Ask the Filmmaker: In the Family’s Joanna Rudnick

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Joanna RudnickWhen Chicago filmmaker Joanna Rudnick tested positive for the “breast cancer gene” at age 27, she set out to make In the Family. Although she had no intention of “starring” in her own movie, she couldn’t find a young, unmarried woman with the mutation who hadn’t had surgery and was willing to be filmed. Joanna then turned the camera on herself, her burgeoning relationship, sought out other women with the mutation and confronted the company that owns the patent on the BRCA gene. The result is an intensely personal and brave documentary that offers a poignant account of Joanna’s journey, as well as a timely inside look at the human impact of new genetic research.

In the Family airs on most PBS stations on Wednesday, October 1 at 10 PM. (Schedules vary, so
check your local listings.
)

In her filmmaker interview with POV, Joanna offers some advice for young women who have cancer in their family history. She says:

I think the first thing I would say to any woman who has a history of breast and ovarian cancer in her family and who is thinking about getting the test is to really think about what she might do when she gets the results. Before taking the test, she should try to think about what decisions she might make if she tests positive and know that it might be a long journey ahead. Once she get the results, there’s no turning back, and she’s going to be making decisions for her future based on this information. There are so many life questions that are involved in getting a positive test result, including the possibility of passing on this gene to children.

Read more from Joanna’s interview, and find out how testing positive for the mutation has affected Joanna’s relationship with her family, how it impacted her romantic relationship and more.

Do you have a question for Joanna? Enter it in the comment field below, and she will select a few questions and answer them the week of October 6, 2008.

Added October 20, 2008: Joanna answered viewer questions about other forms of cancer, and whether she would ever consider alternative treatments. Read her responses to viewer questions.

Ruiyan Xu
Ruiyan Xu
Former POVer Ruiyan Xu worked on developing and producing materials for POV's website. Before coming to POV, she worked in the Interactive and Broadband department at Channel Thirteen/WNET. Ruiyan was born in Shanghai and graduated from Brown University with a B.A. in Modern Culture and Media.
  • Mike Huckins

    FOREIGNID: 17008
    FOREIGNPARENTID:
    My wife discovered she has thgis gene lastwinter. Been a very rough road. She had ovaries out as a first step and all has been fine since. No acutalsign of cancer.
    She would really like to watch this show and I have been tasked to make this happen. I have a huge flat screen with “Dish”. Disdh does not carry the station. To make a short story, this show is not being shown on conventional PBS stations but the HD Digital.
    Can purchase a copy of this from you please? Thanks,Mike-Albuquerque.

  • Becky Caires

    FOREIGNID: 17009
    FOREIGNPARENTID:
    I am Brca 1+ had hysterectomy as a preventive measure. Sister had stage4 OVC. Docs found stage 3c OVC after my PREVENTIVE surgey. Sister in remission doing well. I just finished third chemo. I am doing well. Women and men need to know how important this Brca + gene is. Becky

  • Jenny Wickman

    FOREIGNID: 17010
    FOREIGNPARENTID:
    I met Joanna after a screening of In The Family, at the Silverstein Lecture Series, at Northwestern Univ. Hospital. My doctor is also Dr. Lee Shulman, an AWESOME guy! He is able to bring some humor to this scary situation. I had genetic testing several years ago, and found out that I am BRCA 1 positive. I had a prophylactic hysterectomy, in December of 2006. I was 42 years old. I am married, and have three children. I am now thinking about prophylactic mastectomy. The film is amazing, it showed my feelings better than I ever could have said with words. That being said, I am now nervous that I told my family, and many friends to watch the film. I have been pretty good at not thinking about it… and now may have to answer a lot of questions, and have people asking me about my feelings. Not looking forward to it, I’ve realized that having to “go public” with the incredible mixed feelings about having this mutation, is making me very anxious. Joanna, first of all, thank you so much for making the film. I would like to ask you, did talking to others in the same situation help you, or do you feel like it made you more scared? I have not ever really talked to anyone else in this situation, and am afraid that it might make it harder. What do you think? I don’t want to hear scary stories, but maybe it won’t be as bad as I think. I know all the risks, I’m not looking for “facts”, as I feel like I have a good handle on that. But, it’s the “feelings” around this that I’m anxious about. Your thoughts? Thanks. Jenny

