FLAG Network Club Store Foundation
Home / Articles / Health / Are you a Previvor?

Are you a Previvor?

A previvor by definition is a word used describe those who have a higher risk for cancer due to close family history or due to certain genetic mutations (like the BRCA1 or BRCA2), but do not have a cancer diagnosis. According the non-profit organization FORCE (Facing Our Risk of Cancer) Empowered, they coined the term previvor 11 years ago. A frequent contributor to one of their messages boards stated that they felt that they “needed a label”, and hence the term was chosen to identify those living at a higher risk for cancer. FORCE goes on to state that the previvor community has its own unique needs and concerns separate from the general population, but different from those already diagnosed with cancer.

Like those with cancer, previvors can go through a range of emotions that can be debilitating. Some chose to deal with these emotions by having elective surgery as a way to prevent cancer. In the case of breast cancer, that would generally be a mastectomy, or a prophylatic mastectomy as it’s called. This is a highly controversial choice and many wonder why this would be necessary. Critics ask why have a perfectly good body part removed until it absolutely has to be. Besides, many insurance companies won’t cover this procedure. Critics also say that just because you have a close family history of cancer or have a genetic mutation, doesn’t mean that you will be diagnosed with cancer. In addition, it’s possible to still get cancer in the area that was surgically removed. Physicians may even recommend just getting screened more often. However, for the many who chose this path, this is the only and correct answer for them. Prior to having their breasts removed, many have received genetic testing and have received a positive BRCA1 or BRCA2 result. Most all physicians recommend that previvors receive counseling prior to surgery, just as would be standard before receiving genetic testing.

Not all previvors chose surgery. Some chose genetic testing only, just as some of those who are diagnosed with cancer do. Genetic testing can help a person know their potential risk for cancer, but at the same time, not everyone is a candidate for genetic testing and insurance may not cover the cost of this test. Genetic testing only determines if you are a carrier of potential cancer genes, it does not determine if you have cancer. Some previvors feel that the cost of the test outweighs anything else.

Are you a previvor? If so, have you chosen to have an elective mastectomy? If not, why? Even if you’re not a previvor, how do you feel about those who have had elective mastectomies in order to prevent a cancer diagnosis? Let’s discuss and remember to respect all points of view! 🙂

References: www.facingourrisk.org, www.webmd.com, www.about.com

Check Also

colleens-story-breast-cancer

Colleen’s Story (Breast Cancer)

It began in August of 2013. My faithful pup kept coming and pushing on my …

32 comments

  1. Ooh, tough question, but I would have to cross the bridge when I got there. I wouldn’t want to have surgery unless it was a last resort, but the “C” word is scary and I could see people going to all extremes to never have to hear it. Big hugs everyone!!!

    • My father had just been diagnosed with Breast Cancer and had the genetic testing done and was positive for the BRCA2 mutation. I had the screening done and was recently diagnosed with a positive BRCA2 genetic mutation as well. A preventive or prophylactic mastectomy is a personal choice, to some it may seem extreme. I did choose the BPM and oophorectomy, and my reasoning was this.

      The increased risk 50 to 80% of developing breast and or ovarian cancer was too high for me to wait it out. And in the end if cancer did make an appearance, the end result would be the same, except I’d have cancer and no breasts. Now I just have no breasts.

  2. I am a proud previvor. My aunt was diagnosed at 30 & fought three battles against breast cancer. First round had one breast removed, second had the other breast removed, & third showed up in her chest wall. She lost her third battle in her 50’s. My sister was diagnosed at age 27, my cousin at age 24, my best friend’s sister at age 26, & three years later, my best friend at age 26. She is the most recent, as she was just diagnosed in early June…an hour after her sister passed from the disease…at age 29. What kills me about my best friend is that it could have been prevented. That’s what being a previvor is all about…saving your own life via prevention of cancer.

    When my sister was diagnosed, she was fortunate enough to live on the east coast & have super educated & up-to-date doctors who knew about the BRCA gene mutations. (They are relatively new, having only been discovered about 10 years ago, I think. I swear some of us know more about this stuff than some doctors I’ve met.) One of her doctor tested her & she was positive for the BRCA1 mutation. Because the family history is on my father’s side of the family, both he & I were tested. I sort of thought my sister got the rotten deal on this one (as I have had other health problems & the chances are 50/50 if only one parent is a carrier), but we were both positive. So, my father was the carrier. Shortly after my sister’s diagnosis, my father was diagnosed with & lost his far-too-short battle with cancer. Though it was not breast cancer that took my father’s life, men CAN get breast cancer.

