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  • journey4life
    journey4life Member Posts: 517
    edited January 2012

    Anandagram, 

    I am having an ooph as a preventative measure mainly because I'm BRCA1 positive. I just need to decide whether it will be done at the same time as BMX w/ TEs. When it comes to this hateful disease, what is "extreme"? All of it!

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  • Reality
    Reality Member Posts: 782
    edited January 2012

    Thanks, lisajcj - Yes, All of it is extreme!!! My gyn is very progressive, so I am hoping she agrees with my ideas on the preventative ooph. Best wishes for a speedy recovery from you BMX. My thoughts are with you,

    Sher 

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  • tracie23
    tracie23 Member Posts: 598
    edited January 2012

    Anandagram, I had a preventative ooph this summer when I had my TE put in and my port taken out...I am also BRCA 2 , I was going to have a preventive double MX but than my husband lost his job and we lost insurance and I found out I had cancer later on.......

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  • Reality
    Reality Member Posts: 782
    edited January 2012

    Thanks for sharing tracie - Oh, I am so sorry you lost your insurance. I lost my teaching job two years ago, but, thank goodness, was given the opportunity to take early retirement. The retirement monthly benefit is half of what it would been in five years, but at least I have my insurance until I am 65.  OMG - I just feel so badly for you - I also note that you are triple negative - just as I am and IIa - so sorry to see you have mets.....

    Sher 

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  • tracie23
    tracie23 Member Posts: 598
    edited January 2012

    Anandagram, I don't have mets, do I ? someone else said that to me one day... does my diagnoses mean something I don't know?

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  • Babs37
    Babs37 Member Posts: 455
    edited January 2012

    tracie- It's because it's written "mets" in your diagnostic..................

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  • tracie23
    tracie23 Member Posts: 598
    edited January 2012

    OH MY GOSH I JUST SAW THAT... I don't know how that got there...  uuuuggghhhhhh

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  • tracie23
    tracie23 Member Posts: 598
    edited January 2012

    I just fixed it....

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  • Reality
    Reality Member Posts: 782
    edited January 2012

    Oh Tracie - So glad you do not have mets!!!! Whew! So sorry if I scared you. I was glad to see you had 0 positive nodes and surprised to see mets - but we can have mets without node involvement - so glad you do not!

    Sher 

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  • tracie23
    tracie23 Member Posts: 598
    edited January 2012

    I almost sh$% myself.... I was like why do people keep saying this to me... must have been the chemo brain affecting me while I was filling it out LOL ... I am so glad not to have mets either whew!!! thank you for careing.

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  • Reality
    Reality Member Posts: 782
    edited January 2012

    Here's a big hug, tracie! 

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  • Sugar77
    Sugar77 Member Posts: 2,138
    edited January 2012

    Wow...what a busy thread.

    LauraJane so good to see you posting again.  Hope you're feeling better after your last treatment and that it kicks your FC out of the park!

    Suze - I was so glad to read your posts of your trip over Christmas.  Hopefully your current hospital stay is short and you can get back on your feet to get ready for the cruise in Feb.  You'll love it.  I hear the Disney cruises are fabulous.

    Welcome all the new ladies. Sorry you had to be here but you will get  a lot of support from the wonderful ladies on this thread.

    Happy New Year to all of you.  I"ve been away for a week on vacation and have a lot of catching up to do on this thread. We went to Cancun and our flight home was scheduled to arrive in Toronto last night at 2:00 a.m. but it was delayed and we didn't get home until 4:00 a.m. I'm zonked! I see my Medical Onc on Wednesday for a check up and now have to get back in to cancer patient mode :(  

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  • gillyone
    gillyone Member Posts: 1,727
    edited January 2012

    Tracie - i know the idea of mets is anything but funny but I had to laugh at the exchange of posts. I pretty well always look at people's signatures and often see mets in there along with things like stage 0 or stage 1 no node involvement. I think it's because when we first become a member we are so new, we don't know how to fill in the info and half of us don't even know what mets means!!!

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  • tracie23
    tracie23 Member Posts: 598
    edited January 2012

    The crazy thing is it wasn't there at one point... I don't know how it changed??? Or what I did Foot in mouth

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2012

    tracie-- I wondered about that "mets" word in your signature also. I always get a little concerned when I see zero nodes and mets.

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  • Titan
    Titan Member Posts: 2,956
    edited January 2012

    Well...thanks Tracie for fixing that...I was wondering too...geez...was someone creeping on your profile or something??

    Suze..hope you are home soon and planning to wear those Minnie Mouse ears...

    Um..a little story to tell you..went to get groceries today...walked out. drove to a nearby dept. store to buy some new running shoes and realized I had forgotten to pick up my groceries.... so I got back in my car and went to pick them up.....just when I thought my brain was getting better...guess not..dang..

    My new shoes are HOT..black with just a little pink...my DH was kinda smirking about them..dang him...

    Welcome to all our new TN's on this board...as you can see we talk about about alot of things..but hopefully we can help you through whatever you are going through right now..ok??

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  • Suze35
    Suze35 Member Posts: 1,045
    edited January 2012

    Quick update - I thankfully don't have a pulmonary embolism, which was the first thought. After a re-read of the CT scan, it was determined that I have pneumonia. I am also pretty anemic - my doctor is keeping a close eye on my blood work, and will pull the trigger on a transfusion if I show any sign of going downhill. My heart rate has dropped a bit to 125-130, but still too high. We are waiting to see if that continues to improve with more fluids and antibiotics, and as my anemia slowly improves. Upshot is, another 2 nights here. Ugh.



