FEAR FEAR FEAR GO AWAY !!! help please

Options
genavive
genavive Member Posts: 21
edited June 2014 in Life After Breast Cancer

I just finished the breast cancer 3 day walk in the twin cities with my husband this past weekend. Instead of walking away inspired, I feel worse! I just don't understand the "statistics" that they give us! I understand that the 5 year survival rate for my stage, dx, etc is 82%. What does this mean? I would say that out of every 10 people that I seem to talk to or meet with bc history, 7-8 are now stage 4! When they were origionally diagnosed, they were stage 1 or 2. I used to think that the 5 year survival rate meant that we were alive with NED. I'm starting to feel like metastatic disease is inevitable. Does it just mean that we are alive, however, we will probably be stage 4 by then? I'm really sorry to be a downer but I'm trying to put my life and thoughts back together after my DX, surgeries, chemo and now tamoxifen. I was DX with two tumors in my left breast, both around 1 cm. One was grade 1 and the other grade 2. ER/PR+ and Her 2-. 1 sentinal node positive. Had bilat. mast. w/ chemo. Now what? Do I just hope for the best? What do you all think? Does anyone know what the REAL statistics are for being cured? Am I cured?

· Share on FacebookShare on Twitter

Comments

  • malucho1
    malucho1 Member Posts: 41
    edited August 2007

    Oh dear, I KNOW how you feel. I wish I had some answers. I was diagnosed May 06 and I thought it would be getting easier by now.

    · Share on FacebookShare on Twitter
  • althea
    althea Member Posts: 1,595
    edited August 2007
    The problem with statistics is they apply to large numbers of people, and you are one individual. Stats have their place, for example, in making decisions about treatments and how much your survival rates are enhanced. I would encourage you to focus elsewhere, however, when you contemplate your own future. Instead, look to the success stories when it suits your purposes better. My own mom, for example, got breast cancer nearly 30 years ago. The ONLY treatment she received was a mastectomy. She's still around and will turn 80 soon. I have a friend who's even older than my mom who also survived bc with nothing more than a bilateral mast. And get this -- she was reconstructed with implants and still walks around with the very same implants from decades ago.

    I know it's scary to think of the cancer coming back. It's all a crap shoot IMO. Some people get it, some people don't, some people get it more than once. The only thing we have control over is where we place our focus. Chin up girl! You are awesome to do a 3 day walk!
    · Share on FacebookShare on Twitter
  • JoanofArdmore
    JoanofArdmore Member Posts: 1,012
    edited August 2007
    {{{Genavive}}}, YES you are cured!Today you are cured.Yesterday you were cured! Tomorrow you will be cured.You're a brave and gorgeous young woman with EVERYTHING to live for:Three darling, beautiful children, a lovely-looking husband.Please play and enjoy them all, and be happy.
    You're not supposed to get scared until it's time for your onc check-up! Until it's time for your yearly mammo. This is when we all get scared.This is our fate now.But it DOES get better the further out you get.Oh!And what relief, what celebrations when your report from your onc is good, when you ace the mammo.
    Dear Lovely Genevive, please dont waste yourself on Mr Fear.If it ever is time for fear, God forbid, you'll know it.
    I'm 4 years out.
    Everyone I know here in my town near Philly is..."cured".I didnt pay attention when my onc recited statistics.He never recited them again.Hey, I'm here now and having a ball!And as you know lots of survivors who are stage 4, I know lots of survivors who have...actually FORGOTTEN the whole thing!
    I had IDC, a very invasive little devil of .8 cm which had already invaded my sentinal node although it was caught SO early.
    I had a lumpectomy, and then my onc hit it hard with hard chemo.I thought taxotere was gonna kill me.
    Then, at my interview with my rads onc, I complained about my port, which my onc suggested I keep "for a few months". It bothered me. My rads onc said "Get it out!!You dont need it! It's GONE!!"
    Maybe he had great power of suggestion, maybe that is what someone needs to hear.So I'll say it to you: Dont be afraid!It's GONE!!

