BRCA -1 New Diagnosis

• By southerngal
• Posted September 2, 2009 at 12:14 am
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Hi, Jennifer,

Yes, you are taking the right step. Better to avoid cancer by doing this and the risk of occurence of ov ca starts going up dramatically in your 40s. With breast and ov ca running in your family I'm sure you need no convincing on that point.

You may have some menopause symptoms, but your docs should be ready to help you out with that. There is an antidepressant that helps with hot flashes, but I must admit, I don't remember the name.

I've had ov ca (survivor for 4 years!) and this year had prophylactic mastectomies and reconstruction.

Have you found the FORCE (Facing Our Risk of Cancer Empowered) website yet? www.facingourrisk.org You need to check it out, too.

Good luck to you!

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• By patries
• Posted September 2, 2009 at 2:55 am
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Hi Jennifer, I had my ovaries removed in september 2004. Also BRCA1. Mom had OVCA and my sister BC. Still I was dx with OVCA in oktober 2006. So have yr CA125 checked at least 2 or 3 times a year.
Goodluck to you

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• By 10yrsurvivor
• Posted September 2, 2009 at 3:01 am
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I think you are doing the right thing. Going through the surgery you are facing isn't easy, but it far better than going through a debulking surgery and facing chemo. When I was in my early 30's I begged my doctors to remove my ovaries when I had a hysterectomy and they wouldn't even consider it. I am 60 and often wonder if they had would I have gone through ovca. Oh well, that is the past and I have survived for over ten years. I had the BRCA tests for my daughter's sake. My sister had breast cancer and me with ovca, but my tests were negative for the gene, even with strong breast cancer family history. My sister had her's checked as well and it was also negative. It was a difficult test to take. I would have faced decisions about my breasts being removed.
I hope my sharing has helped you. Linda

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• By katelynsmamaw
• Posted September 2, 2009 at 6:50 am
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I dont know much about this test but I say once your done with having a family or even have an increased risk of getting it, get those suckers outta there!! They are big trouble makers, always up to no good and always looking to cause trouble!! LOL ;)

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• By kalo555
• Posted September 2, 2009 at 10:02 am
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I think you are taking positive steps to protect yourself. You mentioned that you will have surgery to remove ovaries and fallopian tubes. Will this include removal of uterus ? I would think that might be wise as well.

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• By cubsmom
• Posted September 2, 2009 at 2:36 pm
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Hi. I was diagnosed with Ovarian Cancer last May at the age of 41, after suffering a miscarriage. My Father's Mother died from metastized breast cancer in 1973 at the age of 53 - she was diagnosed at 46. She is the ONLY family history of cancer, but my insurance covered the BRCA testing as my female history contained benign pituitary tumors and extensive endometriosis. I was BRCA-1 positive (only the 2nd patient my Oncologist has ever had test positive). I chose to have a prophylactic double mastectomy (August 13th of this year). I am at home, recovering, and find it much easier than my hysterectomy last year as my surgery was not complicated by any cancer this time. Also, the way I see it...I was told I had an 87% percent chance (not if, but when) to develop breast cancer...everyone's advice to me was to wait on the surgery as I'd only come out 90%, with a 10% chance I'd still get breast cancer...but what I saw was 177% better chances (-90 + 87) of surviving without the complication of another cancer. Whatever you decide, it will be the right decision for you. Don't second guess yourself. Keep us informed, and I'll keep you in my thoughts! Karen.

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• By jdlocke
• Posted September 2, 2009 at 8:20 pm
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Thanks Karen. I really appreciate the advise. I think I must be getting the pre-surgical jitters. Not really of the surgery itself, but if they find anything during surgery. So far, all my tests are good, except for the cysts that I have on both ovaries. I haven't had any symptoms except for this month. I have had a 3 week long period, lower back pain which radiates around to the lower pelvic area, esp r side. Getting a bit nervous. CA 125 normal a couple months ago. I am also a bit nervous about side effects after surgery- not sure how I am going to react to the sudden loss of all hormones. Is weight gain common? I am also considering prophylactic mastectomies in the next year or so as well. I have a super supportive husband, and 3 little kids to help me get through all this. As well as this great website where I can go and read other similar stories and get advise. Have a great night- Jen

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• By jdlocke
• Posted September 2, 2009 at 8:21 pm
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thanks....just found FORCE. There is a discussion group that looked interesting to me about pre-vivors. I haven't done much on that website, but thanks for all the advise and support! Jen. Will keep you informed after Sept 15 surgery....

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• By jdlocke
• Posted September 2, 2009 at 8:22 pm
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You were still dx with OVCA after having your ovaries removed? Scary.....

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• By jdlocke
• Posted September 2, 2009 at 8:23 pm
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yes, done having kids. :-) And yes.... getting them outta there!

