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genetic counseling

kimberly sue 63's picture
kimberly sue 63
Posts: 408
Joined: Apr 2012

Has anyone had genetic counseling? I did and I have BRCA 1. anyone else? kim

Alexandra's picture
Alexandra
Posts: 1271
Joined: Jul 2012

But my only daughter is negative! My mom is negative too! And I have no other siblings.

I had breast MRI (it was tough!) and mammogram (piece of cake). I was told that no breast malignancy was found.
My oncologist and I agreed that regardless of the results we will not deal with breast cancer risk until finished with initial treatment for ovarian cancer.
Afterwards there will be either regular MRI / mammo's or prophylactic bilateral mastectomy with reconstruction (with implants or with my own fat from the abdomen).

I live in Canada, so all of the above is covered by insurance. Free boob job and tummy tuck, how lucky is that? Just kidding.

zinaida's picture
zinaida
Posts: 220
Joined: Oct 2007

I'am BRCA1 positive.

zinaida's picture
zinaida
Posts: 220
Joined: Oct 2007

I'am BRCA1 positive.

childofthestars's picture
childofthestars
Posts: 246
Joined: Jan 2011

I'm BRCA1+ and as I have already had breast ca my docs want me to have a mastectomy (I only had a lumpectomy so still have my boobs) I have turned this down as I get regularly monitered every 6 months from a breast perspective and don't want to undergo more surgery unless absolutely necessary. However the lure of having nice firm boobs again is a strong one, a tummy tuck would also be rather nice!!!!
My daughter who is 22 is going to have the BRCA test done soon and if she is positive she is going to have prophylactic mastectomy (she also wants firm boobs @22!!! but to be fair she has had a baby) she will also have to consider hysterectomy too :(.....

kimberly sue 63's picture
kimberly sue 63
Posts: 408
Joined: Apr 2012

I have four daughters. So being positive for BRCA1 was overwhelming for me. I would be devastated if something happened to one of them. I know knowing now they can get tested and if they are positive we can be prophylactic and watch closely so they get checked quicker than if not knowing.
My oncologist knows I won't have a mastectomy. I'm not cutting off normal tissue. I will be surveyed frequently. My oncologist feels the priority is the ovarian cancer at this moment. Kim

KarynH's picture
KarynH
Posts: 32
Joined: Jun 2010

I just visited a genetic counselor 2 weeks ago. I do not have ovarian cancer. My mom passed away last November from stage 4 ovarian cancer. Her mother also had breast cancer. Both were never tested for BRCA. These last several months I have become increasing anxious about the possibility of getting ovarian cancer. I am 49. When I met with the genetic counselor, she did a history of my family tree, and since none of my cousins or brother have cancer (which is a good thing), my insurance would not cover the test. “There was not enough cancer in the family”, they said. I opted not to get the $3,000+ test at this time, but instead will be taking part in their ovarian cancer early detection & prevention program. They will focus on finding any signs of cancer and will get checked every 6 months. This is a huge relief as I sort of feel just like another number at my general gyn. At my last appointment I had to insist on getting a TV ultrasound. I feel this should be a part of a routine wellness exam, but sadly it is not.
Insurance did pay for my visit with the genetics counselor.

Alexandra's picture
Alexandra
Posts: 1271
Joined: Jul 2012

Hi Karyn. My condolenses about your mom.
Very sorry to hear that your insurance turned you down based on "not enough cancer in the family". Test price is so high because of the monopoly on BRACAnalysis due to the exclusive patents owned by Myriad Genetics. I find this criminal and appalling.
Also you can negotiate with your insurance company. I have a 56-year-old friend in Detroit who had routine hysterectomy for a benign condition last year and was quoted $3500 for the BRCA test. Insurance refused to pay, she appealed and ended up paying $250. Her test was negative.

IMO there is no such thing as ovarian cancer early detection.
I had TV ultrasound on March 12th and it was unremarkable. On May 3rd CT scan showed stage 3 ovarian cancer.

People spend more than $3000 on cosmetic surgery, lasik, hair removal and other elective procedures. This is about your life.
I wish someone had told me about this test and genetic cancer risk before I was diagnosed and not after.
I would take out a loan and still get the test. If you're negative - you and your children will have peace of mind. If you're positive (I hope you're not) - there are measures you can take to protect yourself.

KarynH's picture
KarynH
Posts: 32
Joined: Jun 2010

Alexandra,

Oh how I wish there was some sort of “mammogram” for ovarian cancer. Believe me, I know the uphill battle there is on detecting this cancer, and unfortunately at this time, getting closely checked and monitored every 6 months is all I have. Hopefully one day this will change, and there will be at least some sort of vaccine available to prevent it. I will start the program this spring, and for any reason the Dr. feels my ovaries should come out, I will do it in a heartbeat! I do not have kids, nor does my brother, so no worries about passing any mutations on. The genetics counselor said based on my family history, I would have a 3% chance of having the BRCA mutation. If my situation with the insurance should change, I will take advantage of getting the test.

Wishing you and everyone else on this journey the best! Give it the middle finger girl!

