MIDDLE-AGED WOMEN 40-60ish

PauldingMom

Leisaparis: Wishing you more than good luck. Passing a quick prayer to you and your surgeons to do your bests. 

Eph3-12 from what I understand the test is so that you can find out if your B.C. is something that could have been inherited and if you can pass it on to your children. Since Mom and I both have B.C. I wanted to know for sure that my DD weren't at a higher risk.

Kleenex

Meanwhile - had my follow-up appointment yesterday, and the BRCA test came up again. The PA that I alternate visits with has been "trained in genetic counseling," and so the oncologist again wants me to have the BRCA testing done when I see the PA on my next visit in October. We had virtually the same conversation where she agrees with me that it seems illogical that I'll test positive because I don't meet any of the guidelines that suggest a genetic link, yet she still pushes for me to take it. So does she secretly think I will test positive but she doesn't want to say that? Or does she need to make more use of the PA's genetic counseling training investment to support the practice? Or does the PA need more practice? I hate to think like this, but have no choice due to extensive training in cynicism by my dad...

Joni - they NEVER mentioned it to you? Is this because you truly have nothing to even vaguely suggest a genetic link? Or is it because your oncologist didn't pay to have her PA trained to administer these tests?

Leisaparis - good luck to you! Deep, cleansing breaths. I found Xanax to be a wonderful pre-surgery aid to stop the swirling vortex of worries.

Coleen

Meece

I am in the same boat as Joni.  No one has even mentioned it to me.  Someone on the boards here suggested that it was because I'm a TN.  I didn't get started with my current Onc for three years post dx, and my original team made very little effort to offer me any suggestions for anything.  I know I can ask my current onc about the test.  Won't see her until August.

(((((Leisaparis)))))

prayrv

Kleenex,

I did take the test after discussing it with the PA - my only risk factor was my age (43 at dx).  I tested negative.  I believe that since I have 2 daughters that this test was invaluable for me and them.  I also only let them do the test if my insurance covered it.  It did.

Hugs,

Trish

suzwes

Leisa, you and your medical team are my thoughts and prayers.  Good luck tomorrow.

I asked my surgeon about the BRCA testing last year before surgery.  I wanted to know if I had the gene mutation to help in my decision on whether to have a unilateral or bilateral mastectomy.  I also, and this was first and foremost, wanted to know for the sake of my two daughters and my granddaughter. 

I barely made the criteria that was set by my insurance company - I was in a gray area because of my age at time of diagnosis (48) and the fact that two aunts had BC but not a closer relative.  The genetic clinic wrote a letter to my insurance company and it was reviewed and approved.  If I remember correctly, the insurance criteria paid without question if my mother or sister had breast cancer or if I was younger at the time of diagnosis.  Thankfully I was negative.

gillyone

Noone has mentioned the BRCA to me either. I am TN also and only have boys. Could that be it? I don't even know what the risk factors are!

Meece

My surviving children are also boys, so that cuold also be a factor, although men can get BC as well.

Kleenex

Per the helpful brochure and website, the "red flags" that might indicate that you have an inherited risk are:

* you or a family member were diagnosed with b/c before the age of 50

* you or a family member were diagnosed with ovarian cancer at any age

* you have a male family member with breast cancer

* you have Askenazi Jewish ancestry, and a personal or family history of breast or ovarian cancer at any age

* you or a family member have had two or more breast cancers, one diagnosed under the age of 50

* you have had breast cancer in both breasts or more than one within the same breast

* you or a family member have been diagnosed with both breast and ovarian cancer

* you have a previously identified BRCA1 or BRCA2 mutation in your family

This is from Myriad, the company that makes the test. The insurance companies I looked at did not mention the one red flag above that I have - my cancer before age 50. Instead, they suggested the test for people with either two family members with breast cancer, at least one before age 50, or three family members with breast cancer at any age...

A counselor I talked to on the phone (who didn't think I was likely to test positive, either, for THIS known genetic defect) also mentioned that some insurance companies were looking into lowering the age for which they'd cover the testing - meaning that my 45 was likely not going to be considered "young" enough anymore without other risk factors. Also, the point of testing at this stage would not be to re-think the breast surgery, because the breasts are allegedly undergoing major surveillance and so even if I were to test positive, they wouldn't "recommend" going for a bilateral. It's about the OVARIES at this point, because there are no reliable screening tests for ovarian cancer and with the drastic increase in risk with the BRCA mutations, many women opt to get them out before they become homicidal...

suzwes

As Kleenex said insurance companies have and are looking at dropping the age.  My insurance company actually dropped the age to 35 and under.  Obviously I had my testing done soon after diagnosis.  My ovaries had already been removed so that wasn't a consideration for me - for me it was to help in my breast surgery decision and I was helped by the genetic physician, counselor, and my surgeon as they explained the risk of recurrance with a positive and negative result. 