  • Cheryl

    FOREIGNID: 17011
    FOREIGNPARENTID:
    Several years ago I was working on an independent film in Chicago called “If You Step on a Crack” which was an adaptation of a short story by Sharon Solwitz. Its the story of a woman who waits to hear the results of her breast biopsy; how that period of time before the “knowing” changes her life and her relationships. It was fiction. I never thought I may have to ask myself the same questions the character I was playing in the film was wrestling with. A year after the short film appeared at numerous film festivals, my mom was diagnosed with ovarian cancer, and a very rare, untreatable, autoimmune reaction to the cancer (PCD – Paraneoplastic Cerebellar Degeneration). And that was very real. While the chemo saved her life, the PCD left her with no quality of life (unable to walk, talk, see, speak, swallow). My sisters and I became her caregivers for three years: she fought for every millisecond of life with grace, until she died in August of 2005. I am 40, single (never-married), a carbon-copy of my mom, and want to some day have children. Have you learned about PCD while doing your research? Thank you, Joanna, for your beautiful and brave documentary.

  • Greta L. Anderson

    FOREIGNID: 17012
    FOREIGNPARENTID:
    Hello – In 2002 – 2003 my employer airline encouraged enrolling in a program for “cancer insurance”. As my mother had died in 1968 of breast, servical and then bone cancer, I applied. To qualify I had to go for “testing” – a process that was not explained. Weeks later I was denied the insurance and within months, I was drummed out of a 30 year career. Is anyone investigating “Corporate America” entering into ‘cancer / ganetic testing’ to then eliminate ‘risk employees’ (to potentially save millions)? I had a “remarkably unblemished career record” of 30 years. I lost my career and then was forced into early retirement. However, the airline severed out and removed, stole away, ALL my health and insurance benefits – 30 yrs earned!
    HELP. I am 57 years old with NO health insurance after being tested for the genetic cancer gene via encouragement by my company and union. HELP!
    A potential national corporate scandal and scam of monumental and monstrous proportion. How much of this is going on…undetected! HELP!

  • Vanessa

    FOREIGNID: 17013
    FOREIGNPARENTID:
    Joanna,
    I just finished watching your film. It was quite touching. I cried alot. My mother was diagnosed with breast cancer at the young age of 38. then again at 46,then once again at 51. All three different types of breast cancer. She is now 55 and a survivor!!! My sister was then diagnosed 2 years ago with breast cancer at the age of 29. It scared me because I am 6 years older than her. I decided to get tested. Of course it came back positive and I decided to have the prophylactic double mastectomy along with reconstruction. Its now shy of one year and I am finishing up with my surgery. I am married and have not had children yet so I am waiting untill Im finished with the next surgery (nipple reconstruction) this monday!! Aftyerwards hopefully try to get pregnant . Then time for the ovaries. It has been a long road for me and all of us in my family. I can only thank G_ _ that I have been so fortunate to be able to do such a thing. I am so open and willing to talk about me and my family’s painful story. But we are still living and feel so blessed!

  • Amanda Topper

    FOREIGNID: 17014
    FOREIGNPARENTID:
    Hi, Joanna:
    I’ve been thinking about getting tested for BRCA mutations for several years as there are risk factors in my family. Seeing your film helped me make up my mind – I’m going to do it. Thank you for making this film.
    Amanda

  • Susanna Peterson

    FOREIGNID: 17015
    FOREIGNPARENTID:
    After watching “In The Family”, watch “Critical Condition” “Your $$ or your life”….with serious health and money problems, the time bomb is ticking. So breast and ovarian cancer run in the family, without adequate health insurance or funds, what does testing matter if you can’t afford it. Or if test positive, but don’t have insurance because you just lost your job!! The greed Adolf Bush & his cronies w/big business flushed the masses lives and our children’s children down the toilet

  • Ryan

    FOREIGNID: 17016
    FOREIGNPARENTID:
    I am very interested in watching this film with a family member of mine, but no matter what browser I use, I keep getting just a message stating that the film is not available for streaming outside of the U.S. I live in New Jersey. Anyone else experiencing this issue?

