Genetics Counseling

Marie,

My breast surgeon referred me for genetic counseling because there were two female relatives on my mom's side who'd had BC in their mid-40's and a bunch of other male relatives on that side who'd had prostate cancer.  The docs at the cancer center where I was being treated would not order BRCA testing in someone who had not gone through genetic counseling. I think that's a good idea.  Unfortunately, the genetics clinic was really busy; so I had to wait until about 6 weeks after my mast/SNB before I could meet with the counselor.  That meant I had to make decisions about my surgery without knowing my BRCA status.  For me, that ended up not being a problem.

I was sent a long (4 or 5 page?) form to fill out and send in ahead of time.  The form dealt with the details of my family's medical history.  There was lots of stuff on there that I had to look up in family records or ask my relatives about, because I didn't know the dates, specifics, or some of the outcomes.

My husband went with me for the counseling session.  It was very worthwhile.  The counselor reviewed the information I'd sent in, and gave me a family chart that showed all the linkages and details of the important medical problems.  She told us about the hereditary aspects of breast cancer and other related cancers, and the clues in a family history that hinted at hereditary BC.  According to the calculations she had done, the likelihood that my BC was hereditary (due to a BRCA1 or BRCA2 mutation) was low -- somewhere around 5%.  But, she said, I could have a blood sample tested for BRCA mutations anyway.

She explained the BRCA testing process, what the results meant, and how much the test would cost.  She said I could agree up-front to pay the portion of the cost that my insurance would not pay; or I could have her submit my blood sample and have the testing lab contact my insurance company to see how much of the cost they would cover.  The counselor would then call me to let me know how much the test would cost me if I wanted to go ahead with it.  If I did not want to pay the difference, I could decline the test and the sample would be discarded.

My breast surgeon had predicted that my insurance would pay for genetic counseling but not for BRCA testing, because my predicted likelihood of having a BRCA mutation was less than 10% and that was their usual threshold.  She was wrong -- my insurance covered the whole cost of the counseling and the BRCA testing, even though my risk was low.

The counselor gave me 3 options for receiving the results of the testing:  1) make a follow-up appointment with her and she would give me the results in-person (regardless of what they were); 2) make a follow-up appointment with her that would be kept only if the results showed a BRCA mutation; negative results would be given to me over the phone; or 3) she would call me with the results, regardless of what they were.

I opted for choice #3.  Two weeks after my counseling session, the counselor called to tell me my results were negative for BRCA1 or BRCA2 mutations.  I received a full report in the mail a week or so later.

otter

My experience was very similar to Otters. In my case, also no history of BC in the family, but my sister, who I recently lost, had ovarian cancer. In my case I was negative, but here's the irony, both sisters got the gene. If families are small sometimes it just doesn't show up. I found the advice quite helpful, especially since it factors into decisions I have to make, like whether I need to remove my ovaries.

I, too, just went through genetic counseling....and subsequent testing (just this past Monday)...it wasn't in time for my BMX, either - as today I am eight weeks out.  I have an "ok" size family, but very few females.  Only a brother, no female cousins, only two aunts - one of which had BC, and my maternal g'mother was killed at age 40 by a drunk driver.  My dad was an only child.

However, in going back and tracking down my parents' cousins, I did find a significant amount of BC and HNPCC (I think I have those initials right) - a type of inherited colon cancer, now called Lynch.  There are some connections there.

My counselor also said that the lab will call me if there is a cost to me prior to the lab going through with everything.  My blood was drawn (three vials) on Monday.

The genetics counselor quoted me a cost of $3500 for the BRCA1 and 2.  The colon cancer test is $440. My insurance is supposed to cover 80%.  That's still a hefty amount for me to pay, but I'm already paying for three surgeries, so for some peace of mind - and for my children's sakes, it's probably worth it. (and if my brother wants to know the results, being the jerk that he is, he can pay ME to find out the results...ha!  just kidding...sort of....actually, his wife can....her first words out of her mouth, upon finding out I had breast cancer was, "what is it with your side of the family and cancer???"  such concern....sigh...oh well)

anyway...hope that's helpful.

blessings...robin

My surgeon sent me for genetics counseling/testing due to the number of tumors in my breasts. I also had a large form of family history to send in before my appointment. I was sent to the same doctor who diagnosed my sister. My sister is the only one to have breast or ovarian cancer. But My paternal grandfather and 3 of his brothers died of colon cancer and several cousins were diagnosed with thyroid and /or colon cancer. I was not tested for BRCA I was tested for Cowden's syndrome. The doctor went over the risks of having Cowden's and did a clinical exam looking for some of the things that usually show up with this syndrome. They then drew blood and I was told to expect a 4 week wait. I should have my results late this week or next.

mouser, that's a very good post with great advice.

otter

I also had genetic counseling - it was originally recommended to me by my surgeon because of my age, 41, at diagnosis.  But then the genetic counselor estimated my likelihood of being positive for bRCA1 or 2 to be low (no early breast or ovarian cancer in the family) and almost wasn't even going to do the test, but I wanted to know for others in the family and to help me make some other decisions.  I also knew there was probably a higher chance than she thought because of a small family with few women on the side that we thought the gene was coming from (I have no sisters, father has no sisters; his father died of prostate cancer in his 50s - that's where we think the gene is coming from). 