    After learning I have the BRCA1 gene mutation (which, yes, requires genetic counseling), I signed up for a clinical trial that kept me “safe” for a year. After that, I tried to closely monitor myself. It’s difficult for a young woman, because our breasts are dense & can be lumpy & there are often changes due to hormones & such that we just have to familiarize ourselves with so they don’t freak us out. But eventually, I started freaking out. So, I stopped doing self exams because I was terrified every time that I had found something. I lived in that denial for about a year and a half. My sister pushed for me to do the surgery & presented information & personal accounts from friends she’d met in support groups, but I also had people in my life who told me that having the prophylactic mastectomy was all sorts of bad things…crazy, against God’s plan, was mutilating my body, would make it harder to find a husband, etc. So, I didn’t do anything. 

    In late 2009, at the age of 29, I found a lump in my left breast that turned out to be nothing. However, it shone some light on the realities of the BRCA gene mutation I have & prompted me to make one of the biggest decisions of my life. I’m a strong girl, but there was no way I was signing myself up for a battle with cancer! So, in early 2010, I took preventative measures & had a bilateral mastectomy. Breast reconstruction began immediately & is almost totally complete (just need to get color tattooing to fill in my reconstructed nipples). Because being BRCA1 positive means my risk of ovarian cancer (the silent killer) is increased to about 50%, the next step will be an oophorectomy (removal of the ovaries). Doctors recommend this surgery for women with the BRCA1 gene mutation be done around age 35, with close screening until then. A transvaginal ultrasound is recommended once yearly, if not every 6 months.

    Some may think my decision to be drastic, but to those people I say, “Well, I’m here. So it’s worth it.” I reduced my risk of breast cancer from around 85%-90% to around 1%. It’s been almost a year & a half since I started this journey & I’ll be 31 this summer. I’m becoming more & more comfortable telling people about what I’ve done & feel an obligation to educate & reach out to others. I saved my own life. People in my position should know that they can do the same. 

    Had my best friend been tested two years ago, she could be where I am today (if she chose to make the same decision). Instead, she has a huge tumor that has already spread to her lymph nodes (triple negative cancer, the kind most BRCA patients get, is very aggressive) & I recently shaved her head so she didn’t have to experience the trauma of her hair falling out during chemo. She will lose her hair (all of it, by the way…leg, pubic, underarm, eyebrows, eyelashes, etc.), likely her finger & toenails, & once chemo is done, she will lose her breasts. Because her cancer has already spread to her lymph nodes, she stands a likely chance that she will end up with lymphoma, as well (like my sister). She was finally tested for the BRCA gene mutation & did indeed test positive for BRCA1. This informs her & her doctors on how to proceed. For example, she will have a bilateral mastectomy instead of a lumpectomy or single breast mastectomy. This cancer likes to travel & the likelihood of it attaching again & growing (or “coming back”) is high. If a person has the same cancer twice, the likelihood of it taking his/her life the second time is increased by 50%. Why risk it?

    Knowledge is power, people! Check yourself, check your partner. And if you have a strong family history (or even if it’s just one person, like my best friend whose sister was the only one, but was diagnosed at a YOUNG age), I recommend getting the genetics test. And if you have trouble with your insurance or doctors saying things are unnesseary or you are too young…FIGHT. I did a lot of fighting, even knowing I have the gene mutation, to get to where I am. I can also acknowledge that it’s not for everyone. My cousin who was diagnosed at 24…her older sister is my age & hasn’t been tested (for whatever reason). And other women on my dad’s side (including the daughter of my aunt who lost her final battle with breast cancer) have been tested & don’t have the mutation. Many of my male relatives still need to be tested. First, because men CAN get breast cancer. And second, because if they have children, there is a chance they will pass the gene mutation on to them. And parents should know that, so they know what sort of care to provide their children.

