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  • hugz4u
    hugz4u Member Posts: 2,781
    edited May 2013

    As soon as my records come in I file. However anything else I don't. I think I am trying to put it out of sight so I am not reminded.

    For all those that don't file properly... just start fresh over.  You should be able to with written permission get all your medical documents from your cancer center from day one till now. They will be in date order. Then get your other docs records and insert them into the corresponding date.  I did this once when fell behind. Scrap the old stuff. It worked great. I learned my lesson and now keep up with it.

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  • carol57
    carol57 Member Posts: 3,567
    edited May 2013

    Wow, hugz, you are a paragon of organizational virtue!  Somehow, I think you should get some kick-butt LE care credits for that!

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  • Outfield
    Outfield Member Posts: 1,109
    edited May 2013

    I am going to hire a 4th year med student or a resident to organize my records.  I simply can't go through them: the anxiety it provokes is unbearable.  What Hugz describes is very sensible, but I just can't do it.

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  • hugz4u
    hugz4u Member Posts: 2,781
    edited May 2013

    Outfield, That is such a great idea. I got to say,just because I am a saint with my BC files doesn't really get me brownies points In the end. All the other files are willy nilly and I still have to file taxes for last year. :p

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  • Outfield
    Outfield Member Posts: 1,109
    edited May 2013

    I have wonderful news!  My trotting across the parking lot with the CD of my old scans was very useful.  My nodules haven't changed since 2010, so I am absolved all further follow-up.

    Still, how annoying that healthcare is so fragmented (at least mine in particular) that I had to do that.  

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  • kira66715
    kira66715 Member Posts: 4,681
    edited May 2013

    Outfield, YEAH!!!!!!!!!!

    Thank goodness you were the courier.

    Healthcare is totally fragmented.

    Boy, am I relieved.

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  • proudtospin
    proudtospin Member Posts: 5,972
    edited May 2013

    yeah outfied and good that your trotting around ended in an all clear!

    Raise the flag

    fragmented healthcare?  yikes I had to change my PCD last year due to insurance and still trying to get her to understand me....yes, I have lumpie boobs and no that is not a cancerous lump but scar tissue per the onco!

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  • purple32
    purple32 Member Posts: 3,188
    edited May 2013

    YAAAAAAY , Outfield  ...so worth the trot.

    CONGRATS!

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  • carol57
    carol57 Member Posts: 3,567
    edited June 2013

    Hey, I'm late reading this but I'll add my YIPPEE!  I'm so happy for you, Outfield.  A great way to start a weekend, no?

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  • Binney4
    Binney4 Member Posts: 8,609
    edited June 2013

    Outfield, so relieved! Replacing the "Happy Dance" with the latest: the "CD Trot"!

    (Well, and chocolate of courseWink)
    Binney

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  • cinnamonsmiles
    cinnamonsmiles Member Posts: 779
    edited June 2013

    Kira, I am so glad that you caught things early! I hope you are recovering well now. I have a question for you. I had a total hysterectomy with ovaries and tubes removed in 2011. What about your surgery makes you at risk for lower extremity LE? Is it just the surgery itself or did you have additional lymph nodes removed? No one every mentioned the possibility of LE when I had my surgery.

    Thanks and I hope you are on the mend!!

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  • kira66715
    kira66715 Member Posts: 4,681
    edited June 2013

    Cinnamon, thankfully, no nodes removed, just that I seem to get LE at the drop of a hat--there are many articles that indicate that women who get LE may have a genetic predisposition, and I'm sure I do.

    My LE therapist has been massaging my legs for the last year, as I tend to get puffy ankles--the left, where I have more varicose veins is worse--and I wear low grade compression socks, especially at work. She is convinced that I won't have issues, other than my minor "primary LE" issues that we've noticed for a while.

    Since the surgery was robotic, and there was minimal trauma, and things seem to be going well, I just hope for the best. And am being very compliant with the no lifting prohibition.

    The main issue is fatigue, which seems to vary by the day. But overall is getting better, and that I can't pick up my scrumptious 15 lb granddaughter.

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  • purple32
    purple32 Member Posts: 3,188
    edited June 2013

    No one every mentioned the possibility of LE when I had my surgery.