Anyway, when they sent off the test, I was given a form that said the maximum I would have to pay would be $350, I think. that the testing lab would call me before proceeding if the insurance was not going to cover the rest, but I think my insurance covered everything.  The initial testing is expensive, $3500 or something, but then if you do test positive, you know exactly which gene variant you have, so if anyone else in the family wants to get tested, they only have to look for that same gene and it is cheaper.

I'm fortunate in that I have double insurance coverage, so there would be no out-of-pocket expense. I was tested at Virginia Piper. I'm a research nut and knew pretty much how the whole process works & what the odds/statistics were, etc. So no big surprises there.

What I wasn't (and still am not doing well with) is the huge amount of guilt. I pushed my 30 year old daughter to be tested before I was. Her paternal grandmother had bc, I had bc and her maternal grandmother died of colon cancer. She came back positive for the braca1 gene mutation. I went & got tested and I have it too. So I've managed to pass on this shit to my only child. I think I would put a gun in my mouth if it would do any good. But, the damage is aleardy done. I get to live with knowing that I've managed to pass this on to my daughter & yet-to-be grandchildren.

So, there is more than the $$$ involved. You need to be prepared for the results (should they be not the best).

I live day-to-day knowing that my boobs are going to kill me. They are ticking time bombs. I'm currently fighting with the insurance bozo's. I can't have implants because the FDA did not approve of implants that will fit my frame. I need to have DIEP, but the one dr here in Phx isn't on my primary insurance's plan. He is on my secondary's, but I have to fight with my primary first. So while the jerks screw around, my boobs are planning & plotting how to kill me off. They tried once & failed, the next time (and there most certainly will be a next time unless they are gone), I won't win.

I am on Femara. But in the beginning, I was on Tamox. So I wasn't worried about the ovaries. Now, with the test results, I moved as fast as I could to get the ovaries, fallopian tubes & the uterus yanked. That took less than 30 days after my gene test results. So, I've dodged that bullet.

Because my mom passed away from colon cancer, I was having a colonospcy every three years. With being braca1 gene mutant, I'm in a higher risk of colon cancer. Had my mom not had the colon cancer, I wouldn't have been on the 3-year frequency. But, with the gene, I would have had to up the frequency.

My sister (also with bc but not a gene mutant) and I have been in contact with our female cousins to encourage them to be tested. They believe ignorance is bliss. I can only pray that ovarian, colon or bc doesn't screw up their life plans.

With the test results comes a whole pile of responsibility and a whole lota guilt. Be prepared cause it ain't easy.

Would I do it again?.... In a New York minute!!!!

I know somewhere, sometime, somehow, by being tested, something good will come out of it and it will help someone else.

Good luck.

Hi everyone,

My fathers sister died of bc 30years ago and then 15years ago my older sister was dx with bc, she sadly passed away 2years after dx at the age of 38. I was then dx 5years ago at the age of 38. My onc suggested the gene test so we paid for the results because i have 2 more sisters plus our daughters and a niece from my sister who passed away. A geneticist came to my home and talked over the whole proceduture with us. Anyway the test came back positive with braca2. My youngest sister has the gene so she opted for bilat+ hysto. My other sister did not have the gene. I am so glad that i did the test because at least my youngest sister was able to help prevent her chances of being dx with cancer. I worry for our children but hopefully by then there will be a miracle cure and they can keep checks on themselves. I do have a terrible sense of guilt but i cant blame my father because he was innocent in all this as well. Life is tough sometimes but with the help and grace of God we keep on going.

Scarlett...genetic counseling is a critical part of the process...check here...

http://www.nsgc.org/resourcelink.cfm

to access a Genetic Counsleor in your neck of the woods,

Marcia

Fionn,

 I may need to make a correction here..did u say you are positive for BOTH BRCA1 & 2?

Marcia

I have tossed this subject around for several weeks, trying to decide if genetic testing was something that I needed to do.  Finally, with the encouragement of my breast surgeon, I went for genetics counseling today.   My mother had breast cancer, shortly after menopause at age 55, and I have been dx with breast cancer this past month just after turning 49.  My middle daughter had thyroid cancer at age 18 (follicular).  But, considering the number of females in our family, there are very few dx of cancer, especially before the age of 50, so I really felt comfortable that I do not carry either BRCA1 or BRCA 2.  This being said, my surgeon told me it would perhaps give me "Peace of Mind" in my decision to have bilateral segmental mastectomies with reconstruction scheduled for April 27th, rather than total mastectomies.  The genetic counselor was VERY informative, and I learned a lot.  I was actually more concerned for my 3 daughters who have to deal with the fact that we have breast cancer on both my side and my ex-husband's side of the family.  At this point, after inputing all of the data into the computer, although my insurance would pay for the testing, I have decided not to do it. Well, I guess I should say TODAY I have decided not to do it....I'm going to sleep on it tonight, I may change my mind by morning.