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I was wondering if anyone knows about genetic testing for ovarian cancer and what the process is in doing so. Its a little scary to think of. What do you do if it comes back positive? My mother had ovarian cancer, is it necessarily true I would as well?
linval
Cancer Taxol Surgery Hysterectomy Counseling Prostate cancer Breast cancer Kidney cancer Ovarian cancer Pain Memory Carboplatin Lung cancer Stress
Well, goodness. You are so right about it being an individual decision. We all have to make choices based on what we think is right for us.
The prostate link is interesting. I always figured my ovca came from my mother's side of the family, where both it and breast cancer abound. But maybe I got a double whammy. My late father developed prostate cancer. One of my paternal first cousins had ovarian cancer. I am also a DES baby, so maybe this was my destiny from the minute I was born. If so, I wish somebody would have told me!
If there is BRCA in a family, you not only want your boys to test to see whether they are positive because of their increased risk for prostate (and breast, although still around 2%), but because they can pass the genetic mutation to their children and eventually to a female descendant. Although both my parents had cancer, the geneticist felt fairly certain my father had the BRCA1 mutation. Each of his 3 children had a 50/50 chance for the mutation. I had it and assume my deceased sister (ovca, too) did because her daughter recently had the test and has the exact mutation I have.
Technically, she could have tested only that narrow range of genes where my mutation was. Because all four of her grandparents had cancer, the geneticist decided to give her the full array. Since she is 35 and she and her husband want to have children, this factored in to the timetable and treatment decisions with her fertility doctor.
By the way, if your ovaries are removed, your risk for breast cancer by the age of 70 drops to around 50%. My geneticist strongly urged me to have the double mastectomy. She kept stressing the 80+% risk. THe drop to 50% with the removal of the ovaries was in my report, but somehow, I don't remember her telling me that. She probably did. I was seven months past chemo and things were still pretty foggy.
Unfortunately, I've seen some fairly severe complications from mastectomy surgery that usually don't occur, but happen often enough that my oncologist was comfortable with my using the more aggressive monitoring rather than the prophylactic surgery.
It's an individual decision, but lately I've found many women treating those of us who decide to go the monitoring route as though we're totally unrealistic and are idiots not to choose the double mastectomy. I wish they'd extend the same respect to me that I extend to them in making the choice they make.
her911.....interesting, the genetic counselor told me that there is a correlation between prostate,ovca and breast cancer. It was her guess that if I tested positve that it might be from my fathers side, due to his prostate cancer. She also told me that if I tested positive that the information would be just as valuable to my son as my daughter because of that reason. WHat we have to keep in mind that is that they don't have all the answers and while testing can provide some helpful information there is much that they just don't know. I think with continued research that genetic testing may become more valuable. I never thought twice about it. I figured I already had cancer so it wasn't at all scary for me to hear the results and by not doing it I would only be keeping some possible helpful information unavailable to my kids. If they came up with newer testing that would provide even more information, I would do it again in a heartbeat
I am interested that you tested negative for the ovarian gene...my father died of prostate at age
62 in the late 1970's...there is an Ovarian Support
group here that published a handout citing prostate
as a risk factor for Ovarian. We have all boys in
our extended family and one of his sisters died of
breast cancer at age 80...my sister had a hysterectomy
at age 35ish but she and I are estranged and there is
no other women in our extended family with breast
or ovarian cancers...a cousin had a hysterectomy too.
I am the only one with ovarian, stage 3c. I am correct
weight and am a Registered Dietitian so I have always
eaten a low fat, non-additives diet and exercised
about 1 1/2 hours each day. I had no symptoms at all
of this disease until I was scheduled for surgery..
I was told that my father's disease had nothing to do
with my ovarian but I think that is wrong information
and needs to be further researched.
from what I have determined, most ovarian cancer is
not BRCCA and most is epithelial, the most aggressive kind. Genetic testing is readily available
and medicare paid for mine...my gynecologist in Florida seemed unaware that genetic testing is widely
available...the test comes in a kit and is sent to some
lab in the midwest and comes back in a couple of weeks. If you are BRCCA positive you need to be
diligent in your healthcare...some people choose
to have surgery, others have frequent testing to make
sure that they do not develop problems. I think it all
depends...Ashkenazi's are more at risk than the
general population, from what I understand. There is
a study now that is recruiting BRCCA positive
subjects so it is worthwhile to have the test if you want to be in the clinical trial. her911
Jennali and PLE:
Thanks so much for the kind words.