    I’m what’s called a previvor. And I’m a proud previvor. There is a huge community of us who have faced our risk of cancer, been empowered by information, inspired by the stories of others, & told cancer exactly where it can go! 

    I hope sharing my story has been helpful. I am more than happy to answer any questions, share photos of my experience, or simply talk to anyone who is BRCA positive, knows someone who is BRCA positive, thinks they might be BRCA positive, or is simply interested in this topic. My name is Sarah & I can be reached at proudprevivor@gmail.com.

  3. I, too, am a proud previvor. My maternal grandfather’s side of the family now has seen BC in most of the women for two generations. I am in the third generation and the cousins are widespread so the numbers aren’t all documented yet. My mother is a two time survivor. My aunt (her only sibling) is also so survivor. I have one sister and three female cousins. One cousin had DCIS. I had ADH. Another cousin is doing the every six month watch because she has had abnormal mammograms.
    From age 35 to age 45 I had three sterotactic biopsies after multiple repeat mammos and ultrasounds. From age 45 to 48 there were no changes, but at 49 I had developed microcalcifications that were suggestive of DCIS.
    The stereotactic biopsy showed Atypical Ductal Hyperplasia without clear margins. ADH is benign, but can be precancerous. I had the option to follow the path my mother did-biopsy, lumpectomy, mastectomy on left side, tamoxifen for 5 years, 6 years clear, then BC on right side, mastectomy and arimidex for 5 years. This path incudes mammos every six months or more and lots of worry. Not for me! I am recovering from my prophyllactic bilateral mastectomy. I had minor complications that resulted in my having 4 surgeries in 5 weeks. This has not been easy. I was warned that recovery would be tough, but I think the alternative would have been tougher. Chemo scares me- and I eally didn’t want to have to go there. As I prepared for surgery I wondered if I would be considered a survivor. Would my fight be diminshed by not having been diagnosed with breast cancer? Would “genuine” survivors feel that I was among their ranks? My husband challenged me with this- if I am fighting to prevent cancer and save my life, is it any less of a fight? As I made peace with all of that, I heard the term “previvor”. Yahoo- I have a label! I’d conviced myself that it didn’t matter, but it does to me.
    So, knowledge is power, I have claimed my power and proudly display a pink ribbon tattoo on my inner ankle. The words “Fight Like a Girl” surround the ribbon, and are my battle cry.
    Whatever path you choose, be true to yourself and embrace your power to fight like a girl too.

  4. Im at ahigh genectic risk and have a strong family history of breast cancer. When I had two biopsies come back as ADH the doctors advised me to have a prophlatyic mastectomy. I had one in April and even though Ive had complications with my reconstruction I havent regretted my decision once. Im proud to say that Im a previvor!

    • Thank you for your post. I have the same diagnosis, ADH, and am considering a prophylatic mastectomy. I have a strong history of cancer in my family, although only one Great Aunt with breast cancer. My gut fealing is to have the procedure. I am relieved to hear you say that you haven’t regretted it. I am concerned about complications with the surgery and then wishing that I had not chosen to have it done. May I ask what type of reconstruction you had? Again, I thank you for sharing. I have been scouring the internet for information.

    • Thank you for your post. I am 32 years old and am BRCA2 positive. Due to a high family history, I decided to have a prophylactic double mastecomy is May. It was determined that I had abnormal cells in my right breast (discovered when the tissue was biopsied). Unfortunately, I have had many complications post mastectomy and am still awaiting TRAM reconstruction in November. I am encouraged by your post that although you have had complications with your reconstruction, you still do not regret your decision. Thank you.

  5. Yes I am a previvor. My mother passed away at 40 from breast cancer, her sister passed away at 45 from breast cancer and their mother (my maternal grandmother) passed away at 54 from breast cancer. I have been getting mammos since I was 31 because of the extensive family history. Just this last July, I had a mammo and calcifications were discovered. They did a needle biopsy which came back with ADH and LCIS. I then had to undergo a wire localization and wide excision biopsy to remove the abnormal tissue and also to do another biopsy. They found only the ADH and LCIS, thankfully. I do need to add that I was tested for BRCA1 and 2 mutation in 2004, which came back negative. Mom, Aunt and Grandma never had the chance be tested so we do not know if they were positive. When I talked to an oncologist regarding the ADH and LCIS diagnoses, she did not even offer a preventive mastectomy. To be honest, though, even if it was offered to me I would not do it. They are going to monitor me very closely. Switching off between MRI and mammos every 6 months. I really feel that this is enough for me. I mean if they do find cancer, it will be a whole new ball game for me. I do not think I would hesitate then to undergo mastectomy. I really like my boobies and want to keep them unless cancer does develop. I do respect other women if they make a decision to go ahead with preventive mastectomies. It is very understandable.

