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  • NativeMainer
    NativeMainer Member Posts: 10,462
    edited February 2011

    There will never be a "right thing" to do until all breast cancer is PREVENTED. 

  • LadyinBama
    LadyinBama Member Posts: 1,132
    edited February 2011

    Granny: I asked my onc how do we know if the chemo worked? He said if I don't die from BC, it worked (he wasn't quite that blunt, but that was the gist of it). Sometimes I think nobody knows, they are all just flying by the seat of their pants.

  • NativeMainer
    NativeMainer Member Posts: 10,462
    edited February 2011

    Actually, that is exactly how cancer treatments are measured.  Success = death by another cause.  One treatment is better if patients live longer, and the longer is usually a few weeks or months.  My father "benefitted" from chemo for stomach cancer because he lived 14 months after diagnosis, 2 months longer than the 12 month live expectancy at diagnosis without treatment.  The way the research is presented publically makes it look a lot better than it often really is.  My dad was one of the 80% of people with stomach cancer that benefitted from chemo, even if chemo wasn't successful.  Dad told me once that if he realized that "benefit" = a couple months longer life he'd have opted to not have chemo. died a couple months sooner but not had 12 months of nausea, hair loss, nerve damage, weakness and other "minor" side effects. 

  • FireKracker
    FireKracker Member Posts: 8,046
    edited February 2011

    this bc sure does suk

  • susgul
    susgul Member Posts: 152
    edited February 2011

    K-ya got that right.  I'm dealing with the se's of Arimidex right now.  Yuk!

  • FireKracker
    FireKracker Member Posts: 8,046
    edited February 2011

    I tried the arimidex.that really suks.

  • PinPDX
    PinPDX Member Posts: 43
    edited February 2011

    I feel like I vent too much about how much I HATE Arimidex, but here goes anyway.  My latest symptom in addition to horrible knee, ankle, finger and foot joint pain and stiffness is skin burning in odd places like the top of one foot.  Has anyone else experienced this??  My onc says to take Motrin and try to "tough it out".  When I read about the recurrences on other threads, I figure I'd better... 

  • FireKracker
    FireKracker Member Posts: 8,046
    edited March 2011

    went to onco today.first time since the rads.i said no to the ALS. and there was no fight there.what a surprise.after i read her the riot act.no chemo onco score 10.did surgery,rads,low grade,low stage,no bc history.im 70 and very active,do exercise,changed my eating habits,taking the right supliments yadda yadda yadda she said you look great.im not gonna try to talk you into anything you dont want.keep up the good work and see me in 3 months.and take DIM,1000 vitD,eat lots of protein,and keep moving.thank you GOD.

  • LadyinBama
    LadyinBama Member Posts: 1,132
    edited March 2011

    You go Granny!

  • Resting
    Resting Member Posts: 215
    edited March 2011

    I  had a lumpectomy and had a total of 23 nodes removed. Did chemo (ACT) for 5 months then rads for 6 weeks. All finished Sept 28th 2010. Feeling much better and energy returning. But still have soreness in my breast and under my arm. Especially notice it when  I wear my under-wire bras. Anyone else notice this? Or maybe I just overuse the arm, but my breast is sore, was told it would take awhile to heal back to normal - if normal is even achievable. Any comments? Anyone heard anything different from their doctors?

    Glad your doing well grannydukes!

  • NativeMainer
    NativeMainer Member Posts: 10,462
    edited March 2011

    The muscle under the radiated breast gets damaged by the rads and can cause soreness.  Ask one of your docs for instructions on post mastectomy stretches and arm/shoulder exercises, or ask for a PT referral.  I have this muscle damage and have to keep up with the exercises to keep the pain and stiffness away.  My rads was amost 4 years ago.  You could also have truncal lymphedema.  This is the same kind of lymphedema that you can get in your arm, but is in the breast and chest/trunk area and is a complication of radiation.  I had a mastectomy to put an end to the truncal LE pain I got from rads. 

