Hello everyone and welcome to our BRCA website for previvors and survivors. On May 23, 2008 previvorsandsurvivors.com was born and October 2010 previvorsandsurvivors.com, Inc. a Not for Profit group was created.
We are a 501 (c) (3) ALL VOLUNTEER GROUP where no one here gets paid or gets compensated in any way for their services.
The mission of our group is to provide the support, skills and resources to all people in relation to the BRCA gene and hereditary breast and ovarian cancer. It’s a place where ordinary people help ordinary people. The difference between our project and the many others out there is that we are supporting people who have to come to terms with a very unique agonizing decision, do I have a double mastectomy and oophorectomy without a definitive cancer diagnosis?
“The term “PREVIVOR” was coined by FORCE in 2000, and they have consented to the use of “PREVIVOR” on this website.” Previvor as we use it, refers to a person who does not have cancer, but who has tested positive for the BRCA gene mutation- which puts them at an incredibly high risk of developing breast and/or ovarian cancer. This means they have up to an 87% chance of developing breast cancer in their lifetime and a 44% chance of developing ovarian cancer. Some people have found out that they have the BRCA gene mutation only after they have already developed breast/ovarian cancer-therefore a SURVIVOR. We now have to worry about issues involving passing down this mutation to our families.
We are an International support group and provide a site for men and women who are involved with hereditary breast and ovarian cancer, whether they are current fighters, survivors, or previvors. The site is set up to help these people get information and hear other people’s stories that have been affected by this.
Our amended mission (6/7/13) is to raise funds for other 501 (c) (3) tax exempt organizations involved in scientific research related to breast or ovarian cancer or the BRCA gene.
What can you do? Participate in the forum, shop for a family, carpool children, donate meals, get gift certificates for salons, entertainment, dining, etc.. These little things mean a lot to a family going through a difficult time. Let’s stay educated about nutrition, yoga, exercise…you think of it—let’s make it happen.
We need to involve our communities… educate and make people aware and sensitive to our cause. Please show your support for all the men/women in your life – your mothers, fathers, sisters, brothers, daughters, sons and friends and donate today.
If any of you would like to see a special forum, or if you hear of anything important to share, just let us know. This site is for YOU. We will continue to get you the most factual and current information that is out there, where we can all stay informed, and make the best decisions about our health, and try to deliver it in a simple and easy to understand way. We welcome all feedback and any recommendations. . If you are a previvor or survivor, please feel free to tell your story in the forum, start a discussion, ask a question, or send an email.If you belong to a support group–please list it for new members -also in your home state. We would like a woman or her family to be able to find support in her own community.
The best part of this site is that you may remain anonymous. All you have to do is let us know you’d like to participate and we will post anonymously for you. We believe that is why this site has become so popular so fast. You don’t have to join to participate, although if we have your email address we can send you regular private updates.
Be well you all.
Wishing you all continued good health. Thanks for your support.
With over 600,000 women undergoing the procedure every year, hysterectomies affect a vast majority of American women. During some procedures, a device called a Power Morcellator has been used to cut the uterus into small pieces that are then extracted from the body. In recent months, however, this instrument has come under heavy scrutiny by the FDA. Laparoscopic power morcellation has been named responsible for spreading undetected cancer, namely in the form of uterine sarcomas, throughout the abdomen and pelvis of the patients. Even more shocking, the average life span following accidental morcellation of a cancerous tumor is only 24-36 months.
The reason this procedure is undergone by so many is the growth of non-cancerous uterine fibroids. Most women develop these, and while most remain harmless, they can cause issues such as heavy menstrual bleeding, pelvic pain and frequent urination. Sometimes the symptoms are so intense they require surgical therapy. If the surgery spreads any cancerous tissue, as power morcellation does, the longevity of the woman is severely decreased as the previously contained cancer can now spread itself throughout the body.
The FDA has concluded that there is no reliable method for preoperatively predicting whether a woman with fibroids may have a uterine sarcoma. Based on a quantitative assessment of power morcellation released in April, the FDA stated that 1 in 350 women undergoing a hysterectomy or myomectomy for the treatment of fibroids has an undetected uterine cancer, such as leiomyosarcoma (LMS), a particularly aggressive uterine sarcoma with an already poor prognosis. Because of this, the safest route is to not undergo any type of laparoscopic power morcellation.
The FDA met on July 10 and 11 to discuss the dangers and the future of morcellation procedures, and a decision is currently being made as to the fate of power morcellators. Any type of awareness raised about this dangerous device will help put an end to the spread of avoidable and deadly cancer. If you are undergoing a hysterectomy, talk with your doctor about how the surgery will be performed, asking specifically if power morcellation will be used. If so, ask why it is the best procedure and get it changed. Nothing is more precious than your life.
READ MORE ABOUT IT HERE: http://www.recallcenter.com/
Go take a look in our forum: http://previvorsandsurvivors.com/forum/
To read the promising new BRCA news just click on these links:
New book out: Getting Past the Fear: A guide to help you mentally prepare for chemotherapy by Nancy Stordahl
- The importance of acknowledging your true feelings
- Tips for self-advocating
- How to cope with hair loss
- How to buy a wig
- What will the first day of chemo be like?