Erixka's picture
Erixka
Posts: 19
Joined: Aug 2012

Here in Israel the basic BRCA tests are offered to almost all Ashkenazi women with any breast or ovarian cancer in the family because it's so common in this group. The genetic counselor explained that the basic test is actually not costly at all - free on my insurance but if I test negative for the basic one she recommends I get the more involved test which costs a lot of money and would require a special approval from the insurance. My surgeon (Prof Uziel Beller) is speaking at Sloan Kettering about the importance of all women being allowed to have the test... It saves lives!

kimberly sue 63's picture
kimberly sue 63
Posts: 408
Joined: Apr 2012

I was able to get the test because of having ovarian cancer. However, my family history had one breast cancer (my aunt). Thats it. So not a strong history. However, my mother and sister had hyst with oophorectomies in their 20's due to endometriosis. So it actually was protective for them considering now we know we have the BRCA gene. My oncologist feels it came from my mother's side because it was her sister who had the cancer. Kim

Erixka's picture
Erixka
Posts: 19
Joined: Aug 2012

My husband and I got tested at genetic counseling over a week ago and we're awaiting the results. I was told that 40% of cases like mine are BRCA positive. Hopefully we'll know the results soon. I think it takes about a month.

lulu1010's picture
lulu1010
Posts: 367
Joined: Feb 2011

I am BRCA2 positive. My mother died of breast cancer. I elected for the mastectomies after my itial treatment was over. Sadly, my cancer returned before the implants were placed so I am still waiting for that to happen. I am glad I did it though. I am almost 60 so it wasnt such a big deal to me and one less thing to stress over. I have 2 daughters who tested negative and my brother who has 3 daughters also tested negative.
Actually only one cousin tested positive and she had breast cancer 10 years ago and chose to have her ovaries removed and is considering the mastectomies.
It is a lot to deal with but there were several in my family that did not want to deal with it but are so glad they were tested now.
Wishing you the best!

Glad to be done's picture
Glad to be done
Posts: 558
Joined: Jul 2012

I have not had it done yet but am going in on October 2nd to have the test done. I am worried that if it comes back positive I will turn into a hypocondriac(sp?). I was not going to get it done but my doc wants me to for the extra monitoring I can get. So ladies prepare yourself... If I test postive you will be talking off a ledge once a week. Lol. just kidding

Alexandra's picture
Alexandra
Posts: 1271
Joined: Jul 2012

My mom (she lives in Bat-Yam) got tested mid-July in Rehovot and received her results only today. She is negative. She had breast cancer 10 years ago, but apparently it was not hereditary. According to her, BRCA testing for 3 Ashkenazi mutations (185delAG and 5382insC in BRCA1 and 6174delT in BRCA2) is now included free in "sal klita" benefits for all female Ashkenazi new repatriants in Israel.
Erika, if your basic (Ashkenazi) test comes back negative there is virtually no chance that a full panel test for other mutations will be positive. Unless you converted or were adopted.

Mwee's picture
Mwee
Posts: 1316
Joined: Nov 2009

had it done last Friday, so it will be a few weeks before the results come back. I think it's so important for families to be able to relate that info to their doctors.
(((HUGS))) Maria

kellyh33's picture
kellyh33
Posts: 288
Joined: Jul 2010

Good morning,
My Mom's tumour was sent away and we were told it had no genetic component to it. I wish I knew more, perhaps it's time for a phone call.

khsherwood's picture
khsherwood
Posts: 31
Joined: Jan 2011

Hi, I had the genetic testing for BRAC 1 12 years ago when it was new. I had just had breast cancer, I had a twenty year old daughter and I am adopted ( no family history). With all those factors they thought that I would be a good candidate for the test. My insurance did not cover it. It cost me $3,000. I felt that it was worth it though for my and my daughter's peace of mind. Unfortunately three years ago I got ovarian cancer. So the test isn't perfect. I would still recommend it though if you have daughters. Kelly

anicca's picture
anicca
Posts: 325
Joined: Dec 2010

All cancer is ultimately genetic. My mother died of breast cancer in her early 40's and all three of her sisters died of cancer, but we don't know what kind. The genetic counselor said she was 90% sure I had a BRCA mutation (Ashkenazi Jewish), but I don't. That was a relief for my daughters, but I think it simply means there is another, as yet unknown, mutation. I contributed to a study looking for other cancer contributing genes, but will not get individual results. There is breaking news about the "junk" DNA in our chromosomes, that it is a very complex system of switches, and I wouldn't be surprised at all if a lot of our cancers turn out to be "switch" related. It's a very hopeful development.

ktamp
Posts: 82
Joined: Dec 2011

I had genetic testing done after my bout with colon cancer and was found to have lynch syndrome. Lynch syndrome is a genetic mutation that predisposes folks to colon cancer. Like a 70% lifetime risk of colon cancer. It also carries a high risk of uterine cancer for women and increased risks of alot of other cancers. My ovarian cancer is due to the lynch. It is another genetic component to look into outside of the brca mutations. Especially if you have alot of colon cancer in the family and are of ashkenazi jewish descent.

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