Stage 2 Sisters Club

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  • RubySlips
    RubySlips Member Posts: 34
    edited August 2016

    ThinkinPos, does your hospital have a genetic counciler? I was recommended to one immediately and she went thru my family history and odds of having certain genes and guided me thru the testing and insurance process and options. Her services are free, it is only the actual testing that costs anything. Also, she said everyone who has breast cancer (thru my insurance anyway) is covered. I just got my results back and am negative for everything (even though my maternal grandma died of bc at 42, my maternal aunt died of it and my mom had it, and on the other my paternal aunt had it at 28 and paternal grandma had it), and I can't tell you the relief it was to look my daughter in the eye and tell her she wasn't cursed! She just has to take better care of herself and break this damn family cycle. I say keep digging and call your insurance company if you have to. Knowledge is power and you deserve to know. You and your daughter. Because it can change her screening options if warranted

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  • ThinkingPositive
    ThinkingPositive Member Posts: 834
    edited August 2016

    Thanks RubySlips. My hospital does have a genetic counselor. I didn't really know much about it when I was diagnosed two years ago and when I asked if I need to be tested they said No and that was the end of that! I often wonder what else I was told that I should have questioned!

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  • ThinkingPositive
    ThinkingPositive Member Posts: 834
    edited August 2016

    Thanks RubySlips. My hospital does have a genetic counselor. I didn't really know much about it when I was diagnosed two years ago and when I asked if I need to be tested they said No and that was the end of that! I often wonder what else I was told that I should have questioned!

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  • NisaVilla
    NisaVilla Member Posts: 574
    edited August 2016
    Thinking - unless you have a health insurance that obligates you to stay with your hospital, you could go for a second opinion to just about any oncologist in the community who will take a little blood for you and give you results in a few weeks. The "counseling" piece is educational and helpful but not mandatory, I did the blood omly. You could also call Myriad Genetics and discuss options and cost if your insurance does not cover the test. The range of cost was something like $500-3,000. The same with Oncotype test which cost $4,100 each. I had 4 tumors and my insurance paid for only one test. The company worked with me so I could have all 4 tumors tested which generated 4 different scores. If this is keeping you awake at night, let me know and I can help with making 3-way calls together 😊 And then we can have a virtual happy dance when negative results arrive to you 🎉🎶👠 Hugs, Nisa
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  • ThinkingPositive
    ThinkingPositive Member Posts: 834
    edited August 2016

    thanks Nisa !! Will let you know what I find out. I got on my Mo next Monday. Will ask again. It's more keeping my daughter up at night. I have two other daughters that don't seem to be worried as much.

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited August 2016

    I think Nisa's approach makes a lot of sense. There's also Color Genomics if you're willing to pay the $249... It might take longer to get results from CG.

    My sister's getting the run around despite my relatively useless genetic counselor's advice that she should be tested and I think she's decided to just go with Color Genomics rather than continue battling her insurer and PCP over the issue.

    In my experience, the genetic counselor added no value to the process. It was my BS (especially) along with my MO and RO who really helped me understand the implications of my results and who guide me to resources. It was also my BS who insisted on extended panel testing (beyond BRCA1/2) and thank heaven she did! The GC relented on that issue only after months of dragging her feet and arguing against it. It's possible that I'm biased as a result... ;)

    No matter how you go about it, good luck with your results, Thinking +.


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  • ThinkingPositive
    ThinkingPositive Member Posts: 834
    edited August 2016

    Thanks hopeful. I will hopefully get my answers on Monday. I have asked a lot of people and it seems that if they have had family members with bc they get tested otherwise not. But to me it has to start somewhere and couldn't there be a possibility that you could test positive even though no family history? Or is hat not possible

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  • RubySlips
    RubySlips Member Posts: 34
    edited August 2016

    ThinkingPositive, based on what my genetic councilor said, it's certainly possible, but highly unlikely if there is not other family history. She pointed out the guidelines that Medicare uses to determine eligibility and how it is based on likelihoods. That might be a good place for you to get more information, but of course it's all part of the insurance game, so may have to take it with a grain of salt. Also, not sure of your age, but when she was going through my family history she flagged anyone that was under 50 when diagnosed as a more likely indicator of genetic involvement. It sounds like it would still be worth a meeting with your genetic councilor, even if he/she says you don't need the test. Maybe that could even provide you with a little piece of mind.