  • Olga Flores

    FOREIGNID: 17017
    FOREIGNPARENTID:
    Hello. First and foremost, Joanna, I want to congratulate you. I was in this film and I have tested negative for the BRCA 1 Gene. I just want to say that since this film I have gone through so many mixed emotions. More then 2 of my family members because of this film tested and they are positive, one of them a 1st cousin, male. I want to stress that feeling guilty if you do not have this gene, but find family members do is TOTALLY NORMAL. I really have had a hard time because it’s like a double edged sword………..if I wouldn’t have done this film, my family wouldn’t have tested…………..but because I did this film they now know that they have this huge obstacle, or actually obstacles to overcome. For any of you out there that feels this way, please understand, as I have to still remind myself that I cannot feel guilty and I really want to reach out to all of you that are in this position to know that it’s ok to feel guilty, but don’t. Just know that you are partly responsible for possibly changing their lives. Again, Joanna great job and it was such an honor to be in this wonderful film. I hope that it reaches out to every single person who sees it. God Bless and to GOOD HEALTH!!!! Olga Flores, Tucson, Az.

  • Lisa Kohut

    FOREIGNID: 17018
    FOREIGNPARENTID:
    I watched your film last night and it was very touching and well done. I am BRCA 1 positive and learned that a year ago. I am 35 years old and considering having my breasts removed. In your film you met with a doctor who does the one-step procedure. Is that the alloderm procedure? What was the name of the doctor you met with?
    Thanks again and congratulations on fantastic film.

  • zubaida sheikh

    FOREIGNID: 17019
    FOREIGNPARENTID:
    Joanna, My sister had breast and 7 years later from her’s I had breast cancer which the counseller said it was age related and my BRCA1 was negative. My mother died of cervical cancer.
    When anyone has the information of positive screen, young or old, you have take the decision of sergery, when andf what kind in your own hands.Doctors will tell you what a woman wants to hear i.e. preservation of breast- which can be done by lumpectomy which does not remove all cancer cells even if pathology says margins clear. Women will return with a second lesion in the same breast or another breast. Surgery to remove all breast tissie and preserving the nipple and areola and placing an implant sounds and looks all natural. But how do you know one wont have ductal cancer? I took charge of my cancer. I decided to have bilateral mastectomies and since one sentinal node was positive, I also decided to have all the nodes removed on the side of cancer. I also had serous cyst of my ovary- which if left also, could have become cancerous. I was fortunate. So, research every which way before you go under the knife. Since you are already 34 and a Jew, you need to hurry up to have a family or have your eggs removed and frozen for later use. By the way, I am a physician, so better informed I suppose. I have the greatest experience in diagnosing ovarian cancer, working at the University of Chicago Hospitals. I have just retired. Thank you.

  • Shahin

    FOREIGNID: 17020
    FOREIGNPARENTID:
    I just wanted to say that I really enjoyed your film. It opened my eyes up to some of the issues women have to face. It seems that you’re interested in social issues. I look forward to seeing many more films from you.

  • Mary

    FOREIGNID: 17021
    FOREIGNPARENTID:
    Thank you for your film. I was told I was positive for the BRCA mutation on Sept 10, 2001. Really only had a day to wallow in self pity. You really never know what might happen to you in life but I guess we sort of have a good idea. My mother died of breast cancer when I was 14, my sister got ovarian at 26(now 47 and doing great) and other cousins with various cancers as well(unfortunately none survived) I decided before I had the test done that I would immediately have a hysterectomy and mastectomy if I tested positive. Mind you I have 2 kids which does make the decision much easier. I hated the 6 month screenings and am a terrible worrier so it was a relief to have an option to that. Both surgeries went well. I had no ill sexual side effects from the removal of my ovaries. I am on estrogen replacement as I was only 35 when I had the operation so maybe this is why. The new implants are harder than real breasts(they also removed my nipples and made new ones) and I do have scars but it doesn’t bother me. The relief I now have is so much better. It is also funny too as since the operations I am more confident and happier and men are noticing my new improved outlook on life.(much to my husbands chagrin). Body parts do not make (or break) being a woman. I have never questioned my decision even once. Of course I do worry about my daughter and her future and wish she didn’t have to go through it all. I am also lucky to live in Canada where the operations, testing and reconstruction was totally covered. Good luck to everyone that has to face making this decision.