  6. I am proud to say I am a Previvor. It will be one year in November 2011 that I chose to remove both breasts to live.. I went from a 90% chance of getting breast cancer down to less than 5%. My genetic testing came back inconclusive.. I was the only female on my dad’s side in my 40’s that had not yet had breast cancer… Both grandmothers, aunts, cousins… I was diagnosed in 2009 with an extremely rare tumor in my breast that scared the bejesus out of me.. At that moment I becase afraid for the first time in my life… I have never had a second where I regret my decision.. I look at my husband and stepson and thank me for being alive… because I needed to believe in myself only to get through this.. I was extremely luck where I had absolutely no issues what so ever.. My surgery went smoothly as did my reconstruction.. It amazed me each and every day how my body survived the loss and gained strenght each day.. Of course emotionally it was difficult and I am proud to say that each day when I look in the mirror, and I am reminded by my scars that …. I am alive!

  7. I am a 36 year old woman who chose to have a prophylactic double masectomy after being being gentic tested. I had a inconculsive mamogram. I also had an annual physical which the doctor found a mass on my right ovary…which lead to OVA1 and Pet scans and seeing a Oncologist.
    The gentic counseling and the fact that my mother and sisters have had been diagnosed or dealt with biopsies…helped my decision.

    I had grown up watching my mother diagnosed in early thrities lose both breasts, one at a time.
    She went through rounds of chemo, lost her hair and became this tiny fraile woman. I lost my childhood.
    I was the oldest of three daughters and the caregiver. It scared me…that my body could turn against me.
    When I was told I may have ovarian cancer and that with surgery and HRT -I could develope breast cancer…I began to wonder how I could perserve my childrens childhoods.
    It was the most difficult decision…luckly the tumor on my ovary and the thing…in my breast came back boarderline…the cells had been changing but not a full stage I…I would not have to have chemo.

    The pain after my masectomy was difficult. There were nights I could not sleep. I prayed to god to just be done with the burning and stretching of the expanders…there were moments that I second guess myself…But I had to remember what my Focus was: MY DAUGHTERS and LIFE

    After 3 months i had my implants in and they were fine…untill they became constricted, the scar tissue from the masectomy was too much and the implant began to distort, plus the animation (movement).
    I had no skin or fat to camaflouge the implants and so I would see the implants move or float around when I excerises, laid on my back. It was a hard 3 years of dealing with distorted boobs and taking HRT and Tamoxfien. I had began to lose some of my hair (shedding excessively) and the menopause was horrific. Due to the mesectomy I loss feeling in my left arm, down into my hands. I had to quit working as a hairstylist because lifting my arm would cause the implant to squeeze out into my armpit and than the muscles would become numb…pins and needles like.

    After 3 years I decided to look at new options to correct my breasts and so I found Dr. Maurice Nahabedian at Georgetown University. He is the best doctor in the United States. He handles difficult cases and writes and lectures plastic surgeons around the country…my insurance happen to cover him!!!
    That was a true miracle for me.

    At my first consult I told him how long it took to get to that day and what a journey. We both agreed to have him perform a DEIP Flap…july 26,2012. I love my breasts now…and I got a tummy tuck as a bonus! His staff and the hospital were wonderful with my care. I have no complications other than some recovery pain. My breasts are symtretrical and soft. They look like breasts. I have regained some of the functioning of my arm. He removed a lot of scar tissue which allows my arm to move unhindered.
    I am waiting for my 3 month follow up to schedual a minor cosmetic “tweeking” and nipple reconstruction.

    My daughters have their mom…despite a few minor set backs. That is why I chose to have my masectomy and omphrectomy. Thru it all my daughters have seen me empowered, informed and courageous…They have learned new ways to eat and excerise to stay healthy and to not fear their bodies.
    I reduced my chances from 98% to 1% and have quality of life…that is a life worth living!

