk. The Kronos Early Estrogen Prevention Study (KEEPS) is the first randomized trial of MHT in younger menopausal women (727 women ages 45 to 54 years) . When combined with cyclical monthly oral progesterone, low dose oral conjugated estrogen (0.45 mg daily) or transdermal estradiol (50 mcg daily) for four years relieved menopausal symptoms. While several markers of cardiovascular risk improved in the MHT group, there was no significant effect on surrogate markers of atherosclerosis progression (coronary artery calcium and carotid intima-medial thickness) when compared to placebo. This trial provides additional reassurance that early use of MHT is safe for the treatment of menopausal symptoms, though it does not support a role for MHT in prevention.
Treating the whole patient should always be our focus as physicians. Unfortunately for many women facing cancer, quality of life issues are often ignored. Check out this great article by a young cancer survivor on how she has coped with the often unspoken side effects of cancer treatments- including early menopause and sexual dysfunction. I hope to address these overlooked issues in my practice with my patients.
A post from Life Interrupted in the NYT
Many parents wonder when to address their daughters’ gynecologic health issues. Adolescent girls are confronted with numerous challenges, and the decisions they make can have serious consequences for their health and well-being. To this end, it is recommend that girls first visit a gynecologist between the ages of 13 years and 15 years or sooner if you have concerns.
The following three suggestions are ways we can work together to guide your daughter to a lifetime of good health. Dr. Menn meets teen girls where they are most comfortable -online! This makes tele-health a perfect way to connect in a secure, safe, andcomfortable way for teens. Dr. Menn can order labs and imaging tests, prescribe medications and formulate any treatment plans all via tele-health. Teen health is very patient education heavy and the majority of teen visits are spent talking . When a physical exam is required, Dr. Menn will consult with your daughter's pediatrician or refer to a trusted colleague for in person care.
1) Get informed. Ask us for handouts and resources that deal with teen issues. We have or can find materials on health topics that you can use in talks with your daughter. This includes reproductive health topics, such as menstruation (eg, what to expect, menstrual cramps or irregularity, tampon use, and hygiene), promoting abstinence, and contraception. We also can help you to learn about other health issues, such as alcohol and tobacco use, safe driving, and healthy diet and exercise.
2) Talk with your daughter. Many health topics warrant open discussion. For example, although it may be awkward to discuss sex, it is important to talk with your daughter about it. In fact, parents who do so are more likely to have daughters who delay having sex. Too often, school health education programs lack important information. Thus, it is important for parents and physicians to work together with teens to fill in any gaps. A great resource is a book I recently read, called "Talk to Me First" by Deborah Roffman. It focuses on how to make discussing sex and sexual health a natural part of your relationship with your children and not a taboo.
3) Be sure your daughter is seeing a health care practitioner who will discuss preventive health care issues with her, including pregnancy, prevention of sexually transmitted diseases, and immunizations. By consulting with your daughter in at this age, we can work with to give her the knowledge and skills she needs to make healthy decisions, identify important behavioral or physical health issues, provide any needed treatment, and refer her for other services, if needed. Understand the importance of this confidential relationship and know that I will always work to encourage communication between a teen and her parents.
4) Some girls are initially reluctant to visit a gynecologist because they do not want a pelvic examination. However, in most cases, a pelvic examination is not needed. ACOG recommends the first pelvic and pap at age 21. So tele-health is an ideal way to start gyn care!
Ask us if you have any questions about adolescent health. Together, we can work to keep your daughter healthy and safe.
Check out my interview with Jennifer Merschdorf, YSC CEO
All of us have heard the news about Angelina Jolie Pitt choosing to have her ovaries and fallopian tubes removed as a means of preventing ovarian cancer.
Angelina Jolie’s message was “choose what’s right for you,” and the experts agree. She says, “It is not easy to make these decisions. But it is possible to take control and tackle head-on any health issue. You can seek advice, learn about the options and make choices that are right for you. Knowledge is power.”
I couldn’t agree more. YSC strongly believes and encourages young women to know their bodies, advocate for their own health and persist in asking questions if something doesn’t seem right. It is critical that young women make decisions based on the most current, evidence-based information available; ask questions and feel empowered to get a second opinion!
I applaud Angelina’s frankness and honesty in sparking a discussion in the media that must continue to spread around the world…young women CAN and DO get breast cancer!
Something else I appreciated was that Angelina highlighted the importance and impact of this experience on her co-survivor, Brad Pitt. This truly acknowledges the importance of co-survivors in our journeys! My favorite quote from the Op-ed is, “The beautiful thing about such moments in life is that there is so much clarity. You know what you live for and what matters. It is polarizing, and it is peaceful.” Every young woman diagnosed with breast cancer and her co-survivor knows EXACTLY what she means.
To gain a deeper and more personal perspective than mine, YSC spoke with Dr. Corinne Menn. Dr. Menn is a board-certified gynecologist and a young breast cancer survivor. She was diagnosed at age 28, only six weeks after losing her mother to ovarian cancer.
Although Dr. Menn’s initial test came back negative for BRCA 1 and BRCA 2 mutations, she chose to undergo a bilateral mastectomy to prevent the future recurrence of breast cancer. Several years later, she had a prophylactic bilateral salpingo-oophrectomy (BSO) – the same procedure Angelina underwent – to prevent ovarian cancer.
YSC: Tell us your thoughts after reading the Op-ed by Angelina Jolie Pitt and subsequent news coverage. Is this procedure “news” and do you think it should cause concern for healthy young women?
Dr. Menn: I’m glad to see that Angelina brings light to this women’s health issue. I particularly like that she notes that “health choices are a part of life not to be feared.” It’s important for patients to be aware of their health choices and not to be afraid of them.