  • Jennifer

    FOREIGNID: 17022
    FOREIGNPARENTID:
    Dear Joanna, THANK YOU, THANK YOU, THANK YOU for having the courage to produce such an informative, insightful, emotional and COURAGEOUS film! My mother passed away of ovarian cancer at 59 after a valiant 15 month battle with the disease. My younger sister decided fairly quickly to undergo gene testing and sadly came back BRCA2 postive. She has already undergone a hysterectomy and is preparing for a bilateral masectomy next summer. After weeks of anguished emotions and hours of research, I had the gene testing as well. You gave such wonderful advice last night during your post-show interview for women to really take the time to consider the implications and consequences of the testing. I hope that women all over heard that message loud and clear! My insurance company actually required me to commit to a care plan prior to testing in the event I was positive, so that really forced the issue for me to confront the reality of being BRCA positive. In the end, I paid for the test out of pocket to protect my anonymity but also to leave my options open for new discoveries, treatments and clinical trials. I share with you the pain, heartache, second guessing, grief and courage that goes into deciding your very personal “BRCA path.” My test result did come back negative, but – as Dr. Shulman (my doctor as well) – was quick to point out, that does not mean I am not going to get the same disease as my mother. It does eliminate a portion of ovarian cancers, though. I still live in fear of developing cancer. And I am still weighing my option to remove my ovaries now. It’s such a tricky balancing act. I don’t actually have a question for you, but wanted to express my tremendous gratitiude to you for giving a voice to this journey. What an incredible service you have done for women everywhere!! I wish you continued good health and have utter confidence you will find a warm, cute deserving man to make your babies with! You’re beautiful, smart and SO courageous!

  • Nicole

    FOREIGNID: 17023
    FOREIGNPARENTID:
    Thank you for your bravery. The film is amazing. I wish you the best.

  • Sandra Vizachero

    FOREIGNID: 17024
    FOREIGNPARENTID:
    Dear Joanna:
    I need your help or direction. My mother comes from a family of 8 most families usually don’t have this many siblings. Out of the 8 siblings (7) have had or have breast cancer or ovarian cancer. I have been dealing with this terrible disease since I was 7 years old and I am now 45. For two many years I have been told along with my siblings that I need not worry that this didn’t effect my immediate mother only my Aunt’s so no need for preventative measures. Then 2 years ago August my mother was diagnosed with breast cancer and everything changed. I got mad. Now it was time for some real answers so off to the Univ of Michigan we went, Met with genetic counselor at the Univ of Mich and they tested my mother for the gene mutation. It came back negative. My question to you is they explained to us that they feel because of so many siblings with the same type of cancer that it is a gene mutation just not the BrCa1 or BrCa2 mutation it could be BrCa3 or BrCa4 etc!!! or my mother could be the “Red Herring” of her siblings that did not get the mutation but just ended up with breast cancer like a lot of other people who get this disease. I find this hard to believe. I need to know what other measures I can do to find out about our family. Is there someone you can put us in contact with. It seems that since our genetic test came back negative they are not interested in finding out what is causing this. My mother had a complete hysterectomy at the age of 42 when 2 of her siblings were already diagnosed. My mothers youngest sibling who is 64 now has stage 4 terminal cancer as I write this. We need some answers PLEASE HELP!!!
    The most unbelievable part of our family story is that when my sister and I visited our OBGYN on a yearly basis they refused to take prophylactic measures. They said because it was a “Catholic Hospital” they would have to review are case because it was our reproductive organs and that they were not comfortable with that kind of procedure at a “Catholic Hospital”
    HAIL TO THE VICTORS AT THE UNIV OF MICHIGAN and especially Dr. Mark Pearlman head of OBGYN @ the Univ of Mich to give my sister and myself a fighting chance with this disease. We both underwent surgery to remove our ovaries this past year. And will definitely consider more options in the future. With the success of your film I can only hope that the Dr’s we entrust with our lives are educated on prophylactic surgery. This is a must!!!
    I write this to you in loving memory of Irene, Joan, Christine, Margaret,Angus and my mother Rose who is still a survivor and her youngest sibling Clare who is Stage 4

  • Matt Hass

    FOREIGNID: 17025
    FOREIGNPARENTID:
    Joanna, My mother is battling Ovarian cancer. This past Wednesday evening when I returned home from taking her to Chicago’s Northwestern University Gynecologic Oncology facility, I turned on the TV, and there you were. You have now touched my heart and the hearts of so many others. I know you are struggling with great difficulties in your life, but please rest assured that by making this movie you have accomplished more than you could have ever imagined. You have raised our awareness of what’s really going on, and your efforts will save the lives of thousands of women over time. Rock on !

