BARD 1 Info/Advice needed

Mknausz

I'm 33 and nursing a newborn (my second little girl) but just found out today that I have the BARD 1 genetic mutation (I do not have a BRCA mutation). There are many people in my family with cancer (including breast and ovarian) and I myself had thyroid cancer with lymph and lung metasteses (diagnosed at 19, was treated at Cleveland Clinic and ultimately Sloan Kettering due to the aggressive nature... I still have evidence of disease in my lungs but it's not growing anymore so we watch it without treatment). Any information anyone can pass along would be so greatly appreciated. I'm not at all sure of next steps. My OB knows nothing about this and didn't have much advice for me. I reached out to my endocrine oncologists at Cleveland Clinic to see what they suggest. I know this doesn't mean I will get breast cancer, but let me just say that I cannot imagine going through cancer again, especially now that I have two baby girls. I live in Dallas, TX. Thank you in advance for your help

MelissaDallas

I am not sure, but the genetics department at UTSW is fantastic and they are the only NCI designated Cancer Center in our region. NCI Cancer Centers are the best of the best. My counselor is no longer there, but I loved her and they are cutting edge and do important research

MelissaDallas

http://www.utswmedicine.org/cancer/programs/cancer...

Mknausz

thank you! I'll request an appointment there ASAP.

wombet

My family was recently found to have the Bard-1 mutation. All three sisters with this mutation developed triple negative breast cancer. I was 49, and my other two sisters were 55 and 69. This mutation is a huge risk factor for developing breast cancer, at least in my family. My oncologist said it increases your risk 3-fold. In my family 100% risk. Overall, probably 30-40% risk.

Mknausz

wow I'm so sorry to hear about your family's struggles! So scary for all of you! Are you all BRCA negative? Since my post I've met with a few Drs and other than the genetics counselor at UTSW no one seems to think I should be worried about this beyond screenings every 6 months (MRI alternating with mammograms). 2 of the 3 supportrd PM if I wanted it but said there's not enough research on BARD yet to be sure. The genetics counselor on the other hand thought my risks are the same as a BRCA patient due to the family history combined with the BARD.

wombet

We were all BRCA. negative. My sister who was just diagnosed 4 months ago probably wishes she had the PM, because even with aggressive follow-ups by a geneticist and an oncologist, she still had to have a double mastectomy and chemo. She was the vegetarian super healthy one, I think it's why she got this at 69, and I was 49. Thank God I had a double mastectomy. But now they want me to have my ovaries out, too. I should probably do this, but we have no ovarian cancer in our family. Do you know if the women in your family that got ovarian cancer were positive for the bard-1? Also, I am very sorry for all you have been through.....I know it's a hard decision, but if it were me I would be proactive.

Debonyx

I also tested positive for BARD1 mutation only . The high risk specialists here in Pittsburgh have advised me to treat this as if I have a BRCA1 or BRCA2 mutation . I am two weeks out of prophylactic hysterectomy today. Still recovering and sick of being stuck in the house!!! I am getting breast MRI s and mammograms until I am ready for prophylactic mastectomy in the next two years. The crappy thing I am learning about BARD1 is that it might be linked to other cancers including lung and brain. My mom had non- Hodgkin's lymphoma and a rare melanoma. She always thought she would get breast cancer like all the other women in the family.

Mknausz

debonyx - wow I commend your for your bravery! May I ask how old you are? Have you and your family enrolled in the IMPACT genetic study? What made you decide to do the hysterectomy first I have brain cancer in my family too - lymphoma of the brain in my maternal grandma in her early 60s and a malignant braintumor in a maternal cousin at 15.

