I wish I didn't know now what I didn't know then.

RaiderGirl
RaiderGirl Member Posts: 419
edited May 2015 in IDC (Invasive Ductal Carcinoma)

The subject line is a lyric from an Eagles song. I thought it fit what I wanted to say.  I now know things I wish I didn't.I will share some in no particular order.  Please add yours both negative and positive.

1)  I now know that  the MO did not tell me everything. He told me what he thought I needed to know. I did a happy dance when he handed me the graph with a very positive 5 year survival rate if I followed the treatment plan.   I didn't know that survival and recurrence are two different graphs. He didn't talk about recurrence until I had a threat of it  this past February.

2) I now know that the friends I have to 30+ years did not rally by my side as I thought would be. Friends I know just awhile did the most. How can that be? I want to let that go but it still stings.

3 . No matter how he much he says nothing is my fault , that there is no mine and yours in our marriage. He says he has never paused for a nano-second to think of the expense.  I still feel guilty for the financial hit this Dx had done to our household. He deserves a good vacation, stuff for the garage, whatever...not working the hours that he does and then it goes to disease.  I now know that guilt is inexplicable, painful and not easily erased.

there will be more....................


 

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Comments

  • Tinkerbells
    Tinkerbells Member Posts: 211
    edited April 2015

    1. When I was diagnosed I wish I had investigated neo-adjuvant chemo. I was so scared that I was on auto-pilot and did what was recommended. I know it's semantics but knowing the type of personality I am - i would have wanted to know if the chemo was working rather than presuming.

    2. I would have insisted on a staging scan.


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  • RaiderGirl
    RaiderGirl Member Posts: 419
    edited April 2015

    Tinkerbell

    What is a staging scan?

    Something else I didn't know.

    RG

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  • Tinkerbells
    Tinkerbells Member Posts: 211
    edited April 2015

    Sorry! A scan at diagnosis to assess your staging (lymph nodes, mets, etc). My facility does not do scans unless there is a symptom.

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  • MsPharoah
    MsPharoah Member Posts: 1,034
    edited April 2015

    I didn't know how terrified my mother was when she was diagnosed in 1972 and succumbed in 1979, Dumb Kid!!!

    I didn't know that there is so much cancer in this world that many cancer clinics don't have enough chairs in the waiting room.

    I didn't know how old I would feel during and after my cancer treatment.

    I didn't know how stubborn I am.

    I didn't know how few advances have really been made in BC treatment since my Mother died.

    MsP

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  • SelenaWolf
    SelenaWolf Member Posts: 1,724
    edited April 2015

    I didn't know
    that – for me - the physical hardships of cancer would be easier to cope with-
    and recover from than the emotional turmoil.<?xml:namespace prefix = "o" ns = "urn:schemas-microsoft-com:office:office" />

    I didn't know that all of my relationships would change in some fundamental way; some for the better, some for the worse.

    I didn't know that people could say the most excrutiatingly insensitive things when they don't know what to say.

    I didn't know how that there are many, many people out there who feel that you must have done something wrong because you've developed cancer.

    I didn't know how motivating anger could be.

    I didn't know that having a healthy sense of the ridiculous and a tendency towards snark would be godsends during treatment.

    I didn't know that people think there are "good" cancers and "bad" cancers, and that breast cancer is a "good" cancer. WTF!?!???

    I didn't know how much I would come to hate that damned pink ribbon.

    I didn't know that, unless you- or someone you know has gone through cancer, you don't know squat. So, until that happens to you, you, you really do need to shut the fuck up and stop telling me what I should have done.

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  • JJOntario
    JJOntario Member Posts: 356
    edited April 2015

    I didn know how incredibly angry I could be. I had breast augmentation (and a clear mammo) 10 months prior. How is that for irony?

    I didn't know I had choices because it all happened so fast and they weren't presented to me.

    I didn't know how little I would miss work.

    I didn't know I had the power to say no to those judgemental negative people.

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  • Tinkerbells
    Tinkerbells Member Posts: 211
    edited April 2015

    Selena- YES- sing it, sister

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  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited April 2015

    I didn't know that my BS should not have told me that she thinks I am Stage 1 and that I can be "cured"! All of this before I even had surgery or additional tests...

    I didn't know how much support I could receive from an internet website! You people rock!



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  • Sassa
    Sassa Member Posts: 1,588
    edited April 2015

    I wish I knew that all the results (hormone negative, HER2+) that were listed as "poor prognosis" in the pathology report are based on old historical data and do not reflect modern treatment options and remission rates. It would have saved me lots of sleepless nights if I knew just how "lucky" (as my oncologist put it) I was to have those factors.

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  • RaiderGirl
    RaiderGirl Member Posts: 419
    edited April 2015


    Tinkerbell= same here. no scans.

    Keep= Youre SI is a idiot, Forgive her. Mine told that "we all have cancer".

    MsPharoah = my mom died in 2011 of Pulmonary Fibrosis. I didn't understand her need to talk about it. I would poo-poo her. I didn't want her to think of death. What a fool I was.

    SelenaWolf= Everthing BC pink has vanished from my life. It infuriates me to think of the money raised at the f8cking walks . 80% goes to sponsor the walk itself. I only hope that women are feeling supported and celebrated and not fooled that the cash is going to research.