  • Maxine Silvius

    FOREIGNID: 17026
    FOREIGNPARENTID:
    I am a breast cancer survivor, and my mother was also. I do not have daughters. My brother has a daughter, 29 yrs. old. What are the chances of her caring the mutation? Should she be tested?

  • Chris Stohrer

    FOREIGNID: 17027
    FOREIGNPARENTID:
    Joanna, Thank you so much for this film. I am not at risk for breast cancer or ovairian cancer but Huntington’s Disease is present in my family. I used to wrestle with getting tesed or not. I have lived in that fear, and uncertanty, and my heart ached watching this film. My grandmother and mother both had it and I have two brothers and a neice have it. I have not been tested but have chosen alternative means of facing “The Dis-Ease”. I have been studying Metaphysics for the past seven years, and I am beginning to understand how “Dis-Ease” begins, and how we can find permanant healing.
    There are two books that I work with that give me hope and direction in not manifesting Dis-Ease. “Permanant Healing” by Dr Daniel Condron, and “The Biology of Belief”, by Dr Bruce Lipton, are both books that can give insight into Dis-Ease. We can choose to live a Dis-Ease free life, and if Dis-Ease is already present, then we can work towards perminant healing, so that it doesn’t return. Before you choose to have surgury, would you concider alternative methods of healing? Blessings to you and all the woman you have helped and to all those with genetic perdisposition.
    In deep gratitude, Chris Stohrer

  • Laura

    FOREIGNID: 17028
    FOREIGNPARENTID:
    Hi Joanna,
    Please take a look at this study
    http://cebp.aacrjournals.org/cgi/reprint/10/5/467.pdf
    “There are reasons to suspect that the estimates of penetrance from studies of [Ashkenazi] cancer families may be inflated.”

  • http://www.praonline.us Matt Gunn MSPT

    FOREIGNID: 17029
    FOREIGNPARENTID:
    Joanna,
    Are you familiar with the work of Dr. Bruce Lipton? I’ve enclosed youtube links. Listen to this guy for five minutes. Get excited. He has some great statements to make about genetic pre-disposition and more. The answers to your questions, and mine, lie in nature. Survival is innate!
    Having lost a friend to cancer, I could identify deeply with your emotional documentary. Thank you. Please read “The Biology of Belief” to know that your perception of cancer can change, in a very healthy way. Be sure to search Lipton at length on youtube and beyond. Get really excited. The New Biology is a reality. It is the backbone of our message. The science of self-empowerment. You are above it. Epigenetic.
    http://www.youtube.com/watch?v=Q4dn7Ebsvl0
    http://www.youtube.com/watch?v=4iCcnDuY6-4

  • Marlene Traynor

    FOREIGNID: 17030
    FOREIGNPARENTID:
    I was diagonosed with Primary Peritoneal. This is the type of Ovarian Cancer that you can still get even if you have had a radical hysterectomy and a mastectomy.

  • Jeffrey Stytz

    FOREIGNID: 17031
    FOREIGNPARENTID:
    Hi Joanna,
    I read the article in today’s Chicago Tribune with great interest. A close friend of mine has the BRCA1 gene in their family and recently all the sisters and nieces have been tested.
    It was a hard decision on their part to know, but worse not knowing according to my friend. Cancer has been devastating in their family and with the passage of GINA this year, they felt comfortable in being screened.
    Jeff

  • Patricia Paradise Silver

    FOREIGNID: 17032
    FOREIGNPARENTID:
    My mother died of breast cancer at age 41 when I was eleven years old in 1960. My sister died of breast cancer at age 26, twelve years after my mother died. My sister was the mother of a 2 year old daughter and 4 year old son. When genetic testing became available in the late 90′s my neice and I were tested and I was negative. Is it true that my daughter will not inherit the gene because it can only be passed on by a parent? Is it also true that a male can inherit the gene mutation ifrom his mother and it takes the form of colon cancer as well as possible breast cancer in a male?