  8. YES! I am BRCA 1 positive and had a double prophylactic mastectomy as well as had both ovaries and tubes removed at the age of 33. Now almost two years later no regrets except i miss my hormones! My mother had breast cancer twice and my grandmother once so my family is no stranger to this terrible illness! I do feel somewhat “lost” in October, wondering where I fit in and how my story fits… am a survivor.. well not really, but my scars tell a story that I don’t really know how to classify 🙂 I count my blessings everyday that I had the knowledge to make the choice and prevent my children from watching me battle cancer.

  9. Please feel free to visit my blog to learn about my preventative mastectomy and reconstruction! It’s great to see such a community of women taking control of their health 🙂

  10. My daughter just passed away from stage 4 Triple Negative breast cancer. She fought a 14 month battle. She tested positive for Brca1 and then my other two daughters were tested. My oldest daughter was positive and the youngest one was negative. My oldest daughter chose the preventive surgery and had the prophylactic mastectomy and hysrerectomy. Even though she has had minor complications she does not regret her decision. The sad part is that relatives on her dad’s side of the family had had breast cancer and didn’t tell the doctors there was a history of breast cancer and were never tested so we could have known and saved my daughter’s life. Her cancer was in her right breast and lymph nodes and had metastisized to her liver. She under went chemo and was given the results of being in clinical remission only to find out a month later that she had cancer cells in her spinal fluid. She had to have a shunt put in her head the drain the excess spinal fluid to her abdominal area and a port to administer chemo to her spinal fluid. She went thru chemo again and was given the results that no more cancer cells were present in the spinal fluid. About 2 months after that she found out she had cancer cells in the cavity of the cerebellum. She had radiation to the brain and then more chemo. All the chemo and medication to counteract the results if chemo caused her liver to enlarge and then the cancer came back to her liver. She went through 14 months of hell fighting for her life which could have been preventive had she known that Brca1 ran in her dad’s family. I urge anyone who has a history of breast cancer in either side of their families to have the test. Even without insurance, the cost of the test is minimal compared to the cost if fighting cancer and losing your life.

  11. I am a 52 year old woman with a strong family history. I tested positive for brca2 in April of 2014. In August of 2014, I had a preventative double mastectomy. My pathology report came back clear. I am now waiting a three month healing period before I start the reconstructive process. I feel I made the right decision for me. I am single and do not have anyone that could go through this with me. The emotional upheaval has been really tough but I’m hoping through my faith and the wonderful group of ladies that I work with, this too shall pass. My first reconstructive surgery is in eight weeks, a bilateral latissimus flap procedure with expanders and implants three months later. I will then have my ovaries removed.

  12. I am BRCA 2 positive, and my bilateral mastectomy is in seven days. After I heal from that, I will be having a bilateral oophorectomy.

    I am 22 years old, and I am terrified.

    I watched my mom die of breast and ovarian cancer. After her husband died of bronchiolitis obliterates, I dropped out of college and moved home to be her primary caretaker. I don’t personally know any 20 year olds who have bathed, dressed, administered medication, and hand fed their parent. After she died I lost my sense of purpose.

    Eleven months after my mom died, at the behest of my father, my sister and I were both tested. She was negative. I got the unlucky draw.

    I don’t want my loved ones to have to watch me shrink and shrivel away from a disease that is encoded into my DNA, so I’m choosing to have both surgeries early-on. I know it will reduce my anxiety once it’s over.

    But right now? I’m terrified.

    And without my mom, I feel so alone.

    • Kinsey, I also am BRCA2 and lost my mother to ovarian and breast cancer. She was 55 the age I am now. In fact had my oopherectomy on my birthday October 31st, a few weeks ago. I am scheduled for my bilateral mid December. My daughter was just tested last week and we are waiting for the results. I can’t say not to be terrified there were times I was frightened but it was from not knowing facts and mostly worried I had cancer. Since all my tests have come back clean I have not doubted my decisions in fact I feel like I won the lottery. How often in life can you take such control and have a plan. Life is like a game of blackjack now you can play with seeing your cards. Be strong, take control and be true to your feelings. I wish you the best and know you are not alone and you are in good company.

