Remission or "cured"?

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  • FireKracker
    FireKracker Member Posts: 8,046
    edited September 2010

    hello my sistas

    lately i see soooo much arguments on these different threads.We are all uptight,sensitive,angry etc.PLEASE PLEASE can we just get along.everyone has their own opinion.everyone has their own story.we are all suffering in our own way...it looks like we are getting away from the reason we are all here in the first place and that is for SUPPORT.

    right,wrong or indifferent we are all in this together...can we have a group hugggggggggggggg.

    God bless my sistas.

    K

  • IsThisForReal
    IsThisForReal Member Posts: 384
    edited September 2010

    *big grouphug*

  • FireKracker
    FireKracker Member Posts: 8,046
    edited September 2010

    is this for real?????i FEEL THE GROUP HUGGGGGGGGGGGGGGG

  • TiffanyF4
    TiffanyF4 Member Posts: 171
    edited September 2010
    Girls Girls!!! Lets put our big girl panties on and realize that everyone has a right to their opinion and move on!  Bottom line is we ALL have had cancer in our bodies! Some don't have cancer in their bodies right this very moment and may never have it again, some have cancer in their bodies and don't know it yet, some have cancer in their bodies and are fighting with everything they have to live!  Lets be respectful especially to those currently in the fight of their life and be supportive to each other!Innocent
  • MJLToday
    MJLToday Member Posts: 2,068
    edited September 2010

    One oncologist I consulted with told me there is never a cure for invasive cancer (above stage 0).  The only time someone can be called "cured" is if they die at an advanced age, of a skiing accident, while NED :lol:

    But I agree with PP that say that there is no point in obsessing about recurrence.  It's just one more challenge in life.  If you are eligible, take your tamoxifen or Arimidex or whatever.  Drink green tea and good food and exercise if it makes you feel better.  Other than that, you deal with bad things when they happen. :ohm:

  • MJLToday
    MJLToday Member Posts: 2,068
    edited September 2010

    BTW this oncologist made this statement to me as a young stage 2 patient.  I should have said that he said, a person if never considered "cured."  BC is a very sneaky disease. 

  • gentianviolet
    gentianviolet Member Posts: 316
    edited September 2010

    I have been reading this web site for over a year now and never have submitted anything.  I find I have felt greater courage and strength just from reading these valuable postings.

    A question was posed about having a pet theory of how each one of us got BC.  My personal one is this.  In April of 2009 I was operated on for a burst appendix.  I entered the hospital on a Friday night with severe stomach pains and they never operated until Monday night, by that time it had burst.  I spent 9 days in the hospital with all kinds of antibiotics, no food except ice chips, and various injections to keep my blood thin.  I left the hospital with a case of the shingles (which made the incision for the exploratory surgery a piece of cake) and finally recovered from the shingles about three weeks later.  Almost two months to the day later I began to lose massive amounts of hair.  It was tellogen effulvium (a result of the severe stress my body had gone through) and of course that added more mental stress to my life.  And almost two months later my hair just stopped falling out, a typical reaction of this condition.  Four days later I found the lump in my right breast and all of you know the road taken from that point on.  So my theory is that my immune system was totally out of whack and had been since the onset of the appendix misdiagnosis at the hospital.  I now fervently hope that my immune system is up and running and will prevent any little floating cancers from growing.  Do others out there feel that the immune system is one key to breast cancer?

    Thank all of you for being there for me, for understanding my thoughts, fears, and hopes!  I return to this site often when I need my fix of understanding.

  • riley702
    riley702 Member Posts: 1,600
    edited September 2010

    Lowrider and karen, thank you for your thoughtful posts. I am upset by what seem like personal attacks, in bold, no less. And thanks for the group hug, Bonnie. I'm totally swiping that .gif!

  • Lilah
    Lilah Member Posts: 4,898
    edited September 2010

    Lost Creek -- LOL on the dog named NED :)

  • debbie6122
    debbie6122 Member Posts: 5,161
    edited September 2010

    Mm- I just had to say that YOU were the one that sounded angy and you came back with arguable remarks to lowrider- She comes here to help other woman because she cares stage 1V woman are not banned from posting on other sites just like we are not banned from posting on there site, they never told any one they cant post there, just simply to be respectful- And she made that clear on her other posts, You and mariekelly are very disrespectful!!!