- What to expect during chemotherapy
- Looking forward
ATLANTA – BOSTON – BURBANK – CHICAGO – FAIRFAX, VA – HOUSTON – LOS ANGELES – MIAMI – NEW YORK – PHILADELPHIA PHOENIX – SEATTLE – WASHINGTON DC
The film will also be available On Demand.
You can view the trailer here: http://youtu.be/
Writer/Producer/Director: Steven Bernstein
Request the film in a theater near you: www.decodingannieparker.
Studio: eOne Films US
Samantha Morton, Helen Hunt, and Aaron Paul
Rashida Jones, Maggie Grace, Alice Eve, Ben McKenzie, Corey Stoll, Richard Schiff, Bradley Whitford, Marley Shelton
Decoding Annie Parker follows the incredible, irreverent and heartwarming story of how the paths of cancer survivor Annie Parker (Samantha Morton) and geneticist Mary-Claire King (Helen Hunt) intersect. With grace and humor the film chronicles how these remarkable women work to make one of the most important genetic discoveries of the 20th century.
Film Images and Poster: http://we.tl/
Embed Code: <iframe src=”//player.vimeo.com/video/
YouTube Link: http://youtu.be/
Embed Code: <iframe width=”560″ height=”315″ src=”//www.youtube.com/embed/
I am like every other woman in the world, I hate going for my yearly gynecological check up and worse, going for a mammogram. I had successfully avoided my check up for seven years when I got a phone call from my sister that she was sick. She told me that the doctor was thinking she had ovarian cancer.
How could it be ovarian cancer, that sort of thing doesn’t run in our family? It couldn’t be that, but it was exactly that. She had surgery and we were told that she was a stage 3, type C. Ovarian is a sneaky girl, & is often detected late because the symptoms are so like those of more benign gastrointestinal issues like irritable bowel syndrome.
My sister urged me to get checked. I scheduled my leap year examination. I told the gynecologist that my sister had just been diagnosed with ovarian cancer. She asked me if I was an Ashkenazi Jew, which I am and a few other questions. She told me that my sister Darcy should get what is known as a BRCA test. This is a genetic test that will tell you if you have this genetic mutation, which puts you at a higher risk of developing breast & ovarian cancer. Darcy was undergoing chemotherapy, and was reticent to have any more tests, but, finally, went for the testing. If she was positive, then my sister & mother & I would have to be tested. She was positive. My sister Alissa, who lives in Georgia, & I decided that we would go to get tested the same week, so that we would get our results at the same time.
Alissa got her results first, she was negative. She said, Ev, I know that yours is negative too! I thought the opposite. I told my husband Steven, that I felt that I was positive, I don’t know why. My mother’s results were negative, and so we now know that my father carries the mutation. Of all the genetic gifts to get, this isn’t one I wanted.
I was positive for BRCA1. My life went from zero to sixty in a blink of an eye. All the years that I did go for mammograms I was confident that my results would be negative. No breast cancer in my family. Now when I went for my mammogram, I would worry that I was positive.
I have been told for years that I have dense breasts. I often needed an ultrasound after my mammogram. Several years before my BRCA test, I had found a lump in my breast and had to go for a second mammogram (they needed additional views), and then an ultrasound. For the ultrasound, I was put into a curtained area, then someone just came in, and the technician said, “Hey, I’ve got a breast in here”. I said I have a first name; it is Evan. Ah, what a wonderful feeling. I had become a breast, a body part, no longer a person! Anyway, after the painless ultrasound, I had a fine needle aspiration. This is where a needle is inserted into your breast in order to take a sample from the mass, and then put the fluid under the microscope to see if there are any cancer cells. Well, that sounds easy enough, right? Nope, it can take several “passes” as the doctor put it, and I had to have three passes. It hurts, it hurts a lot! Luckily, my results were negative for any cancer cells. I had dodged a bullet. Boy was I wrong!! There was a cannon ball with my name on it, waiting in the wings.
Fast forward about 10 years, and I am BRCA1 positive. Oh, the choices I have to make. The easiest of the choices is what is known as a salpingo oopherectomy, which is the removal of the tubes & ovaries. No brainer, right? Ok, I am 51 at this point, so I am not having any more children. Consider the tubes & ovaries gone. What about the breasts? Should those go too? I kind of like my breasts! Not to be conceited, but, I had been told by a medical professional that I had nice breasts. Let me explain, I always wanted bigger breasts, I mean what woman doesn’t? I went to a plastic surgeon in White Plains, NY, and he couldn’t believe that I had breast fed a child and had no sagging. Honestly, when a plastic surgeon says that, it has to be true, right?
Now, having your breasts enlarged is one thing, taking them completely off your body is another. I am woman, see, I have breasts!! They may be small, & in certain clothing, almost invisible, but, without question, they are mine.