For me to get to this point and make an appointment is a big step. Thank you both.
Lisa
Ah, lovemnms, you wouldn't have wanted your mother to feel guilty if it had turned out she was BRCA positive, would you?
I see it as a great gift you can give your children...knowledge that they can use to better protect themselves. I have no biological children, but if I did, I would definitely get tested for their sakes. I think you are wise and fortunate that you can do this.
I am still deciding about testing myself. My doc agrees there is a strong chance I have a BRCA defect. The main reason I would do it would be to see if I would be eligible for some clinical trials, in case my current chemo turns out not to work after all. I would want as many options for treatment as possible, as I intend to fight this beast until I take my last breath.
lovemnms,
AW...Don't feel guilty for something you have no control over. Just be thankful we live in a time when you are able to find out for your children's future. Think good thoughts and don't beat yourself up over this...it will be okay.
Smiles and hugs!
I finally agreed to go for genetic testing in a few weeks. I have been and still am nervous of what the results will be, not for myself or course, but for my 17 yr. old daughter and 14 yr. old son.
My mother died from stage 4 ovca after 9 yrs. She didn't know her father's side of the family, so there is no info there. Her mother died of mouth cancer brought on by smoking.
I'll be forever guilty if I'm positive and it affects my children.
My wife's mother and grandmother both passed away from ovarian cancer in their 50's. While my mother-in-law was in treatment, the hospital geneticist spent a lot of time with our family. My wife and her sister both tested positive for BRCA II. They both had prophylactic double mastectomies and breast reconstruction as a preventative measure. After completion of a prophylactic hysterectomy, their risk would drop to less than the general public. Without the surgeries their risk for breast and ovarian cancer was 75% to 80% chance lifetime. My wife was diagnosed at age 30 with ovarian cancer 1A after the pathology came back from her prophylactice hysterectomy. Had she not had the surgery, it most likely would have spread quickly- as the cells were very aggressive type. The surgeries saved her life! It inspired her to create a foundation to help men and women pay for genetic testing who are at a high risk for the BRCA gene. If you are interested to learn more, her foundation is the National Gene Test Fund. www.ngtf.org She answers a lot of questions from men and women almost daily.
I decided not to have genetic counseling in 2007 when I was first diagnosed because on insurance not paying for it. When I had my first recurrence this March I had it done because Medicare is now paying for it. I was surprised when the results came back negative. My mother died at age 63 of colon cancer so they tested me for the Lynch Syndrome. That came back negative too! So it is more puzzling to them why I got ovarian. They say my daughters (ages 48 and 44) are still at risk of getting it. I think they have decided against hysterectomy for now and will be tested closely each year with CA 125 and ultrasounds.
I had genetic testing done. I have a small family, my mom had one brother, my dad had one brother so there are no females to get info from. My father had prostate cancer so one my guess that he has passed the gene on to me. I wanted to know more about my cancer for my childrens sake and because the same gene that causes ovca causes breast cancer and if I am a carrier of this gene it would impact how my doctors would approach breast care and testing. As it turns out I tested negative. It is not a hereditary gene. They said it was just a fluke that I got it.......lucky me. Im still glad I did it though. Even though it really didn't shed any light on my particular situation, it would have been important to know for my family's sake if it were positive.
I'm still in the genetic testing vs. non-genetic testing mode. My mother died of ovca(she had limited family background info.) Now I have ovca. Part of me wants to be tested so I'll know the position my 17 yr. old daughter and 14 yr old son will be in, then another part of me would be too overwhelmed at this time to hear the word "positive."
I'm back and forth on this issue.
I'm going to the oncologist Tuesday 7/9.
The NCI (National Cancer Institute) has an excellent fact sheet on many different aspects of the testing, titled "BRCA1 and BRCA2: Cancer Risk and Genetic Testing" at
http://www.cancer.gov/cancertopics/factsheet/risk/brca
Here's one excerpt about genetic discrimination:
"In 2008, the Genetic Information Nondiscrimination Act (GINA) became Federal law (see Question 15). GINA prohibits discrimination based on genetic information in relation to health insurance and employment, but the law does not cover life insurance, disability insurance, and long-term care insurance."