    Lowrider- I hope you continue to posts on ALL the sites, i look forward to reading what you have to say, you always make sense and take the time to look up stuff for us and you are really apprecitated- I gotta say though i about peed my pants laughing when i read your comment about being madder than a wet hen in a coup full of roosters im going to be using that one from now on (((((hugs))))))))

  • squidwitch42
    squidwitch42 Member Posts: 2,228
    edited September 2010

    Hi Silversmith,

    I have a pet peeve about newcomers getting their posts lost in the fray.  A warm welcome, and it seems you have been a member for a year now, longer than me.  My cancer membership has been one year however. The immune system theory has a lot of merit.  I too had a bout of shingles after a stressful surgery, and yours sounded pretty bad.  Wish they had been more aggressive, really.  I'm shaking my head. I work in this area (immune system disorders) and there are cancers that pop up when immunity is low, and when there is competition in the lymph nodes amongst viruses.  I'm wondering which threads really go into this?  I bet we can get some help with this :)

    welcome.

  • calamtykel
    calamtykel Member Posts: 1,187
    edited September 2010

    If you look at lifemath.net (or is it lifemath.com?) you will see that the stats actually go UP each year for recurrance.  I spoke with my oncologist about this on Monday because I too, had the same questions.  Is all this chemo for nothing?  Just to delay the inevitable?

    She was truthful with me - she said that she could not guarantee that it would never recurr, but that based on my tumor size, type, recurrence risk percentage (I guess the agressiveness?  It was some percentage number that was an 11%) and therapies, that I was low risk. But not NO risk because as it's been stated here, there is just no way for anyone to know when that switch will get flipped again.

    I told her I didn't understand how cells can stay around for 15....17...or even 20 years.  I thought our bodies constantly regenerated cells.  She said it had to do with the DNA -I wasn't quite clear on that.

    Meanwhile, I just want to live my life.  I don't expect to live forever.  I'm 41 and have gone through hell with this disease.  Once this is done, I want to finish raising my children, see them off and the rest is gravy.  I know that sounds weird, but right now , right  NOW at this point in my BC journey, I'd be grateful for 15 years.  No I don't want to  die of cancer...nor endure treatment, but honestly, none of us have a guarantee on anything at all.

    I took my son to a wonderful young endocrinologist.  He had seven children - a young man in his early 40's.  A month later I received a letter from the hospital that he had been killed in a car accident.  Healthy young man -very much alive and living his life.

    Life ITSELF is a terminal disease; there is no cure for the end that inevitably comes to all of us, BC or not.  I think that's the way you have to look at it..........

  • lago
    lago Member Posts: 17,186
    edited September 2010

    Someone said something about me living 40 more years. Yikes I hope not. I can't really afford to live till 89! Granted I do have a grandfather that lived till 87 and the other 95! I used to kid that I don't want to live too long because I can't afford it… granted a breast cancer diagnosis wasn't what I had in mind ;-)

    No cure for diabetes either. It can be reversed but those folks still have to test every day and modify their diets. My dad has had a pace maker for his heart condition for 8 years. He's 78 and doing well. Lots of incurable but livable diseases out there.

  • don23
    don23 Member Posts: 512
    edited September 2010
    Mindy - thanks for your post on the healthy dose of denial and that it is OK. You stated that it's OK to deny things that you cannot change. I like that thought. We can do all we have to do to keep the beast away but it could still come back. There is no way to know so we do the best we can! I for one like to say I'm dancing with NED. I personally don't think I'm "cured" but am cancer free for now and still trying to get used to the "new" normal.
  • Halah
    Halah Member Posts: 352
    edited September 2010

    don23 - you are quite welcome. I hope I am dancing with NED as well but won't even know my official dx until tomorrow when I see my oncologist for the first time since surgery.

    Titan - Yes cancer is like playing the lottery. You really don't know if you have the "winning" numbers until there is a draw. So why worry about it? NED is NED, cancer is cancer.

    BarbaraA - I hope your sleep situation improves and no more nightmares! I hate how I feel when I don't get enough sleep. It's bad enough that the dreams are about cancer. Glad to hear you are dancing with NED!

  • beckward
    beckward Member Posts: 59
    edited September 2010

    Silversmith,

    In answer to your immune system question....YES, there has to be a connection.  There is another forum that deals with this, and included women who have autoimmune diseases and then BC.  I was DX with MS in 2006, BC in 2008.  Usually the AI thing comes first.  I, personally think that the drugs used for the AI disease open the door for the BC that has been waiting for an invite.

    Do you think its any wonder that there's been an increase in BC AND autoimmune diseases? Hmmm.  Well, welcome and be aware that now that you've started posting, it's a little addictive!

    Beth 

  • Lowrider54
    Lowrider54 Member Posts: 2,721
    edited September 2010

    Hi silversmith...oddly, you have hit on one of my interests...how.  I believe in the 'trigger' theory of what causes the cells to get whacked out.  In my case, I believe it was repeated blunt force trama - in yours, a weakened immune system, in others what could it be? 