The oncologist that did my BRCA testing told me that in terms of having a reconstruction, I needed to find an artist. He advised against having the surgery done locally where I lived. I will heed this advice.
I sit with a couple of guys at lunch, and they constantly notice a woman’s rack. Nobody has ever said that I had a rack, but at least what I had was all mine. I thought, hmmm, did those guys ever think that woman has had a mastectomy? I wanted to tell them to stop looking at woman’s breasts because we have minds, right? Don’t we? Although, if truth be told, haven’t I always been envious of a woman’s cleavage, since I had none? Oh, I am my breasts! It is true, I am a woman because I have breasts, nobody has ever said, look at that woman, she has a great mind! I wanted to scream at them and tell them that they were being insensitive, that women are more than just a sum of their breasts! I held it in and appreciated what remaining time I would have with my breasts.
So, now I need to find the right surgical team. This is where my husband, Steve, is a great source of information. He is a medical malpractice lawyer, and has many medical friends. He made a phone call to an oncologist who works at New York University Hospital. This wonderful woman told my husband that the two best breast surgeons in New York are Eleni Tousimis & Dr. Lauren Cassell. Oddly, my husband & I were watching NY Medical with Dr. Oz, and they did an expose on a woman with breast cancer and her physician was Dr. Tousimis. She was young & brilliant. She was going to be my surgeon. I call Dr. Tousimis the next day. I was told that she is no longer taking patients in New York because she is relocating her practice to Washington, DC. Now what? Don’t I need several opinions? So, my devoted husband calls his friend again, & explains the situation. She gives us another name, a Dr. Freya Schnabel. I call & make an appointment with Dr. Schnabel. She is an absolutely wonderful woman, kind, understanding and loving. She tells me that I basically have three options, I can be vigilant, take a chemotherapy drug for five years, or have a bilateral mastectomy with immediate reconstruction. Let me tell you what it means to be vigilant. Vigilance means to have a mammogram, MRI (with contrast) and an ultrasound every six months. Because my breasts are dense, I most likely would be having a fine needle aspiration every time a cyst was there. My body makes lots of cysts. So, take chemotherapy (side effects included), or have tests every six months where you have to worry that you will get a diagnosis of cancer and have to go through chemotherapy, perhaps radiation therapy, or the removal of the offensive breast tissue. I am pretty sure, my mind is made up. I have chosen the mastectomy.
We were told that the best gynecological oncologist in New York is Dr. Stephanie Blank out of NYU. We make an appointment; make the 1-1/2 trek into the City to meet with this brilliant surgeon. We check in, & wait to be seen. I am called into the back, and am told that this lovely resident named Arielle will take a detailed history from me and then I will see Dr. Blank. Arielle is sweet, takes a very detailed history, I tell her that my niece’s name is Arielle (the end of the chit chat), and I am escorted into a room. Nobody seems to recognize the need for a kind word, to be reassured that I will be ok. Arielle searches the cabinets, but can’t find a robe for me to put on. She says, the doctor will be in, and gives me a sheet to cover my exposed body. My husband & I wait & wait. We wait for 2 ½ hours. I Google Dr. Blank, & find out that she is married to an attorney. According to my husband the firm he works for is a very high brow firm in NYC. Finally, in comes the best surgeon in NYC. She half heartedly apologized for being late. My husband says, well, you aren’t just a bit late; you are very, very late. She is very abrupt, bordering on rude, and dismissive. She knows she is good, and doesn’t have to explain herself. She says; let’s get on with the examination. Afterwards we meet in her office to discuss the findings.
She tells me that I should have my tubes, ovaries and uterus out. The uterus is not risk reducing; however, I can be put on hormone replacement therapy without the use of progesterone. If you have your uterus, you must take progesterone, which is apparently tricky. Good, we are in agreement. My husband tells her that he knows she is married to an attorney. She gets a bit defensive and asks how he comes to know so much about her. He says, we had 2-1/2 hours of wait time, we googled!
She tells us to stop and see the scheduling person. I will have surgery in October, because my husband & I are going to Hawaii on vacation in September. The woman takes my information and promises to be in touch to schedule the surgery. I never hear from this office again!
In the interim, I make an appointment with Dr. Lauren Cassell. She practices out of Lenox Hill Hospital. While in the waiting room, the doctor enters from a side door. She is carrying a large cup of coffee in her hands. She is dressed in a beautifully simple black dress. She is a beautiful woman. Her receptionist says to her, oh Dr. Cassell, I made you coffee. She says, oh Penny, you know that I don’t drink coffee!! That was it for me; it was love at first sight. This woman had a personality, she was funny & from all the research was a wonderful surgeon. We saw patients before us thanking her. She is the opposite of Dr. Blank. She is caring & kind.