  • FireKracker
    FireKracker Member Posts: 8,046
    edited March 2011
    ECT---I was told to never ever wear an underwire bra again.I dont know why but that was what the RO told me.Actually I finished the rads and still have a problem with any bra.I wear a 1/2 slip under my old bra just to be comfortable.im a 34DD.Someone should make a special bra for us after tx.
  • Lee7
    Lee7 Member Posts: 657
    edited March 2011

    grannydukes..

    You might try this, I made a little slit in the fabric on the inside of my bra where one end of the underwire ends. I was able to grab the end of it and pull the wire out. Did the other side and then tried it back on. It was a LOT more comfortable and actually fit better.  So then I went and did every bra I own! 

    I'm about to start rads...wish me luck.

    Lee

  • FireKracker
    FireKracker Member Posts: 8,046
    edited March 2011
    Thanks Lee---I did that.I ruined all my new and old bras BUT the band still catches me where the wire is located under my arm.I had the SN removed so its where the wire is thats rubbing.I think i need costom made bras.When i went to see the RO with that getup on he yelled MADONNA...we laughed.how much longer???????Or is this forever???
  • bcgirl59
    bcgirl59 Member Posts: 8
    edited March 2011

    Hi All,

    Am looking for anyone who was diagnosed with stage 2a IDC, grade 2 (ER+ PR + Her2 -) nodes negative. My sister (49 yrs old) was diagnosed last March. had lumpectomy and node dissection. She did not do chemo and rads. Tried tamox for a few months but stopped due to side effects.

    her blood test and breast ultrasound, bone scan results (Dec 2010) were good. Will see her doc in 2 months.

    If there's anyone with a similar diagnosis and did not go thru chemo and rads, please let me know. Any help is appreciated.

    thanks,

    bcgirl59

  • JustmeAlicia
    JustmeAlicia Member Posts: 1,529
    edited March 2011

    BCgirl, I am similar except mine was grade 2 (most aggressive).  I had a double mastectomy and 16 weeks of chemotherapy.  I did not have radiation.  I also had the sentinal node and a few more removed on BOTH sides.  They were negative.  If tamoxifen doesn't work for her maybe they can try another type of this medication, there are several others.  I believed they are called Aromatase inhibitors.  Wishing your sister the best of luck and to remain cancer free.  (I am soon to be 44)  I will be 1 year on tamoxifen April 1.

  • starbeauty
    starbeauty Member Posts: 327
    edited March 2011

    bcgirl - also - if she isn't going to take any of the usual medical community treatments - you may want to look at the alternative therapy forum info and have her start D3, myomin and/or DIM - as well as other natural treatments.  You may also want to look at the fitness thread and the amount of health benefit that can be gained for BC patients with exercise.

  • bcgirl59
    bcgirl59 Member Posts: 8
    edited March 2011

    To JustmeAlicia and starbeauty,

    Thanks for the additional info. I am new to this forum. I will surely try the other threads.

    Thanks again and good health to you both!

    bcgirl59

  • Resting
    Resting Member Posts: 215
    edited March 2011

    Thx for the input Grannydukes and NativeMainer - I did do the exercises and have great range of motion but am learning you have to keep up the stretching. I quit when I achieved my goal. And I am going to a wireless bra. I was only told not to wear the underwires right after surgery. So I went back to them. Am feeling better since I quit wearing them.

    Nother Question - are you all still pretty tired at times? Whenever I feel great and try to get back to a more active routine it never fails it catches up with me and I pay dearly in fatigue. I don't just sit down and quit but it really curve my activities. Don't really like this at all. When can we expect to feel normal again?

    BC girl59 - Those stats are mine too. But I did chemo and rads. It was not considered an option for me if I wanted the same percentages of relapse as a mastectomy patient. I think she should be taking something, maybe she can get a second opinion.

  • JustmeAlicia
    JustmeAlicia Member Posts: 1,529
    edited March 2011

    ECT ~ I for the most part feel great, but can so relate to that nagging fatigue that kicks in.  I try to remember if I had this pre-cancer.  I did but then it was more depression I think.  I am not allowing myself to be depressed ~ I am trying to go out with friends, lunch dates, date night with hubby, enjoy my kids, exercise, keep my house is order and LIVE life.  I do find by the weekend I am simply exhausted and the times I fall asleep on the couch are my best sleep.  I think physically and emotionally we have been put through the ringer, we have to allow ourselves to be exhausted and try to rest when we feel the need.  I also am approaching 44 and know I don't feel like I'm 28 anymore...........

