TRIPLE POSITIVE GROUP

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  • camillegal
    camillegal Member Posts: 16,882
    edited August 2013

    Good Morning in this area. I hope everyone hs a decent day.

    Nicky stupid question time (get used to it) How long does it take to go to Ireland from where u are? It will be wonderful for u to see u'r mom and grandma--they will be so happy to see u too.U have to keep us up to date on that.

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  • ashla
    ashla Member Posts: 1,581
    edited August 2013

    Good morning , good afternoon and Jenn...I have no friggin idea what time of day you're in,

    Nicky J ..and Camille,

    Nicky J,

    I think it's great that you 'll be going home to see your mum.For both you and her! It must be so terrible for her to be torn between caring for her mother and her daughter. Have you seen your family since your dx?

    Neither of you complains like the rest of us but it appears that Nicky..you must be in some considerable pain . I hope that the meds mitigate that.

    So so sorry.

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  • BethCon1
    BethCon1 Member Posts: 132
    edited August 2013

    Soo, my freaking insurance denied the pet scan!! They said they didn't see the NEED for it?! I'm pissed!!

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  • NickyJ
    NickyJ Member Posts: 722
    edited August 2013

    Beth,

    I'm so sorry your insurance is being difficult! Of course you need the PET scan, that's why it was ordered!!! Don't know much about how the system works there, but I hope you find a way round it.



    Camille,

    Not a stupid question, its nice to be asked!!

    I live about 10 mins from Bordeaux airport and my family live about 1/2 hour from Dublin airport. Because it was our choice to move to France we took in traveling times as part of the reason for choosing Bordeaux to live in. The flight only takes about 1hr 45mins, so I'll leave here after breakfast and eat lunch with my mum!



    Ashla,



    I've only been home once since my dx, that was in may. It was bitter sweet, hard to face my family and see their tears. But they got to see that I'm doing ok and that's important.

    Yes, I do have pain, but the meds really help. It's all concentrated in my neck and upper back and is due to damage to the bones. Unfortunately it limits what I can do - exercise wise I'm only allowed walk or swim for example. No brusque or continuous movement allowed. In the plus side, this means I can't do much housework!!!

    Nicky

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  • Bren58
    Bren58 Member Posts: 1,048
    edited August 2013

    Beth, I know this is frustrating. See if your doctor can call the insurance co and ask for a "peer to peer review". Most docs are familiar with this procedure, but arn't always willing to do it because it takes time. Sometimes when the doc explains to them the neccesity of the test, they will then authorize it. I learned about this when my PET was initially denied. Hopefully your doc will be willing to go the extra mile to do this for you.

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  • ashla
    ashla Member Posts: 1,581
    edited August 2013

    BethCon,

    F... Insurance companies..You and your doctors neither of whom have the time or the energy to do so can fight ...and win....this. Don't take no for an answer.

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  • ashla
    ashla Member Posts: 1,581
    edited August 2013

    NickyJ,



    I think everytime you see them it will be bittersweet and some or all of you will be close to tears. I feel that way regularly post dx. What we don't take into account until something like this happens is that none of us ..cancer or not....ever knows what will happen in the time we are apart. That we should treat every moment together as if it were precious.

    Now I know. Sometimes I still forget.

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  • BabyRuth
    BabyRuth Member Posts: 264
    edited August 2013

    Bethcon-my PET scans are almost always denied.  My MO always appeals them.  The last time in April they would not approve PET but they did approve a CT scan. Which led to a bone scan which eventually led to a PET scan.  They ended up paying for 3 tests instead of one.   Keep fighting!  

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  • goutlaw
    goutlaw Member Posts: 283
    edited August 2013

    Beth of course you need a pet scan,they want to make sure it is not elsewhere besides your spine. Insurance Companies are getting worse

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  • camillegal
    camillegal Member Posts: 16,882
    edited August 2013

    Beth as we've all said u have to be u'r own advocate, Why they deny things with cancer amazes me--they know we need all kinds of stuff all the time. U have to get pushy.

    Nicky how nice u had that all figured out--That's not such a long ride then--Oh I'm glad u'r going to see u'r family--it will be good for all of u.

    Ashla u've said this before but I complain all the time--remember just this last week when my surgeon wouldn't operate on me cuz the risk was to high so it's better to live with my pain. I complained but of course I wasn't going to take the risk LOL

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  • BethCon1
    BethCon1 Member Posts: 132
    edited August 2013

    Well, my doctor appealed it. She requested a peer to peer review and after all that they still denied it!! They want me to get a ct scan instead and then if anything shows up on there they will approve the pet scan. What the hell?? I already had to have an xray for them to approve the bone scan, and now I need a ct scan to get the pet scan! I'm so irritated at this point.

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  • lago
    lago Member Posts: 17,186
    edited August 2013

    BethCon1 Insurance knee jerk reaction is to say "no." Are you on Aetna by any chance? I hate for profit health insurance. OK so go with the less expensive test. Then when/if they see something they will have to pay for the expensive one too.