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  • Molly50
    Molly50 Member Posts: 3,773
    edited August 2016

    Well, you may not have your full family history. In my family, my oldest sister had breast cancer in her 20's. We didn't think much about it until I got breast cancer. I knew one Aunt had it in probably her 60's. It wasn't until I spoke to my cousin that I found out that my uncle had breast cancer in his 40's and my cousin believes our other Aunt may have died from breast cancer in her 70's. Nobody talks about cancer like it's shameful. That was all on my maternal side. My paternal side has lung, bladder and possibly another cancer. We have the Chek2 11009del mutation which gives you me up to 30%chance of a new cancer. It has some implications with ovarian, bladder, colon and skin cancer but breast is the biggest due to family history. We never would have qualified for testing if I hadn't gotten cancer. My sister just had a pbmx. Thankfully no sign of cancer. I just had a prophylactic right mx and only had some papilomas, no cancer.

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  • Molly50
    Molly50 Member Posts: 3,773
    edited August 2016

    Hi stage 2 sisters. Catching up here. I had my mx on 7/22. On 7/30 I was taken by paramedics to the ER. I had huge hematoma rupture. I fainted. I ended up in the hospital for two nights and had another surgery to evacuate the blood out. I also had to have two units of blood transfusion. I am just beginning to feel stronger.

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited August 2016
    My gosh, Molly - how dreadful (and frightening). I'm glad you are finally beginning to get back on your feet but please take it easy!
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  • ThinkingPositive
    ThinkingPositive Member Posts: 834
    edited August 2016

    sorry to hear Molly. Hope you are doing well!! Thanks for your response. That's what I fear. Not knowing about someone if they kept it hidden. My mother-in-law never mentioned anything about having breast cancer until I was diagnosed that kind of information is very importantfor my girls.

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  • Byhisstripes419
    Byhisstripes419 Member Posts: 9
    edited August 2016

    Congrats on the negative results, Rubyslips! My results were also negative although my biological mother and aunt were diagnosed with bc. My aunt was actually diagnosed month prior to me. My negative genetic testing results initially raised questions, but i belive it to be a blessing from GOD. I can't explain the joy I have knowing I haven't passed to my daughters a gene that would put them through the battle I'm on now! Just had first cycle of DD taxol, and the joint and muscle pains were unbelievable. Thank the LORD they had subsided after four days of agony. Has anyone else had this experience?

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  • ruthbru
    ruthbru Member Posts: 57,235
    edited August 2016

    Byhiss, try Claritin (not Claritin D) for joint/muscle/bone pain.

    Gosh Molly, that sounds horrible! Take it easy and let yourself heal.


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  • octogirl
    octogirl Member Posts: 2,804
    edited August 2016

    ThinkingPositive, your stats are similar to mine and I was tested for BRAC1/BRAC2. However, what got their attention and led to the testing was my Ashkenazi Jewish heritage.

    Here is what the NIH/NCI has to say. See the section on who should consider testing. http://www.cancer.gov/about-cancer/causes-preventi... Not sure it fully answers your question, however.

    Best; Octogirl

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  • mjsgumbas
    mjsgumbas Member Posts: 373
    edited August 2016

    Hello all! Haven't posted in a while...but just came upon a circumstance that has me needing to vent - sorry in advance if this seems petty with all the serious issues BC brings, but this struck a nerve with me today and I can't seem to stop crying.

    A year ago my boss & I changed companies. We still work in downtown Chicago but a lot further from the train. It was my assumption my boss, who I have worked 17yrs for, explained to the new regime what my hours have always been... I actually leave about 3 minutes earlier now to account for the longer walk to make my normal train on time.