  • linda

    FOREIGNID: 17033
    FOREIGNPARENTID:
    Thank you so much for making this beautiful and very moving film and including FORCE in it. I know from Luis that LInda wanted the work of this informative organization to be a major part of her legacy. You also included the whole Pedraza family so thoughtfully.
    I hope things go well for you and I look forward to seeing other films that you make.

  • Anne Ogurchak

    FOREIGNID: 17034
    FOREIGNPARENTID:
    Hi Joanna. Thank you for taking all the time and effort to put forth this film. It was so well done and a powerful educational piece. On an emotional level, my heart ached for you and the others in the film since Linda is my cousin. When her mom died at 44 it seemed like life in our family would never be the same. At the time I had five children of my own and tried to help my uncle with his three children. We took our troop of eigth on outings and had some good times. Three years later my sixth child was born. When he waas ten months old my mom was diagnosed with ovarian cancer at age 67. She died two days after my sons’ first birthday. It just didn’t seem possible that mom and her baby sister died of the same thing. This was 1974.
    In 1976, Lindas’ brother was diagnosed with bladder cancer at the tender age of eighteen.Thank God he is still cancer free at age fifthy
    When I had my hyserectomy in 1978 I asked the doctor about removing my ovariies because of my mom and aunt dying of ovarian cancer, his reply was that it “was just a fluke” they both had it. I asked him not to do me any favors and get rid of them.
    We were glad to be rid of cancer, so we hoped.
    But no.
    1995 my youngest sister age 49 was diagnosed with breast cancer. She had chemo and a mastectomy with a poor reconstruction. Thankfully she is now a 13 year survior.
    After Lisa got her breast cancer she was tested for the brca gene and was positive as were Linda and her brother. My aunt had passed the gene to her three children.
    Now empowered with info my sisters and I went for our testing. The day of the reults was terrifing . Out of the three of us, only the yougest with the breast cancer was positive. Linda was thrilled with our results as it eliminated 16 immediate family members of having the brca gene.
    Our families’ goal is to educate as many people as we can regarding this gene. It was our promise to Linda and we continue to carry this out whenever possible.
    Again, Joanna thank you and the team for the film. May you find peace in all your decisions. Remember Luis will be watching out for you! Sincerly in loving memory of my family, Anne

  • Jason

    FOREIGNID: 17035
    FOREIGNPARENTID:
    I just wanted to say that I did see the film that you did about breast/ovarian cancer & I really loved it. I really loved the part where the women show off their breast to the camera & the woman that let you touch her breast. It must have been empowering.

  • Paula

    FOREIGNID: 17036
    FOREIGNPARENTID:
    Hi Joanna, I just watched your film. What an inspiration you are. I’m proud of you. I must admit, I predicted the reaction of the guy, I was so angry. It wasn’t like he didn’t come into this without knowing. His selfishness took my breath. I almost turned it off when I realized I was right. I can’t imagine how that felt for you, your bravery is spectacular. ok, my reason for posting this is that I searched for financial assistance for the test, there doesn’t seem to be any available that I can find. I wondered why you were so kind to the science guy bragging about the patton and profit of the test. I wanted so bad for you to ask him if he was in it for the money or to help women. He seemed a bit embarrassed when you asked about the promise he made to reduce the price and had no defense on his part. My father was adopted in the 50′s after a lengthy stay in an orphanage. We don’t know history on that side of our genetics. My mother’s side has no history that we of. I have always been concerned about my fathers side and was wondering is it only passed through the mothers side? What are the chances for someone like me to be tested. I’m Puerto Rican, Indian, Caucasian. I’m low income and single parent. I don’t have the insurance nor the finances for a test. How much at risk might I be, what programs are available for someone like me to get tested? I appreciate your sacrifice, dedication, and openness. I hope to hear more from you. With all my appreciation and hopes for your future. Paula

  • bobbie

    FOREIGNID: 17037
    FOREIGNPARENTID:
    Dear Joanna,
    thank you so much for sharing your journey. Your film does an amazing job of letting people have someone to go through this process with. I do not carry this gene but am a carrier of the FX gene which is the primary cause of autism and mental retardation in boys. We found out about the gene when my dad was diagnosed with FXTAS. FX has many different issues but a few of the same. One of the results in being an FX carrier is the possibility of early ovarian failure (which i had at 28 after the birth of my second child). My son did not have the gene, my daughter 25 does. She feels similarly that she is in a race against the clock to find a partner and have children, knowing she has a 50 percent chance to pass on the gene if she does have children, and that she may or may not have ovarian failure. She also deals with feelings of being ‘damaged’ and knows that it may have unintentional effects on relationships.. Thank you for sharing all that you have shared, my heart goes out to you and all who struggle with the BRCA gene and its consequences.

