8-16 Weeks for BRCA 1&2 Results from UWashington :(

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geekyknitter
geekyknitter Member Posts: 187
edited June 2014 in Genetic Testing

I just found out that I have at least 4-8 more weeks of waiting on TOP of the 4 weeks I've already waited for my BRCA results.  I'm trying to figure out how to handle this and also questioning why I ever started this process.  Maybe my family was right to refuse to test and better off just waiting?  I'm just so, so sick of all this right now and I feel like no one around me understands and I'm questioning continuing with this process or canceling my biopsy appointment, not calling my genetic counselor back, and getting on with my life.  I just wonder if I'm doing more harm than good by all this...

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  • inks
    inks Member Posts: 746
    edited February 2014

    You are not in any rush with the BRCA testing. It will not affect your biopsy in any way. Many people have the testing after they are finished with active treatment. The test results are used to prevent any future breast or ovarian cancer, it has nothing to do with any diagnostic procedures or treatments. I had my testing done after the biopsy while I was waiting for the surgery to be scheduled. There is no harm in taking care of your health and in case of BRCA testing it may be helpful for your family members as well.

  • geekyknitter
    geekyknitter Member Posts: 187
    edited February 2014

    I definitely understand that it's likely that those who have been through all this and are on the other side of it probably think my anxiety right now is silly and that 8-12 weeks really isn't that long to be left waiting.  Logically, I can agree with them.

    Unfortunately, that isn't making this any easier to handle.  I was expecting the wait of 2-4 weeks that most of the people had reported elsewhere and really was hanging on to that timeframe as I went through the MRI, then the ultrasound, and now gearing up for the biopsy.  I know my BRCA status has nothing to do with the biopsy, but it's yet another thing that I feel like my life is on hold for.

    I'd rather be planning ahead than waiting.  I know these things probably sound so stupid and superficial to someone who has had a cancer diagnosis and faced treatment with all the pain that comes with it, but before I went to test, I was planning my year ahead and now I'm on hold, unsure whether I should put in a vacation bid at work, or give up my chance to save my time off for potential surgery.  I'm unsure whether I can plan ahead for things to do this summer, or if I'm going to be busy planning for other things.

    I know other people probably handle this kind of uncertainty better than I do and I know logically that being upset about this isn't going to help anything, but I am upset and yes, I'd likely be a little more patient with this process if they hadn't seen some dumb, likely benign lump on my MRI that suddenly made all this feel all too real and brought me right back to everything the other women in my family have been through.

    I feel alone and I feel like I likely have no right to feel the way I do or to go looking anywhere for sympathy, but yet I feel this way anyway.  I was looking forward to the light at the end of this tunnel and it suddenly got pushed twice as far away as I thought it was.  I don't feel strong...I feel weak and afraid and I feel like there is no one to talk to about it.  Even worse, I have trouble concentrating at work and I can't keep being this distracted for four more weeks and expect to keep up with everything I need to do there.

    So, my mind completely agrees with you...I just need help getting the rest of me to listen.

  • lekker
    lekker Member Posts: 594
    edited February 2014

    Geekyknitter - you feel the way you feel.  Please don't worry about how other people might handle this - this is about you.  I'm glad you're coming here to vent your very real fears and frustrations.  Can you try to think of this as a marathon, not a sprint?  Of course you want answers (and good news!) right now so you can move on with your life.  I spent the better part of a year waiting on pathology reports, waiting for genetic testing results, waiting to schedule surgeries, waiting to recover from those surgeries to get back to my life - waiting, waiting, waiting!  It was torture for an impatient one like me.  I know I don't know exactly what you're going through but I can relate to at least some of it.  You're doing all you can to be proactive about your health.  Of course you don't have to have the biopsy or get your genetic results - but not knowing what's going on doesn't change anything.  Can you talk to your doctor about your feelings?  Going through the diagnostic and testing processes can be very stressful and he/she should be able to offer you some help.  If you choose to continue on with the testing, please come back here whenever you feel the need and we will do our best to support you.  

  • geekyknitter
    geekyknitter Member Posts: 187
    edited February 2014

    Thank you.  It's weird, but I feel guilty coming here for support when pretty much everyone here has it so much worse than I do.  I have a little lump that looks benign on any scan and a possible, maybe chance of being BRCA positive.  I'm guessing that most people would prefer to be in my shoes and it feels selfish to complain, but no one else really understands what it's like to be waiting on results like these.

    I know I'll go through with the biopsy and testing.  I have too many people in my life who depend on me, including two kids that I need to be here for even if that means going through all this.  I can't let them down if there is any chance I have something that needs to be caught early.  I think I just hit a point where I needed to feel like I COULD walk away and needed to just be SO angry and fed up, if that makes any sense.