    Today, 13 months since we started here - now an issue has come up with my leaving early. It struck a nerve because for 3 1/2 yrs my boss knew the PTSD and extreme anxiety of people around me stresses me out, so I have left earlier to be able to walk at a more comfortable pace (now added joint & bone pain from AL's) and to get my single seat on the train, so I don't have anyone around my still numb right side.

    I don't know if I am more pissed at my boss for not having my back, or for this to be brought up to him and not me directly or the fact that I have to explain that I am not OK even though I look ok. I now have to meet with the personnel director to explain and document my situation so it can go in my file and she can shut everyone up - she is great & isn't bothered by any of this as long as it works for our team...stupid thing to be upset about - but so frustrating after all this time.

    I know people think - well it was 3+ years ago and you look great, so everything is fine - move on... I wish it was that easy...like changing a pair or socks or something. Not sure why this is bothering me so much - catholic guilt for leaving a total of 10 minutes earlier than others - or if it's the fact that you have to explain this anxiety that is probably ridiculous to other people who haven't lived it - or am I just mad at myself for still feeling like this!!!!

    Sorry for venting, but all of you have a way of understanding as others can't... Just typing makes me feel better even though it's through tears...

    ((((Hugs)))) and thanks for li

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  • ruthbru
    ruthbru Member Posts: 57,235
    edited August 2016

    Oh for goodness sakes, what a bunch of jackasses!

    Tell your boss that you feel very hurt by him not having your back. And really lay it on thick with the personnel director.......take about your treatments, the full physical and emotional toll, your dedication to doing your job despite your ongoing issues......make her feel really BAD (which she should feel). Use it as an educational opportunity so that maybe the same thing won't happen to someone else down the line.

    Sending a hug!

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited August 2016

    I don't blame you for being frustrated and hurt by this, Mjsgumbas. Talk about petty! The one thing I'd say is, take a deep breath, go into that meeting with a clear mind, lay it all out for the HR director (or whomever) and get it behind you so it doesn't take any further toll on you. I'm crossing my fingers that the meeting goes well, clears everything up and formalizes the arrangement so that you won't have to give it any further thought. Also sending a hug!

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  • mjsgumbas
    mjsgumbas Member Posts: 373
    edited August 2016

    Thank you Ruth & Hopeful - it's 1 manager on our floor that I am told has to "play by the rules"...1 apple ruins the bunch for sure! I will go in with a clear head and hopefully no more tears tomorrow and speak with the personnel chick (who is very cool and lives in the suburb next door to me) and hopefully this will all be behind me...

    You are right Ruth - people need to be educated. Just because you have gotten through surgery and treatment doesn't mean that this all goes away....it gets better but you can never go back to who you were before cancer..

    Thank you for listening and sorry for being a cry baby... You guys are the best!!!

    Mary Jane

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited August 2016
    Mary Jane - no way were you being a cry baby! Good luck tomorrow. Let us know how it goes - and remember that e've got your back. :)
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  • Molly50
    Molly50 Member Posts: 3,773
    edited August 2016

    MJ, everyone for the most part in my office knows that I have a child at home with serious health issues and that I often leave early to cover our nursing shifts. Sometimes an hour early plus with the whole breast cancer issue has been surgery, radiation and doctor appointments. Not to mention that I work at home even when on medical leave for free. Yet still, I see the look on one of my co-workers face every time I leave and I wait for the day he says something about it. Hopefully my boss, who is also his boss, shuts him down. I don't like to create resentment or act like I deserve special treatment, it's just a fact of my life and they work around it in order to keep me. Hopefully it will be worked out and not brought up again for you. 10 minutes is truly a petty complaint!

