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10:36 am
May 11, 2010
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smitty
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Good morning, ladies,
I read the posts from http://previvorsandsurvivors.com/forum/have-a-question/oophorectomy-experiences-needed/page-1/ , it was helpful, thank you. My specific question….Have any of you tested positive for the gene, but opted NOT to have an oophorectomy? How reliable of a screening tool is the transvaginal ultrasound?
My history (a short novel) ..I am 39 next month, married w/two children. Two family members w/breast cancer history makes me higher risk. Mom is a survivor, aunt died. I have had mammos for 7ish years, and added annual breast MRI three years ago. Family history of osteoporosis (grandma fell and broke her hip-died from a complication).
All along I have told myself that I would have the genetic screening/follow through done by the age of 40. I am strongly leaning towards testing. I have had counseling. Doc (whom I adore) is realling encouraging me to have genetic testing. If positive, she says I can keep my breasts (I see her every 6 mo, she's optimistic that if I get breast cancer, we will catch it early). She would want me to go on tamoxicifin for 5 years, plus she wants my ovaries. With our family history of osteoporosis, no ovaries really scare me (but not as much as oc does). It's so difficult to make decisions when it's a numbers game, and I tend to overthink things.
I hope to hear from some of you! Thank you! Jen
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5:15 pm
May 11, 2010
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TOBEYRDH
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Hi Jen,
Loaded question you have there!
vigilance…osteoporosis…menopause…tamoxifen…ovary removal…mastectomy…
These decisions we have to make are momentous, but these decisions should be yours. Your job is to inform yourself of every option & every lasting result that your decision will leave you with. Tamoxifen therapy is not without possible side effects as well. Please read here:
http://www.cancer.gov/cancertopics/factsheet/Therapy/tamoxifen
Transvaginal ultrasound, mammography, MRI, CA125 screening—these are all tests. They also are not fail safe! If they were, we would not be taking these drastic measures of removing our breasts & ovaries Jen.
First…you need to find out whether or not you have the gene. 50/50 crap shoot…if you don't have it—your decisions are not as urgent … if you do have it….INFORM YOURSELF OF EVERYTHING & then make the best decision for yourself. We're all here for you. Best of luck…Be well.
Tobey
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5:22 pm
May 11, 2010
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admin
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From Dr. Jonathan Herman:
testing would really help in this situation
a positive says take them out
a negative says you can leave them
if you would like additional info let me know
jdh
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7:49 pm
May 11, 2010
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ebaby
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I agree with poster above. Ov cancer history in my family is very strong. Once i found out my deceased aunt had BRCA1 I decided I had to get tested. Also a 1st cousin has cancer now. So I could no longer feel comfortab le with surveillance. my ooph/hysto is scheduled for next week – only 2 months after getting positive BRCA1 result.
It's only my opinion/experience, but being slightly over 40 and BRCA1+ I feel I have no other choice but to do the surgery. The testing made my decision CRYSTAL clear. Called the doctor the day I got the result and got the ball rolling. Prior to testing I was trying to put off the surgery and living with the anxiety of surveillance and possibly finding something too late. The genetic results made the decision much easier for me.
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9:50 pm
May 11, 2010
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Lyn
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Real easy answer……..
Please G-d how I hope you don't test positive for the BRCA gene…..HOWEVER, if you do…….GAME OVER. You take out every lil organ that is going to try to kill you!
Then you enjoy your life:)
Good Luck!
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9:54 pm
May 11, 2010
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Lyn
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ebaby said:
I agree with poster above. Ov cancer history in my family is very strong. Once i found out my deceased aunt had BRCA1 I decided I had to get tested. Also a 1st cousin has cancer now. So I could no longer feel comfortab le with surveillance. my ooph/hysto is scheduled for next week – only 2 months after getting positive BRCA1 result.
It's only my opinion/experience, but being slightly over 40 and BRCA1+ I feel I have no other choice but to do the surgery. The testing made my decision CRYSTAL clear. Called the doctor the day I got the result and got the ball rolling. Prior to testing I was trying to put off the surgery and living with the anxiety of surveillance and possibly finding something too late. The genetic results made the decision much easier for me.
Smart girl. I wanted to wish you a speedy recovery & only blessings in regards to your upcoming surgery.
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8:42 am
May 12, 2010
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admin
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I will second that EBABY…We will keep in touch with you. Tobey
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9:11 pm
May 16, 2010
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smitty
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Sorry for the delay, it was a busy week! I have read and reread all the posts. Thank you for all the responses!
I have a lot more research to do. My mammogram and dr. appointment is tomorrow. Doc and I will have a lot to discuss.
You are in my thoughts ebaby. I'll pray for your surgery and recovery to go well!
Jen
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4:27 pm
June 29, 2010
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smitty
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So I finally decided to have the test done and my insurance company will not cover the cost of the test. My pre auth for the test was denied. Insurance requires three relatives to have bc or oc. I have two relative w/bc. I am told most insurance companies only require two relatives. The patient advocate at my dr. office said appealing the decision is a waste of time. This is so frustrating! Jen
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5:00 am
July 5, 2010
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Lyn
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Contact your local Breast Cancer Coalition & ask if there are any funds available to aid you. Contact your local Breast Health Center. Contact ALL your Doctors, Genetic Counselors & ask if they are aware of monetary aid. Nurses are wonderful resources as well. Where do you live??????????
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