    Best best wishes to you, and enjoy the back-to-school days.
    Love, Joan
    · Share on FacebookShare on Twitter
  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2007
    Quote:

    I'm starting to feel like metastatic disease is inevitable


    no, it is not... but the fear, sadly, is...and the statistics, well,
    they will not tell you which side you fall on and are always outdated...

    the fear has given me a lot of anxiety over the last two years since i have finished treatment regardless of the fact that ned and i are still a couple.

    the only things that have really helped me get by are:

    i make the absolute most of every day
    and
    i hope they get a cure before i need it

    treatment has progressed so much in just the two years since i went through it...a cure has got to come our way!

    living with the fear is really the best thing you can do for yourself and your family...but i am certainly not saying

    it is easy.....

    good luck to you....
    · Share on FacebookShare on Twitter
  • Blundin2005
    Blundin2005 Member Posts: 1,167
    edited August 2007
    I second, third, fourth, etc. that!

    Joan puts her thoughts and words together in such a healing way .....

    The fear is part of it and always will be ... it's how we respond to it that will make a difference in our lives ... whatever the cause of the fear may be. I encourage you to feel the earth under your feet in this moment, see the smiles on the faces of your children in this moment, embrace your husband in this moment and the next moments will all take care of themselves in time.

    I want also to say that I've experience similar emotions after the RFTC. Some because of the situation and some because I take aromatase inhibitors that change my mood significantly as does my thyroid med. So I've learned to pay attention to these swinging dances with my grey matter and direct the energy to a positive project or two.

    The Races are inspiring and definately important to us all .... but in the same moment we are vividly reminded why we are there.

    A suggestion might be to plan a lunch with some of your friends after these days ... friends who are uplifting and easy to entertain ... a celebration for no reason at all lunch....and laugh together as much as possible. I'll share some menues if you like.

    Best wishes to you ......

    "Never run faster than your guardian angel can fly"
    · Share on FacebookShare on Twitter
  • linny
    linny Member Posts: 204
    edited August 2007
    Unfortunately, unless we are stage 0, we are not considered "cured". I was stage 2b, no doctor would use the word cured (I am 2 years past diagnosis)and sadly, as we see on these boards, many women go on to have mets, I currently have two friends fighting serious mets. Yes, I am living a normal, busy, full life, but (and it is a huge "but") I am frightened terribly some of the time, and for me, learning to live with this awful fear is the worst part of my breast cancer journey.

    There is no right or wrong way to feel, we are all different, and I just feel that somehow we have to make the best of what has happened to us.

    Linda
    · Share on FacebookShare on Twitter
  • genavive
    genavive Member Posts: 21
    edited August 2007
    I just love you ladies! Survivorship has been hard for me...I've often told my husband that it is harder than my treatment was! Thank you so much for your time and comments. I always find more strength here. WE are worth ALL sixty miles of blister, hips giving out, shin splints, and frozen hamstrings!
    Love, Jen
    · Share on FacebookShare on Twitter
  • VickiTN
    VickiTN Member Posts: 361
    edited August 2007
    I attended a Komen sponsored Survivor Luncheon this past Saturday. There were in excess of 300 bc survivors in attendance. During part of the luncheon, we were all asked to stand and the emcee began a sort of "roll call"..."all those diagnosed less than a year sit down, all those diagnosed less than two years, sit down"....on and on the roll call went....As they got to the 20+ year survivors, I was stunned to see how many were still left standing...it was so inspiring to see!...and, get this...there was one little lady there who said she was a 40 year survivor!! I don't know whether or not any of these long time survivors had mets, but, I can say that nothing seemed to be holding them down - they all seemed to be enjoying life to the fullest! At one point during the program we were all up dancing....it was so very, very inspiring and hopeful for me.

    Genavive - the fear of a reocurrence, etc. will always be there, but, just know that there are many, many long term survivors out there and there's no reason why you can't live to be one of them one day, too!
    hugs,
    vicki
    · Share on FacebookShare on Twitter
  • lvtwoqlt
    lvtwoqlt Member Posts: 6,162
    edited August 2007
    I am less than 6 months out from my surgery, my mother is almost 6 years from surgery. Monday we had our monthly Arm-n-arm meeting and there were 20 or so women from my county that attended. We had a few new faces and as we introduced ourselves I was the newest 'member' even though I had been attending since ADH dx 2 yrs ago. One woman was 26 yrs from first dx and 15 from second dx. Last fall at the Komen luncheon for the NC Foothills we actually had belly-dancers and they gave a brief lesson. We need to have fun and not always live with worry and fear.

