I Tested + for BRCA 2 Gene Mutation - Hereditary Breast Ovarian Cancer Syndrome

Updated on August 17, 2008
J.D. asks from Northbrook, IL
4 answers

I just tested + for BRCA 2 gene mutation. My family has hereditary breast ovarian cancer syndrome (HBOC) in it. My risk now is up to 27% I'll get ovarian cancer and 85% breast. Anyone else out there BRCA 1 or 2 positive? What did you do? Who did you see?

I saw the genetic counselors at ENH (loved them). They recommend I have my ovaries and tubes out within 6 months. Now I will see my gyne, a gyne oncologist, breast surgeon (all at ENH) and also get 2nd opinions, probably at U of C. I know there are surveillance options too, but for ovarian cancer that can be so risky since the screenings are so poor and the treatments don't do much. Most Ov cancers are found at stage 3 or 4 and are incurable. I know about www.facingourrisk.org but haven't had much time to look thru the site or post.

I'm 39 and done with kids (for medical and financial reasons). I also have endometriosis. I'm on Medicare (for a disability - fibromyalgia) and they won't cover the breast or ovarian cancer screenings or surgeries. They might cover it if they take out my uterus too for the endo.

My dad died of stomach cancer, my brother has pancreatic and there's 11 other family members that have had breast/ovarian/colon or prostate cancer in my dad's and previous generations.

We also are trying to sell our house. DH has his own business, but now is trying to find a full time job outside of the home. We no longer can afford babysitters or cleaning help, which I need due to the fatigue I already have w/ the fibro. Pretty stressful around here.

Thanks so much!!!

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answers from Chicago on

I just had to respond to you and tell you how much my heart is hurting for you and your whole family. Yet, I can feel the soldier in your words. I am not a cancer patient, but have known several with breast and pancreatic cancer who have had unbelievable treatment at The Block Center in Chicago. They take a more holistic approach to treating cancer that includes chemo and heavy doses of vitamins. My neighbor is a pateint there and my bosses wife is being treated for breast cancer. They both are doing well considering their's were very advanced stages.

I just wanted to wish you the best and know that it is very difficult going through treatment, but if I could help you out in any way I would. I am a health and wellness consultant. With what you are going through and will have to go through, your body is very weakened by all of it. You have to be very careful as to what goes in and on your body and I would recommend a line of botanically based products that the Block Center endorses as well for you.

Your fibromyalgia can use lots of Omega 3's to help with inflammation. Plus you need to detox your body to get rid of the toxins that caused this cancer. Almost all cancers develop because of the toxins that are stored in our bodies that we can't get rid of on our own. Our bodies don't know how to process them and therefore "put" them in places such as fatty tissues like the breast. Elimination of these is essential!! If you would like more information on product that you can use that is safe and won't be taxing on your body, I would love to help you out. I also know of a great detox coach that can help you with the detoxing process. She is a "regular" on this website and is a wealth of information.

J., my prayers are with you all and know that there are people who care and willing to help out in any way we can. Keep your faith and your strength. Get to the doctor immediately and start taking care of you with detoxifying and using the right products. I would be happy to assist you in any way. Please email me for more information and know that help is near.




answers from Chicago on

Hi J.,
I'm terribly sorry to hear about your dianosis. I would suggest looking into The Body Ecology Diet. It was developed for people (pretty much everyone), who have an overgrowth of yeast in their diets. The book lays out a whole new way of eating that will help eliminate the yeast and get your digestion working properly again.
When the digestive system is overgrown with yeast we crave sugar and carbs. These things totally paralyze our digestive system and then we get all sorts of aliments; autism, cancer, you name it.
The book stresses eating pro-biotics which you can make at home. I highly recommend checking it out. www.bodyecology.com Please feel free to email me if you'd like to chat or need support. We've been on it for about a month now- because my son has food and enviornmental allergies and was beginning to show early signs for autistic spectrum. I believe with therapy and diet these things can be fixed. All the best to you!



answers from Chicago on

First of all i am sorry to ehar bout testing positive but I am so happy to hear you have found this all now and are willing to take charge for yourself! I also wanted to add that a lot of your fibromilagia pain could and most likey is from the endo. Endo does strange immunological things. I am thinking you should find a good reproductive immnologist and once you get your blood testd some more for immnological things too they can help.
I am also writing because I too m really becoming debilitated from my endo and the pain in my body is all over and the drs cannot put me on birthcontrol since I am over 35 and have a blood clotting disorder already. I was intereed in doing a lap (laporscopy) to have the endo removed to hold me off a year but the gyne too is afraid for blood clots etc. My hematologist suggest I ahve a full hystorectomy at the age of 36. I am not ready and was hoping to do the lap to buy me some time at least a year and then look into options for freezing my eggs incase. I have three children two biological but if for some strange reason my family was wiped out and I was to start all over again with the right person I would like to have the options of a child with this new man. Thinking way too much and way too negatively.
I guess I am just wondering how you are feeling about taking your ovaries and the hormone replacement can you even do it if it can lead to the breast cancer ? I just feel like I am stuck and have no options too.
Write me when you can and let me know your gyne, i am not sure mine is even good with surgery. ugh
take care and the best to you



answers from Chicago on

Hi J., Wow! You've got your hands full! Bless you. I am in treatment for breast cancer (found lump while nursing), and did genetic testing for, it's so many generations (mom's side) of breast cancer. My results came back negative, yet I was told, maybe there is another genetic component that is not yet understood, so to stay connected to the genetic center for updates. I've just finished chemotherapy at U of C and have to do some type of surgery (pray for lumpectomy) and then radiation. OY. Anyhow, I'm writing to recommend Dr. Olepade (sp) at U of C as a geneticist. She's really at the TOP of her game. Hang in there, figure it out and know that this time will pass. Best! D.

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