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member9723
(High Risk Individual)| Communities: Breast Cancer | Answers: 25 |
| Member Since: Mar. 2011 |
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Personal Bio (My story)
I am the President of 4Women.com and designer of the newly patented BeauBeau® head scarf, a fashionable scarf specifically designed for women and girls who lose their hair. The Beaubeau unites the world of fashion with medical hair loss. I lost my hair quite suddenly in 2002 due to the autoimmune disease, Alopecia Universalis. I come from three generations of breast cancer survivors and am a BRCA2 gene carrier and a Previvor, having had a prophylactic double mastectomy and oopherectomy to reduce my cancer risk.
I am also a caregiver. My mother, a 30+ year breast cancer survivor now has Lymphoma. At age 89, she was unable to tolerate a full regimen of treatments and is now living with lymphoma.
I am cancer-free, but very much empathize with women who lose their hair to chemo or other medical conditions. I strive to be a source of strength and hope for women and girls with medical hair loss in addition to all women impacted by cancer.
I am also a caregiver. My mother, a 30+ year breast cancer survivor now has Lymphoma. At age 89, she was unable to tolerate a full regimen of treatments and is now living with lymphoma.
I am cancer-free, but very much empathize with women who lose their hair to chemo or other medical conditions. I strive to be a source of strength and hope for women and girls with medical hair loss in addition to all women impacted by cancer.
Personal Info
Location: FL, Sarasota
Age: 64
Gender: Female
Marital Status: Married/partnered relationship
Number of children: 3
Ages of children:
Over 18 years old
Speaks:
English
Webpage:
www.4women.com
Ask me about:
Alopecia, BRCA2, breast cancer, mastectomy, oopherectomy, hair loss
Facebook:
http://www.facebook.com/4women
Twitter:
http://twitter.com/thebeaubeau
Health Bio (My Health Story)
I come from 3 generations of breast cancer survivors. After learning I was a BRCA2 carrier and had an estimated 85 percent chance of developing breast cancer during my lifetime, I made the bold and proactive decision to have a prophylactic double mastectomy and oopherectomy. Not long after, I developed Alopecia Universalis, an autoimmune condition that causes complete hair loss. I lost all my hair (head, body, eyelashes & eyebrows) in the span of just 3 months. I had a hard time adjusting. Though I was healthy, I was assumed to be "sick". I couldn't bare the thought of living life in hot, scratchy wigs. After a period of depression and social isolation, I decided to design my own solution. I now offer women and girls a fashionable solution to medical hair loss and the emotional upheaval that comes with it.
member9723 Activities
member9723 (High Risk Individual) asked the question in topic(s) Control, Tips, Emotional Health, Patients, Mental Health, Cancer
2
Answers |
1 year ago
Another option for me was to have careful survellinece via mammograms and breast MRI's. Not all insurances will cover MRI's and also they can have false positives and negatives. There is no substitution for self exam where you can detect any physical changes yourself. It was recommended that I have screening every 6 months which I was doing until I decided to have my surgeries. Hope this was helpful.
New answer by member9723 (High Risk Individual) in topic(s) BRCA-1, High Risk, Breast Cancer Screening, Breast Cancer, Breast Cancer High Risk, BRCA Mutations, Screening, BRCA-2
2
Answers |
1 year ago
I originally created my product, the beaubeau head scarf, not as product, but for myself. So it was and is the my own personal solution to an appearance challenge that was otherwise ruining my life. So the idea didn't start as a business idea, but a self-help idea. Upon realizing others liked my idea, I worked on perfecting my design. That was fun and not so difficult. Building the business around the product, now that is the challenging part. Starting from nothing and building up is a slow, steady process requiring non-stop attention. What helps me most in getting over all the bumps is constant research and input and support from competent and caring people.
New answer by member9723 (High Risk Individual) in topic(s) Entrepreneurship, Entrepreneur, Business
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1 year ago
Hard to compare. Alopecia wasn't the result of a decision I made or remotely within my control. Electing to have prophylactic risk reducing surgeries like mastectomy and oopherectomy was an entirely patient-driven decision. Being elective, and especially having happened back when risk-reducing surgery in the context of BRCA carrier status was new ground, I was on my own. My doctors were not able or willing to weigh in on my decision so that put a tremendous amount of patient responsibility on my shoulders. Once I made the decision though, I did not agonize at all. It was a relief because living with the constant fear of a breast cancer diagnosis is far more agonizing.