She is also prompt, we only waited few minutes. She does her examination, and we meet in her office to discuss my options. I tell her that I have decided to have the mastectomy. I also tell her that I would like to have my reconstruction done without the use of implants. She asks about scheduling the surgery. I tell her that I am having my tubes & ovaries out in October by Dr. Stephanie Blank. She asks what exactly am I having done. I tell her that I am removing my tubes, ovaries & uterus. She asks why the uterus and I tell her it is for the HRT or hormone replacement therapy. She asks why I am having more surgery than I need, and I can’t answer that. I just don’t know why. Truly, my answer to her question is because the doctor said so. That is never a good answer.
She walks every patient to the front desk, & I am no exception, and tells Penny, her receptionist to call Dr. Oren Lerman, the plastic surgeon and make an appointment for me that day, since Steve & I travelled so far to see her, we might as well make the time to see her plastics guy as well. She also tells me that I should have a second opinion for the tubes and ovaries. She says she has two doctors she likes, one is female the other is male. She thinks I would prefer the female. Penny is instructed to make an appointment with Dr. Elizabeth Poynor the gynecologist as well.
We walk to Lenox Hill to see Dr. Oren Lerman. He calls my name and is so young that I can’t believe my eyes. We talk for about 2-1/2 hours. I get to feel implants and play with them until he takes them away. I tell him I would like to have my reconstruction done from my own body tissue. He says this can be done, and he explains the process. Basically, they take the fat, some veins and “stuff” (my word not his) from your abdomen and transplant it into your breasts. This will require a five day hospital stay in order to make sure that the veins & “stuff” are bringing blood supply to the outer tissue. Oh, I also had what is called “nipple” sparing surgery. Basically, in layman’s terms, I had my insides scooped out. Did I mention that the up side to this is that I would get a tummy tuck out of it? The tummy tuck makes the entire surgery almost worth it. I have had two children. I had stretch marks and flab. I always hated the way my stomach looked after the children. The thought of having a flat stomach without stretch marks, made the entire mastectomy worth it….well almost!
We proceed to Dr. Lerman’s examining room. I am told to remove everything, except my underwear. I was totally unprepared as he felt my breasts, and grabbed at my thighs and buttocks. I am so shy; I had to pretend I was somewhere else. He looks very intense, and then says, I have enough fat to do what is called a diep flap reconstruction. He is sitting on a stool that has wheels and after he tells me that I have enough fat, quickly rolls away. I ask him if any of his patients have hit him when he delivers the news that they have enough fat, he says no, never, why do you ask? I explain that I thought that perhaps he figured out that once he delivers the fat message he should quickly roll away before the patient strikes him. I am happy that I can have the diep flap surgery, and mortified that I have enough fat to do so. Then the piece de resistance, he pulls out a camera, pulls down a slim black screen and takes pictures. I was so wearing the wrong underwear for this. I had on a thong, but, if I had known there were pictures involved would’ve worn my panties that give me more ground coverage. I want to jump out his third floor window.
After Dr. Lerman, we go to Dr. Poyner’s office. She is a beautiful woman who is very trendy, tall & wears Christian Louboutin shoes; those are the ones with the red soles. This woman has a sense of style and she is brilliant. Her office looks like a comfortable living room. She doesn’t have examining tables, but rather they are chairs. You are given a cloth robe instead of paper. I knew she was my surgeon. She gives you the time and attention you deserve. I was a name, not just a number. She explains that she can take the uterus, and she does some special incision called “supra” something or other. I thought she was saying super, like a McDonald’s hamburger. Sure super size me! My husband, who understands every word realizes the doctor is saying “supra” and corrects me. I vacillate between taking the uterus or not. Just so you understand, the uterus supports the pelvic floor, I am told. I had no idea my pelvis had a floor. The uterus coming out can cause more trouble than if you were to just leave it in. The only advantage to taking it out is to treat the menopause. She finally says, let’s just take the tubes & ovaries, if you have issues with menopause, we can always go back in for the uterus. I am thinking, yeah, fat chance.
Did I explain that once they take your tubes and ovaries you are in what they call “surgical” menopause. Dr. Poynor went to great pains to tell me that she would do everything she could to curtail the symptoms of menopause. How bad could menopause be you wonder? Let me tell you, the worst part are the hot flashes. I think hot doesn’t adequately explain what happens inside your body. They should call them “blazing” hot flashes. You get so hot, it is horrible, and then you sweat and get cold. I always thought I would be one of those women who would do without drugs….well, bring on the drugs! I have to have a fan at my bedside and one on my desk at work. Then there are the mood swings, I don’t notice them, but my husband does.
A friend at work told me that in the dead of winter, when she has a hot flash, she takes all of her clothes off, runs downstairs to her sliding glass doors and throws herself against the glass, just to cool down. It made me laugh when she told me. You would do anything to cool off during one of those episodes.
So, the surgery is scheduled for 10/12/13 at Lenox Hill. Dr. Poynor prescribed me a valium to take the morning of the surgery. I wake up, take my valium and we drive to NYC. We get there at 6Am. Dr. Poyner arrives in what looks like custom made scrubs and heels. She looked beautiful, and I feel awful. Approximately two hours later, I wake up in recovery, 1/3 of my journey is over. Now for recovery, and onto the next surgery.