    Looking back, my family always shielded me from this part of the process.  I only heard someone was sick after the diagnosis.  I never knew about the waiting and worrying part.  I never heard about biopsies that turned out to be benign or weeks spent wondering.  I just knew the adults in my life were distracted and stressed and then, at some point, my mother would sit me down and explain who was sick and with what and what stage they were.

    I think a lot of this is also everything that I've held inside for years and years all hitting me at once, things that I just buried deep so that I could put on a brave face and make it through all the funerals, all the sickness, all the loss.  I used to have a big extended family and as I grew up, we buried them until there is hardly anyone left.  I pretended that was normal or that it didn't bother me or that it had no real relevance to me.  I moved away the first chance I had and I built a life for myself and maybe part of me wanted to pretend that I'd moved far enough that it would never catch up with me.

    Now it has and maybe it's time to stop and face more than just the medical part of it all and also unpack all that emotional stuff and deal with it as well.

    Cancer sucks.  It's unfair and I hate it and it's out of my control, but I can't just hide from it, like my family is trying to do.  I also can't run from it as I've been doing.  I have to face it and finish this process and find some place of acceptance.

  • DiveCat
    DiveCat Member Posts: 968
    edited February 2014

    The waiting is hard, I get it. I am surprised you were told 2-4 weeks wait with UW though...when I did my testing in July, I was told their turnaround time was 3 months. This was a key reason I went with another lab with a turnaround time of 2-3 weeks (I had results in 2.5 weeks). With increased demand for testing, times only seem to have got slower despite there being more labs.

    I am in Canada...l was referred to medical genetics last summer...received a letter in mail saying they would contact me with an appointment in 12+ months. Ha! I traveled to US and paid out of pocket. Still waiting for that appointment in Canada....heck my first surgery will be done before I get that call! A 13-week wait for "elective" surgery with two surgeons...12+ month wait for a call for an appointment with a genetics counselor. It is a bit silly, really. I am still keeping that appointment to explore possibility of other testing but obviously my decision-making no longer hinges on it so I can wait.

    You should not feel bad for feeling as you do. This testing can be life-changing. I know it would not change your biopsy or any required (if required!) treatment there, but it can have significant consequences on you without any diagnosis. When you make the big decision to test, which itself is usually a journey, and then have to wait for results....well, every week can feel like a month.

    Please push on with the biopsy and the testing. It is important, it was obviously important to you before. Hang in there!

  • geekyknitter
    geekyknitter Member Posts: 187
    edited February 2014

    Yeah, had I know then what I know now about the wait times for University of Washington versus other labs, I likely would have paid the difference out of pocket to have my testing done somewhere else.  I've easily lost the difference in decreased productivity at work already.

    I'm keeping my biopsy appointment tomorrow and moving forward with that and I'm going to talk to my primary care doctor today about some kind of anti-anxiety medication.  At this point, that's about all I can do...and wait.

  • inks
    inks Member Posts: 746
    edited February 2014

    There you go, you have already talked yourself off the ledge! I was on Xanax by the way from diagnosis to surgery. While all this is very hard we can't let it take over our lives completely.

  • geekyknitter
    geekyknitter Member Posts: 187
    edited February 2014

    I called my primary care doc and spoke with her nurse about anti-anxiety meds.  I have to admit, I felt a little weird doing it, but I just sucked it up and made the call.

    Thank you guys so much for just being there.

  • inks
    inks Member Posts: 746
    edited February 2014

    Hey, no shame or judgment if you are taking the anxiety meds for a reason. There are some that are better for short term and some that are good for long term. A lot of the ladies here take something up to a year from treatment, it's very common.

  • DiveCat
    DiveCat Member Posts: 968
    edited February 2014

    No shame in asking for needed meds, geeky, or in taking them.

    When I told my mum last week I had my surgery date set (it was also "news" to her I was going ahead with the surgery though she knew it was something I had contemplated) her advice included a recommendation to ask my doctor for anti-anxiety meds to take leading up to my surgery. If I did not need them, great, but if it turned out I did, it might help to have them handy especially in the days leading up to surgery. I have never taken anti-anxiety meds before but I certainly can appreciate that does not mean they might not be very welcome for this period of my life. I can't imagine that advice would be any less appropriate when it comes to waiting for test results (be it from BRCA testing or biopsy).

  • geekyknitter
    geekyknitter Member Posts: 187
    edited February 2014

    I did get a prescription from my primary care doctor for lorazepam, but it was a tough discussion to go through to get it.  She doesn't like prescribing anxiety meds and feels that most of them can be habit forming.  She suggested counseling instead, but with it being tough enough to get off work for test appointments, I don't see how that would reduce my stress level trying to get time off for those as well.  I basically felt like she thought I was overreacting to all this, but she did give me a few pills in case I have a panic attack or something.

