Test Inconclusive

momdeeco · 03-01-2007, 08:28 PM

I got my results today form Genetic Testing for BRAC 1 and BRAC 2. It came back inconclusive. Has anyone else had results come back like this and what did you do. I have an paternal aunt in a nursing home, and I will be asking the family if they would consider having her tested also, as she had breast cancer many years ago. (I also had a paternal great aunt and paternal great grandmother that had breast cancer.)

islandgirl · 01-07-2010, 09:32 PM

Hi, you posted your BRAC 1, BRAC 2 experience a while ago. I'm new to this, however, I did have genetic testing recently. My BRAC 2 came back as a 'variance of non-significance', i.e., it was inconclusive. This apparently rarely happens - my genetist explained that there is a narrow band of genetic testing at present and the hopes are that it will vastly expand in the future. That is why our results are archived - with the hopes new information will always be emerging. Admittedly, I was bummed to have this test inconclusive. I do feel, however, I have given the gift to my sisters and nieces (my daughters are adopted) of knowing they have less to worry about with respect to breast cancer.

Ceesun · 01-08-2010, 07:01 PM

I had brca testing in 2003 and I was told I had a variant for 2 and negative for 1. Last summer, I received news that the 2 could be reclassified as negative--it took 6 years to get the definitive answer. Ceesun

islandgirl · 01-08-2010, 07:34 PM

Hi Ceesun: Interesting that you got an update about your BRAC 2 testing after several years. (And good news, too). I am told genetic testing will get so specific in the future, there may be antibody treatments vs. chemo for most cancers... Thanks for your message.

Jude
Island Girl

Jackie07 · 01-08-2010, 11:48 PM

Karla and Jude,

I am having a hysterectomy/oophorectomy scheduled next Thursday. It seems an coincidence that I, too, have had uterine fibroids (my 'rewards' of three rounds of infertility treatment) - as had my 2nd sister who had had a hysterectomy several years ago. I know it is pumped by estrogen, and though I was only weakly ER+ in 2003 and the recurrence was ER- (just been told by my oncology nurse,) my oncologist did agree with my decision to have hysterectomy and oophorectomy. The main reason I started to take action was because my 2nd Brother has just had surgery and chemo for Stage IIa colon cancer. Coupled with Mother's Non-Hodgekins Lymphoma 11 years ago, I thought I should take some precaution.

I'm going to start a thread asking for members advice on how to handle the recovery of hysterectomy/oophorectomy. Please be sure to reply, thanks.

Cannon · 01-10-2010, 09:56 AM

Jackie, did u have BRCA testing? I did, and they asked to use my material for further testing as there is another syndrome (PTEN a/or Cowden, I think) which is characterized by family history of uterine fibroids, thyroid/colon cancer in addition to breast cancer. They have not yet found the marker, but are looking for it - you might want to check it out.

If your hysterectomy/ooph is laparoscopic - you should find the recovery pretty easy. I had ooph at same time as breat surgery and barley noticed it. Honestly.

Best,
Rebecca

Jackie07 · 01-10-2010, 04:27 PM

Thanks, Rebecca. I never was worried too much about my previous surgeries. Somehow this upcoming one makes me feel a little bit uneasy - mainly because of the mobility issues, I guess. (Now that my cognitive function is almost back to 100%...

Thanks again for the reassurance.

v-ness · 01-10-2010, 05:02 PM

hi jackie. i had a supracervical hysterectomy last january, actually this weekend to the day! they left one ovary in so i wouldn't be plunged into menopause. the joke's on me, i guess, as i find myself plunged into it anyway thanks to chemo.

anyway, the laparoscopy was an easy recovery. actually i'd had it twice before thanks to endometriosis, it's just that for a hysterectomy they need to put more little holes in your abdomen. i would highly recommend it. they only kept me overnight a second night because there was a big snowstorm and i had no one to go home to. i was up and around the day after surgery. basically, because they blow your belly up with gas, you will feel a bit like a truck tire ran your middle over. i think that's really the worst of it. well, for me the worst of it was an allergic reaction to the percoset and bandages.

i found that motrin was just fine to treat the pain. i was back at work several days later. a week recovery instead of the recoveries of old that took weeks! so, i'm a 3 timer when it comes to that kind of surgery, if you want to ask any other questions. (glad i had it all out too! i had endo, covered with fibroids, adenomyosis, and 2 cysts on the ovary they took. a mess!) valerie

Jackie07 · 01-10-2010, 09:08 PM

Alright! Here comes the master sergeant who's seen it all.

I had wondered if I was having endometriosis in my 30's. I was always suffering very much during menses. Often had to take a sick day from school and work (had no idea it was not 'normal'). But after my brain surgery, I was sleeping better and became quite 'normal' - only to end up with recurrence (was 'poisoned' at work because of the tar used for the roof repair) and then breast cancer.

Were you born premature? I was a couple of months premature when Mother was 37 and I stayed in the 'warm oxyen tent' in the hospital for several weeks. My family (both parents and 5 older siblings) always attribute all my problems to being a premee. But now we know it has had a lot to do with genes.

I see that you were in the Boston Marathon in 2000. Are you the one wearing the cap? I ran track and played basketball from junior high all the way to college. Only one other basketball team members has also been treated for breast cancer.

Thank you so much for sharing your experience.

v-ness · 01-11-2010, 08:32 AM

hm, no i don't think i was premature, though i was a sickly scrawny thing until they figured out i was allergic to milk. i had seriously painful periods from the get-go when i started at age 11. i believe i always had endometriosis but the nurse practitioner i saw always pooh-poohed the degree of pain i was in. when i finally saw a real doc in my 30's she recognized what i had. i'd get cold sweats, doubled over in pain, pass out, the whole nine yards. it pissed me off that i had to suffer so much when i never even used those reproductive organs. the best thing i ever did was get rid of them. i wish i did so 25 yrs ago!

so i am curious what you mean by poisoned by roofing tar? it just so happens that i spent all last summer on my back porch roof patching it with tar and cleaning my skin off with gasoline, then showering.

yes, i did the boston marathon course 2x for the dana farber jimmy fund. that's me in the cap and my late husband beside me. he was my 'team'. who'd ever imagine that 6 yrs later he'd have esophageal cancer and die. he wore a t-shirt during the marathon that read "Eye On Survival" just by happenstance. the one he has on in this pic is from the first JF marathon i did the year before. i might have run slowly, but i ran.

i think we raised over $3K.

valerie