genetic testing

BonnieR · January 2004

Hello, I had ovarian cancer 3c, it had spread to my liver,spleen,abdomen,colon, one tumor had wrapped all the way around my appendix - in other words it was bad. But now no signs of cancer. Because my sister had already had ovarian cancer a genetic test was done and it came back that I have the BRCA2 gentic defect. I would not talk about another surgery at the time but did agree no hormone replacements and a mammogram twice a year. I know in February they are going to want to talk about preventive surgery as my odds on getting breast cancer are in the 90% area(so they say). Has anyone done this? I really don't want another surgery but don't want to deal with cancer if I don't have to either. Any comments yea or nay will be appeciated. Thanks BonnieRose

hummingbyrd · January 2004

CONGRATULATIONS! On being cancer free!.....but I just have to ask first off
"How the heck did you do that?" : o
hummingbyrd

BonnieR · January 2004

hummingbyrd said:
CONGRATULATIONS! On being cancer free!.....but I just have to ask first off
"How the heck did you do that?" : o
hummingbyrd

lots of prayer and participated in a study group. I only finished chemo July 17th so one never knows what the future holds. bonnie

hummingbyrd · January 2004

BonnieR said:
lots of prayer and participated in a study group. I only finished chemo July 17th so one never knows what the future holds. bonnie

You're right on both accounts. There is power in prayer, and no one knows what the future holds.
I'm afraid I can't help you on the issue of prophalactic mastecomy's. I will say I had a 4cm lumpectomy w/ 27 lymph nodes removed, 13 were positive. A year later I had a 4 mm, tiny spot, taken from opposite breast. Based on that I guess I'm not big on mastectomy's. For mammograms I do strongly recommend the CAD mammography. Best suggestion, pray, ask for God's wisdom in making your decision. Ask him to show you in a way that you can plainly see, then pay close attention to what He says.
God speaks, but sometimes it's a whisper. hummingbyrd

inkblot · January 2004

Hi BonnieR:

So happy that you're healthy and well!!! Stories like yours are tremendously inspiring! Thanks for sharing it with us.

Genetic testing opens a whole can of worms and I don't think anyone knows exactly what is the best or right thing to do or how to proceed. It's a
slippery slope at best.

Research has shown that there is a link between ovarian and breast cancer but it doesn't always have to do with the BRCA gene. Once we know that we carry the gene, then what? Research has also shown that having the gene doesn't mean you'll
get cancer. And how do they come up with the "odds"? 90% seems awfully high. It's a tough thing to decide what to do. Also, if you have children, then you must decide how to handle the knowledge concerning their futures and/or testing for them. Do they need to know? What difference will it make to them? What steps can they take to take better care of themselves? Would they take any additional steps anyway? Would it just worry them, make them hypervigilant and adversely effect the quality of their lives? How far are you comfortable going to try to insure that you won't get breast cancer? Double mastectomy, (anyone here will tell you, as will any honest doctor, that a mastectomy does not, cannot, 100% protect anyone from breast cancer as it is impossible to remove 100% of breast tissue) complete hysterectomy (if you still have an ovary, uterus, etc.), preventive drugs, which can and often do have side effects? Or maybe an approach which involves better health practices, such as supplements, avoiding exposure to known carcinogens (which can switch on certain genes),
careful diet, limiting fat and sugars, daily exercise, regular check ups, with mammo's? Just a few things which come to mind, as there are many more things in the preventive arsenal, which could be beneficial. What's reasonable for you, as an individual? What are the insurability ramifications if your positive results for the BRCA gene find their way into the medical data banks? Can it adversely effect your employment/career? SO many questions and only you can decide what's right for you, depending upon how you feel, together with careful information gathering.

I really don't think anyone can advise you "yea or nay" on preventive surgeries, etc..
My advice would be to read and study all the solid research you can find on the subject. Talk at length with a genetic counselor...maybe even two. Talk more with your doctor(s) and those close to you and then try to decide what's best for yourself. There is no "script", medical, legal or ethical for how to proceed once you test positive.

Regarding that 90% your doctor put out there for you: I'd want to see some substantive info, supporting how he arrived at that number. Some docs are good at scaring people too much and can't really back it up, scientifically.

Just my thoughts about it. Whatever you decide, it must feel right for you and it must make sense to you. Assuming that your sister also tested positive for the BRCA gene, what did she do and what did she learn from her experience? That may go a long way in helping you decide what's best for yourself. Just take your time as you don't want to make decisions you may regret later. Don't let anyone, doctor or otherwise, push you into anything you're not completely ready for.

Love, light and laughter,
Ink

dresch · January 2004

i was dx with brest cancer in my left breast last june and am BRCA1 positive. I was also told of the odds of having ovarian cancer and another or recurrance of the same breast cancer. The odds were pretty high if I kept my ovaries and my breasts. I was fortunate and caught the cancer early. I finished chemo in October. I opted to have my ovaries and fallopian tubes removed and also have a bi-lateral mastectomy all for prophylactic purposes. My reasoning was that I would always be worried of another cancer scare and if I did come down with cancer again, I would have really thought that I shold have done the prophylactic surgeries... I am 42, have two grown children and would have gone through the change with the chemo anyway. My left breast ws deformed from the lumpectomy. So, I thanked my ovaries and fallopian tubes for giving me my wonderful children and i thanked my breasts for giving life to my children and giving me pleasure and then I explained to them that they were going to be removed to ensure that the rest of my body stay healthy. It is a real personal decision. I just don't want cancer to continue to be part of my life experience, so I decided to let em go...Best of luck to you

lisanaro · January 2004

Hello, your story gives me so much hope.
My mother was diag. with Stage IIIc in 2001 and has done beautifully with her treatment, although it was very tough on her, she's 64, and
full of vim and vigor. Had surgery in Phila and
then we went for 2nd opinion to M.D. Anderson in
Houston. She is being more closely monitored with cat scans every 4 - 6 mos. Where did you
receive your treatment?? and what was the study
you participated in? Stay well, Lisa Naro

lynne40 · January 2004

hummingbyrd said:
You're right on both accounts. There is power in prayer, and no one knows what the future holds.
I'm afraid I can't help you on the issue of prophalactic mastecomy's. I will say I had a 4cm lumpectomy w/ 27 lymph nodes removed, 13 were positive. A year later I had a 4 mm, tiny spot, taken from opposite breast. Based on that I guess I'm not big on mastectomy's. For mammograms I do strongly recommend the CAD mammography. Best suggestion, pray, ask for God's wisdom in making your decision. Ask him to show you in a way that you can plainly see, then pay close attention to what He says.
God speaks, but sometimes it's a whisper. hummingbyrd

hummingbird, what is a CAD mammography or mammogram? I am unfamiliar with this term. Is it readily available? and what are the pros for it? Thanks, Lynne

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