    When I find the funding group that is behind the 'off-on' gene research, that is where my money is going to go!  What causes a cell to get whacked out and this off and on gene identification is the most promising thing I have seen yet. 

    Thanks for sharing!

    Hugs...LowRider

  • gentianviolet
    gentianviolet Member Posts: 316
    edited September 2010

    Squidwitch, Beckman, and Low rider........thank you for your welcome.  I am no spring chicken.  I turned 70 in June and always was very active (belly dancing and tennis were my passions) until I was started on Arimidex. (I did not do chemo because of my age and the fact that my oncotype score was an 11.)   Everything was okay for the first three months but the following three months I developed increasing hip and knee pain as well as tendonitis in my right ankle......oh, well, that put a stop to my tennis.  At six months I went off the Arimidex and was put on Aromasin.  I only lasted two weeks; it felt like someone was holding a blow toarch to the bottoms of my feet.  That put a dent in the belly dancing enjoyment.  However I am now on Tamoxifen and although I still have a bit of hip/knee pain, I , at least, have less days that I limp.  I dearly miss my old life when nothing hurt and I felt safe.  You would think at my age that I would get over feeling this loss and be grateful that this happened at this time in my life (children are adults), but many days I just want to again be naive about breast cancer.

  • jillyG
    jillyG Member Posts: 401
    edited September 2010

    You know what, if a recurrence is coming for me, I would rather think I was cured and live for 10 years feeling wonderful and care-free (still getting regular testing and exams).  Right now, I am terrified, I am 2 years out and I am TERRIFIED!!!!!!!!  Does that make it any better???  Is it better to be terrified and always on the look out for a new symptom?  We can't prevent a recurrence, we can do our best with diet and exercise, but if it's coming, it's coming, so what would the harm be in thinking your cured? 

    Would it be worse to get mets after thinking you are cured for 10 years, or would it worse to get mets after being terrified of it for 10 years.  Either way, it's devastating.  I'd rather have the 10 years of not being afraid.  I have 2 kids under 7 and I can't even type this without crying.  I NEED TO BELIEVE I AM CURED, WHAT IS THE HARM IN THAT?  The stats are with me, most people survive breast cancer.  Some people are cured, and when I look into my kids eyes, I have to believe I am one of them.  We all want to live long enough for a cure, for EVERYONE.  One person dying of this is too many. 

  • Laurie_R
    Laurie_R Member Posts: 262
    edited September 2010

    I don't think there is anything wrong with thinking you're cured.  But I belive we have to be more dilagent about the testings we are suppose to have and not think " hey, I feel great, no aches or pains. I don't need to get this or that done", like we might have done before BC. 

  • Anne068
    Anne068 Member Posts: 176
    edited September 2010

    I think everyone has a right to their opinion. Both Lowrider and MarieKelly.  Neither viewpoint is less valuable than the other. Hey, we're all adults here. Take what you like and leave the rest.

    Everyone is different. I understand that there is no cure. I also know I refuse to live my life in fear. If anything, BC has made me appreciate life so much MORE! I have LESS stress. And I wonder now why I wasted so much time stressing about things... that really didn't matter.  It is what it is folks. You have to take life on life's terms. I am more educated now. I am getting treatment. (had the BMX, currently on Chemo TCx4, to be followed with Tamoxafin for 5 years). I am eating right, exercising, and enjoying the hell out of my life.

     I don't know if my cancer is cured, or if it will come back. I have no control over that. But I do know that I am going to enjoy every second of life God grants me, and be able to look back with no regrets.  I'm not saving anything for a "special day" anymore. Every day is special. And I am extremely grateful to be here to enjoy this time with my children. I refuse to think of "what if'. If it happens, I'll deal with it. But it hasn't yet, and I'm not gonna sweat it.

    I will follow the regiman, get my checkups, and live my life.

     Peace to everyone! ((Big Hugs))

  • Lilah
    Lilah Member Posts: 4,898
    edited September 2010

    I think you should live as you choose Jilly.  I know how you feel and it's hard to live in a constant state of anxiety.  It sort of is necessary to go forward with optimism, however you can get that.

  • Lowrider54
    Lowrider54 Member Posts: 2,721
    edited September 2010

    Jilly...don't be terrified - live.  If you have a low risk of recurrence and the docs believe they got it - believe it and don't stress over it anymore.  The mind is very powerful - the glass is always 1/2 full - hope springs eternal (corny, I know) but never dwell on the beastly thing that invaded your life - it has stolen enough of your time - other than these past few days in my ranting mode, I really try to give it as little attention as possible - it gets quite enough once a month and oh boy, every 6 months at scan time - the rest, I spend marveling in how well my garden did this year and all the wonderful friends and family I treasure. 