I schedule my mastectomy for 2/13/13. This is a bit trickier to schedule because you have to get both the plastic surgeon and breast surgeon on board for the same day. It is a 10-12 hour surgery. I am aghast that this will take this long, but assured by Dr. Lerman that he is the one who has to stand the entire time, I will be asleep. I love a sense of humor, it keeps me sane.
I will be an inpatient for 5 days, so Steve & I look for a hotel, so that he can be nearby. Finally, we reserve a room at the Surrey Hotel, which is a boutique hotel near the hospital. It is an absolutely beautiful room. I am unable to enjoy this beautiful room or the wonders of NYC because I am an absolute wreck. It is 2/12/13, & by tomorrow afternoon, I will be without my small but perky breasts.
We check in, and then we have to go to Lenox for a lymphscintigram. This is a test in which they inject a small amount of radioactive dye into your breast and then massage so that the dye is taken up. The doctor or technician comes in, the dye is in a metal case, and he is wearing thick gloves. I am curious as to why the dye if such a small amount of radioactivity is in a metal box, and he explains that it is just the rules. Anything containing a radioactive material is treated this way. He proceeds to inject the breast and do what he called a massage. The massage is painful. I ask him if he is married and he said yes. I advise that he not massage his wife’s breasts this way. He doesn’t know how to react. He is very serious. I am just relieving the tension that is building by the minute as my surgery draws nigh.
We go back to the hotel afterwards and I need a nap. I can’t think straight, I am an emotional wreck, barely able to function. I am just going through the motions. I know my husband is going to want to eat, so we go to a nice little restaurant nearby. Afterwards, we stop at D’Agostino’s Supermarket to get chocolate. My husband completely understands a woman’s connection to chocolate. I will need chocolate to help me in this journey. I can only eat until midnight. Dr. Lerman told me that I won’t be able to have caffeine for 6 weeks after surgery and no chocolate. This is practically a lifetime.
I also decided to go without a bra that day. I wanted to feel the fabric against my untouched breasts. I would probably have not feeling after the surgery.
I take an ambien after dinner, and I sleep. We wake at 5 and walk four blocks to Lenox Hill. I am prepped and waiting for Dr. Lerman & Dr. Cassell to stop by and see me before surgery. Dr. Cassell tells me that I am doing the right thing, that if she were in my shoes, she would do the same thing. I believe her and feel a bit better. Then, I see Dr. Lerman. He immediately sees that I am curled into a tight ball, & gives me a hug and kiss. He tells me I will be just fine. He marks me up, and says, I will see you in a few minutes.
Dr. Lerman’s part of the surgery is the longest, the entire 10 hours. I am told by his nurse Alex, that he plays really good music. My only instructions to him are, no classical music, I don’t want him sleeping on the job, nothing too raucous, I don’t want him dancing on the job either. I prefer my breasts to be in the same place, geographically speaking.
I meet the anesthesiologist around the same time. She is the kindest, most caring woman I have ever met. She tells me that she is going to put in the catheter while I am waiting for the surgical suite, so that once I get in there, she can immediately put me to sleep. I am thankful for her and my entire surgical team.
A nurse comes over and gives me the “hat” that will cover my hair, and tells me that it is time. You walk yourself to the operating room. I suddenly get an idea of how it feels to walk yourself to the death chamber. I lay down, and as promised, I am put to sleep.
I wake up after surgery and Dr. Lerman says, wait until you see how flat I got your stomach. I am happy, and go back to sleep. The next time I awaken, I am in the recovery room. It is white. I am by a column with a Monet painting on it. I don’t want to move. Dr. Lerman stops by and tells the recovery room nurse that they should give me IV valium. He tells me that this is for muscle spasm. I have a pain pump loaded with Dilaudid and at the moment not feeling any pain. My parents come and so does my husband. I just want to keep my eyes closed and sleep. I can’t speak above a whisper because I had been intubated for 10 hours. I tell the nurse that I am having pressure, like I have to go to the bathroom. She tells me that I don’t have to urinate because I have a catheter, she even shows me my catheter. This complaint goes on for hours. I decide that I am feeling muscle spasm, and try to sleep. I am not moved into my own room until 1am that morning.
I can’t wait to get into my room. I want another nurse, so I can complain about the feeling that I have to urinate. A nurse greets us at my new room, they exchange information, and finally, I am alone with this nurse. I tell her that I feel like I have to go to the bathroom. She checks the catheter, and sure enough it was not draining. She fixes it and I am a very happy camper. No more pressure. I love this woman!
The next five days are quite a blur. I had a compression bra on, and drains coming out of both breasts and abdomen. Not only did I have the drains, but I also had dopplers inserted into my body to monitor the veins and arteries in my breasts & abdomen to make sure they were supplying blood to my new breasts and abdomen.
I meet my day nurse & his name is Hillary. I ask him how he got a name like Hillary, and he says he is Scottish, how did I get a name like Evan. I tell him, my mother had a sense of humor!