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  • NisaVilla
    NisaVilla Member Posts: 574
    edited August 2016
    MJ - first a big HUG💕 and now sharing that my finger is desperately looking for a "like button" to agree with everyone's comments and very especially with Ruth's first statement - indeed a jackass the one manager, and your boss a little whimpi but probably a good guy overall. I am hopeful that the female in HR will "get it" that this is a medical issue likely protected by labor laws. Worst case scenario, have them change your schedule to arrive 15 minutes early and leave 15 early and be sure to sing loudly as you leave your office every day, lol. And if they don't make the change for you, maybe you could ask your doctor to help with a letter addressing the potential safety issues in public setting related to your numb side. Above all, fight it my friend, and remember that we are all in your pocket tomorrow.

    Molly - because I get to my email so late in the evening, I think I somehow missed your post about fainting, going to the ER, surgery, and spending 2 days in the hospital. Wow, I am so sorry this happened to you. What caused all that? Hope you are feeling better now 🌷 and that recovery from mx is going as planned.

    On a different note, is the post count accurate? Says I posted 529 times, feels like in the thousands. Odd.

    Hugs, Nisa

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  • mjsgumbas
    mjsgumbas Member Posts: 373
    edited August 2016

    Molly - doesn't it stink that people can't just mind their own business!?!?!? Also, other than a direct manager - I don't think anyone should have to share their life story with everyone! As long as the "boss" knows the circumstances and is ok with it... that's all that should matter. I come to work, do my job and go home. I work to live - NOT live to work! I don't care what other people do... because it's not my business and it doesn't effect me!

    Thank you Nisa!!! I am a fighter.... and I usually don't take sh*t from anyone... I think that's why I wasn't approached directly about this. Even the big boss, branch manager, went to my boss

    Happy

    I am a Leo in the truest sense!!! 10:00 is my meeting.... wish my personnel director luck LOL!! Thanks for having my back ladies!! You are the best! Your kind words wiped the tears and brought out the fire... to be continued....

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  • Molly50
    Molly50 Member Posts: 3,773
    edited August 2016

    Keep fighting MJ!!! Nisa, I ended up with a huge hematoma that ruptured. Weird because I was 8 days post op from a very unremarkable recovery. Both surgeons said it usually happens within 48 hours. My DH thinks that I had a very slow leak in there and that's why it took so long. I wasn't doing anything strenuous or lifting anything. Thanks for asking.

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  • mjsgumbas
    mjsgumbas Member Posts: 373
    edited August 2016

    So....all went very well. It was basically forget this ever happened and keep doing what you are doing. She asked a few questions and was totally understanding - YAY!! She then spoke with the "bad apple" manager on my floor. He called me into his office and said "no worries" all is good - he just needed clarification and now that he knows - everything is fine.

    Phew...I get really tired of fighting and we all know, the less stress - the better!!

    Thanks again!

    Mary Jane

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited August 2016

    Mary Jane - I'm so glad that's over and done with. It sounds as though you had a clear and reasonable approach and everyone else responded in kind. Phew! I hope you can relax and let the stress evaporate.

    Molly - please continue taking it easy. It sounds as though your body's just looking for a time out.

    Nisa - thinking of you and your family. I also hope you're not dealing with any of the fires/smoke/excessive heat down there in CA.

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  • ruthbru
    ruthbru Member Posts: 57,235
    edited August 2016

    Good, Mary Jane!

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  • Molly50
    Molly50 Member Posts: 3,773
    edited August 2016

    Great news MJ!!

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  • NisaVilla
    NisaVilla Member Posts: 574
    edited August 2016
    MJ - Happy for you but I still don't like that manager. Yesterday didn't have to happen to you. Hugs my friend!

    Molly - Sounds awful (fainting is a big deal) but glad is behind you.

    Hopeful - It is crazy hot around here but no fires yet. Thank you for thinking of my brother. He is in bed 23 hours a day and 1 in a wheelchair. Heartbreaking. If I ever get to that point, please someone help me expedite my end.

    Hugs to all, Nisa 💕
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  • Lemint
    Lemint Member Posts: 162
    edited August 2016

    Hello everyone, this is my first time posting in this thread. I had my first mamogram on my remaining breast on Friday and I'm a nervous wreck. Everything was fine last year but I'm still scared. I imagine you all felt scared as well. I guess that's the new reality.😥😥

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