    Hugs to you...LowRider

  • don23
    don23 Member Posts: 512
    edited September 2010
    Anne068 - I'm with you! If I want to do something I am going to do it and not save anything for a "special day". I definitely look at life in a whole different prospective since BC entered my life. I am finally done with all my surgeries (BMX, implant exchange, nip/aerola reconstruction) and feel I can move on now. I don't sweat the small stuff anymore - it's not worth it. None of us know how long we will be here so you have to enjoy the life you have now!
  • Lowrider54
    Lowrider54 Member Posts: 2,721
    edited September 2010

    silversmith...I have found that eliminating gluten as much as possible from one's diet can relieve some of that joint pain...there is much info about it on the Arimidex - Coping with SE's thread.  It works the same for any of the hormonal drugs of which Tamoxifin is one.  And I just tried the gluten free Bisquick - not bad!

  • gentianviolet
    gentianviolet Member Posts: 316
    edited September 2010

    The actual topic was remission or cured and although I was off topic in the last two posts I will add my thoughts on this issue.  My temporary oncologist said, "Now that we took it out, you no longer have cancer.  You must believe you HAD cancer and now you don't."  I left the Clinic and went back to my hometown believing this. My local oncologist was more realistic and didn't encourage me to think I was cured.  Then slowly I began to understand what it really meant to have cancer and I was deeply saddened by this education.  I do believe the mind is a strangely powerful instrument and I do want it to propel me towards a future without a recurrence.  Yet there have been many times in my life that I strive so hard for something that the opposite seems to occur.  And other times that I just barely maintained a focus and had the most positive results.  So now what??  Do I just barely maintain a focus and hope that it works or do I put all my energy into striving and just hope it doesn't come back to bite me in the butt?  You wouldn't think this was such a struggle yet it is on my mind continuously.  I guess basically I believe that I am not cancer free but that my immune system is working hard to keep it all in check.

  • debbie6122
    debbie6122 Member Posts: 5,161
    edited September 2010

    Silversmith- Thats the sad part of it, we never know if it will return or not, for myself, i just try not to think about it and try to eat healthier now, excercise and hope and pray for the best, i will always be looking over my shoulder but im trying to stay positive for now, my advice to you would be to try to do other things to keep your mind busy and focus on the good and not the bad or what ifs, ( i know its easier said than done) Just keep thiniking and believing you are cancer free!!!

    Gentle hugs

    Debbie

  • debbie6122
    debbie6122 Member Posts: 5,161
    edited September 2010

    Mindy- I watched the video of robert coxen today on you tube, it is so beautiful and relaxing it made me feel very spiritual and up lifting- Love it  Thanks

  • JanetinVirginia
    JanetinVirginia Member Posts: 1,516
    edited September 2010

    In my opinion, the more OUTRAGE about this disease the better.  I think we should all write letters to the editors of major newspapers during "breast cancer month" and try to get more of the truth out there about detection and also finding a CURE.  I'm just got home from hospital from mastectomy yesterday and flipped on news last night.  The first thing I saw was an ABC news segment on a Swedish (I think) study saying that if mammograms began at age 40 many more lives would be saved (or at least extended).  That's one small step in the right direction - but not nearly enough.   What mainstream press never reports is that mammograms miss cancer and that the standard of care ought to be detection through routine ultrasounds & MRIs - starting with women as early as 20 years old!  I had a clear mammogram in March.  Had I known that you can't rely on a mammogram alone, I would have happily paid for routine ultrasound or MRI myself all these years even if insurance didn't.  Then on top of everything else,  they add that 'tests are expensive,' cost/benefit, blah blah blah.  WHAT???   How expensive is lifelong cancer treatment for 200,000 women newly diagnosed EVERY year compared to the cost of an ultrasound or MRI?   Pink ribbons and running races are fine to raise money but I think they also lure the public into believing those women are 'cured'  and 'have a mammogram and everything will be fine.'   It's outrageous and inexcusable in my opinion.  And where is the in-depth reporting on research for the off switch or connecting the dots for a breakthrough cure?

  • KMQW2010
    KMQW2010 Member Posts: 8
    edited September 2010

    What was your first cancer, stage, etc.?  What was your treatment, chemo? radiation?  meds for five years?  You got another cancer 10 years later?  I'm just gathering research for my next treatment if any.  Have issues with five years of meds.  Thank you, and best of luck.

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