Hi. I had the genetic testing after genetic "counseling" as I was the first for ovarian cancer in the small family we have, but my paternal grandmother was diagnosed with breast cancer at 46 and passed at 53 in 1973. I have a daughter (13) and 3 sons (3, 6 and 19). I am BRCA-1 positive, and plan to undergo a double mastectomy on August 13th. I understand I only will go to about a 90% chance that breast cancer won't touch me after the surgery, but that's 177% better than the 87% I will probably be touched by breast cancer without the surgery. I ordered a film "In The Family" through Amazon.com, referred by another BRCA positive lady on this site, and it was very good. As I understand it, the BRCA gene mutations don't allow our bodies to correct our DNA when something goes haywire, and the cancer cells form at that time. I will do everything I can to be with my kids as long as I can. But, that's my choice. I wish you well in your search for answers. It's just a blood test, but please get the counseling if you choose to have the test done.
I had a very similar conversation with my doctor Thursday (re what Luann posted this am) about genetic testing. I have a grandmother and aunt that had Breast CA, aunt and cousin that had colon ca, a grandmother that had undisclosed ca, and my mother passed away with a 63 cm (diameter) ovarian cancer tumor. I have had cysts in my ovaries in the past 3years that resolved themselves (went away). I have irregular menstral cycles now (more irregular than ever prob from stress too) and pain that gets worse each cycle. I asked him for advice becuase I am afraid to tell my partner about it. He would stand by me but I dont want to scare him the way I have been worried.
My MD stated pretty much the same things regarding being proactive. He stated if my gyn did not order annual ultra sounds he would. Period and end of story. IF nothing else for my peace of mind. He told me that unless laws change and I showed the genetics I might not be insurable. I believe he felt that was worse than doing annual ultrasoulds and breast checks and finding something as then I may have a chance for insurance to cover it. He (MD) said it was my decision and he would help me to accomplish whichever path I choose.
Thank you for posting your question and thank you to all that responded to her as this info helped me greatly.
Dear Linval,
I have not had genetic testing due to the fact that my insurance company does not pay for the testing and the possible ramifications of insurance companies learning the results.
My maternal grandmother died of breast cancer at age 53. I started having breast issues at age 33 and chose to have bilateral mastectomies at age 34 due to family as well as my personal history. I made my decision to do this after learning that I would eliminate my chances of breast cancer by 95%.
Fast forward to 2007, I was diagnosed with stage lllC ovarian cancer.
I found that there is a kit that one can purchase for genetic testing that is $399 rather than paying $3000 for genetic testing that is offered through one's physician.
There is also a foundation based out of California that will pay for genetic testing for women who have been diagnosed with ovarian cancer who can't afford testing.
I learned about this foundation because of a news segment on CBS.
Unfortunately I can't remember the name of the foundation, "Chemo Brain" and I am unable to find the information that I printed out about this foundation to pass it along.
If you are interested in genetic testing and your insurance company does not pay for such testing you might do a search on the internet to see if you can find either the kit or this foundation to make it more affordable to you.
There is a link between certain types of breast and ovarian cancers but the percentage is not high.
Had science shown this link in 1990 when I had the mastectomies, I would have certainly been proactive and had a hysterectomy at that time.
I have one daughter and since I haven't had genetic testing done, I make sure that my daughter is vigilent in having an annual gynecological exam and I made sure that she had a baseline mammogram at 30 based on family history rather than waiting until she was older.
I have also made sure that she is aware of the symptoms of ovarian cancer.
I feel that genetic testing can be a double edged sword.
One can find out if they have the BRCA1 or BRCA2 gene mutation among finding out if they are at risk for other health issues, but it also allows insurance companies to become biased when deciding whether or not to insure an individual or cover certain costs thereby considering certain illnesses or diseases to be pre-existing because they might have tested positive for certain gene mutations.
This is where laws need to be in place to protect the individual who decides to have genetic testing done.
To my knowledge there aren't any in place at this time.
I guess this is where one needs to search their heart and mind and decide what to do.
It isn't as difficult to find a physician who will order prophylactic surgery based on personal and family history but could be much harder to find an insurance company to insure one who has certain genetic
weaknesses based on genetic testing.
Since testing results are most often sent to a physician, these results then become part of a medical history and then must be disclosed to insurance companies for consideration in regard to insuring someone.
I might also add that you try not to stress over this
but be aware of symptoms and leave nothing to chance when it comes to symptoms that might indicate ovarian cancer. If you become symptomatic,
demand a CA-125 and/or other diagnostic testing given your family history.