  • starbeauty
    starbeauty Member Posts: 327
    edited March 2011

    JustMeAlicia - I can so relate to the "falling asleep on the couch"... and I agree - I think it was the "ringer" we just went through.  Jeepers we hit menopause at warp speed.  I never fell asleep on the couch bc (dx at 48).

  • JustmeAlicia
    JustmeAlicia Member Posts: 1,529
    edited March 2011

    oh yes the menopause/chemopause/tamoxifenpause whatever the heck caused it ~ grrrr so not fun.  I could never nap or fall asleep on the couch, sleep eludes me at bedtime usually but I can pass out from exhaustion every now and then now. 

  • starbeauty
    starbeauty Member Posts: 327
    edited March 2011

    JustMeAlicia - are you taking any supplments for the fatigue?  Not sure what to take for that...

  • FireKracker
    FireKracker Member Posts: 8,046
    edited March 2011

    ok listen up girls....it takes a long time for this damn process to be over.we didnt get this thing overnite ya know.according to what im hearin its a big adjustment to your body when your all done.most mornings i wake up sad and i wonder why.then i stop and think hey what am i sad for??????this crap is finally over.i spent 14 mos.feeling shitty.no more.but the body and mind needs to remember that.follow that one.age doesnt matter.only 2 yrs.ago i was 18 on the dance floor.not anymore.enjoy today.God bless.huggggs K

    i still wish someone would invent a comfortable bra and seat belt.

  • JustmeAlicia
    JustmeAlicia Member Posts: 1,529
    edited March 2011

    Starbeauty ~ no, I take D3, biotin (for hair and nails), and my dreaded tamoxifen.

    Grannydukes ~ I wear the Rhonda Shear bra's they sell on HSN or QVC, soft stretchy sports bra type.  I have had reconstruction surgery and have implants so I don't need to hold them up anymore.

  • NativeMainer
    NativeMainer Member Posts: 10,462
    edited March 2011

    I'm 4 years out today, and still struggle with fatigue, muscle damage, anxiety and depression.  When  I was actively working in a chemo clinic the doc used to tell the patients that  they should count the time from the first test to the end of treatment, and expect to be recovering for at least twice that amount of time.  From first test to end of treatment for me will be (arimidex counts as being in treatment) 65 months,  Twice that is almost 11 years, that doesn't start until arimidex is done in a year and a half.  I'll be 64 before I can expect to be fully recovered, using his calculations.  Depressing.  I hope he's wrong. 

  • Resting
    Resting Member Posts: 215
    edited March 2011

     JustmeAlicia, Starbeauty - I loved 44, way back there. Undecided  I'm 58 but still I don't remember being this tired pre-bc. Sometimes I have great energy and feel wonderful but wow I usually pay for it the next several days. Also though I'm not sleeping like I used to. I wake up off and on thru the night. And sometimes, like this morning I wake really early -5:30 this time- and can't go back to sleep. Anyone with that problem? I too nod off on the couch, usually during the evening news and wake thinking WOW - I'm my mother's daughter for sure.

    NativeMainer - I heard something like that too (recovery expectation time)  but what I heard was total from start of Chemo thru rads ( if you had them). Did not hear you double it and count the hormone tx. Now that will depress me. Four years out though - great, good for you!

    Grannydukes - Thx for putting it into perspective, guess I just needed to hear I'm not alone in this, that fatigue is part of the recovery. Should remember what I've been thru and suck it up! Be grateful I'm still here. And I'm with you on the bra - I'm looking for a good one too.

  • FireKracker
    FireKracker Member Posts: 8,046
    edited March 2011
    We are all in this together.This is not a one man fight its a WAR that we are gonna win.
  • susgul
    susgul Member Posts: 152
    edited March 2011
  • yizbieta
    yizbieta Member Posts: 100
    edited March 2011

    I am in- and it could have been me who posted a question on the Stage III and IV site by mistake, I think I realized it and even mentioned that I should not be on there....I was horrified once I realized it. They have so much more to deal with...I felt really bad.

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