He is wonderful and takes great care of me. My night nurse, Bella is also amazing. She is in my room every four hours with my pain drugs. I don’t have to ask, she has an innate ability to know exactly what you need and when you need it. I am lucky that I have them both.
The day after my surgery, Dr. Cassell comes in. She is wearing a simple black dress, reasonable heels and Chanel earrings (I am in pain, not dead). She looks at my breasts, and asks if I have seen them yet. I tell her no, and she tells me that I need to see how beautiful they are. I am not ready to see my newly mutilated body; I will need a few more shots of Dilaudid for this. She insists, and I look down. I can’t believe my eyes. My breasts are really quite beautiful. I don’t look mutilated at all. I feel elated.
Dr. Lerman comes in, and I am lying in bed. He asks, “What are you doing”? Ok, I am not a medical doctor, but I tell him, I think the medical term for what I am doing is called, “lying in bed”. He says, I see that, but you need to get up. No thanks, I tell him, I am quite good like this and have absolutely no interest in sitting up. It is painful to even think about. He says, you are getting up and proceeds to sit me up. I say, my, you are not a good listener are you? He agrees he is not a good listener. I really like this man!
It is time for me to go home. After a mastectomy, you have what are called JP drains in your breasts. Since I have had abdominal surgery, I also have drains in my abdomen as well. They are uncomfortable and they have to be emptied. Dr. Cassell called it “milking” the drains. You have to get all the fluid in the tubes, into the bulb “thingy” at the end of the tube. Then, you have to measure the fluid & write it down on a chart which the hospital supplies you with.
I can hardly walk. It is painful to walk. I am hunched over because of the tightness of the abdominal incision. Two strapping young men help me to the entrance door. We wait for my husband to pull up with the car. It is New York City, so as I am shuffling to the car, someone is honking at my husband to get out of his way. My hospital helpers yell at this man. I am grateful.
The ride home is excruciating, but getting up the stairs to the bedroom in my house is worse. I have to rest on the way up. My daughter has put a chair on the landing, so I can take a break before ascending.
I have a pharmacy of pills to take. I am started on stool softeners and laxatives in order to assist with going to the bathroom. Several days after getting home, I finally have the urge to go to the bathroom. Ok, if you have ever had abdominal surgery, or even a child, going to the bathroom for the first time after a procedure is very scary. Bravely, I get to the toilet, sit down and proceed to have the most horrible cramps that I have ever had in my life. I get a pillow & a small table to put my head on and proceed to scream & cry. My daughter comes in and she starts to cry. She calls my husband upstairs and he says, he thinks we need to call the ambulance. I want to take my shit, and get it over with. I say no, just leave me be. Finally, after a long & laborious struggle, my twin sons are born. I name them Jebediah & Jehovah, because anything that painful has to result in a baby right? It is over, the absolute worst part of all the procedures are done with; I have taken my first shit.
It is about then, that my caring husband, who thus far has been in charge of doling out my medications tell me that he cut my laxative in half. WHAT? Why? I take over the laxatives, I need them. I will never be without them again.
The day has come to get my drains out. We prepare to take the trip into the city. My husband, daughter and I pile into his BMW. We are on the Palisades Parkway, and my husband hits a pothole. He has hit this same pothole before. We have had several flat tires because of this pothole. I hate this pothole. We pull over, call my step son and ask him to take the spare car, meet us on the Palisades where we are parked and wait for the tow truck. He comes and we are off again. The plastic surgeon’s office says, no worries, just come on in.
Alex, Dr. Lerman’s nurse takes out the drains. I have turned the proverbial corner. No drains, what a great feeling. Home again for another month. I will get better with each day. Life will soon be good again.
Dr. Lerman releases me to return to work at six weeks. I think I need another couple of weeks, but he insists. He prescribes some physical therapy in order to get the range of motion back in my arms. This is standard procedure.
I return to work and start on my physical therapy. The therapist is a very pleasant blonde woman who appears competent. I come in, she puts a hot pack on my shoulders and then I get an amazing massage. That takes about 20 minutes of the hour that I have scheduled. Jessica then teaches me some stretching exercises and sets me off on my own. One of my favorite exercises is with a dish towel. I actually go to the wall, and stretch using the towel. I am now sure that she was actually using me to dust the facility. I complain of ongoing pain especially in my left shoulder which goes largely ignored. It is painful to do just about anything. One day Jessica says to me that my left arm is frozen. Ok, that doesn’t sound too bad, I mean I am in physical therapy, and she will fix this.
I am getting ready for the second part of my reconstruction. I will be having a liposuction with fat injections into my breasts. Amazing right? I not only get a tummy tuck, but I get a liposuction as well!! I have my preoperative testing on 6/11/13. My physician always does a range of motion evaluation on my arms. He says to me that my left shoulder is frozen. I know this because my physical therapist told me so. The doctor tells me this is ridiculous, how did I get a frozen shoulder when I am in active physical therapy? Please learn from my experience! If you have been in therapy for weeks and you are experiencing ongoing pain and limited range of motion, get another therapist. He gives me a prescription for more physical therapy and sends me to a therapist who is a sole practitioner.
