New legislation helps with BRCA gene testing. See Nov. 3 posting.
Wednesday, December 29, 2010
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A breast cancer survivor shares her experiences with the BRCA gene.
What's Involved in BRCA Testing
* In order to see a genetics counselor, a physician referral is required.
* A genetics counselor reviews BRCA gene information and explores your family health history.
* The test involves drawing a vial of blood and shipping it to the genetics testing lab.
Note: Currently, Myriad Genetic Laboratories is the only lab that conducts this test.
* Test results can be expected in 3-4 weeks, which the genetics counselor reviews with you.
* If you receive positive results for the BRCA gene mutation, then contact a breast cancer surgeon.
* A genetics counselor reviews BRCA gene information and explores your family health history.
* The test involves drawing a vial of blood and shipping it to the genetics testing lab.
Note: Currently, Myriad Genetic Laboratories is the only lab that conducts this test.
* Test results can be expected in 3-4 weeks, which the genetics counselor reviews with you.
* If you receive positive results for the BRCA gene mutation, then contact a breast cancer surgeon.
Breast Cancer Links
- yalecancercenter.org/genetics/resources/links.html
- thebreastcaresite.com
- myturningpoint.org
- info@myriad.com (Myriad Genetic Laboratories)
- genetics.emory.edu
- cancerquest.org
Tips for Recovery after Surgery
* GUARD DOGS. Assign a friend or family member to stay with you in the hospital. Although I was at a top medical center, it was extremely helpful to have someone be my advocate and watch over me.
My sister-in-law, a former nurse, spent the first night with me after my surgery. She questioned the nurses about the medicine they were administering. She constantly checked to make sure I was all right. She knew the medical terminology and the questions to ask and everything the nurses were doing. She was a godsend, and I will always love and appreciate her for this kindness (and sacrifice of no sleep).
When she left, my friend, Cheryl, took over. Several years ago, Cheryl had single-handedly cared for her husband, who was dying of cancer. As a result, she became an expert caretaker. She handled my situation so well that the nurses thought she had a medical background.
Your hospital sitters play another critical role -- they keep visitors away. In fact, I had a "No Visitors" sign placed on my door since visitors/phone calls/conversations suck the life out of you and impede the healing process. My hospital sitters were guard dogs and provided the protection I needed.
* FOOD. Once at home, meal delivery is one of the greatest blessings of life. Having a friend coordinating food delivery is critical. Friends suggested I leave a large ice chest by my front door so they could drop off food and not disturb me. While this sounded tacky to me, I relented and discovered that they were right.
* DRIVERS. After I had healed a bit, friends volunteered to drive me on errands and to doctors' appointments. This was extremely helpful as it took the pressure off my husband from doing everything, since there are millions of appointments and never-ending errands. Also, it gives you a chance to visit with your friends.
* WALKERS. I also had "walking buddies" since I was nervous about how far I could make it down the street before collapsing, and you need to walk as much as possible.
* BEDSIDE READING. Don't attempt to read Proust or Balzac while in the hospital or while taking drugs. My husband handed me a Balzac novel for entertainment during my hospital stay, and all I can remember is the same page I read repeatedly. This is the time when People magazine has value...the only time it has value.
* FASHION. Skip the expensive pajamas. I had invested in pretty, silk pajamas prior to surgery since I knew I'd be hanging around the house for 6 weeks and wanted to look halfway decent. Forget that. You need ratty sweatpants and worn-out knit tops you plan to throw away. Go to Target.
* SLEEP. I found that sitting up on the sofa (or my parents' recliner) is more comfortable than a bed for the first few weeks.
* DRUGS. Get off pain killers as soon as you can. You will have nightmares and hear voices, and they won't be friendly.
* WARMTH. Focus on keeping warm: wear extra clothes around your abdomen; consume soups and stews and hot tea; take warm showers; use blankets; visit Miami beach.
* LEARN TO RECEIVE. Finally, allow people to take care of you. This was hard for someone, like me, who is independent and has always been the caretaker rather than the caretake-e. But it's the best thing that can come from all the awful stuff you have to endure.
My sister-in-law, a former nurse, spent the first night with me after my surgery. She questioned the nurses about the medicine they were administering. She constantly checked to make sure I was all right. She knew the medical terminology and the questions to ask and everything the nurses were doing. She was a godsend, and I will always love and appreciate her for this kindness (and sacrifice of no sleep).
