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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
I had it done recently since I was diagnosed with Stage III3C serous papillary ovarian cancer. I was given a written and oral questionaire regarding family history of cancer. Based on that I was rated, in my case very low since no other members of my immediate or back to the grandparent level had female cancer. Then I was given a blood test which tested my DNA for the the two genes BRCA 1 and 2. If I had had either of them, then my children would have been tested, males and females, and I was told if I had those genes, they would have a 50/50 chance of inheriting the genes, including my son. Also if I had tested positive, then my children would be tested and compared against my DNA for the genes. If you do test positive, you are at increased risk of developing ovarian cancer, also breast and secondary cancers. I am sure if you do a google search there is more accurate information out there. I am going by memory. I did not have the BRCA genes, however my husband might since his grandmother and aunt died of female cancers. Both were awhile back and advanced when diagnosed so we are not sure what kind they had. He is going to be tested to see if he tests positive for the genes. If you test positive, and your children test positve they have to have more frequent testing and more tests than just routine pelvic exams. Mammograms have to be done sooner and more frequently and they recommend early hysterectomies, I think by age 35, to be on the safe side. Males are more susceptible to both breast and prostate cancer, but not to the same increase risk as females we were told by our genetic counselor.
I think you did a very good job explaining. I had genetic testing also after my ovarian cancer diagnosis because I have three daughters and I just wanted to be sure about what I am passing on. Thank goodness, I did not have BRCA 1 or 2 genes. I am the first in my family to have the ovca diagnosis.
the only thing I have to add is that I am being tested automatically because I am adopted with no family medical history. It isn't fast. I was referred in Feb or March, and the appointment for genetic counseling and testing isn't until October. Only 1 lab in the country does the actual testing. Also, I just read a new book by Jessica Queller. Title is Pretty Is What Changes. She is a young woman whose mom had breast cancer at 52, then stage 3C OC at 56, and she died 2 years later. The book deals with Jessica's agonizing decision to be tested, and the choices she made after testing positive. She had prophylactic double mastectomy because test results said she had 87% chance of getting breast cancer, and sure enough, they tested the breast issue when she had the mastectomy, and they found the beginning of cancer. She has 44% chance of developing OC. She will wait a few years because she wants to try for kids, then she will have hysterectomy. The book didn't give much real info on BRCA testing, but I sure learned a lot about reconstructive breast surgery!
Jeanie
Not sure if any of you ladies know this but OVCA is NOT related to having/not having the BRCA1/2 gene UNLESS their is a family history of breast cancer. OVCA is related to colon cancer, believe it or not. I was diagnosed with stage IIIc OVCA at 36 last year. No one in my family has had OVCA or Breast cancer. BUT, my father had colon cancer, his brother has colon cancer and his dad died from colon cancer. When the genetic counselor saw that in my family history she tested me for HNPCC(hereditary Non-polyptic colon cancer syndrome) or Lynch Syndrome. Sure enough I tested positive for a genetic mutation related to this syndrome. Just means that I have a higher risk of getting colon cancer as well as gastric cancers and kidney cancer. More doctors, more screenings earlier that normal. If you have a parent(mother) with OVCA then I would definitely get the genetic testing done. I was sorry at first but am glad to be prepared.
I had the testing done in Feb because I had ov ca stage 1c 2 yrs ago and was found to have breast ca. My dad's mom and 2 sisters all died of cancer before age 40. Two had breast/gyn cancers and the other had lymphoma, but all was hearsay because they all have been dead for many years. My genetic counselor said she was 90% sure I would test positive and she was correct. I have a BRCA 2 genetic mutation. I wish I had been tested 2 years ago with my original ov ca diagnosis because I would have had a bilateral mastectomy then, and perhaps would have a better chance at survival. In one year I went from OK mammos to stage 3c Breast Ca in the right breast and the left breast (OK per mammo) had multifocal DCIS. I also was shocked, as was my GYN ONC to have an ov ca recurrence, so presently I am fighting for my life against these 2 different cancers.
See a genetic counselor and if indicated, get the testing done. Facingourrisk.com has some good info.
Blessings.
I too had the test done, mom had breast cancer at age 39, then i had ovarian cancer at 39, i have the brac 1 mutation gene, i also have two daughters, one is age 20, did not get the gene, and my other daughter is 22 and she did get the gene. She has gone through councling with doctors on what they believe she should do. It is scary for her to find out that she carries this gene, But i believe that i have given her a second chance at life, she now knows what she is dealing with and can take preventive measures.My brothers and sister have also tested, they do not have it. Good luck to all
I forgot to add that I have a daughter who is 16. My genetics counselor said she should wait until she is about 23 to be tested so that she is better able to handle the info should she be positive. However, I see her quietly worried. Sometimes I wonder if she shouldn't be tested sooner because she does have a 50% chance that she DOESN'T have the mutation. For me, knowing is better than not knowing. I can play with the cards that are dealt, if I know what they are.