    Our Cancer coordinator who organizes the meetings says after the yoga, "you chose how you will live each day, live it to the fullest. Chose to be happy"

    Sheila
    · Share on FacebookShare on Twitter
  • JustOne
    JustOne Member Posts: 226
    edited August 2007

    Hi genavive,

    I’m 7 years post treatment but it never fails…the day before my oncologist appointment, which is tomorrow, I feel a little panicky. I can go throughout the year and tell myself the pains here and there are nothing, my imagination. But until I actually hear those words tomorrow, I will be afraid today.
    This is our life now, I suppose. The fear is something we may never get past until someday when (I’m being optimistic!) there is a cure.

    ~Pam
    · Share on FacebookShare on Twitter
  • LuAnnH
    LuAnnH Member Posts: 8,847
    edited August 2007
    You may find at those walks and other type fund raisers alot of women with mets will attend. I was dx with bc 8 years ago. As the years went on I was living my life with no fear of cancer ever returning. I also got further and further away from anything to do with cancer. It is an ugly word and one you would like to forget as you go on with your life.

    As for statistics, that is a WORD ONLY! Do not buy into the stats. Most of them are outdated and incorrect. It takes years to compile them and by the time they are compiled they become outdated because they are based on at least 5 years prior to them being released. They do not take into account all the newer meds and tx available today. If you want proof of this visit the mets board, you will find many women 3 or 4 years into fighting their illness and nowhere near death, although the stats will tell you that with mets your survival is 2 to 2 1/2 years.

    I am not quoting that stat to scare you but to prove that they are just a persons way to earn a living that went to college to earn a statistics degree. The people compiling them have no knowledge of the world of cancer or of being a cancer patient. Their only knowlege is of how to add up numbers and divide them by the total participatants to come out with a number. It does not take into account, age, health or type of disease any of these patients have.

    Enough of my rambling, the point of my post is....enjoy your life today. Cancer free and enjoying your family. Don't let stats get you down. They must have stats that look bad to help promote funding for research. In the end it benefits us so I don't really fuss much about those terrible stats and how depressing they can be for us.

    LuAnn
    · Share on FacebookShare on Twitter
  • wallan
    wallan Member Posts: 1,275
    edited August 2007
    I am three years and a little out from a stage 3a dx. I was told I had a 60% chance of dying within 10 years. I still fear aches and pains but it is getting easier. Until I have a doctors appt or I hear of another mets dx.

    You just have to go on hoping for the best. This site gives me strength, especially the metsters. They have more hope and optimism and strength then I have in my little finger. They inspire me and it keeps me going.

    I do hear ya'.. it sucks living life waiting for the other foot to fall.
    But, we are here for you. HUGS to you.

    Wendy A
    · Share on FacebookShare on Twitter
  • Diana_B
    Diana_B Member Posts: 287
    edited August 2007
    I think LuAnn is right - the women with mets tend to be still involved with breast cancer-related things, while those who have remained well would be less involved. In other words, I don't think a run like that is representative.

    I know when I was first diagnosed I had a similar scare. We went to a special breast cancer performance of Playback Theatre (a kind of community theatre where they use stories from the audience) and I was freaked out by all the women with mets, until someone pointed out that it would tend to be women with mets who would attend something like that.

    I know how you feel though. Even though the vast majority of us are basically cured, it's still a frightening thought. A feeling like something is lurking in your body that you don't know about.

    I think in my case I felt so blindsided by the diagnosis that a part of me WANTS to remain afraid, so that I'll never experience surprise and shock like that again. It's a fear that if I let go and relax my pessimism and vigilance, something bad will happen to me again, and I'll feel like a fool for having let myself be happy and thinking I had a future. Is it possible that something like this might be going on for you too?

    I don't know if my comments are helpful at all. I bet the stats are closer to 90% now, and I remember the leader of my support group said to one woman "you have as much right as anyone else to be in that group."

    In hope and solidarity,
    Darya
    · Share on FacebookShare on Twitter

Categories