There have been many wonderful people who have listened and shared their time with me as I begin to sort through the options and formulate my personal plan of action.
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FORCE
I've only been on the FORCE (Facing Our Risk of Cancer Empowered- for genetically predisposed individuals) website once or twice. I found the messageboards and searched through there. There were a lot of people asking questions, and then there was a gal who had just had a nipple-sparing prophylactic mastectomy and she said that if anyone had any questions, that they could contact her.
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I e-mailed her and she has been such an angel of comfort. She answered so many of my questions and she told me all about her story and her experiences through the surgery. When I asked her questions about how she felt about her breasts when she looked in the mirror, she was honest and said that she cried for a while. I told her that I was afraid that Dan wouldn't be as attracted to me....I know Dan loves me and will love me, but I don't want to be disappointing for him. She totally understood and said she had felt the same way. She said her fiancee is incredibly supportive of her decision.
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She is very young, not yet married and hasn't had kids yet. She is sad that she won't be able to breast feed her babies, but she wanted to jump on her risk as soon as she found out she was positive. I am grateful to have been able to have the children that we have and breastfeed each one without having gotten ovarian or breast cancer yet. We have been blessed greatly in that regard. And yet, many times I am breastfeeding James and cleaning up cereal messes, or sorting mail, not even paying attention to the beauty of this shared time together. But I am grateful for those sweet moments when James is eating and pops off to smile at me, then jump right back on for a little longer, till the next smile...
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Grocery Store Encounter
About a year ago, I was in the cereal aisle and for some reason struck up a conversation with a woman I didn't know. I found out that she planned all the activities in our stake, that she had 6 children... and that 9 years prior had undergone a unilateral mastectomy. She had just gone through reconstruction a year prior to our meeting. She had waited for reconstruction because when she found out she had breast cancer, she was 4 months pregnant. She underwent a type of chemotheraphy that is indicated safe during pregnancy. A week after the baby was born, she was put on the more powerful chemo. She couldn't breastfeed that little baby. She had two more children after that and breastfed and bottlefed them, saying that she never knew if she really had enough milk for her last two.
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I called her up to talk to her for the first time since I met her in the grocery store. I keep thinking that maybe I had that initial conversation with her for a reason, that maybe she'll be the one to share some important information with me that will prove useful or that she used a surgeon that maybe I will. She was great to talk to and very helpful. The main points I took from our converstaion were that even though she ran 4 miles a day and was very fit, she was surprised that the initial mastectomy surgery was so painful and took so much time to recover from. Sje also shared with me about her nipple experiences. Her surgeon took skin from inside her thighs to recreate her areola and nipple. He feels this procedure makes a more natural looking nipple, but her nipple soughed off. She told me about a product that is injected under the skin and raises up to create a nipple. I had never heard of Artecoll.
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"By transforming the surgically created breast mound into a more natural-appearing breast, nipple-areolar reconstruction can significantly enhance patients' perspective of their overall aesthetic result and can improve patient satisfaction. The most challenging aspect of nipple reconstruction is, however, the creation of a 3-dimensional structure with the dimensions and contour similar to a natural nipple. Various techniques have been used in an attempt to achieve long-term nipple projection, including local skin flaps, cartilage and fascial grafts, and nipple-sharing techniques. Irrespective of the technique used, a common disappointment is the loss of projection overtime. This phenomenon is particularly evident following implant-based breast reconstruction. As a means to increase projection after nipple reconstruction, the subcutaneous injection of Artecoll may be useful. Artecoll (Artes Medical, San Diego, Calif; Canderm Pharma Inc, Saint-Laurent, Canada) is an injectable substance that consists of inert, nonbiodegradable poly(methyl methacrylate) microspheres suspended in a partially denatured 3.5% bovine collagen. After the subcutaneous injection of Artecoll, the collagen carrier is degraded by the body within 3 months and completely replaced by a matrix of autogenous collagen at a similar rate. Because the microspheres are nonbiodegradable and too large to migrate to be phagocytosed by macrophages, tissue augmentation is expected to be permanent. Thus, it is hypothesized that the subcutaneous injection of Artecoll will provide long-lasting nipple projection with minimal patient morbidity and create a more natural-looking breast following postmastectomy reconstruction.The purpose of this study is thus to prospectively evaluate the efficacy of Artecoll in augmenting and maintaining nipple projection in the setting of postmastectomy, implant reconstruction." The Efficacy of Artecoll Injections for the Augmentation of Nipple Projection in Breast Reconstruction January 4, 2010
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Dental Assistant
My mother has gone through three bouts of breast cancer and has been on several drugs for numerous cancer-related things. One of the results of all of the drugs is that she has had dental complications. The dental assistant at the office where she was getting some work done said that she would be happy to talk with me. I've had her number for a long time, but now that I'm serious about this endeavor, I gave her a call last night. She was great to share her experience with cancer, her surgeries and her reconstruction. She gave me the names of her surgeons.
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That has been the most frustrating thing for me....HOW AM I SUPPOSED TO FIND THE PERFECT SURGEONS????? There is no comprehensive list I've found of general and breast surgeons. If I had that list, I think I would call each office and ask what proceedures they specialized in and where they cut and how they reconstructed the nipple, and how they solved after-surgery asthetic issues. I could do a lot of screening out just with office phone calls and then try to find physician reviews or speak with OR nursese and OBGs who could give me a better idea of the physician's work.
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This lady was 39 (two years older than me) when she had her mastectomy. Her mother had been on the fertility drug, Diethylstilbestrol (DES), back in the day that ended up effecting their offspring's fertilty and increased their breast-cancer/ovarian cancer risks. She was only able to have one child and because of her ovarian cancer risk had an oophrectomy as well.
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I learned a few new things from our conversation. She said that a bit after the silicone implants settled, they looked like two big balls on her chest, an appearance she referred to as "shelving". She said that her surgeon is one of few who does a lipo of fat in one area and performs a "fat transfer" onto the top of the implant to give it some padding. This solves the "rippling" effect issue where you can see the ripple of the implant since it is just implant under skin and gives a more sloping, natural appearance. She said that after the fat transfer, her breasts look Fantastic! I don't know if TRAM or Fat Transfers are an option for me. I don't know if fat from another area of my body could be succeptible to cancer.
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I had also been a little worried that a hysterectomy/bilateral salpingo- oophorectomy is going to throw my emotions into a rollercoaster ride that I won't be able to control since I can't be on estrogen or pseudo-steroids. She said that after her surgery, she didn't find that she was a crazy lady or anything like that at all. She said that her hot flashes were unbearable and finally her pysician prescribed a drug called Gabapentin. It is indicated for epileptic seizures, but apparently controls the number and intensity of hot flashes as well as estrogen.
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I have received such great information from these three women that I had never read about in my online research or in books. I feel like I need to keep speaking with women so I can have all the information I need. I don't want to look back and say, "Oh, I wish I had known about Artecoll or Gabepentin, or ..." I think I'll jump on the FORCE messageboards again and see what other information I can gather.
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Mom
Of course, this lady is the one who has been on me about getting these procedures done NOW, like yesterday! She is pushing me forward and asking me when I am going to get appointments so that I'll get serious. Mom is the one I can cry to or share the latest information with. Mom is the strongest women I know... and I hope I can be as amazing as she is through this all.
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