Debonyx

I am 44 years old. I decided to have the hysterectomy first because as a hospice social worker, I know ovarian cancer has really no symptoms and you usually don't know you have it until it has really spread. I got three opinions formally and also talked to my friends who are doctors and nurses. ( and an ex boyfriend who is an MD) They all agreed . I intend to get the mastectomies in the next two years. I will need more time off work for that one . My obgyn/oncologist said I should schedule my surgeries around my life and not the other way around . I am more scared for the mastectomy part. I would love to be in any study!!! That would be awesome!! Hook me up with info. My sister also has the mutation. My main doctors are Dr wickerham and Dr. krivak at allegheny health network ( if you don't live far)

Debonyx

http://www.ncbi.nlm.nih.gov/m/pubmed/21815143/

Just one Lung cancer study

http://www.ncbi.nlm.nih.gov/m/pubmed/23222812/?i=7...;from=bard1%20neuroblastoma

Just oneBrain cancer study

Ddw79

I watched both my mother and my first cousin die of BRCA 1 related ovarian cancer. As soon as I entered menopause ( early ) at age 40 I had my ovaries out. Turns out I do not have any known mutations but now 25 years later I am at high risk for BC anyway. I feel so helpless about this at times because I've tried so hard and I'm still at high risk. No ovaries but no PMX yet either

Debonyx

I know how you feel DDW79. Hang in there sweetie. I know that I really have no true control . Cancer will most likely get me in the end. But I intend to do my best and fight until my time comes

shann44

Hiya, I've had melanoma at 31, extensive multifocal DCIS at 34 that led to a bilateral mastectomy, and then, 13 years later, another bout with breast cancer, this time invasive. I have an extensive family history with cancer, mainly breast cancer (mother and I had it at the same time the first time and she died of it, and her mother and grandmother died of it, plus two great-aunts with breast/ovarian cancer). Just found out I'm BARD1 positive (BRCA negative). My gyn-onc says I need my ovaries out, even though I don't think there is evidence that BARD1 causes ovarian cancer. I'm 51 and almost menopausal, but still, I'd rather keep my ovaries if I don't need to lose them because of the long-term adverse effects of being without. Am I crazy to want to keep them? (I had six pregnancies and one live birth--major depression issues after each lost baby. Hormones have always been problematic for me. I can deal with hot flashes/night sweats, but the emotional lability scares me).

Debonyx

There are studies that have shown BARD1 mutations to increase ovarian cancer risk. ( I posted one link below) . That said , we all have to walk our own path and make the best decisions for our own lives. I was in the process of menopause with no periods for about 8 months when I had my surgery. I figured my ovaries were not working much longer anyway. I was having hot flashes all the time anyway. One thing about ovarian cancer is there are no real symptoms. It can spread all over without a way to test for it . For me, the laparoscopic surgery was not anywhere near as bad as my two c-sections . I recovered well and now I don't have to worry about ovarian cancer. I have been lucky with my mood so far. I did have some postpartum depression with both pregnancies. Emotionally, the fear of having cancer is a higher risk for mood problems with me. The worry weighs on me.

http://www.healio.com/hematology-oncology/gynecolo...

adgysgirl

@ debonyx... I just found out a week and a half ago that I have the BARD1 mutation....BRCA1 and BRCA 2 were both negative. I have an appointment scheduled with an Oncology Geneticist at Allegheny Health Network (Wexford) in January...potentially the same office you went to. The not knowing what to expect is driving me crazy. I feel like I'm walking around with a ticking time bomb on my chest. (Crazy? Maybe) My maternal grandmother and great grandmother were both diagnosed with and died of BC in their 30s...I am 37. I have a personal history of 2 lumps that have been biopsied and, thankfully, were benign. I also have a personal history of pre-cancerous skin lesions...and had a hysterectomy when I was 30 due to adenomyosis (I still have both ovaries). My local OB/GYN didn't even tell me to see the geneticist...in fact, she said that I should just be thankful that it wasn't BRCA. While researching the mutation on my own I found that it was recommended to see a geneticist...particularly with my personal and family history . To try and put my mind at ease, can you offer any insight as to what to expect with the upcoming genetics appointment? Will they make a treatment recommendation based upon my personal calculated risk ? And if so, based upon your personal experience , how receptive was your breast surgeon to following that recommendation ? I work for a plastic surgeon and I know he will be amazing...it's everyone else I'm worried about . I feel like they will think I'm crazy for just wanting them off my body. Thanks for listening and for any peace of mind you can provide. Sincerely, Sleepless in Brockway

