Living With Being BRCA2 Positive

Several years ago, upon learning that my mother had tested positive for the BRCA2 gene mutation; I found myself going through the test myself. A person who tests positive for the BRCA1 or BRCA2 gene mutation has an increased lifetime risk of developing breast or ovarian cancer.

My mother had undergone a double mastectomy and chemotherapy after a breast cancer diagnosis in 2003. She also felt it necessary to have this genetic testing down, as both my maternal grandmother and great-grandmothers had died from ovarian cancer.  The women on my mom’s side of the family hadn’t escaped a cancer diagnosis for at least three generations.

I saw a genetic counselor and had blood drawn. I really didn’t think much about it in the time it took for the results to come back. Of course, I figured, I was going to be the exception.

Upon entering the room at Magee Women’s Hospital, I glanced down at a paper on the table, which was turned upside down. I knew the results then. The counselor then launched into options I should think about to help prevent further risk of cancer in the future; such as the possibility of a mastectomy and/or a hysterectomy.  I shut down, not listening any further. After all, I was only 32.

I did share my results with my doctor, who proceeded to prescribe preventative yearly tests such as a yearly mammogram, a pelvic ultrasound, a breast MRI, and a CA-125 blood test.  He briefly mentioned future preventative surgeries that could be done.

Which brings me to the day after Thanksgiving two months ago. Here my doctor laid everything out for me.

“You are done having children and almost 40,” he stated. “I would think about an oophorectomy.” (Removal of the ovaries)                                      “What? When?” I asked  stunned.                                                                                                                                                                                                   “I’d have it done as soon as possible'” he replied.

Easy for him to say! He rattled off a lot of side effects and issues I would most likely experience after the procedure. As he goes down the list, I realize I am becoming more and more upset. What happened to, if it ain’t broke don’t fix it? I hadn’t had any medical problems and my last tests came back normal.

I hadn’t been nervous following my appointment with the genetic counselor, but here I sat, listening to someone tell me that there were no advantages to having this done; although I shouldn’t get ovarian cancer, sometimes people have been known to have cancer where their ovaries were.

My mortality washes over me like being drenched by a bucket of ice water. I should be thankful that I am aware of this increased risk of cancer and available preventative measures. I live my life feeling so young and alive- where has the time gone? I don’t feel 39. And going through menopause at 39? Scary. The horror stories abound- hot flashes, cold sweats, weight gain, mood swings, decreased libido…and hormone replacement therapy is not an option as there was a correlation between my mom’s HRT and the development of her breast cancer.

Two months later I am still weighing the options. I regret to say I as of yet, I still have not made an appointment with the doctor who would perform the procedure. I continue to find reasons why I can not have it done in the near future. Running a half marathon in May, a family vacation during the summer, and work of course, help me to avoid making this difficult decision.  I don’t want to be pushed one way or the other, I want to find out all the pros and cons that I can, and then make the decision.

If anyone reading this has made this decision personally (one way or the other) or knows someone who has, I would love to hear from them. My friends and family have gone through menopause at a time when their body was ready naturally. I have found no one that can tell me their personal experience, only research articles and doctors (male I might add).

I’d love to hear readers’ thoughts on this subject, so feel free to send a response to this post.

 

39 Comments

  1. Rosalynn Quinones

    Hi Lori: My mother in law did the oophorectomy when she turned 40. She has never had any complications or secondary effects. Of course, everyone is different. Wish you the best in your decision.

  2. D

    Hello. I am BRCA2+. I was diagnosed with breast cancer at 34 and had my ovaries, tubes, and uterus (including cervix) removed at 35 years old. While it’s a deeply individual decision I do know that while having your ovaries and tubes out doesn’t eliminate the cancer risk, it does reduce it by 95%. It also helps to reduce your breast cancer risk by reducing the amount of hormones in your body. My mother had her ovaries out when she was 37 because her breast cancer had come back and they were trying to control the spread. For me, I felt better having it done before the cancer had a chance to come back so I fought to have it done at 35. Sure there are some unpleasant side effects (the worst of which right now is weight gain but I am also on anti-cancer meds that increase your weight so…) but to me, it is totally worth it to know that I am doing all I can to be here for my kids and take care of my health. The hot flashes have not been bad, mood swings and cold sweats non-existant. And honestly? I’m thrilled to not have a period anymore. I know there are long-term health effects but I will take those as they come (having bone density scans etc). It really was worth it for me. Hope you can find some peace in whatever you decide.