New answer by member9723 (High Risk Individual) in topic(s) Support, Alopecia, Emotional Support, Anxiety
1
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1 year ago
Initially, I hid and avoided others because I too felt I looked "sick." Even as I have adjusted to my hairloss and now lived for years as a bald woman, I am still assumed to be sick and specifically a cancer patient. So I frequently have to clarify my health status as strangers will often come up to me and either ask questions about my diagnosis or express their best wishes or tell me about their own cancer experiences or those of loved one's. I respond by telling them that I am not sick, that I have Alopecia, an autoimmune disease that causes hair loss. I also do my best to live and look like an otherwise healthy individual. I use lots of fashion accessories (jewelry, scarves, and makeup) to add definition and color or to frame my face. I am active and I keep fit. I like to think I look like a healthy bald woman. This isn't a challenge restricted to women with Alopecia either. Often times, women who lose their hair during chemotherapy can feel otherwise generally healthy, and yet when they see themselves in the mirror or experience the reaction of others upon seeing their baldness, they feel less than healthy. It's hard to rise above that and really see oneself as beautiful and healthy when that's not what the reactions of others' indicate.
New answer by member9723 (High Risk Individual) in topic(s) Support, Communication, Emotional Support
1
Answer |
1 year ago
I had a bilateral mastectomy 10 years ago but it was prophylactic as I am a BRCA2 carrier (pre-vivor) I chose to have reconstruction with tissue expanders. Time has a way of healing some memories but I can honestly say this was not a bad experience. I spent one night in the hospital (felt well enough to go home same day) and did not take any pain medication. I also did NOT have any drains. The expanders were not that physically noticeable until probably the last visit when I was at full expansion and had to remain that way for a month. I do remember how unnatural that felt but it was over before I knew it. Originally I choose silicone implants but regretted that decision after a few years and did replace them with saline. My implants are so super comfortable and natural feeling, I often forget that I've had the surgery except that i almost never wear a bra. it's much more comfortable without a bra and there is something to be said for perky breasts at my age. I know this is a difficult decision but hearing as many other experiences as possible is certainly a way to gain perspective and help you with your decision.
New answer by member9723 (High Risk Individual) in topic(s) Patient Experiences, Patient Stories, Bilateral Mastectomy, Breast Surgery, Mastectomy
2
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1 year ago
Cancer negatively impacts a woman's self image in many ways. From surgery scars, to removed body parts, to weight gain, weight loss, hair loss (including eyelashes and eyebrows), skin changes, and other physiological and appearance changes, cancer often completely alters a woman's self-identity, typically for the worse, and in ways that make it so hard for her to self-identify as strong, healthy, or beautiful.
2
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1 year ago
I think private enterprise is sufficiently motivated by the huge profits they make off cancer.
New answer by member9723 (High Risk Individual) in topic(s) Breast Cancer, Non-Profits, Medical Research, Research
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1 year ago
I am no researcher, nor a medical specialist. I am just a woman doing anything and everything I can to minimize my risks of developing cancer, despite being a BRCA2 carrier. So personally, I feel especially empowered by the research increasingly focusing on the chemical endocrine disruptors and carcinogens that are ubiquitous in our foods and consumer products. I feel empowered by this research to make better and more informed decisions that will better enable me to avoid cancer.
New answer by member9723 (High Risk Individual) in topic(s) Breast Cancer, Breast Cancer Prevention, Breast Cancer Research
1
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1 year ago
member9723 (High Risk Individual) asked the question in topic(s) Breast Cancer Monitoring, Thermography, Breast Health
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1 year ago
1
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1 year ago
When you've watched every other woman in your family be diagnosed with and treated for breast cancer, you just know that your risk is not average or random. Despite that, it took a good deal of time and insistence on my part to convince my siblings to undergo testing with me. Ultimately, 5 out of 7 of us (including me) were confirmed to be BRCA2 carriers. We all respond differently. Some of my siblings just didn't want to know.
New answer by member9723 (High Risk Individual) in topic(s) BRCA-1, Genetic Tests, Breast Cancer, Genetic Counseling, BRCA-2, BRCA-1 / BRCA-2 Screen
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1 year ago
I would ask him to leave his statistically-based attitudes at the door when he is seeing you. Remind him that you want to be treated as a human being with feelings, not a disease, not a statistic.