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• By jdlocke
• Posted September 2, 2009 at 8:24 pm
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No, keeping uterus. Just tubes and ovaries. Will most likely do prophy mastect in next couple of years. thoughts?

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• By patries
• Posted September 3, 2009 at 2:47 am
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Hi jdlocke, yes its scary indeed, getting ovca with no ovaries. I was advised to have my ovaries and tubes removed, Utures was not necessary. Now i think I made the wrong decision. A part of the tube will be left behind, its not possible to remove it all as the tube is connected with yr utures. Then you will have 2 small holes in yr utures. My advise to you is.... take it all out.

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• By cubsmom
• Posted September 3, 2009 at 8:16 am
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Jen,
There really were no side effects to the surgery. I had a very long vertical incision (above belly button to where my c-section scars are) and it took a while to heal, but other than that I felt pretty good. No lifting of course. I had already had pre-menopause symptoms, so I suffer from extreme hot flashes (still). I also have little kids (3 and 6), big kids (13 and 19) and a supportive husband who convinced me that what I look like holds no importance to them, as long as my surgeries help to keep me around longer. Also, with regards to Patries response (above), my cancer was contained to my right ovary but also spread to my uterus with no involvement of any other area (fallopian tubes, etc.)...It got "stuck" in old endometriosis adhesions and did not spread from the outside of the uterus. I also would just "take it all out"...Best wishes on your surgery. Feel free to contact me if you have any questions. Karen

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• By acosta1027
• Posted September 3, 2009 at 8:55 pm
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I am facing a similar decision. I was dx with ovarian cancer in 2007 and had a recurrence this year (just finished chemo). I have BOTH BRAC 1 and 2 and need to decide about having the double mascectomy. One of my 3 sisters tested positive for BRAC 1 and had a mascectomy last November and is just now finishing up the whole process. I want to have a break from doctors and appointments so I really don't want to expose myself to more surgery, pain, reconstruction, etc., etc.. but know it's the smart thing to do. Those of you who have had the surgery, can you tell me more about your experiences?

Thanks!
JoAnne

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• By verlinda
• Posted September 3, 2009 at 11:55 pm
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I'm going to be the dissenting voice on the prophylactic mastectomies. If your ovaries are removed your chances of breast cancer are 50 %, not 87%. Having said that, I certainly understand and support all of you who choose to have the surgeries.

However, these are not risk-free surgeries. When my mother had breast cancer, she had an allergic reaction to the surgical tape used at the time which caused an infection which kept her in the hospital almost a month. One of my friends had a double mastectomy for stage 0 cancer a couple of years ago. She kept getting infections and had to have two additional surgeries. She has healed and is doing fine now. (In her case, since she did have cancer, I'd have had the mastectomies, too.) Most people make it through the surgeries without complications.

I'm BRCA1 positive and had ovarian cancer--no uterine and no fallopian tube cancer unless there's something the reports and the gyn/onc didn't tell me.
I decided to go with the twice annual mammograms with the breast MRI every other mammogram.

The chances of getting breast cancer are about 2% after having the prophylactic mastectomies. The explanation I received was that it was never possible to remove every single breast cell, so there can still be very rare occurrences of breast cancer after surgery.

The cancer women can still get after having their ovaries removed is peritoneal cancer. It's classified as an ovarian cancer and is rare but possible. Medical folks, can y'all weigh in with more info? As I recall, the lining of our uterus is peritoneal tissue and it also lines much of of our lower abdomen. I'm not sure of this, so don't take it as fact.

Fluid-filled cysts are usually a good sign. The cysts with solid areas are usually the problem. The CA125 is probably a good sign, too. However, it's not a reliable marker for some women. I'm sure they'll biopsy your cysts and ovaries, so you'll know shortly after surgery.
Cysts can cause prolonged and heavier periods.

Let us know how things go. I think the oopherectomy (never can spell it) is a very wise choice; there are so many areas for ovarian cancer to spread, and it happens with such quiet intensity. I made the decision to keep my breasts because I was sick of surgery and figured we have such better detection for breast cancer that I'd rather wait and be sure they needed to come off. I'll let y'all know if I made the wrong choice!

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• By southerngal
• Posted September 4, 2009 at 4:43 pm
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My 2 cents worth:

We've got BRCA1 mutation in 4 generations and it was carried on my dad's side of the family. Cancer runs through our family like water through a sieve.

My sister had breast cancer at age 36 and mastectomy on one side and some recurrence problems. She had autologous bone marrow transplant around age 39. She had tram flap reconstruction. At the time BRCA testing was new and she didn't meet the criteria for testing at that time. She is fine now at age 52.

I had IIIc ovarian cancer at age 51. It was at that point we had the genetic testing. Also had a first cousin twice removed with ov ca at age 28, an aunt who died from metastatic breast cancer in the 1970's (she was around 40), 2 great aunts with breast cancer at advanced ages, cousin once removed with prostate cancer. Grandfather had lung and bladder cancer.