  3. lorihedderman

    Thank you so much for your response. I pray that you continue to remain cancer free. I am still trying to wrestle with finally making a decision- I do think that I will end up having the oophorectomy in the near future, I hope that I will find peace with the decision that I make as you have. I want to be here for my son for many years to come. Please keep me posted on your health. I appreciate your honest reply- it definitely helps!

  4. Tricia

    I too am BRCA2+. I found out back in April, 2012 while my mom was battling breast cancer and found out she too was BRCA2+. I’ve discussed options and have been trying to decide what to do. Then about three weeks ago I had a breast MRI and they found two masses. Just yesterday I had an MRI biopsy and today I received the word that it was benign. But knowing that I am BRCA2+, that is a process I’ll have to repeat often if I don’t take matters in to my own hands. I’m not sure I can handle the stress of going through the biopsies and awaiting the results on a regular basis. Because they’ve already told me that anything they see will be checked because of the gene mutation. Having a double mastectomy will allow me to focus on my children and remove that stress of wondering “what will they find during this 6 month check up.” I’m also having the hysterctomy so I don’t have to worry about the ovarian cancer as well. I’m at total peace with my decisions and I hope you can find peace as well. Stay strong!

  5. lorihedderman

    Thank you for your post. I am still trying to make a decision… I am glad to get such good advice from those courageous women such as yourself! I appreciate your taking the time to write about your experiences for those like me who are still struggling to make the right decision for the future. 🙂

  6. Mary

    I too am Brac2+. My mother died of breast cancer at 52yrs old and my younger sister has had breast cancer. She had the lumpectomy and then radiation. Later she had the genetic test which was also positive. Without a blink she decided to have all of the preventative surgeries. For me however it was not an easy decision. The oopherectomy i believe a very good move, as there is no test that can pick up ovarian cancer . I will be having that one later this year . The bilateral mastectomy with reconstruction is also high on my list and i am seeing the surgeon next week. I am 49 and just feel like i have been waiting to get cancer before i make a choice of what to do. I want to be in control of my life. A;so i think that getting cancer and going through the chemo etc is no picnic and not always a good outcome. Good luck . I know the choices are pretty tough.

  7. lorihedderman

    Hi Mary~ Thank you for your comments. I too will be seeing a surgeon this week regarding my recent diagnosis of breast cancer. My thoughts and prayers are with you!

  8. Raychel

    I am 39 as well, I jus found out 3 weeks ago I have the BRCA2 mutation. Today I met with the gentic counselor. When reading your story I feel you are telling MY story. I am soooo very happy with my body the way it is. My Grandmother had breast cancer after 70 and my mom has uterine cancer non-related to BRCA2. she is only 62. I toi do not feel 39. i feel 26! I love my ovaries and my estrogen. The genetic counselor told me that I need to see a breast surgeon(even if I dont have surgery), and a dermotologist and a pancreatic dr too. Because now risk of pancreatic cancer and melanoma is higher as well. do you mind if I say WTF????? When you speak of nit making a deciaion yet, it aounds to me like you HAVE made a decision….its juat no one has talked you out of it yet. I am in tge same boat. I am torn. my luck Ill have my ovaries removed, never have goid aex again and end up with some other cancer. or getting hit by a car on my way to social security when I retire. But I dont want to die from ovarian cancer (Im more worried about this than breast cancer) because I dont want to leave my daughter to be raised by my ex-husband. I would love to hear more about your journey. best of luck to you!.

  9. lorihedderman

    Raychel~ A lot has happened since that blog piece! Please read my new posts. I have been diagnosed with breast cancer- I just turned 40. If you want to talk privately, feel free to e-mail me directly at lorihedderman@gmail.com. I have a lot to share and I SO know what you’re dealing with. In the end, we need to look out for our little ones! The unknown is scary (I’m still freaking out) but my decision has been made for me now. I’m praying that you find peace in your decision making. I’d love to connect via e-mail…

  10. Kate

    Rachel- Sorry to hear about your bc diagnosis. I was tested BRCA 2 positive 4 years ago. I instantly had my ovaries/fallopian tubes removed because my mom died from ovarian cancer and a sister continues to battle it. I will not have a double mastectomy just in case. There’s no history of bc in my family so I don’t believe I will get it. I have made a decision to stop all excessive monitoring of my breasts because all of it makes me anxious to the point of illness. My doctors and my therapist continue to attempt talking me out of this but I know what is best for me. Best of luck to you.