It is 6/14/13, and once again I am prepared for surgery. My husband & I report to Manhattan Eye & Ear at 6:00am. What a nice hospital, it is very posh! I am prepped and ready, once again for the last phase of my reconstruction. Dr. Lerman comes in to mark me up. I tell him that I just got onto the scale, and I want him to suck until I am inverted. He smiles and says that liposuction is not a weight loss surgery, rather it is a recontouring. I wish I could have a home liposuction unit, but they are not available yet . My surgery is scheduled to take 3-1/2 hours, it ends up taking six. No complications, just a surgeon who is a perfectionist.
Time to start physical therapy again. I meet Mitchell Korn. He is absolutely wonderful. He tells me that he will get me back my range of motion. He tells me that I will be 98%. He works with me. I don’t do any exercises in the office; rather he tells me that I am to do them at home. He uses hot packs, tens units, ultrasound and manual manipulation. He sees me a steady 3 times per week. He is a miracle worker. He is doing what the other therapist should’ve been doing. I will appreciate him for the rest of my life. He completes my dream team.
Today, I am almost a year post removal of my tubes and ovaries. Hot flashes remain a force to be reckoned with, but, I am dealing with it. My breasts, well, they look amazing. You can hardly tell that I had anything done.
Tobey Young, was my information angel. She guided me through my journey with encouragement & kindness. She had been there herself. She never lied or tried to make the journey a bed of roses. I am so lucky to have met such a wonderful woman & have her in my life. In every way, she is a true friend.
I have to thank my husband who supported me through every step of my journey. He held my hand and has my heart. He walked with me when I was cursing at him because it hurt to walk. He fed me my meals, and was with me every day in the hospital. I am so lucky to have a man like that in my life.
I am a previvor! I am told that I am a brave woman, but I don’t think so. I think my sister Darcy is a brave woman. I just did what I had to in order to avoid the terrible cancer plague. I am happy that the surgeries are in my rear view mirror.
I’m BRCA1+ and a performing artist. I turned my experience into a one-woman musical called “The Mutant Diaries: Unzipping My Genes” (http://mutantdiaries.com) that I thought you might be interested to know about. Below is a short blurb and a link to info, video, etc. The show was just released on DVD and is being reviewed for the NSGC newsletter and the Journal for Genetic Counselors. I’m hoping it can become a tool for both educating and encouraging women with genetic mutations and cancer as well as a good view of the patient perspective for professionals. I thought your followers would like to know about it.
The Mutant Diaries: Unzipping My Genes
Superpowers stem from incredible sacrifices in The Mutant Diaries: Unzipping My Genes, a feisty and frank solo musical from performer/composer Eva Moon. Upon learning she had the BRCA genetic mutation, which spikes the risk of breast cancer to 87% and ovarian cancer to 55%, Moon had to make a life-altering choice: remove her healthy breasts and ovaries or face terrifying odds of cancer. Live music, warmth and generous amounts of humor are all expertly woven in this story of her decision — and the extraordinarily empowering results of that choice.
After my last blog post:
I asked for further suggestions from our twitter community #BCSM & #BRCA.
@NancyCastleman was very helpful. She suggested that I take the blog post further by asking for professional help from a genetic counselor. I did and here is what transpired:
I contacted genetic counselor, Erin Houghton, MS, CGC Associate Director at the Ferre Institute in Binghamton, NY. (https://www.ferregenetics.org/ourstaff.php)
I am going to copy and paste her response here for all to see. It is very important that those of us with the BRCA gene mutation in our family make the best decisions possible for ourselves and our loved ones.
With Erin’s permission, here are the answers to my questions!