  13. I recently discovered that I am positive for BRCA 1. I am 25 years old, and I’m not sure what to do. My mom is 54 and has never been diagnosed with breast cancer, but she carries the gene. They say the risk is only 50% that you will inherit the gene, but my mother has three sisters who all carry the gene as well. So far, all of my female cousins have also tested positive for the gene. My mom is currently scheduled for a mastectomy in December. My husband is encouraging me to also remove my breasts as a preventative measure (he doesn’t want to lose me to cancer), but I’m not sure what to do. I haven’t had any children–and to be honest, this may factor into my decision about having children or not having children. I don’t want to take risks with this gene mutation, but at the same time, I don’t want cancer to make all my life decisions for me. While I think it’s important to be knowledgeable regarding the risks, I wonder if I should have waited a little longer to find out. I do really appreciate the information and stories on this blog. Thank you for sharing.

    • Hi Margaret! My name is Christy and I also tested positive for the BRCA gene mutation. In 2009 (when I was 28) I had a double mastectomy with reconstruction. It was a scary choice, but the best thing I’ve ever done. It sounds like your husband is supportive which is awesome! Mine was supportive too. Best of luck with your decision!

    • I am BRAC 1 positive. I had chose to do the surgery. My reasons I just got married 2013, found out Dec. 27th, 2013 about the BRAC, and learned I could end up with another cancer because how my body was behaving. Did my first surgery to fix the first cancer related possible problem. Did the 3D mammogram. It could not tell me anything. Went in for my 3 month follow up to my first surgery.. Found a pucker that was not there 6 weeks before. Decided with my husband who was deployed to do the surgery. May 30, 2014 was the date set and I just finished my last part of the surgery Dec. 12, 2014. I lost my aunt to cancer (genetic) two days after my surgery in May. She and my family history of cancers (both side) why I decided to do it.

      Side note: My daughter tested negative for the BRAC1. I told her to retest in a few years. She is 19. There is that 50/50 chance you will not pass it. Has your husband got tested? Males can carry the gene too.

  14. I am a previvor who is currently very confused about what to do. I’m 49, have dense, firbrocystic breasts. My sister was diagnosed at 47 with triple negative stage 4 cancer. She lost her fight at the age of 50. She was BRCA 1 and 2 negative. We found out that my mother’s sister and both of her daughters also had breast cancer and are survivors. They are also BRCA 1 and 2 negative. I am also BRCA 1 and 2 negative. I feel like I am a ticking bomb and developing cancer is a “when” and not an “if” I get it. At times, I have questionable mammograms, which warrant ultrasounds. Everytime this happens, I am a wreck. I’ve spoken with two different surgeons and they both discourage prophylactic mastectomies. The second surgeon discouraged mastectomies but said she would do a complete hysterectomy. That confused me even more. Any words of wisdom, guidance, etc. will be greatly appreciated.

    • My situation sounds much like yours. Same age but am brca2 positive. I had the complete radical hysterectomy done by a gyn oncologist. She took everything complete, ligaments, tissue surrounding by 2 cm, pelvic washing, pathology on many pieces of what was removed. Good decision! I feel better, and the menopause has been very tolerable. Advice though….do not plan to bounce right back….took 7 weeks then didn’t feel completely well for about 4, 5 months. And do not have anything in your vagina for 10 to 11 weeks!! 6 to 8 simply isn’t enough and the risk of opening the sutured area is major. I feel like I bought a little time on my boobs. Having rigorous checks though. Probably going to take that plunge within a year. Dread it but don’t want cancer if I can help it either.

  15. I am at 25 year old who is BRCA negative WITH every woman on both sides with breast and ovarian cancer. My mom is the only one still alive. I got my first biopsy when I was 14, I have 3 metal markers and I got my first mammo at 24. I am a previvor. My surgery for a bilateral double mastectomy is in 24 days. I have chosen diep flap reconstruction because I have seen the horrific sides of implants. I am very adimit about my choice. I have a 7 year old who I refuse to lose her mother. Its just a matter of time. All of our cancer is estrogen driven and I got a period at 6. I am terrified of looking like Frankenstein and not looking like a woman anymore. . but cancer is more terrifying than that. But o would be lying if I didn’t say I was worried. I love my doctor and I trust he will do wel . . I wish more woman knew they dont have to wait to get the mighty c word… Take charge. Change your fate. Anyone else have a diep flap . any words of advise or wisdom about how you felt or what could help with my anxiety. Thank you !!