  11. lorihedderman

    Kate- my grandmother and great grandmother both died from ovarian cancer and there was no one in my family with breast cancer until my mom got it 10 years ago. The only way I found mine early was because of the extra screening (MRI). I will be having my ovaries out after I recover from my mastectomy. I’m scared, but I want to see my son grow up. I hope that you find peace- I know how frightening it all is, I blew everything off after being tested BRCA2 positive 9 years ago. Good luck Kate, and I pray your sister will beat her cancer.

  12. rosemary

    Hi,
    My dad was BRCA2 positive. He had primary prostate, primary breast and primary colon. He died a couple of years ago after a tough battle with Stage iv br ca. My 2 sisters are positive as well. One had breast cancer at 40 years old and the other is fighting primary peritoneal at this time. She is 55 years old. Her husband and kids are devastated. Our hearts are broken with all this cancer.
    Choose life. My heartfelt prayers are with you all.
    Blessings at Thanksgiving
    Rosemary

  13. Lala

    I know this thread is rather old but I am hoping it will still make a difference to someone out there who is battling with these tough decisions. At the age of 19, I lost my mom age (48 at the time) to breast cancer. This was her third bout with the mosnter in less than 3 years. Previous to her both my grandmother and great grandmother had breast cancer. There was also an aunt who died of ovarian cancer when I was very young. I had to fight tooth and nails for a mamo because I was only 30 at the time, despite my family history. That’s when an OBGYN suggested I get tested for BRCA. Both my sister (who is 4 years older) and I were tested. Both of our test came back positive. Being that we have different fathers, it was clear we gotthe mutation from our mom. Who we later found out had the most aggressive type of breast cancer. The memories of watching my mother, the strongest person in my world and the person I loved more than anything else on earth, deteriorate to the point where she couldn’t stay awake longer than 30 minutes at a time was more than enough for me. At the age of 33, I decided to have a double mastectomy. I had a list of complications and wasn’t able to do my reconstruction till six months later, but not once did I ever question if I made the right decision. At the time, the doctors refused to remove my ovaries again because if my age and the fact that I’m not married. But I do have two children and don’t plan on haveing anymore. However, I am 35 now and plan on having my ovaries removed early next spring. It is a personal choice, but when my mom passed I promised myself I would do everything in my power to ensure Cancer didn’t take me away from my children. If any of you ladies have any questions or would just like to talk, feel free to email me @ lashonda326@yahoo.com

  14. lorihedderman

    Thank you so much for sharing your story- and your offer to help those who are struggling with their own decision making. So much has happened to me after this post as well, a breast cancer diagnosis, bilateral mastectomy, reconstruction, and removal of my ovaries- all in the last 9 months. If you ever want to talk about your pending oophrectomy don’t hesitate to e-mail me as well. You are a wonderful role model! Thank you!

  15. Maddi G

    I had stage one breast cancer over 20 years ago, and while on a 23andme website last year I found out I was positive for the BRCA2 mutation. Because I had cervical cancer at 19 and had a hysterectomy and one ovary removed, I have decided to remove the other ovary. At this late stage of the game, why not? However, I will NOT have my breasts removed, and have opted for being more watchful. I alternate every six months between a breast MRI and a mammogram. It’s a bit of a pain, but it is peace of mind. No one else in my immediate family has had cancer, and my one sister who was tested was negative. I was retested at a doctors’ office, so I know my test was accurate. I did find out recently that my fathers’ mother, his brother, and two of his nephews died of cancer, so who knows. However, I choose not to go through the horrible pain I know takes place during Prophylactic Bilateral Mastectomies, as I am on a Facebook website where women regularly undergo this preventative surgery. I won’t put myself through it and considering how long it’s been since I last had cancer, I’m playing the odds on this one.
    Good luck to you.

  16. mom2alex

    Hi Lori, I see this post is older and I wonder how you are doing now? I just found out through 23and me testing I’m homozygous for the BRCA2 gene. It’s completely blocked and not working. My father passed at age 57 from Pancreatic cancer and I wonder if he had this gene too? It’s scary because I don’t know what to do with this information as I am currently un insured.