Those who are at-risk are afraid to know whether they are BRCA positive or not, even if they are breast cancer survivors. The main fear I hear is about the physical implications of knowing. The belief that, “if I’m BRCA positive, I must have surgery,” is false. There are many choices that come along with being high risk. You must weigh your options and make the choice that is right for you and your family. The more information you have, the more empowered you will be.
YSC: How do women know if they should or shouldn’t be tested for BRCA?
Dr. Menn: There are excellent guidelines and risk assessment questionnaires that help clinicians decide who should receive BRCA testing. In the past, the threshold was higher and testing wasn’t routinely discussed or offered to patients. Doctors shouldn’t test everyone, but everyone should have a conversation about their family history with their doctors at least every few years, or as their family history changes. One thing to note is that if patients had the test before 2012, it may not have been screened for a mutation in a large rearrangement of the gene, also know as the (BART) test, which accounts for a small percentage of mutation problems in BRCA-positive patients.
My mother died of ovarian cancer at 54, only six weeks before I was diagnosed with breast cancer. After my chemotherapy treatments were done, I was tested for BRCA. I was negative, but it didn’t sit right with me, given my family history. I decided to pursue a bilateral mastectomy and treat myself as being BRCA positive.
Through my practice, I became more knowledgeable about BRCA and asked to add the BART sequence as a part of my testing. Guess what? It turns out I am BRCA 2 positive. Not only am I positive, but my brother, maternal aunt, and cousin are all BRCA 2 positive, too. It is amazing how this one piece of information has impacted my family.
I hear stories all the time from patients who were either not offered the test or were tested prior to 2012, when the comprehensive gene analysis became standard. I have made it my practice to ask women when they were tested and to follow up on the BART test if it was not included.
YSC: Please share with us what considerations and options you had to think about before choosing to undergo the BSO procedure at age 34.
Dr. Menn: It was a hard and emotional decision because it means closing the door on becoming pregnant and because, particularly as a gynecologist, I knew what early menopause meant for me. On the other hand, I had survived cancer once and experienced the untimely death of my mother. I wanted to be there for my children and husband, and ultimately the benefits of protecting myself from the recurrence of breast cancer and ovarian cancer outweighed the downside of early menopause and everything that comes along with it. Even if you are not BRCA positive, it is very likely insurance will cover the BSO procedure, if it is being done appropriately based on genetic factors and risk factors.
YSC: What are some things to consider concerning family planning when deciding if/when to have the procedure? Should someone be BRCA positive or be high risk due to their family history?
Dr. Menn: Many people don’t know this, but emerging studies show that with the BRCA 1 gene, your risk of ovarian cancer comes at an earlier age. We recommend that if you are deciding to undergo the BSO procedure and you’re BRCA 1 positive, that you have it done once you are done childbearing or before the age of 35, whichever comes first.
For those testing positive for BRCA 2, the risk of ovarian cancer comes later in life and you could wait until the age of 40 to undergo a BSO. There is also emerging evidence that ovarian cancer starts in the fallopian tubes. Therefore, some patients are choosing to do their BSO in a two-step process by removing their fallopian tubes first and keeping their ovaries until fertility is not an issue.
There are many options to consider, and women don’t need to make a decision right away. Once a woman decides to have the surgery, there are many health risks to consider. Make sure to push the clinicians to give the appropriate options and treatments that must be considered when removing one’s ovaries, namely for treating early menopause.
YSC: Could you tell us more about the side effects of early menopause? Is there anything breast cancer survivors can do to alleviate them?
Dr. Menn: Immediate surgical menopause comes with many side effects. I see many patients who are not aware of treatments for menopause. Patients need to ask their doctors about how they will manage the side effects before having any procedure done. Often, doctors will tell their patients to “just deal with it; it’s menopause,” which is totally unacceptable.
Some side effects include insomnia, weight gain, sexual dysfunction, vaginal dryness and mood changes. The approach to menopause varies widely, but there are many non-hormonal things like lifestyle changes and holistic options that can work. It depends on the patient, but I recommend many non-hormonal treatments for breast cancer survivors.
Valerian root is really helpful in treating insomnia. There are great herbal formulations available for hot flashes. I recommend a local vaginal estrogen, even in breast cancer survivors, to help with vaginal dryness and sexual dysfunction. Coconut oil is also a great natural option. For those who have never been diagnosed with breast cancer, there are many options such as the estrogen patch, progestin IUD and oral progesterone.
YSC: As a young breast cancer survivor, please share your experiences with YSC.
Dr. Menn: I found Young Survival Coalition (YSC) when I was diagnosed with breast cancer at the age of 28 and it was my absolute lifeline. YSC gave me hope and made me feel like I was not alone. YSC immediately connected me with other survivors who had already gone through treatment, and their support was invaluable.
I remember going in to receive chemo and being the only young person in the waiting room. I felt like everyone was looking at me and feeling sorry for me. It was very isolating. When I found YSC, I no longer felt alone. I have met so many wonderful young women as a result, some of whom are now lifelong friends.
The silver lining to breast cancer has been my involvement in YSC— from riding the Tour de Pink, to attending In Living Pink, to now leading the Westchester County Face 2 Face group. Breast cancer and being BRCA positive has led me to dedicate much of my practice to helping other survivors deal with their unique female health issues.
Thank you so much for sharing, Dr. Menn. I am certain many women out there will benefit from your story and expertise.
Find out more information on the BRCA gene.
If you or someone you know is at high risk for breast or ovarian cancer but has not been diagnosed with it, learn more from our partner, Bright Pink.
You may also wish to learn more about Dr. Menn.