When she left, my friend, Cheryl, took over. Several years ago, Cheryl had single-handedly cared for her husband, who was dying of cancer. As a result, she became an expert caretaker. She handled my situation so well that the nurses thought she had a medical background.
Your hospital sitters play another critical role -- they keep visitors away. In fact, I had a "No Visitors" sign placed on my door since visitors/phone calls/conversations suck the life out of you and impede the healing process. My hospital sitters were guard dogs and provided the protection I needed.
* FOOD. Once at home, meal delivery is one of the greatest blessings of life. Having a friend coordinating food delivery is critical. Friends suggested I leave a large ice chest by my front door so they could drop off food and not disturb me. While this sounded tacky to me, I relented and discovered that they were right.
* DRIVERS. After I had healed a bit, friends volunteered to drive me on errands and to doctors' appointments. This was extremely helpful as it took the pressure off my husband from doing everything, since there are millions of appointments and never-ending errands. Also, it gives you a chance to visit with your friends.
* WALKERS. I also had "walking buddies" since I was nervous about how far I could make it down the street before collapsing, and you need to walk as much as possible.
* BEDSIDE READING. Don't attempt to read Proust or Balzac while in the hospital or while taking drugs. My husband handed me a Balzac novel for entertainment during my hospital stay, and all I can remember is the same page I read repeatedly. This is the time when People magazine has value...the only time it has value.
* FASHION. Skip the expensive pajamas. I had invested in pretty, silk pajamas prior to surgery since I knew I'd be hanging around the house for 6 weeks and wanted to look halfway decent. Forget that. You need ratty sweatpants and worn-out knit tops you plan to throw away. Go to Target.
* SLEEP. I found that sitting up on the sofa (or my parents' recliner) is more comfortable than a bed for the first few weeks.
* DRUGS. Get off pain killers as soon as you can. You will have nightmares and hear voices, and they won't be friendly.
* WARMTH. Focus on keeping warm: wear extra clothes around your abdomen; consume soups and stews and hot tea; take warm showers; use blankets; visit Miami beach.
* LEARN TO RECEIVE. Finally, allow people to take care of you. This was hard for someone, like me, who is independent and has always been the caretaker rather than the caretake-e. But it's the best thing that can come from all the awful stuff you have to endure.
Take Care of Yourself
Breast cancer treatment and reconstructive surgery can take a toll on your body, subjecting you to all sorts of painful, messy stuff.
You may have to deal with hair loss, weight gain and healing from surgery--not to mention experiencing the biggest hangover of your life from chemotherapy and other drugs that produce nasty side-effects. As a result, you feel like every facet of your femininity is being assaulted.
The best way I've found to combat all the hardship your body has to endure is to treat yourself well. (After all, isn't living well the best revenge?
In the Atlanta area, the following resources have been extremely helpful for me during breast cancer treatment and "BRCA surgery":
1. Before you begin chemo treatment (when you lose eyebrows and eyelashes), pay a visit to a permanent makeup artist. Do not go to a regular tattoo operation, but seek someone who specializes in makeup. Getting your eyebrows and eyeliner tattooed keeps you from looking like a 5-year-old playing with her mother's makeup since it's difficult to apply makeup when you have no facial hair and your skin tone is pale and lifeless. Cheryl Rosenblum was the first person in Georgia to be certified for permanent makeup and is a licensed instructor.
Contact: www.permanentmakeupofatlanta.com.
2. If you choose to buy a wig (if you'll be losing your hair), have your hairdresser style it for your face. Or, do what a friend of mine did -- she tapped a wardrobe artists for a community theater group, who had tons of experience in styling wigs.
3. If your skin tone washes out during chemo (and it will), use Jergens self-tanner (comes in a spray) to give your face some color and life. It saves you from looking like Count Dracula.
4. Even better, taking good care of your skin is critical during chemo, and Chrissy Thomas, owner of About Face Skin Care, is an RN and former plastics nurse. Her skin care business is overseen by a medical director, and the products and procedures they offer are medical-grade (the best), which regular salons can't access. Plus, their medical expertise is applied to your specific needs.
Contact: www.aboutfaceskin.com.