  17. lorihedderman

    I’m sorry that I just saw this post. I am well. Keeping an eye on everything. If you would like to talk more in depth about the gene etc. please let me know. Also, the group F.O.R.C.E. is a great resource. (Facing Our Risk of Cancer Empowered).
    ~Lori

  18. Lulu

    Hi there, happy to hear you are doing well. I recently moved home to help my dad while he is dying of Pancreatic cancer, and was told my brothers and I should get tested for BRCA2. Two of us did, and we both came out positive. I’m trying to do the tests to monitor, but am torn about the surgies. I just turned 36 and am single. It’s a bit overwhelming figuring out what to do. All the support groups I’ve been to here are moms talking about dinner parties and their kids playdates. I can’t relate. Looking into egg freezing, and figuring things out from there.

  19. lorihedderman

    I am truly sorry about your father’s illness. You are under a great deal of stress, and it’s difficult to make any decisions about your own health when you are caring for your father. I would ask that you check out FORCE (Facing Our Risk of Cancer Empowered). They have local chapters, if you will. There you will find information and women just like us that can help support you. I would be happy to answer any questions that you might have (that I have the answers to!) Please do not hesitate to contact me through e-mail as well. Please keep in touch and let me know how you are.

  20. Nancy Perez Jimerson

    Hi! I just tested positive for BRCA2 gene mutation 3 weeks ago. I will see a genetic counselor in 3 weeks. That is the day before my 53rd birthday. Thankfully, I have not had cancer yet. I too will face these difficult decisions and increased anxiety. I pray for me and all of you.

  21. Yvonna

    I was diagnosed on 2011 with a primary peritoneal cancer in my right pelvis. It’s makeup was ovarian based although my over is were healthy and functioning still at age 47, they were removed back then as I no longer had a need for them since I had already had a hysterectomy in 2007 for unrelated issues. I was told by my doctor the makeup of the tumor had only been reported maybe 20 times in other people making it rare. Now 5 years later at my first ever mamogram at age 52 I was diagnosed with stage 1 breast cancer with 1 sentinel node micrometasteses . I had refused to get a mamogram for years, shame on me. Just 3 days ago my genetic testing came back brca2 positive for the mutation. Weirdly not much family history if cancer until me besides a paternal aunt who had ovarian cancer 10 years ago and lived. Trying to visualize what a double mastectomy will look like on me. I know I will do it but sometimes I think it won’t have been worth all the pain if the first cancer comes back again anyways. I went through a hell of a rough time before with multiple infections and disabilities I had to get used to. Kids are grown up, have grandkids I adore. Wondering how was your recovery time?

  22. lorihedderman

    I wish you nothing but the best! Just gather all the information that you can from your genetic counselor and take all preventive measures you can! Another good resource is F.O.R.C.E. (Facing Our Risk of Cancer Empowered). Check out their website at http://www.facingourrisk.org/ FORCE is the only national nonprofit organization devoted to hereditary breast and ovarian cancer. This website includes support, education, advocacy, etc…

  23. lorihedderman

    My recovery time went quicker than I thought it would. Make sure you rest and sleep as much as possible, as your body uses a TON of energy to heal (even months later!) Are you planning on having reconstruction? You are still quite young. Gather as much information as possible about the procedures available so that you may make the right decision for you. Your doctors and other survivors are a wealth of information. Look into F.O.R.C.E. (Facing Our Risk of Cancer Empowered). Check out their website at http://www.facingourrisk.org/ FORCE is the only national nonprofit organization devoted to hereditary breast and ovarian cancer. This website includes support, education, advocacy, etc… They have many local chapters, and one may be near you depending on where you live. Please do not hesitate to contact me with any questions that I might answer for you about my experiences. Good luck and hang in there! You will enjoy those grand kids for many years to come!

  24. Amy

    I am 39 and I’m waiting to hear my results. My mother, aunt and grandmother were all positive and all got cancer in their late 30s-early 40s. I’m trying to prepare myself for a positive results and researching my options. Any advice would be greatly appreciated.

  25. lorihedderman

    Preventative care is the key! If you are positive, you will be offered many different tests for early detection of breast and ovarian cancer. I actually took part in two research studies and received extra care and testing. Please let me know how you are! Wishing you the best!