    BTW I was getting a blood test every 5 months to see if I was going to stay in chemo-pause (so I could keep taking Anastrozole). The insurance would approve the test but reject the blood draw. WTF how are they going to get the blood for this test if there wasn't a blood draw. Had to call every single time for 5 months!

    NickyJ Do they have you on some kind of bone building drug? 2 of my friends with mets are on Prolia (denosumab)‎

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  • BethCon1
    BethCon1 Member Posts: 132
    edited August 2013

    lago, yup, you guessed it. It's Aetna :/

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  • lago
    lago Member Posts: 17,186
    edited August 2013

    I have them too now. Hate hate them.

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  • goutlaw
    goutlaw Member Posts: 283
    edited August 2013

    So do u get ur menstrual after chemo or on tamifen! I read its more likely to recur if u get ur period after ur done with treatments?

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  • goutlaw
    goutlaw Member Posts: 283
    edited August 2013

    Wow sounds.scary to see ppl with 2 or 4 nodes only...I thought we had more then that in our body

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  • Jennt28
    Jennt28 Member Posts: 2,021
    edited August 2013

    Good morning ashla :-) It's 6am here just now. Dragging myself out of bed and off to work for Friday.



    Our 21yr old daughtr is travelling Europe with a girlfriend and we are messaging by Viber. They got lost in Seville trying to find a bus stop today and so she was messaging me overnight and I was googling bus stops in Seville. I'm a bit tired this morning and not looking forward to my aching ankles (Tamoxifen pain of the week) hitting the ground.



    Jenn

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  • lago
    lago Member Posts: 17,186
    edited August 2013

    goutlaw it's not that I only have 4 nodes, I had four sentinal nodes. There are many nodes:

    http://www.breastcancer.org/Images/axillary_lymph_nodes%5B2%5D_tcm8-78465.jpg

    A pectoralis major muscle

    B axillary lymph nodes: levels I

    C axillary lymph nodes: levels II

    D axillary lymph nodes: levels III

    E supraclavicular lymph nodes

    F internal mammary lymph nodes

    Read more about axillary lymph nodes and their role in diagnosing and treating breast cancer.

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  • NickyJ
    NickyJ Member Posts: 722
    edited August 2013

    Iago, while I was getting chemo, I had zometa infusions. Since march I get xgeva injections once a month



    Jenn,

    Sounds like your daughters having a great time! Mine is 18, and is talking about traveling to India next summer......



    Nicky

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  • goutlaw
    goutlaw Member Posts: 283
    edited August 2013

    Thxs largo for the visual lol...Just issome ppl have 2/2 nodes lol...Instead of 2/14 which 2 should mean positive and 14 meaning how many u have

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  • NickyJ
    NickyJ Member Posts: 722
    edited August 2013

    Then I'm in trouble Goutlaw-

    My nodes were 0/0 😉!

    Nicky

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  • lago
    lago Member Posts: 17,186
    edited August 2013

    goutlaw 2/14 nodes means that 14 were removed but 2 were positive for cancer. I had 0/4 on the DCIS side and 0/10 on the IDC.  No nodes with cancer but 10 (level I) removed on the left and 4 (sentinal nodes) removed on the right.

    But it's true we don't all have the same amount of axillary nodes. There are some people that have much more than 10 level axillary nodes.

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  • BabyRuth
    BabyRuth Member Posts: 264
    edited August 2013

    Cyber knife radiation treatment number one is in the books! 4 more to go! It was not too bad, just a little long to lay on a table. So glad to finally get my treatment plan started.

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  • NickyJ
    NickyJ Member Posts: 722
    edited August 2013

    Glad it's going well BabyRuth! I hope the other 4 sessions go just as well



    Nicky

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  • goutlaw
    goutlaw Member Posts: 283
    edited August 2013

    O OK thxs lago

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  • lago
    lago Member Posts: 17,186
    edited August 2013

    We had our Making Strides Against Breast Cancer kick off breakfast today. I was one of the speakers. My bit went over really well:

    http://i1088.photobucket.com/albums/i323/lauren3g/stridesBreakfast2013_zps95a49396.jpg

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  • MarisaC
    MarisaC Member Posts: 34
    edited August 2013

    Congrats lago! Love the shirt :)

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  • lago
    lago Member Posts: 17,186
    edited August 2013

    Had to wear the shirt… it says "staff" on the back. I was also working the event.

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  • camillegal
    camillegal Member Posts: 16,882
    edited August 2013

    Congrats Lago--u work so hard to make that difference. It's wonderful.

    That was a good example of the nodes Lago--I never saw them, I remember just hearing that they were kind of like a string of pearls--Only I figured they were the ugly kind that went into decay.

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  • Moonflwr912
    Moonflwr912 Member Posts: 6,856
    edited August 2013

    Babyruth, glad you finally got started. Beth, sucks for insurance company to be so inflexible. Lago, glad your talk went well. And, Lago, how do I count the fatty mass the PS took out of my breast when I got my new TE yesterday? LOL he said it could have had " a node or two" in there! LOL. It's what I had the ultrasound on a couple of months ago. Actually he thought everything looked good, so I can't complain. LOL Much love to all.

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