Blessings!
Luann
I too had the genetic testing after my sister was diagnosed with ovarian cancer last year. I had breast cancer 17 years ago at the age of 37. I was positive for the BRCA 2 and immediately had a hysterectomy. Deciding to have the remaining brest removed was a much tougher decision. Four doctors said that was the way to go. About 6 weeks ago I had a mastectomy on the remaining breast. Mostly, I didn't want to have surgery and then chemo again when I reach my 60's or 70's. I found this site while searching for info abouit the PARP Inhibitors, for my sister.
Ladies (and Gentlemen),
I had genetic counseling and blood drawn for the BRCA tests last week. I wanted to relay this information while it's still fresh. I have a strong family history of cancer--the geneticist said she'll be amazed if I don't test positive. All this information is what I remember from our two-hour conversation. (Remember our faulty post-chemo brains, folks!) BRCA does greatly increase our chances for ovarian cancer. My sister and one aunt died from this. I had it last year. My mom had breast cancer, but neither parent nor any of her siblings had cancer, so we think any genetic inheritance will be from my dad's side. He had lung cancer; five siblings died from cancer. (Can you imagine how the one sister who didn't have cancer felt?)
BRCA increases your lifetime risk of breast cancer to 60% to 80%. Males also have an increased risk of breast cancer. I thought this gene was carried on the x chromosomes, which would give my brother some degree of safety, since we think my dad is the genetic link. Not so. It's not sex-related and can be passed on by either parent. Important misconception out there, y'all! The risk of prostate cancer for men increases 20 times, but here's the statistics game. It increases from 0.1 or 0.2 % to 2%, so that's still a 98% chance of not getting it! My geneticist kept saying, "Always turn the percentages around and look at your chances for not getting cancer."
If I test positive, they'll recommend testing for my brother, and my sister's children, particularly hers because she's already had cancer and both her husband's parents died of cancer. (Can you imagine all four grandparents plus your mother?) They'll also recommend either a bilateral prophylactic mastectomy or annual mammograms with specialized MRI's for me. The MRI/mammogram should be coupled with a Tamoxifen-type therapy, but some previous reactions to birth control pills may prevent me from taking the Tamoxifen. I panic a little, then remember two things: I don't have the test results yet, and I am in God's hands.
Here's the biggie: Prophylactic hysterectomies with oophorectomy (sp. ovary removal) reduce, but do not eliminate your chances of contracting ovarian cancer.
A double mastectomy does not totally remove your chances of developing breast cancer because there is no way to totally remove every breast cell.
There are other cancers to consider with BRCA positives, but I didn't ask for copies of all the grim statistics at this point. The geneticist told me many stomach and colon cancers from a generation ago probably metastasized from gynecological cancers, but by the time they were found the patient's cancer was too advanced to determine the point of origin. Also, my mother told me years ago that some of my aunts died at a time when "female" matters were not discussed in polite company, so no one's really sure what one of my aunts had.
Two positives: My mom had a very radical mastectomy in 1971 and died in 2002 at the age of 85 without ever having a recurrence--a few scares, but no recurrences!
I recently met a young man undergoing chemo for colon cancer when I was taking my carboplatin and Taxol. He was 26 and had cancer in 26 lymph nodes. He said the doctor cried when telling him his diagnosis. He now has no measurable evidence of cancer.
Last week I had 3 days of tears and panic, but I'm back on track now!
Let's forge on, ladies!
God bless.
Verlinda
I was diagnosed with Stage lllC OVCA in Aug 2001, underwent an additional debulking surgery and 3 rounds of chemo. During my 5 year anniversary CT scan in Aug 2006, it was found I had cancer in my spleen. After surgery to remove my spleen, it was found that it was again ovarian cancer. I underwent 6 rounds of chemo. I have regular 3 month check ups and remain well. As I have 2 grown daughters, I underwent genetic counceling and testing and was found to be positive for the BRCA 1 gene. My mother had breast cancer but I was the first ever to have OVCA. My 37 year old daughter has since tested positive for the gene ( and is facing some really major decisions!) and my 34 year old daughter is yet to be tested. I also have a brother and 2 neices undecided on testing at this time. I guess what I want most to say is...you can live with OVCA and with genetic testing and preventitive proceedures, this terrible disease can be stopped. My heart and prayers go out to all of you! Be strong and Be well
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