  26. Sheila

    I found out that I was BRACA2 13 years ago after my two sisters (twins) were diagnosed with breast and ovarian cancer within a year of one another. My mother had breast (and other cancers) and died just shy of her 60th birthday. All of her siblings died just shy of their 60th birthdays as well (with the exception of one brother.) Once the second sister was diagnosed we all decided to get tested. 4 of us are BRACA2 positive and 2 are negative. I never thought that I would do any of the surgeries. I wasn’t married very long when I found out about the gene and I had just had a baby. The ovarian cancer scared me though and I went ahead and had my ovaries removed. All 4 of my sisters followed. I had the night sweats and hot flashes, but after a while they all but went away. I took tamoxifen for a few years and then 8 years ago I took another big step and had a double mastectomy. I felt like I needed to do what I could to prevent a cancer because you don’t know what kind of cancer you’ll get. My surgery went well and I’m okay. My sister who had ovarian cancer opted not to have a mastectomy. It’s such a personal decision. I hope this story helps you.

  27. Nikki

    My 20yr old daughter is BRCA 2 positive. She was diagnosed Oct 31st 2016 with stage 3 breast cancer. Since then she has had a chemo, a mastectomy on the left side and is about to start radiation on July 10th. She will then have the other breast removed as well as reconstruction on both in Jan 2018 as long as everything goes well. We were able to have 7 of her egg harvested before the chemo so now I’m trying to decide why do we even risk keeping her ovaries at this point.

  28. lorihedderman

    I am so sorry to hear that your daughter is going through this. I am glad to hear that you are such a wonderful support for her. I hope that her radiation is going well, and that she is regaining energy and healing. Please let me know how she is doing, and if you have any questions about reconstruction from a survivor’s point of view. Sending prayers.

  29. lorihedderman

    Sheila,

    Thank you for sharing your story with me. I will post this, in the hopes that others who read my blog find courage from you! Everyone’s journey through these decisions is, as you said, a personal one. Have you joined the FORCE chapter in your area? (Facing Our Risk of Cancer Empowered). It is to “improve the lives of individuals and families affected by hereditary breast, ovarian, and related cancers.” You are a wonderful resource for others who are facing the decisions you have made for your health!

  30. Sandra

    I found out in June of 2015 that I am BRCA2 positive (as is one of my sisters). We lost our Mom to bc at age 45. Shortly after getting my result I had a full hysterectomy as my Mother also had reproductive cancer (not sure if cervical or ovarian…they kept it from us kids at the time). I was paralyzed to move forward with a prophylactic mastectomy. I saw many different drs looking for someone to tell me what to do, but I learned nobody could do that for me. I felt like I was waiting for permission and one dr said permission would mean cancer and you don’t want that. Since my sister had a DIEP Flap reconstruction and I am on the surgical calendar for a PBMX for August 3rd. I am do an above the muscle reconstruction as it is most pain free and less invasive keeping pec muscle in tact. I’m trying to decide btwn saline and silicone, but other than that I have made peace with my situation. I wish the same for you.

  31. lorihedderman

    Sandra,
    I wish you the best for your upcoming surgery. I opted for silicone, as it was the best choice for me. I am glad that you have found peace in your decisions, and I hope this will be the beginning of a wonderful new chapter in your life.

  32. shannon orman

    I am brca 1 and 2 positive, I was diagnosed with stage one breast cancer, I first got a lumpectomy, but then had another scare so I decided on a double mastectomy. this year in November I have chosen to have a full hysterectomy, everyday the thought of my cancer coming back scares me, but im moving forward. I had 33 chemo treatments and 34 radiation and I am about 7 months without cancer now, I do believe being positive and having a wonderful family plays a big part in my life, thank you for letting me share!!!!!!!!