  • josgirl
    josgirl Member Posts: 231
    edited February 2014

    geekyknitter - I have no idea if this applies but I got my testing at UW too.  I was told if I just did BRCA it would take just a few weeks but if I did the whole panel (about 40+ genes) then it would take the 8-12 weeks.  IF (and that is a big if) you are doing the BROCA panel (which I think is what they still call the 40+ gene panel) then when you do get your results it will be much more comprehensive (and monetarily worth it) than just the BRCA 1&2 test.  I got my results (I think at the 11 week mark) and I was amazed at how much testing went into it and how personally focused the testing was - thankfully all negative but I know about my chances for other cancers with this test now too.  Anyway, just wanted to say that about UW - it may be that you signed up for the BROCA panel and while a much longer wait it is a much more comprehensive report. 

    That being said I understand and appreciate the anxiety of waiting....there is a lot of waiting for results in this journey and they all suck!

  • geekyknitter
    geekyknitter Member Posts: 187
    edited February 2014

    Thank you for the info, josgirl!

    I only did BRCA testing, but my genetic counselor did say that they would do more testing if something showed up unusual.  Apparently they do BRCA testing on the same "platform" as the BROCA panel and if something really shows up unusual, they'll call back insurance and basically say, "I think you also want us to test for mutation X" and then they will run that test as well.  When we went through my family history, there was a smaller risk for Pten mutations than there was for BRCA mutations and we were having trouble getting insurance to cover testing, so we sent off a sample for BRCA testing only.  So, it could be that either the lab is just swamped right now or that they wanted to do some additional testing.

    In either case, I'm feeling better today after my biopsy yesterday.  For some reason, I really had a meltdown last week after my ultrasound and hearing I'd need a biopsy AND hearing this week that my BRCA results were going to take about twice as long as I thought they would, but once I got to the biospy, I actually felt calm and confident that it will be benign.  (The radiologist seems confident it will be and that we're just being thorough.)


    I think it's just easy on the front end of this testing process to underestimate the roller coaster ride it can be.

  • Calsacienne
    Calsacienne Member Posts: 14
    edited March 2014

    Don't complain. I have an appointment with a genetics counselor in JUNE. Then I have to wait four months for the results!!! 

    They wouldn't do it during treatment. I asked and they wouldn't because I don't have "enough family history". My father's cousin (whom I never knew) died of BC in the 1970's. We're Ashkenazi Jewish and have fibrocystic breasts. Our family is also small, very few cousins and something could easily hide...

    I live in France and quite frankly, they don't have much experience with Ashkenazi Jewish people. Sadly, most were killed in the Shoah and most Jews in France are Sephardic.  I already ran into this issue when insisting on Tay Sachs testing during my pregnancy (thankfully, that was negative). Plus, the biggest Ashkenazi population in France is here in Alsace. My husband's uncle is a doctor and explained that Alsatian Jews don't have a lot of the genetic problems that plague their Eastern European cousins. They were isolated for centuries and settled in the countryside, rather than cities. 

    So, my sister, who is already at risk because of lymphoma 12 years ago, went and got tested. They first said "not enough family history" and she said to them "It's my sister! How much closer a relative do you need??" 

    They agreed to test her, because of me, our background and the fact she already has a big risk factor. She was negative.

    That calmed me down and right before rads, they called and got me approved for testing. I got the questionnaire and it asked every detail about my family, except my background! I thought that was the height of stupidity so I wrote, in big letters at the end "I AM OF ASHKENAZI JEWISH BACKGROUND. BRCA 1 & 2 FOR US; 1/40, BRCA IN THE GENERAL POPULATION 1/800". 

    They called and I scolded them for it. "I agree with you completely Madame D. but we're not allowed to ask that. It's against the law but what you did was very good! Although we could have figured it out based on the last names you listed for family members..." 

    They also said that the fact that I have two daughters factored in too. 

    I'm in shock over the stupidity of that law. A genetics questionnaire can't ask a person's background?!? Meanwhile, I'm just so glad I'm even getting tested, and that it'll be paid for. I'm not too fussed about the long wait. Honestly, I wouldn't go under the knife until after the summer anyway. 

    I'm hoping that if I had a really strong family history, they would have jumped on this earlier, perhaps before deciding on treatment. I've also decided that I have to wait so that they can test those who are in a more precarious situation! 

  • geekyknitter
    geekyknitter Member Posts: 187
    edited March 2014

    I'm so sorry you're having to fight so hard for testing!  My husband is Ashkenazic Jewish and I've heard a lot about the difficulties Jews are facing even in Western Europe these days.  I hope everything turns out all right.