My first cousin and sister were elated to find out that the abnormal BRCA is what our family's culprit is. The fact they could be proactive with the prophylactic mastectomies & reconstruction and removal of tubes & ovaries instead of wondering where and when cancer would hit was a relief. They had that done pronto. Insurance covered it.

On the other hand, I decided to use increased surveillance for awhile because I wasn't ready for another big surgery. So, I had many breast MRI's, ultrasounds, and mammograms.

After 5 core biopsies and a lumpectomy in one breast, I decided that was no way to keep going. The ticking time bomb, you know. So, I took the plunge and had prophylactic bilateral mastectomies with immediate free flap (DIEP) reconstruction and hernia repair. I did not miss my breasts because I woke up from surgery with breasts. I had my stage 2 surgery done this past month.

Did I have some angst beforehand? Sure, I did, but I was already doing that with the biopsies, etc. Am I glad I took the plunge? ABSOLUTELY. I think just this week I realized how relieved am I to have this behind me. And my foobs (false boobs) look fabulous.

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• By cubsmom
• Posted September 4, 2009 at 10:05 pm
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Hey Joanne...I had the surgery 8/13/09, 3 weeks ago. I came out of surgery to the recovery room at 5:30 p.m., and was "out of it" for the entire night. Woke up in the hospital Friday morning, was told I was on a full soft diet, ordered coffee and Sprite, and went back to sleep on the pain meds. Saw my hubby and kids and a friend and her husband in the late day. Went back to sleep. Woke up Saturday morning, and was told I was going home. No more "you have to show us you can eat and void before you go home". Even a double mastectomy is done as "drive-thru" surgery. I was in 4 days with each C-section. Have to say though, now that both drains are out, I feel good and am looking forward to starting the tissue expansion.

I WENT INTO THIS SURGERY WITH A BETTER ATTITUDE THAN THE SURGERY LAST MAY (COMPLETE HYSTERECTOMY) AS THERE WAS NOT THE COMPLICATION OF ALREADY HAVING THE CANCER, SO I KNEW THERE WOULDN'T BE FOLLOW UP CHEMO OR RADIATION AND THAT I COULD "JUST RECOVER". THIS WAS MY 20TH GENERAL SURGERY IN 19 YEARS. IT WAS ONE OF THE EASIER ONES...

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• By acosta1027
• Posted September 5, 2009 at 9:14 am
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Thanks for sharing your stories. I will continue to pray for guidance in making the right decision for me.

JoAnne

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• By cjs08
• Posted September 5, 2009 at 9:30 am
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Hi Jennifer,

You are doing the right thing, or did the right thing as this is a post from a few weeks back. I am also brca1 + and had an oopherectomy 3 years ago. I had a similar situation: strong family history with BC and OC, also had some cysts on tubes/ovaries. I had my surgery at 38. I am now 41. I did struggle the first 6 months dealing with sleep loss and hot flashes-not to mention a few other things! But the surgery is so worth it considering your risks. I am anxious to hear how you are doing. I didn't get much help from anyone with regards to menopause symptoms. the drs were not very interested in helping me out there. It is very important to protect your heart and your bones. You are still so young. Take 1500 mg or more of calcium for your bones. Take a fish or flax oil for your heart. Exercise is also very important. Get involved with yoga. Impact exercise will also help your bones. (walking/running) If you are having trouble sleeping there is an herb called Valarian Root. I strongly recommend it if you are struggling with sleep. It is NON habit forming. It does not stay in the system very long. You should be able to purchase at your local grocery/target etc. I also use a very low-dose of Vagifem. It is inserted vaginally. I was told by the oncologist that brca 1 cancers are not sensitive to estrogen like brca 2 's are. Hope I'm not being mis-lead there. I am planning to have BI-Lat done within the next few years. I am so tired of hospitals/surgeries, I needed a break. I'm so glad you have a supportive family-that is very important when it comes down to making your decisions.
I have lots of info on natural stuff to help you cope with the menopause symptoms if you want any advice.
God Bless-
Caryn

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• By jdlocke
• Posted September 7, 2009 at 9:08 am
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Thanks for all the great info, Caryn. No, I didn't have my surgery yet- Sept 15th. I can't wait to have it behind me. Right now I am trying to decide on if I just do ovaries and tubes, or ovaries, tubes and uterus. I am also a bit nervous for the side effects after surgery. Thanks for all the great info on the meds/supplements to take. I will definitely have them on hand. My gyn has already talked about HRT for the next 1-2 years to "take the edge off". Good idea? If you don't mind, what were the other side effects that you had to deal with the first 6 months? Good luck with everything on your side too. And have a great rest of your labor day weekend- Jen

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