Eph3_12

Wow OK-so I was 54 at diagnosis, paternal grandmother MAY have had breast cancer at time of death @ age 89, but we don't know for sure.  Only other relative with breast cancer is a 2nd cousin; no ovarian cancer people on either side;  my daughter isn't mine biologically & I hadn't had ovaries for over 10 years, so I guess that's why no one mentioned it.  Kinda good actually, all your input gave me sensory overload

leisaparis

For Missouri they are actually raising the age limit for the BRACA test. Before you had to be under the age of 40 in order to qualify for the test. When I had it done in November, they had just reciently ( not sure when ) raised the age to 45. You had to be under the age of 45. I was 44, so I just qualified. I turned 45 on December 9th. There were other factors that let you qualify as well. I had no family history what so ever. But the doctor thought I really should have it done (since I was the only one in my family to ever get cancer ) and they fought for it. Which I wanted to know, so the other females & males would know if it was something they needed to worry about. Thank God they don't, but it's still no guarantee that someone won't get it. Take care all.

barbe1958

I don't see the point of the test unless it is to know whether ovaries have to come out. You already have the cancer, so shouldn't it be other people in the family that should take it? If I test postive, that wouldn't mean my daughter has it and she'd have to get tested anyway, right? I'm waiting until she has her baby and then I'll suggest it to her. She is too happy right now to even think about it, but she is sure she only wants one child, so if she tests positive I'd want her to have her ovaries out.

karen1956

When I was tested 4 years ago, it was around $3000, because my insurance was not going to cover it, onc suggested that I just do the multi-site 3 testing which was only a few hundred.....since it came back negative, didn't need to worry about further testing....multi-site 3 is the place many eastern european jews show up with the brca gene.  testing wasn't going to change any of my Tx, but obviously it had implications for my children....

leisaparis

The way the dr. explained it to me, was if I had it my children had it, because they would have inherited it from me. That was the only reason I even took the test was so they would know if they needed to start having mamograms earlier than 40 years old.

fmakj

I am still waiting for my results.  I was told that if I carry the gene, that my daughters have a 50% chance of also carrying the gene.  Also, because I am the 3rd one in my family diagnosed with bc (Grandmother and Great Aunt), I qualify for the high risk screening and my daughters can start getting mammograms 10 years earlier than my age at diagnosis.  They will be eligible for their first Mammogram at 34 regardless of my test results.  The danger with passing the gene on to a son is that they can pass it on to a daughter as the danger to males is not as elevated as for women.  If I test positive, I will definitely be removing my ovaries, but will wait until I get my results and the counselling they will provide.  I should get my results in May.

Meece

Keeping you in my prayers today, Leisaparis.

elimar86861

leisaparis, may your surgery go smoothly today, and your healing be an uneventful time of rest.  We'll be waiting to hear how you are doing.

Kleenex

There is something about the way the BRCA testing works which makes them approach it (if they can) by starting with the person with Known Cancer and then working down the gene pool. So since I have it, they'd test me, and if I were positive, they'd do a quicker and less expensive test to see if my daughters have inheirited it. They would have to be tested - as with all genes, they have half that came from my husband (including an annoying one that involves missing permanent teeth!!!), so they might not have it even if I do. I've read posts from women who are just "worried" about cancer and have a 1st degree relative who had cancer but refused to take the test and so they couldn't get one. If that 1st degree relative meets certain criteria - cancer at a young age or multiple cancers - they could get one without that primary relative getting one.

I'm not going to think about it for a few months. If I opt to go through with it, I may end up going to UT Southwestern in Fort Worth, which has a wonderful cancer genetics screening program. Everyone I talked to there was intelligent and helpful and caring. The screening-certified PA at my oncologist's office is condescending even as we're talking about my current situation, which is considered "good" - so I can't envision her being someone useful to me if I were to get news of bad genes...

robinlbe

Leisaparis, Gina called me at home this morning (we live in the same city, but met over the January mastectomy thread) to tell me about your BMX you're having (I think today).....she also told me about this thread....so I'm here, everybody!!!