5. If you feel dumpy & frumpy and need a shopping boost, go to The Bilthouse apparel boutique. (Two locations: East Paces Ferry Road in Buckhead and Roswell.) While this upscale, contemporary store is geared to the genral public, the owner, Jan Bilthouse is a breast cancer survivor and has trained her staff to help breast cancer patients select the coolest clothes to flatter their bodies. Bilthouse also supports tons of breast cancer causes in the Atlanta area.
Contact: www.thebilthouse.com.
6. Do your friends want to do something more to help than just send you flowers? They should consider hiring a personal chef instead. A good friend of mine gave me the give of a personal chef after I came home from the hospital. Deborah Van Trece has been a caterer/personal chef for 15 years. You select from her menu suggestions, or she will craft a meal based on your preferences. She delivers a dinner for 4 that is vacuum-sealed in a plastic bag that simply needs rewarming -- or can be frozen for future use.
Contact: deborahvantrece@gmail.com.
7. Exercise is CRITICAL in making you feel better physically and emotionally. Walking is typically what is recommended--especially after surgery. I found that walking 40 minutes produced endorphins that helped ease my pain, stiffness and discomfort more effectively than pain medication. When you are able to, swimming is the best exercise of all. Make chlorine your preferred perfume.
You may have to deal with hair loss, weight gain and healing from surgery--not to mention experiencing the biggest hangover of your life from chemotherapy and other drugs that produce nasty side-effects. As a result, you feel like every facet of your femininity is being assaulted.
The best way I've found to combat all the hardship your body has to endure is to treat yourself well. (After all, isn't living well the best revenge?
In the Atlanta area, the following resources have been extremely helpful for me during breast cancer treatment and "BRCA surgery":
1. Before you begin chemo treatment (when you lose eyebrows and eyelashes), pay a visit to a permanent makeup artist. Do not go to a regular tattoo operation, but seek someone who specializes in makeup. Getting your eyebrows and eyeliner tattooed keeps you from looking like a 5-year-old playing with her mother's makeup since it's difficult to apply makeup when you have no facial hair and your skin tone is pale and lifeless. Cheryl Rosenblum was the first person in Georgia to be certified for permanent makeup and is a licensed instructor.
Contact: www.permanentmakeupofatlanta.com.
2. If you choose to buy a wig (if you'll be losing your hair), have your hairdresser style it for your face. Or, do what a friend of mine did -- she tapped a wardrobe artists for a community theater group, who had tons of experience in styling wigs.
3. If your skin tone washes out during chemo (and it will), use Jergens self-tanner (comes in a spray) to give your face some color and life. It saves you from looking like Count Dracula.
4. Even better, taking good care of your skin is critical during chemo, and Chrissy Thomas, owner of About Face Skin Care, is an RN and former plastics nurse. Her skin care business is overseen by a medical director, and the products and procedures they offer are medical-grade (the best), which regular salons can't access. Plus, their medical expertise is applied to your specific needs.
Contact: www.aboutfaceskin.com.
5. If you feel dumpy & frumpy and need a shopping boost, go to The Bilthouse apparel boutique. (Two locations: East Paces Ferry Road in Buckhead and Roswell.) While this upscale, contemporary store is geared to the genral public, the owner, Jan Bilthouse is a breast cancer survivor and has trained her staff to help breast cancer patients select the coolest clothes to flatter their bodies. Bilthouse also supports tons of breast cancer causes in the Atlanta area.
Contact: www.thebilthouse.com.
6. Do your friends want to do something more to help than just send you flowers? They should consider hiring a personal chef instead. A good friend of mine gave me the give of a personal chef after I came home from the hospital. Deborah Van Trece has been a caterer/personal chef for 15 years. You select from her menu suggestions, or she will craft a meal based on your preferences. She delivers a dinner for 4 that is vacuum-sealed in a plastic bag that simply needs rewarming -- or can be frozen for future use.
Contact: deborahvantrece@gmail.com.
7. Exercise is CRITICAL in making you feel better physically and emotionally. Walking is typically what is recommended--especially after surgery. I found that walking 40 minutes produced endorphins that helped ease my pain, stiffness and discomfort more effectively than pain medication. When you are able to, swimming is the best exercise of all. Make chlorine your preferred perfume.
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