    Best,

    Susan

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  • inmate4232010
    inmate4232010 Member Posts: 310
    edited January 2012

    Suze....glad it's not the worse of the two.  Just seemed bad to say "yay for pneumonia."  Hope you are getting lots of good rest while in the hospital and know you will come out feeling stronger!

    I seem to be on a sleep all day cycle after this last round.  Between the extreme all-over bone pain and general fatigue, I can't sleep.  But boy do I want to.  Tonight I will be taking some pain meds to help.  Let's hope it works!

    Have a good night all! 

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  • riley702
    riley702 Member Posts: 1,600
    edited January 2012

    Glad it's not an embolism, Suze! Yep, pneumonia and anemia both will cause your heart to beat faster, trying to increase the amount of oxygen to your body. Anemia means not as much hemoglobin to carry oxygen, and pneumonia can clog and fill areas of lung tissue, which then can't absorb as much oxygen as usual from breathing. The only way the heart can work around this is to pump more often.

    Mity, my onc brought it up. He got a baseline bone density before he switched me to Aromasin, as it can increase bone loss. I had always had excellent bone density, in the 98th percentile or higher, so I was really shocked to find out I have mild osteopenia, or the beginning of bone loss. BC and its treatment is really the gift that keeps on giving, isn't it? Grr. Anyway, he said I could pick whether I wanted to do something like Fosamax, which is a weekly pill (my Mom's on it and says it causes her terrible heartburn), or I could have Zometa, which is a twice yearly IV. I looked it up and it seems to have fewer side effects and I really like the twice a year thing. If all goes well, I'll suggest my Mom switch to Zometa from Fosamax.

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  • christina1961
    christina1961 Member Posts: 736
    edited January 2012

    Inmate,

    Hope you are feeling better soon and get some good sleep.

    Hope everyone has a great night- or morning!  I seem to feel a little better this round of chemo- no rhyme or reason for that, but only two more cycles and I'm done! I'm going to try to work tomorrow so Monday won't be so bad. 

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  • Babs37
    Babs37 Member Posts: 455
    edited January 2012

    Susan- Glad to hear you are in good hands and that you are getting better. Take good care. Hugs.

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  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited January 2012

    Susan - I hope you are getting some good rest and you continue to improve.

    Hugs,

    Michelle

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  • Reality
    Reality Member Posts: 782
    edited January 2012

    Hello Susan - my thoughts are with you. 

    Sher 

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  • msjag
    msjag Member Posts: 416
    edited January 2012

    Hello everyone!!  I was just tested for braca 1 &@, negative, I believe its new practice from NCCN if you are under 60 and have triple neg.  Many oncs, (Dana Farber, Dr Winer who is an associate of my onc at a different office) recommed this, thinking that many TN's may be braca 1 and 2 even without a family history.  I read this, and went to my onc, and she said yes, it is recommended, Blue Cross BS, my insurance paid for it, so it must be covered!! I'm not good with links, but I believe I read this on an article right on Breastcancer.org.  Wanted to share.   Its so wonderful to pop in and read the wonderful support here.   Wishing you all a healthy 2012.

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  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited January 2012

    I am 61 and my insurance is covering BRCA testing (I have Anthem BC BS of CA).  I am lacking any significant family history, also.  I should be getting the results any day now.  Dana Farber worked with my insurance company on getting the approval.

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  • Reality
    Reality Member Posts: 782
    edited January 2012

    What a coincidence it is that I just found your posts! I just wrote to my med onc to request BRCA testing. He just brushed it off as "something some people like to do". I was adopted and have no idea of family history - I want to know!!! My BC/BS has been absolutely amazing so far - I have only had to pay out $200 for thousands and thousands of dollars of treatment. I will have my med onc office check with them to see if BRCA testing will be covered for me. Wonder why my med onc. brushed it off?

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  • Reality
    Reality Member Posts: 782
    edited January 2012

    ,,,my post continued....I especially want to know since it was determined that I had an "incomplete response to chemo". I am seriously considering demanding a preventive oophorectomy - I do not be extreme, but why not get the darn ovaries out before the cancer decides to attack them?

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2012

    Hmmm.. I have BC/BS and they would not cover BRCA testing. I looked into it 6 months ago.

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  • CharB22
    CharB22 Member Posts: 310
    edited January 2012
    Anandagram, Wow...I'm very surprised about your onc's response to the BRCA test. I'm also adopted and my BS told me to get the test. My insurance, BC/BS also covers it but certain criteria have to be met - diagnosis if TN under the age of 50 (which I am) and have relatives with BC. Since I'm adopted, that's not going to be known. You should definitely find out if your BC/BS covers it. I'm glad to hear you're having a good experience with your insurance. I work for my BC/BS (in a communications dept) and I constantly hear all the trouble people have and it breaks my heart. I was looking at my EOB the other day and saw that my lumpectomy and SNB cost over $35,000. I paid a $50 copay. My chemo is covered at 100%. Whew.
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  • CharB22
    CharB22 Member Posts: 310
    edited January 2012
    HeidiToo - Your BC/BS will have certain criteria that the want met in order for the BRCA tests to be covered. Go to their website and see if they have section on "medical policy" then if they have a search function, search BRCA. PM me if you want and I can look for you (I work for a BC/BS in a communications dept.). It could also be that the doctor's office didn't submit the correct code - a lot of times stuff is actually covered but a tiny typo or numbers getting reversed can mean a denial for something. It gets a little crazy.
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