“It is important for people to know that the vast majority of all cancer is sporadic in nature, meaning that someone did not inherit a susceptibility to cancer but instead changes happened to their cells over time (age is the greatest cause of this) which led to cancer. However, in 5-10% of cases, there is a hereditary susceptibility, meaning that an individual was born with a gene mutation, which can be inherited from either their mother or father, which places them at an increased risk to develop cancer over his/her lifetime. How does someone know if they are in this 5-10%? We look for clues. Some of those clues include: cancer at a young age (typically cancer before the age of 50), multiple individuals in a family with the same or related cancers (ex. breast and ovarian, ovarian and colon, uterine and colon, etc), multiple primary cancers in one individual, bilateral disease (ex. cancer in both breasts), and certain ethnicities (ex. Ashkenazi Jewish individuals have an increased risk of carrying a BRCA mutation). If a person has a personal and/or family history that fits any of these clues, they may wish to speak with a genetic counselor. Genetic counselors are specially trained health care professionals with an expertise in analyzing a person’s personal and family medical history, assessing risk that the disease in the family is hereditary, and helping that individual/family understand that risk and what testing options are available. Genetic counselors also help people sort out the psychological concerns that may be an issue concerning whether to pursue genetic testing. It is important to know that seeing a genetic counselor does NOT obligate someone to have genetic testing; instead seeing a genetic counselor will help someone make an informed choice about whether genetic testing is right for them, if they are even eligible. You can find a genetic counselor in your area through the National Society of Genetic Counselor’s website at www.nsgc.org, using the “Find a Genetic Counselor” tool. In terms of your question regarding how strongly to urge family members to have testing—genetic testing is a personal choice and it is not uncommon for individuals in the same family to have different opinions about whether they want to know about a hereditary risk. If someone is unsure about how genetic testing may help, I often discuss with my clients that having genetic testing can really be a source of empowerment. While it is rarely happy news to learn that you and your family have a hereditary susceptibility to developing cancer, knowing that information can be empowering. It allows those with cancer to adjust their treatment choices to fit their risks, and the “previvor” options for increased cancer surveillance and perhaps medical options, such as preventive surgery, to greatly reduce cancer risk. Lives can be saved with greater knowledge and the ability to personalize one’s medical care. The family history of cancer that was seen in older generations may be changed in newer generations simply by learning about hereditary risk and taking steps to prevent cancer. This is how I would communicate how genetic testing can help to family members; pressuring someone to have genetic testing may backfire, but encouraging your family member to seek more information (such as meeting with a genetic counselor) so that they can make an informed choice will help.
I hope I’ve answered your questions adequately! Thanks for reaching out and let me know if I can be of further help!
Erin E. Houghton, MS, CGC
124 Front Street
Binghamton, NY 13905
My question: If someone tests negative for the brca gene but still has a family history I thought their risk becomes the same as the rest of the population & they are safe. I now hear they are not. What is their risk?
Erin’s response: As for your question—there has been some research to suggest that women who test negative for a familial BRCA mutation still have an increased risk for breast cancer. This may be due to the presence of modifier genes that in and of themselves confer an increased risk for cancer (but in combination with a BRCA mutation dramatically increase risk). I’m not certain that risk is quantifiable yet because studies are limited. One study found this increased risk with BRCA2 mutations. Individuals should talk to their doctors about an appropriate screening plan.
One other thing I wanted to mention about the importance of seeing a genetic counselor—there are many genes that confer an increased risk for breast or ovarian cancer, not just BRCA. This is why it is important to see a genetic counselor; some medical practices are ordering BRCA testing on anyone and everyone who reports a family history of cancer, when other genes should have perhaps been considered first. A genetic counselor has expertise in sorting this out. A negative BRCA result also warrants consideration of other cancer risk genes.
Another great post came to “twitter” after my last blog post: Thank you Amy- great share!
by: Amy Byer Shainman @BRCAresponder 7:10 pm – 12 Mar 14
If anyone else in our community has more comments or questions feel free to email and we will do our very best to get them answered.
Be well you all.
I’ve been mulling over this blog post for some time. Having hereditary breast/ovarian cancer and a positive mutation in your BRCA gene is such a hard burden that leaves you with conflicting choices. What to do…what to do…
I have heard so many times that it can’t happen to me, my family. I’m only 20…30… Years old! Well, I hope to G-d that it doesn’t happen to you or yours but you are totally kidding yourself if you think it can’t. IT CAN HAPPEN TO YOUR FAMILY… IT DOES HAPPEN!!!
I get this question all the time. Should I get tested? Should my children get tested? What about my cousins?
When I found out that I had the BRCA mutation I went for genetic counseling.
Genetic counselors take all your test results plus your family history and can give you a range of risk designed JUST FOR YOU! I highly recommend that if you decide to have genetic testing that you do it with a genetic counselor just for this reason. Then and only then can you make the best decision for yourself.
The first question that I would ask you is: Do you want to know? If you have the testing and you find out that you test negative you will certainly be doing the happy dance, but if you test positive would you consider prophylactic mastectomy; oophorectomy; possible hysterectomy; vigilance; preventive drug therapy? Is finding out going to force you to hurry up and have a family?
If you consider mastectomy, do you want reconstruction afterwards? What type of reconstruction would you choose? Can you handle the scars? Are you single? Will you have naked issues?
Oophorectomy/hysterectomy— have you had children yet? Are you ready for menopause and all or some symptoms that menopause brings? Hot flashes; fatigue; concentration issues; sex drive issues; vaginal dryness; heart disease; dementia; stroke; osteoporosis? Not everyone suffers from these issues- you could have NONE or SOME.
It seems that every generation of BRCA positive people get diagnosed earlier and earlier. Personally, I would choose to be proactive than reactive. Dealing with cancer, is forever. Dealing with prophylactic surgery is not fun, but after you heal, your risk is greatly reduced.
I would certainly share as much information about breast/ovarian cancer with my family and extended family to educate them and put the scare in them, but ultimately the decision is theirs.
Be well everyone.
PLEASE DISCUSS EVERYTHING WITH YOUR DOCTOR AND GENETIC COUNSELOR to make the best decision for YOU.