Hope you all don't mind if I join up  

I've read a few pages and can certainly relate to a lot of your discussions.....the BRCA testing...yes, I was tested.  There are few females in my family.  My mom hasnt' had BC, but her sister did.  Their mom (my g'ma) was killed at age 40 by a drunk driver, so we don't know what her outcome would have been.  All of my mom's siblings had boys, so I am the only female of my generation.  I have no sisters. My dad was an only child.  Although I had just turned 50 when I was diagnosed with my BC, because I am pre-menopausal, I qualified for BRCA testing with my insurance and the oncologist felt I should be tested.  There is a confirmed lynch syndrome mutated gene on my dad's side of the family, so this could be related somehow too (colon).  This ties in with uterine/ovaries.  Obviously, my concern is for my ovaries AND for my kids (two sons and a daughter).

And a few pages back, you all were discussing new drivers in the family - I can relate there, too.  My daughter has her permit...and I was teaching her to drive when I was diagnosed.  With three surgeries, and doctors appointments galore, driving took a definite back seat.....however, my daughter has difficulty with driving.  It doesn't come naturally at all.  She was born 16.5 weeks early....yes, weighing just a little over a pound.  By the grace of God, she's normal and fine in every way!!  but she does have some sensory issues, which causes her some difficulty in some areas....and driving is extremely stressful to her (AND to me...)

I finally got my husband to take her out last week (for the first time) and that was a relief to both of us.  I'm a little (LOT) more high strung than he is, so I'm sure that was best

Anyway, good to be here amongst you...

blessings....robin

Eph3_12

Welcome to the thread Robin!  16.5 weeks early! YIKES!  That must have been stress practice times 1,000,000,000! Joni

Meece

Welcome to our neck of the woods, Robin.

NativeMainer

The reason they like to test the person with known bc is because it can narrow down the testing for other family members.  The BRCA gene mutations 1 and 2 aren't the only known mutations that lead to bc, just the best known.  There are many mutations in the BRCA gene, most of which research hasn't had a chance to determine how or even if the mutation affects bc rates.  Tast a woman with known bc for BRCA mutations 1 and 2, if those aren't found, run a more complete genetic mapping test, see if another mutation is present.  If there is one, then the rest of the relatives can be tested for that mutation.  More cost effective to go looking for a specific mutation than to run the full gene mapping on everyone. 

barbe1958

VERY good point Native!

leisaparis

Hello Everyone, Thanks for all the prayers and well wished. Surgery went well. Am back home now. Have 2 drain tubes and lots of stitches. Have to go back on Monday to see the surgeon. He'll look me over and let me know when I can have a shower and such. How long after was it before they let you drive? I have to go back on Wednesday to the Oncologist to start the Herceptin treatments I have to do for a year. Then the week after that to the radiologist to start  radiation treatments with her ( 5 days a week for 6 weeks plus 1 day, so far ). Having to find rides is getting a little hairy, so just wondered how long before I'll be able to drive again. Any answers will at least give me an idea. The surgeon left enough breast that it looks like a small A cup. Which is fine with me as long as he got all the cancer. I was a 40DD. Boy did those thing hurt my back, shoulders & neck. I didn't plan on getting any reconstruction anyway, now I won't have to. Thank again everyone and God Bless to all of you.  Leisa

barbe1958

Leisa, you will be surprised how many chest muscles you use to drive. And the seat belt too! Try it in your driveway first...looking over your shoulder and things like that. I found I needed a week.

NativeMainer

At the very least you need to be off narcotic pain medication during the day before you'll be able to drive.  Barbe makes a great suggestion--check out the process in your driveway before actually driving anywhere, you'd be surprised what movements you can and can't do for a while.  Follow you're doc's restrictions-taking care now will actually make your recovery quicker in the long run. 

robinlbe

My doctor had me wait about three weeks, actually.  He wanted all four drains out and wanted to make sure that all my reflexes were acute and that I could move in any and every way without any type of reaction or the lack thereof.......Even after three months, I find I need to put a small pillow under the seatbelt where it crosses my chest.

blessings...robin

PauldingMom

Great news Leisa!!! Glad to hear everything went well. 

elimar86861

My crabapple tree was in full bloom today.  I put the pic at the top.  I was going to show the whole tree, but every view I tried had an ugly automotive component in the background.  Too bad I can't make that pic a "scratch-n-sniff" one, because it smells heavenly.

Meece

That is beautiful, Elimar.

I noticed today, that the almond trees in the orchards have huge almonds on them.  I am amazed how quickly they developed.  It seems like just a couple of weeks ago they were in bloom similar to that crabapple tree.