megomendy

I had triple negative breast cancer 3 years ago and was just starting to relax a little and hope and pray it would not recur. Last month, my younger sister (age 46) was also diagnosed with TN and also tested positive for BARD1. I saw a genetic counselor last week. I had the blood test and am waiting for results. The genetic counselor is at CINJ, which is a NCI affiliated cancer center and is not recommending that I have a PM or have my ovaries out. She said there is so much they dont know about it. My mother also had BC 32 years ago and did well. My sister will probably have a bilateral as she is having chemo now, she's young and her kids are young. I am meeting with my MO next week who is at MSK so I am curious about her take on all this. Will update when I know more.

Debonyx

adgysgirl, some people will think you are crazy. I say, so what! Everyone I know who has had cancer says do the surgery. Dr. Wickerham was the most conservative of the opinions and said to wait for more study but that most likely, I should get the surgery. He said he would do the mastectomies if I found it too stressful to wait. He recommended breast MRI and mammograms alternating every three months until the surgery. ( funny story, someone stole my shirt/ tank top/ bra, while I got a mammogram at AGH. They would not let me go home in the gown so I drove home naked under a coat like a stripper) Dr. krivak and Dr.Noh said the surgery was the smartest thing to do with my family history. They were both reassuring but honest and said if it were them or their family, they would want the surgery, no doubt. I don't doubt the hysterectomy at all. Such a relief. Now, every bump or cyst change in the boobies freaks me out. I plan on making another appointment this month with the breast doctors to talk about plans for mastectomies . Hang in there. You got this! You have to listen to that inner voice and not all the outside ones. Gather info and think on it but trust your intuition.

nmprovo

I know this is a very old post but I’m hoping you might see this. I’m in Dallas to and I have a BARD1 mutation as well with a family history (my grandma and great-grandma) and ive seen 2 surgeons who did not want to do a prophylactic mastectomy. You mentioned you saw 2 surgeons who supported a mastectomy if you wanted it. I was wondering if you’d be able to share who those surgeons were?

gigibee

following as I too have this variant ..

Mknausz

I love Dr Ganaraj at Presby Dallas

wombet

@nmprovo.....I read your post and I just wanted to weep. My daughter who has the bard1 mutation was just diagnosed with breast cancer. She knew the risks but due to health reasons a PM wasn't an option. I wish we had done it anyway, because I am not sure she can survive the chemo as she is in poor health already. The Bard 1 mutation is not being taken seriously enough. With a family history and this mutation I cannot understand why any surgeon would not be willing to do PM.

Mknausz

Hi @wombet - I'm so sorry to hear the news about your daughter. How old is she? What kind? I see that you've commented above and that you and your sisters have all had breast cancer. I'm so sorry - that is horrible! Please keep me posted about your daughter.

I had another baby since my original post and am so blessed with three little girls (5/3/1). I had a mammogram and an US in February while still breastfeeding, both were negative. I go for my MRI (first one in a few years) on Friday afternoon.

wombet

@mk....my daughter is 40.  We don’t have the path report back, but I know it’s triple negative and she has two tumors, largest is 1.8 cm.  It’s so hard to watch my daughter go through this.  Good you are doing MRI’s.  My one sister freaked out and got a bilateral  mastectomy and had her ovaries removed.  Turns out she is the only one who doesn’t have the BARD 1 mutation, so all for naught.  I read somewhere that one oncologist said to a patient to consider the Bard1 just like a brac 1 or 2 mutation.  Have to agree with this.

Thank you for your kind words.  Best of luck with those precious little girls.

Mknausz

Wow, she's so young! I'm 36... Hopefully today's MRI is clear. I will keep your daughter in my prayers.

wombet

Prayers are greatly appreciated.   Her name is Natalie.  Will keep you in my prayers that all is well with you, too!