    Cinnamon

    How familiar does this sound ?!  (Grrrr)

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  • kira66715
    kira66715 Member Posts: 4,681
    edited June 2013

    As the news out of ASCO is to go with 10 years of tamoxifen, the fact that the drug causes deaths due to endometrial cancer is considered a reasonable risk. When I think of drug side effects, death from a second cancer seems a bit extreme to me.

    http://www.cancernetwork.com/conference-reports/asco2013/breast-cancer/content/article/10165/2145230

    The most serious side effects of long-term tamoxifen were an increase in endometrial cancer risk: 102 women in the 10-year arm were diagnosed with endometrial cancer compared with 45 women in the 5-year arm, and 37 and 20 women died of their endometrial cancer, respectively. While these results were statistically significant, “10 years of tamoxifen prevents 30 times as many breast cancer deaths as it causes endometrial cancer deaths,” said Gray. “The benefits greatly outweigh the risks.”

    The creator of tamoxifen: Craig Johnson, calls the endometrial cancer risk the "ugly side" of the drug--he discovered it in the 1970's as a failed contraceptive. He also discusses tamoxifen resistance.

    http://www2.georgetown.edu/gumc/lombardi/magazine/89327.html

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  • proudtospin
    proudtospin Member Posts: 5,972
    edited June 2013

    Kira, I do not understand why the side effect of Tamoxifin is not brought up to women.  I know at one point when I was complaining to the onco about what I thought was the side effect of my AL, onco said, side effect of Tam was way worse and basically....suck it up!  Actually, this was the head of the cancer center as my onco was out early on a maternity leave and her boss was more than a bit over whelmed and crankie~~

    But glad I did not do Tam.  Think women should be more informed and given the option of the other.  I understand you need to be in meno pause for the ALs but still, it should be an infomed decision

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  • kira66715
    kira66715 Member Posts: 4,681
    edited June 2013

    Proudtospin,

    Unfortunately, I got informed when I got a serious side effect, before that, I was just told a "low" risk.

    The other thing I discovered was that on tamoxifen, it was impossible to tell when I was menopausal. I started the drug at 50 and as it stimulates your ovaries, I always had low FSH and premenopausal estradiol levels, but my pathology showed an "inactive"=menopausal endometrium.

    I do think women don't get the full information and again as there are high risk and low risk women, they should know.

    Personally, I feel like the oncologists who prescribe the drug need to really know all the details of it, and I know mine didn't.

    This new rush to extend tamoxifen use to 10 years, despite documented resistance and the concept of "acceptible" tamoxifen induced deaths is kind of mind boggling. To me.

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  • proudtospin
    proudtospin Member Posts: 5,972
    edited June 2013

    Kira, I agree the rush to stay on the drug for 10 years is sort of scary really

    guess the fact that I ws definitely in menopause (I was 59) made the choice of meds so much more clear.  But it still creeps me out when I meet someone who is also meno and still placed on tamoxfin

    I hope all works out for you, lordie as a health professional, you likely know much more to start than me, good luck

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  • kira1234
    kira1234 Member Posts: 3,091
    edited June 2013

    This entire topic is of interest to me. I'm 60 so haven't had a period in years, but I wasn't able to take the AL's so I'm on tamoxifin! I know my Onc. mentioned it, but said the chances are so small so not to worry!

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  • purple32
    purple32 Member Posts: 3,188
    edited June 2013

    Kira, I do not understand why the side effect of Tamoxifin is not brought up to women.


    This I  actually *was* informed of by my MO  as I refused the ALS  ( I am post meno) due to my bad bones. She told me all about tamox and the possible SEs so  I refused both.

    Six mos later, my BS from MGH asked me why not Evista. I told her ( she was at Dana Farber and now MGH= 25 yrs) Evista is not used after the fact and she said, " What the difference?  They don t know any of it for sure anyway."
    So comforting , I am taking nothing.Yell

    Very much wanted the D.I.M. (Look into this ?) but I have  agoiter and DIM is goiterous, and also my thyroid is now getting hyper as well....yadyadyadyda...........

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  • kira1234
    kira1234 Member Posts: 3,091
    edited June 2013

    I was on DIM for at least 6 months. During that time my breasts became much denser on my mamo than they had been while on the AL's. I sure don't want to face cancer again of any kind. It is just so frustrating. Last mamo was with tamoxifen the denseness is gone again.

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  • kira66715
    kira66715 Member Posts: 4,681
    edited June 2013

    Well, Gayle Sulik, who wrote pink ribbon blues and is a medical sociologist, has just published in Psychology Today about the down side of tamoxifen

    http://www.psychologytoday.com/blog/pink-ribbon-blues/201306/chemoprevention-is-no-magic-bullet

    Now maybe women will be more accurately informed

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