    • Natalie, I read your story and I am wondering how you are doing. I recently found out I have the BRCA 1 mutation and I am leaning towards having a hysterectomy and mastectomy with a flap reconstruction. Would love to hear about your experience. ThanKshatriyas, Christine

  16. I am a 31 yr old about to get married and recovering from a double prophylactic mastectomy and just went for my first internal sonogram of my ovaries. I mad the decision to get my breast surgery because of my own personal reasons. I have been diagnosed with BRCA2 gene and had found a cyst in my right breast. It was a struggle at first to even be approved to get the genetic testing because the gene came from my fathers side. My fathers side side had had all sons , and then finally my cousin was born (she is about 15 yrs older then me). Almost every male on my father side had passed away from some form of cancer ( men with the brca gene have a higher risk of breast cancer but also prostate cancer. Thinking that it was a “male gene in my family” none of us girls worried , until my first female cousin was diagnosed with breast cancer. She was tested and came back positive for the gene. I was lucky enough that when they found my cyst they were able to run my test next to my cousins( because we sent it to the same genetic testing company) and I am positive. I have decided that my removal decision was best for me because all the options didn’t work out with what I felt was right for me and my future. My doctors said it was the best decision also because once surgery came they removed clusters of cysts and was reported that i has about 17 to 21 in each breast. They were undetectable by touch because my breast tissue was so thick. I believe everyone has the right to make their own decisions and I was lucky enough to make mine before I got cancer.

  17. Hi ladies,
    I am BRCA 2 positive and have had a complete hysterectomy (July 2014) and am having a prophylactic bilateral double mastectomy this Friday September 4th, my reconstructive surgeon will be doing direct to implant (DTI) which I am grateful for. My mother passed away from ovarian cancer in 2011 and my grandmother who is still alive (93) went through breast cancer all of us BRCA 2 positive. Watching my mom go through Her 9 year battle became my biggest fear And nightmare which is why I have chosen this path. I have a 4 year old that needs me and a husband that needs me too. I’m definitely feeling anxious but looking forward to moving past this and living my life! Any tips or suggestions please share!

    • I just read your story. I hope you are doing well! How are you feeling? I am struggling with the decision to have a hysterectomy and mastectomy. I am not sure what to do.

  18. I am a 34 year old woman and I just found out that I have the BRCA 1 mutation. I am considering all the options. My aunt on my fathers side died of breast cancer at the age of 47. I am 8 weeks pregnant and I have a six year old daughter and a two year old daughter. Since I am pregnant I do not have the ability to do the preventative surgeries right away. I am terrified that I will get cancer while I am pregnant! What would I do then?? My biggest fear is not being here to care for my children. I have not met with the doctor yet to discuss my options. My appointment is in a month. He did mention over the phone that I could have an MRI to check my breasts while I am pregnant. I had an ultrasound last week to check the baby and my ovaries. My uterus was retroverted so it was hard to see the left ovary. The ultrasound did not give me confidence that my ovaries are ok. From what I understand there really is no good screening test for ovarian cancer which is scary… I am leaning towards having a hysterectomy after I am done breast feeding my baby and then either a double mastectomy or doing the 6 month monitoring . I hate the thought of going through menopause so early 🙁 I am still trying to get more information to make the best decision. I have read a lot of women’s comments and I don’t hear anyone say that they choose not to have some sort of surgery. Are there any women that have not had surgery and are cancer free . I would love to wait until 45 to have the surgeries but I am afraid to wait 🙁 Anyone that has any information that may help me make a decision would be greatly appreciated! Thanks ?

    • You can get a CA125 for ovarian cancer. Bloodtest. After your baby and you have healed then can do the hysterectomy. ….read my reply post above about my hysterectomy. …recovery time.