  33. Jeff

    Hi Lori,
    I am sorry to hear about your dilemma. My wife had her cervix removed back when she had our third child due to a mass that was found indicating cervical cancer. They left her ovaries and uterus but when she turned 37 her mother died of colon cancer. She was devastated and since her sister had been diagnosed with breast cancer a couple of years earlier and had a double mastectomy, she decided to get tested. Turns out she had brca2 gene. She immediately went into crisis mode and scheduled surgery to have her ovaries removed and her breasts as well. I asked her to reconsider this decision due to the health effects it would have on her body. She was adamant and scheduled them anyway. Shortly after those surgeries she had a gastric sleeve procedure done to lose weight (again with me asking her to reconsider). Since then she is fairly certain that she won’t get breast or ovarian cancer. She also lost a lot of weight and in addition to immediate menopause she is having all types of hormone and vitamin deficiencies as well as problems emotionally. It has affected our family life and our married life immensely. Our physical relationship is all but gone and she is on anti-depressants now. I’m not saying not to have the surgery, but your earlier statement of “if it ain’t broke don’t fix it” is in some cases spot on. I believe that doctors are pushing surgeries where there is no need for one. In my wife’s case, her family has a large history with cancer so I understood where she was nervous. My counterpoint to surgery with her was that we are all going to die at some point. None of us know what it will be. If you go though all the surgeries to have your ability to physically enjoy your husband and to remain “you” emotionally taken away due to what might be is one thing. To go through it because you know your are facing cancer of either of those types is another. As I have told my wife, you might get all this done and then end up with colon, lung, brain, bone cancer, etc. There are no guarantees in life. My wife’s decision, while I support her and still love her very much, have almost ended our marriage on several occasions. We have struggled for the last few years with intimacy, trust, self-esteem, anger, shame, and so many other emotional and physical issues that it is only by the grace of God Himself we are still together. I am not telling you that you shouldn’t have the surgery done. I am saying that you should definitely weigh all your options first. Get a second opinion, third opinion. Get six or seven if you need to but don’t make any decision that will change your life forever without knowing first for sure it is the right thing for YOU to do. Also prayer is a really great place to start. If you aren’t religious I would strongly recommend reading the bible for inspiration. I am a Christian and I will be praying for you and your situation.

  34. lorihedderman

    Thank you for your post. Although my journey through these decisions was completed 5 years ago, I know that others on this blog will read your personal story. My decision was basically made for me, as the breast cancer diagnosis was the catalyst for all of my decisions. I am happy with my decisions, and my husband and I both made these decisions together. He was very supportive throughout.
    You are absolutely right that everyone must make their own decisions, and unfortunately, not everyone will have the recovery I have had. I am so sorry that your marriage has suffered so much, and I hope that you continue to fight to make it work. Menopause is different for everyone, and I can’t imagine your wife’s personal struggle. God is in your lives, so I have no doubt that He will see you all through. If you have not been in pastoral couple’s counseling, this could be an option in addressing your issues you mentioned. God Bless you and your wife. I wish you Peace.

  35. lorihedderman

    Thank you for sharing! I wish you luck and peace with your journey! You are a true warrior! Please let me know how you are after your November surgery, I know you will be fine! You have a great attitude and I am glad to hear you have so many people who support and love you!

  36. Diana

    This message is for Jeff. Having lost my mom at 44, 1st cousin at 40 (younger than me) and older sister at 51, I understand where your wife is coming from. I had my ovaries removed as soon as I found out I was BRCA2 positive. I had already had a partial hysterectomy. I kept putting off the preventative mastectomy. I had six month checkups and MRI’s. Well it caught up to me. If a woman has a BRCA mutation she is broke (at least 1 gene is broken) and if it has been attacking family members it will eventually get you. I truly believe it has a higher rate in some families than others. 4 out of 5 women in my generation have the gene. Two are gone and I have had cancer. Please love your wife and never consider divorce. Tell her she’s beautiful. Beauty is on the inside. How you treat her will affect her self esteem. Seeing loved ones die too young is difficult and throws a person into survival mode. Your wife did make the right decision. At times I have second guessed my decision but then my husband and kids remind me how it was the best decision if I want to live and I know it was the right one for me. I hope your wife has a support system with other women who have went through this too.

  37. Sherry Lanich

    I enjoyed reading your blog I felt the same way that you described I had four aunt’s and a great grandma a cousin all with cancer. Half of them breast and half with ovarian. My father and grandfather had prostate cancer now my sister has breast cancer.That is 9 people in three generations with cancer. We found out a little while back that we are brca 2 positive .I finally went and did the test and I was brca 2 positive last year. I did all the preventive surgeries last year and I am doing fine. I did them at 42. I understand what you mean. It was scary and it was a hard decision to make. Unfortunately they were planning to test my younger sister who also has William syndrome. She is only 36 . Before they tested her for the brca mutation she ended up having breast cancer and now we are dealing with this. I do believe getting the preventive surgery when you have family history like mine and yours it is the better choice. Menopause has not been that bad for me hot flashes aren’t really that bad and I’ve not had the mood swings I did the double mastectomy with reconstruction and I’m very happy with the results I encourage you to get the preventive surgery it’s not easy but it’s worth it

  38. lorihedderman

    Sherry, thank you so much for your comments. There are so many of us that must make these difficult decisions. I am happy to hear that you are doing well after your surgeries, and I hope that your sister is now cancer free.

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