  • Leberta

    FOREIGNID: 17038
    FOREIGNPARENTID:
    Hello!
    I saw your film this past Saturday night (10/4/08). I was adopted shortly after I was born. About 4 years ago I connected with several members of my birth family. I discovered that I had a full-blood birth sister (maternal) and at that time she had been deceased about 3 years. She died from breast cancer at approx. 38 years old. I also discovered that I had a half-sister (paternal) who died from breast cancer at approx. 17 years old. I have an aunt, 57 years old, (maternal) who has been fighting ovarian cancer for at least 8 years (currently under treatment) and a great aunt 83 years old who (maternal) who was just diagnosed with breast cancer 4 weeks ago.
    About 3 weeks ago I went to see a cosmetic surgeon (Dr. Orringer) to enquire about a breast reduction. Upon finding out this part of my health herstory :) he insisted that I consider the genetic test. I mad an appointment but cancelled it because I wondered what I was supposed to do with the information if it was determined that I had the gene. I rescheduled the appt. It will be in about 3 weeks. Meanwhile, I saw your film and was happy that someone else was searching as I am. I’d really like to know about the procedure that leaves the nipple intact. Who are the doctors you spoke with? Any information you have time to give me would be wonderful!
    Thanks for your film!

  • Lesa in Kansas

    FOREIGNID: 17039
    FOREIGNPARENTID:
    I have the BRCA gene and have 6 siblings, three of them sisters. How can I convince my sisters that they should have the test? They are 52, 50, and 46.

  • Marie

    FOREIGNID: 17040
    FOREIGNPARENTID:
    Joanna, thanks so much for making this film. I am so glad it is being shown on PBS this month. You have done a wonderful job of capturing the journey many of us have faced.
    I was diagnosed with bc at age 38. I would never have thought it was a hereditary cancer. I knew my grandmother had breast cancer, but didn’t know the details. I asked question to find out she had 2 different instances of breast cancer and then died of ovarian cancer. Even still, she was the only relative on that side we knew about that had breast or ovarian cancer. My oncologist wanted the test done. I said yes, and when the result came back positive for BRCA1, I was shocked. I got this news about 1 month into chemo. I was already emotional and then faced with decisions. The double mastectomy decision was one of the easiest I have ever made – it was a given. I am married, had 1 child, and had cancer. The only bad part of that decision is that some doctors disagreed – considering it mutilating my body. My oncologist presented my case at a hospital review board and came back to tell me about the heated debate about prophylactic mastectomies. I didn’t waiver in wanting them done, but felt odd that some in the medical community were so against this procedure. He also told me the team was nearly unanimous in recommending prophylactic oopherectomies. Now, that is the surgery I waivered on.
    Because everyone said it was the right thing to do, I made an appt. with a genetic counselor at Stanford. They automatically set me up to talk to an oncologist at the visit as well. That was one of the worst experiences of my life. That oncologist harassed me and lectured me about immediately needing my ovaries removed. I was in tears through the entire visit, and she wouldn’t let up. I was in the middle of horrible chemo, very emotional, and trying to ask questions about if there were any way I could have another child. I knew I couldn’t give birth for various reasons, mainly that I would be on Tamoxifen for 5 years and then too old. But I wanted to know about the possibility of harvesting eggs and using a surrogate. Looking back, I don’t understand why I was so hung up on the child thing. I was in a different place, and I have a different perspective now. My own gynecologist also thought I was crazy for holding onto my ovaries, but she was more understanding. It was a process. I had to have some time to adjust my thinking about a second child. I did have the prophylactic oopherectomies about 6 months after the double mastectomies, which I had after I finished chemo, and I was at totally peace with both. I have never regretted either decision. In fact, I know they were the right and only decisions for me.
    We have since adopted an amazing young girl from Guatemala, and I can’t imagine it any other way.
    I have so often struggled with issues of letting family members know and having to respect how they handle it. Both of my sisters immediately got tested, and I have to admit to browbeating them too much to do so. Sadly, my younger sister, age 32 then, testing positive. She entered a clinical trial for surveillance of breast and ovarian cancer. I can’t say it helped her at all, as the visits were yearly, and she had an aggressive cancer grow between visits. She was diagnosed with stage 3 bc at age 34 and then 2 years later with metastatic breast cancer, and has very advanced disease as I write this with much sorrow. This is a wicked, wicked disease. Women don’t always get the time to put off prophylactic surgeries. I’m not saying it’s a wrong decision, but it doesn’t always work out.
    I have 4 female cousins with a 25% chance of having this genetic mutation. None have chosen to be tested. I don’t think any are really taking surveillance seriously either. I have walked this fine line of trying to respect their decisions with trying to encurage them to take their risk seriously.
    I have my daughter and niece with a 50/50 chance of having this mutation and have no idea how to handle a discussion with them when they get older. At what age do you tell them about this? At what age, do you encourage them to be tested, or do you stand back and not give your opinion? Do you let them have an innocent youth and get married and have kids before you bug them? Do you worry that they are waiting too long? Do you have to constantly ask if they are going in for checkups? People say not to worry, they will have better surveillance and treatment. That’s crap. Surveillance and treatment haven’t helped my sister. Nothing can stop a fast, aggressive cancer. And treatment isn’t fun, it isn’t anything I wish on anyone.
    Thanks for letting me share this story. Thanks for sharing your story, Joanna.