  19. Great websites:
    BRCA Decision Tool – Stanford University
    brcatool.stanford.edu
    The University of Kansas Breast Cancer Prevention Center- Dr. carol Fabian

    I am a 40 year old mother of two. I found out I was BRCA 1 positive at the age of 37 I in 2012 when my paternal aunt was diagnosed with stage 4 ovarian cancer at age 56 and chose to do genetic testing. It came as a big shock because the gene had passed through several generations of male carriers. I had been absolutely oblivious to my mutation for so many years (as were 3 of my sisters & 2 aunts, my uncle & father). It hit very hard as my dad had quickly passed away with Acute Myleoid Leukemia in 2003 – only knowing it for 8 weeks and aggressively treating it with poor results & now my aunt fighting a similar battle with advanced stages of ovarian cancer. Neither of them had been in poor health in any other way besides their cancer. Neither one smoked, drank, or abused their body in high risk lifestyles. My aunt passed away at age 58 last December & my dad had passed away at age 62. This was crazy since my grandparents had all lived into the 79-94 age range with minimal health problems.

    After my brca 1 test confirmed my mutation I was referred to a specialist. I visited with the breast cancer prevention center at the University of Kansas. Dr. Carol Faban advised me of the various ways to monitor & be aware of my risks. I filled out a 17 page health & family history to give them needed information. After monitoring through breast MRIs, 3-d mammograms, ca 125 levels & internal ultrasounds I chose to undergo complete hysterectomy – removing my uterus, ovaries & Fallopian tubes since my family history was stronger for ovarian cancer & this also affects breast cancer bc of estrogen production within the ovaries. After several scares and call backs from monitotlring procedures during that year I decided to do a nipple sparing mastectomy with reconstruction.

    My takeaway from this is that it is a personal choice how you handle the info.
    My 55 yr old aunt had both preventative surgeries at age 52ish with no sign of cancer
    My 52 yr old sister had both preventative surgeries with atyical uterine cells present at 50ish age
    I had hysterectomy at 38, mastectomy at 39 with no sign of disease no Atypical cells
    Another sister had only ovaries removed at age 41 and has had atypical uterine/ cervical cells at yearly checkup last year
    My other sister is 34 and is still having children is choosing no monitoring.
    My 30 year old brother hasn’t been tested.

    I personally couldn’t live knowing that I have 2 beautiful children & a wonderful husband that need and want me here as long as possible so why not lower my risk as much as possible. If cancer would have been present they would suggest chemo & radiation and then surgeries anyway. The surgeries become harder after chemo bc of reduced healing rates. I wanted to give myself the best chance for living without cancer and do all I could to prevent it. I couldn’t be happier at this point – I still do subaxillary ultrasounds, CA 125, annual paps & pelic exams yearly through KU hospital, an internal med doctor & with Lori Ranallo advising me and monitoring my results. I recently had an abnormal lymph node under my left arm which was biopsied last week – came back benign but serves as a reminder to be conscious of our health no matter what.

  20. My daughter and I are both Previvors! My grandmother,mother and 2 sisters all had breast cacncer. As a result I was put into a STAR study program for 5 years and afterwards I was offered the gene test. It resulted that I was positive for BRCA1 which meant my daughter had a 50% chance of having it also. She was tested and also was positive which now means that her 2 daughters are at a 50% also.
    We both decided to have a double mastectomy to reduce our risk as all of my family members had died from this horrible disease. We do whatever we can to get the word out and help with any cancer activities that we can.
    Because I have 3 brothers they were all sent letters from the hospital advising them that they should be diligent as they are also prone to this as well as their children.
    Every member of my family has been affected by cancer in some way – those of us that did not have breast cancer have all had skin cancer so we are still diligent about checkups.
    I am a team captain for our local Relay for Life and have been asked to speak about Previvors which I am very excited to do.

  21. So how awful is the bilateral mastectomy and reconstruction? Pain? Downtime? I’ve had a radical hysterectomy, gallbladder removal, and 2 c sections without horrible pain. Fairly high pain tolerance. But this seems like amputations to me. They suggest doing the removal and placing expanders all at once. ….. wondering about that vs the flap thing. I am a full C and would like to return to that. My husband does not want me to have the mastectomies…so not sure I will have much support. BRCA 2 positive, 48 y/o, dense, fibrous breast tissue….negative on 3D mamm and MRI. Don’t sugarcoat it. I want to know what to expect.

Leave a Reply

Your email address will not be published. Required fields are marked *