New answer by member9723 (High Risk Individual) in topic(s) Support, Communication, Emotional Support, Doctor-Patient Relationship, Conversations With Doctor
5
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1 year ago
My mother, who is age 90 and living with lymphoma, can be very challenging to care for. She so resents having to depend on me and often snaps at me or gets very impatient with my attempts to help her figure out which meds she's taken or where she last saw her keys. To protect myself and to honestly make the most of my time with her, I ask myself a simple little question any time I feel utterly worn down by her - what if she weren't here to snap at me? Immediately I am grateful to have my fiercely independent 90-yr-old mom who needs my care. It is clearly a gift.
New answer by member9723 (High Risk Individual) in topic(s) Caregiver Support, Support, Caregivers, Emotional Support, Tips
4
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1 year ago
A word of caution on smoothies. Fruit smoothies are in fact loaded with sugar. It may be in the fructose form, but it's still sugar. If you go the smoothie route, try balancing all the sugary fruits with vegetables, and not just carrots, which are also high in carbohydrates (ie. sugars).
It's summer in Florida - meaning HOT. I find it hard to eat hot food, so I combine my favorite dressings and marinades with combos of my favorite finely chopped veggies. I chop a lot one time and keep the chopped veggies stored in frig so on most days I can just quickly mix an assortment, add dressing and have a refreshing, crunchy, nutrient-dense salad - a fabulous side to fish.
It's summer in Florida - meaning HOT. I find it hard to eat hot food, so I combine my favorite dressings and marinades with combos of my favorite finely chopped veggies. I chop a lot one time and keep the chopped veggies stored in frig so on most days I can just quickly mix an assortment, add dressing and have a refreshing, crunchy, nutrient-dense salad - a fabulous side to fish.
New answer by member9723 (High Risk Individual) in topic(s) Healthy Living, Healthy Foods, Healthy Eating, Diet, Healthy Lifestyle, Nutrition
7
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1 year ago
member9723 (High Risk Individual) asked the question in topic(s) Reduce Breast Cancer Risk, Genetics, Breast Cancer, BRCA-2, Breast Cancer Risk
1
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1 year ago
I can relate to your wondering about the psychological implications of "expecting" to get cancer. I'm a BRCA2 carrier and a previvor. I watched my grandmother, aunt, mother, and 2 sisters battle breast cancer. We lost my father to pancreatic cancer. While having a double prophylactic mastectomy and oopherectomy significantly reduced my worry, I now find myself enrolled in a pancreatic cancer screening study. The combination of BRCA2 and family history of pancreatic cancer leaves me feeling like a still live under some shadow. I don't let that stop me from being proactive with my lifestyle however, but like you, I have a separate psychological relationship with the idea of cancer.
New answer by member9723 (High Risk Individual) in topic(s) Breast Cancer, Breast Cancer Causes, Breast Cancer Risk, Healthy Lifestyle, Cancer
3
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1 year ago
1
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1 year ago
member9723 (High Risk Individual) asked the question in topic(s) Breast Cancer Virus, Breast Cancer, Breast Cancer Research, Research, Medical Research
1
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1 year ago
Michael Pollan's books are fabulous guides. Another important point in Pollan's writing is to eat REAL FOOD, not the multitude of "edible food-like substances" that pass for food on the shelves of U.S. supermarkets. If it's packaged, it more than likely contains some derivative of corn, soy or dairy, and if it's not organic, then it very likely has derivatives of genetically modified corn, soy, or dairy. The importance of organic cannot be overstated. Talk about estrogen-promoting!!! Atrazine, one of the most widely used herbicides in U.S. agriculture, has been shown to turn male frogs into not just anatomic female frogs, but female frogs capable of producing young! We need much more than the low fat/ no carb/ newest miracle food, compartmentalized, small-box thinking around food if we don't want to eat ourselves into sickness. If it wouldn't exist in nature without a little bit of love/support and attention from humans, then we probably shouldn't eat it.
New answer by member9723 (High Risk Individual) in topic(s) Health, Healthy Foods, Healthy Living, Breast Cancer, Healthy Eating, Diet, Nutrition
4
Answers |
1 year ago
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