    That being said, I still think that I have every right to be frustrated at my own situation, even while having sympathy for yours.

  • geekyknitter
    geekyknitter Member Posts: 187
    edited March 2014

    I just thought I'd post an update, so that anyone else who is testing through UWashington can breathe a little easier.

    My genetic counselor is on vacation and has been for a couple of weeks.  Since we're pretty far past when she initially told me to expect results, I finally called the lab directly and found out that instead of the BRCA 1 and 2 test the entire BROCA panel was ordered, which generally takes about 12 weeks to process.  I feel a LOT better knowing that my results aren't just taking an unusually long time or sitting on someone's desk somewhere or that my sample was lost.  It looks like they just opted for the larger panel for whatever reason and it's taking the normal amount of time to process it.

    So, it's likely that anyone who is just testing for BRCA would not have this long of a wait.

  • DiveCat
    DiveCat Member Posts: 968
    edited March 2014

    That makes a lot more sense geeky. When I tested I know the estimates for the BROCA panel were 12+ weeks (I did not do the full BROCA panel, but I did discuss time frames with my GC).

  • geekyknitter
    geekyknitter Member Posts: 187
    edited March 2014

    Yep and I feel a lot better now that some of the mystery of what was going on is solved.

    I think my genetic counselor was trying, in her own way, to help me worry less by NOT telling me that they were doing the entire panel.  Initially, she said that they would only do BRCA and then, if something on the rest of the "platform" came back odd, they'd call my insurance and get authorized to do the entire panel.  Then, I was confused when suddenly the timeframe for results changed without any further information.  Now that makes sense.  I can see how, for some people, it would be less stressful to have less information, but I'm the exact opposite.  The more bluntly honest someone is with me, the more I feel I can trust the information they give me.

  • geekyknitter
    geekyknitter Member Posts: 187
    edited March 2014

    I got a voicemail today from my genetic counselor with my BRCA results...negative.

    She didn't mention the rest of the BROCA panel and is out of her office today, so I called the lab.  I was unable to get a copy of my report, but I did confirm that they ran the entire panel.  I'm guessing the rest was also negative and she just was focused on the BRCA results and didn't mention the rest.

    I have some very mixed feelings about all this.  On the one hand, I'm relieved that I don't have one of these mutations and I haven't passed them on to my children.  On the other hand, this means we may never know why so many in my family did die of cancer and I have no preventative options available to me, or increased screenings.  I'm also an uninformed negative, but that's the best I'm going to get.

    I plan on calling on Monday when the GC is back in her office and request a copy of the report.  After that, I think about all I can do is eat healthy, exercise, and wait for the usual screening options to be open to me...in 4 years.

  • josgirl
    josgirl Member Posts: 231
    edited March 2014

    geekyknitter - Congrats on being negative....and for what this is worth....even if you are negative your relatives with cancer may be positive.  You may have just been lucky not to inherit those genes.  And regardless I think a strong family history should increase the frequency/availablity of screenings - but maybe not preventative surgery.  I was told that even though I am genetically negative and have no family history that my daughter (2yrs old) will have a strong family history (me) and should start getting screened when she turns 23 (10 years before I was diagnosed).  I am not sure what that screening will be since mammos are not very accurate for young women but I just hope that in the next 20 years there will be a lot of improvement and hopefully cures. I know it may not make you feel any better but there are likely genes they have not yet determined a link to cancer and a lot of research is ongoing in that area as well.  You likely know all of this...but also writing to send hugs your way too. 

  • geekyknitter
    geekyknitter Member Posts: 187
    edited March 2014

    Thank you, josgirl.  :)

    I tried to get early screening mammograms starting at 35, as had originally been recommended by my OB/GYN, given my family history, but I was denied by insurance given that the cancer was all in my great-aunts, not aunts.  It's a little tricky when the "cancer side" of your family is like mine, where my father was an only child and my grandfather's siblings, for the most part, died without having children or had sons.  One of the reasons I pursued genetic testing was because a positive result would at least open up more screening options for me.

    Hopefully, my grandfather was the "lucky" sibling and didn't inherit whatever mutation may have caused the cancers that wiped out his generation and, thus, didn't pass it on to my father or the rest of us.  It could be that my brother's cancers were just one of those flukes or that some environmental factor made him that much more at risk than the rest of us and that whatever it was has no bearing on the rest of us and our risks.

    I don't smoke, I don't drink, I eat healthy, and I exercise.  I've breastfed and used birth control and pretty much done everything they say you should do to reduce your risk of cancer.  In 4 years, I'll qualify for annual screening mammograms and I'll do them.  Beyond that, I'm just going to have to learn to let go and hope for the best.  The truth is, mutations or not, none of us can know what the future will hold or control it.  We can just do our best with the knowledge we have.

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