  • E. Boas

    FOREIGNID: 17041
    FOREIGNPARENTID:
    Very moving film, very well done. Kudos to Joanne Rudnick!
    I was personally troubled by the complete lack of knowledge of cancer prevention cures and cancer cures that are not known about in the mainstream, and of course denied by mainstream medicine. (Where would the multi-billion dollar cancer industry be if you could cure yourself of it at home, at negligible cost!)
    If I were Joanne Rudnick (and others like her), I would investigate Graviola–a South American root that is 10,000 times stronger than radiation when ingested, only affecting/kiling cancerous cells, leaving all other cells completely unaffected. This medicine is sold in the U.S, for about $20/mo. supply, and has absolutely no side effects. You can learn about it at graviola.com, and order it from there. My sister has cured herself with it of her “uncurable” cancer with the Graviola regimen and the Kangan Water Machine. The latter is a highly alkaline water producint machine which cures all manner of diseases–since disease of all sorts cannot live in an alkaline body environment. They thrive in an acidic body. Check them out folks. These things work–against cancer, diabetes, rheumatism, arthritis, etc. Just don’t bother asking your doctor about them…first, they won’t know about them (although the Kangan Water is used in 90% of Japanese hospitals!), and there is no second….
    Good luck Joanne…hope you get to read this.
    E. Boas

  • Linda Brown

    FOREIGNID: 17042
    FOREIGNPARENTID:
    Dear Joanna,
    I wanted to share my personal story with you in the hopes I can help others. I am a 48 year old, mother of 2 young children,living in a suburb of Chicago. I
    am scheduled to have the BRCA1 test mid November.
    I was already diagnosed with breast cancer this summer. My bilateral mastectomy was done in July and my implant exchange surgery only 3 weeks ago. I feel blessed that it was caught early and very treatable and I do not have to have any treatments.
    My mother was diagnosed when she was 45 years old, in the early 80′s, and in doing family history research for the BRCA1 test, we found that her diagnosis was exactly the same as mine, except that her breast cancer was much further along and had already spread to her lymph nodes. She died 9 years later.
    My sister and I will be getting tested together and will look at all our options. I plan on being there for my sister 100% if she chooses preventive surgery.
    I am writing because I want to help others going through the same emotional and physical struggles as I am. I appreciate every minute of every day and realize that my life my have gone a different way had I not had an annual mammogram that showed I needed further evaluation……
    My sister and I are are planning on seeing your movie next week. I am very excited yet nervous to see how it affects me before I take the test.
    Thank you for all you have done to make everyone aware and conscious of all the different experiences one goes through.