What ThePhoenix writes about Lynch Syndrome and gynecological cancers has validity. My wife's mother and grandfather died from colon cancer. My wife contracted ovarian cancer at 40. In fact, six years after her demise, 28 years later, one of her sons died from colon cancer treatment.
MD Anderson had published about this in the January 19, 2006 New England Journal of Medicine. Women diagnosed with Lynch Syndrome, a condition often associated with colon cancer, also are at high risk for endometrial and ovarian cancers, both of which can be eliminated by having a prophylactic hysterectomy and oophorectomy (removal of the ovaries).
Lynch Syndrome, also called hereditary nonpolyposis colon cancer, is an inherited disorder in which affected individuals have a much higher-than-normal (remember, probabilities here) chance of developing colon cancer and/or certain other types of cancer, usually before the age of 60. Often, women who have this condition don't even realize that they also are at risk for two gunecological cancers, and their risk is extremely high.
However, according to Johns Hopkins, while women who test positive for the BRAC 1 or 2 gene have a 50 to 80 percent chance of getting breast cancer during their life (compared to a 12 percent risk in the general population), being BRCA 1 or 2 positive increases a woman's risk of ovarian cancer to 40 percent (compared with a 1 percent risk in the general population).
The ironic thing here is that some studies have reported that women who carry mutated BRCA genes may have better survival rates than non-carriers. The survival advantages may be due to having a slower course of treatment or being more responsive to therpies than sporadic ovarian cancers, although this is controversial.
You would want to be sure you are able to deal with the answer to the test. According to the Massachusetts Medical Society, only 5 to 10 percent of cancers are caused by a genetic mutation, and there is concerned about the risk of false positives that could lead to further, expensive tests. However, BRACAnalysis is a blood test that can help thousands find out their risk for hereditary breast AND ovarian cancer.
Linval,
Did your mother have the testing for BRAC1 and BRAC2? I don't remember which is significant for ovarian cancer. Having a mother with breast cancer or a sister with ovarian cancer puts you at a significantly higher risk. Lucky me! I had both and am past my initial ovarian cancer surgery and treatment. Ask your gynecologist about getting an annual pelvic ultrasound. My doctor also had me get an annual CA125 blood test. It's not very effective for detecting cancer but is supposed to be good for monitoring how your cancer responds to treatment. It doesn't work at all for some people, so I'd push for the ultrasound if you're at risk.
Sadly, removing ovaries, uterus, and omentum does not prevent ovarian cancer. You can still have it in the endometrium lining that part of the body cavity--sorry, don't remember if that is peritoneal cavity or abdominal cavity. Two ladies in my support group contracted ovarian cancer years after the other surgeries. Be vigilant!
Hi, I have had breast cancer 10 years ago and now have
Ovarian cancer. They never told me the risk for getting
ovarian cancer was higher if you had breast cancer.
I was diagnosed in 2005 and I had chemo and a
hysterectomy. I then went into remission. Then I had a
reoccurence in Feb. 2007. I have been getting chemo
since. My tumor marker is in the 60's and my dr wants
it to be normal about 8.
My mother,grandmother,aunt, and sister all had breast
cancer. So my mom had genetic testing recently and
she came back positive for the BRCA 1 gene. Which
means that she and her children and grandchildren
have higher risks in getting breast cancer and
ovarian cancer. My mom and sister both had
hysterectomies after my ovarian cancer diagnosis.
I think Genetic counseling and testing is beneficial.
It lets you know your risk or whether you have chances
just like the rest of the population.
Sincerley, Nancy
My mother was diagnosed with stage III ovarian cancer, I've been reading the book Pretty is What Changes and I also have been considering gene testing. I have to discuss this with my sisters and mother and hopefully they will all agree to get this test done. Even though I'm really scared about the whole process and finding out the results I think it's better to know and take the appropriate measures than waiting for cancer to strike. I'm 27, single and would love to some day get married and have my own children. I'll leave everything in God's hands. God Bless you all. This site is so helpful thank you all for such wonderful information.
I was diagnosed in Jan. 07 with Stage IIIc OVCA at age 43. My dr. recommended the genetic testing as I was relatively young to get OVCA and since I had 3 sisters. I tested positive for both BRCA 1 and 2 (has anyone heard of anyone else doing that?). My mom and sisters all got tested. My mom tested positive for BRCA 1 as did one of my sisters (the one who hasn't had children yet!). My sister is taking tamoxifen to help deter breast cancer and is considering a oopherectomy (spelling?) but isn't ready to give up on having children (she's 38).
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
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 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.
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 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.
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.
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."
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