    JJOntario= Augmentation followed by BC , How cruel life can be. I am so sorry.

     

     

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  • RaiderGirl
    RaiderGirl Member Posts: 419
    edited April 2015


    WARNING-DEEP-INTERSPECTIVE THOUGHT ON GOD

    I didn't know that cancer could erode faith . I always thought that disasters make a person look Up more. I still believe in  a greater something than me. But I now no longer believe  on those traditions I held on to, or the rituals that gave me joy, or even of prayers. I not sure prayers are answered  or  heard at all. I began to believe that events will unfold regardless of my prayers. Maybe prayer helps us deal with stuff from the inside.  I have seen so much unfairness, misery, pain, fear since this BC that I wondered for a moment if    G-d is deaf or absent or cruel.  I miss the blind , childish faith I had before.  I have stopped asking in prayer. I  pray gratitude. I thank Him for my DH, for the skilled surgeon. I thanked Him every-time I was under that machine for the radiation technology that was killing those beasties inside me. Perhaps asking angers Him, that we don't accept His plans and we want our own. Anyway I didn't know faith gets cancer too.

    (PS: I ask those that believe differently to  forgive me if I hurt or offended them. That was not my intention)

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  • RaiderGirl
    RaiderGirl Member Posts: 419
    edited April 2015

    Kayb

    I had a piercing headache. Like a vise. Then again the next day. Then again the next.  I thought Oh No brain mets!

    Then I noticed that I was wearing a new headband. Very pretty but very tight. I threw it away and cured myself.

    Happy
    I hope every ach or pain you have is cured that simply.

     

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  • RaiderGirl
    RaiderGirl Member Posts: 419
    edited April 2015


    We ought to make a list of the things we feel and fear the worse and then we fart and the pain passes.

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  • SugarCakes
    SugarCakes Member Posts: 353
    edited April 2015

    I wish when the radiologist or whomever told me I was good to go back to annual mammograms that "recommend followup mammogram in 6 months". was written in the pathology report.

    I wish I knew having dense breast tissue was more cause for concern

    I wish the BF and I had gone to some cancer support group meetings in the beginning when we thought things were good between us and thought cancer would bring us closer. NOT!

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  • SugarCakes
    SugarCakes Member Posts: 353
    edited April 2015

    I wish I had skipped the May 2014 breast augmentation and spent that $6000 on something else. Then again, I felt my own lump in December and credit having the augmentation for me being more intuned to my breasts. Still... Seems like such a waste

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  • mel147
    mel147 Member Posts: 479
    edited April 2015

    I wish I didn't know that bc can still pop up somewhere in my body even though I had negative nodes

    I wish I didn't know how frustrating it is when drs offices tell me how much money something will cost, only to find out later they were "mistaken" and "oops" doesn't matter, still have to pay it

    I wish I didn't hear the surprise/shock in people's voices when they found out I wasn't having reconstruction

    I wish I didn't feel like this was somehow my fault every time I read something about diet, exercise and cancer

    I wish I didn't have this really weird, awkward, almost embarrassed feeling because I had cancer

    I wish I didn't believe what they told me and wish I had trusted my instincts years ago when I thought something was there, and I wish I had asked for an MRI in 2012 even though I was told my diagnostic mammo and ultrasound were clear


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  • Deblc
    Deblc Member Posts: 479
    edited April 2015

    I wish I didn't know that

    - 25-30% of us will recur and become metastastic, no matter what stage it was diagnosed

    - it's all a crap shoot and no matter how early you find it or how aggressive the treatment, you will never know if you're going to be one of the lucky ones or not

    - my body will never feel or look "normal" again (if anybody says the phrase "new normal" to me, I will hit them)

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  • RaiderGirl
    RaiderGirl Member Posts: 419
    edited April 2015

    SugarCakes,

      How were you to know bout the augmentation ? Women get that done all the time and enjoy the look they wanted. We don't go around thinking gee I wont have breast augment because I may get BC. We lived life like others. We choose and decide things based on what we know. You didnt know about the bc.  But I do empathize. $6,000 is a lot of money.

    Before the bc I bought an insanely expensive, very low cut cocktail dress. I thought the perfect little black dress would be worn for years. I cant wear it unless I am willing to let some scars show. How could I have known

    By the way, if that's your pic, you are beautiful.


     

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  • RaiderGirl
    RaiderGirl Member Posts: 419
    edited April 2015


    Debic

    That statistic about 25% to 30% will recur or become mets was something I did not know until the second bc scare. No MD mentioned it. I only had eyes for the good 5year survival rate charts.

    I cant unknow what I know.

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  • Beachbum1023
    Beachbum1023 Member Posts: 1,417
    edited April 2015

    I wish I didn't know now what I didn't know then:

    Breast Cancer

    Mets

    SIDE-A-F**KS

    Chemo

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  • mostlymom
    mostlymom Member Posts: 466
    edited April 2015

    Oh, how I love Side-A-F**ks - that will become my new word for the day (lifetime)...


    I Wish I didn't know:

    I would miss working - I even dream about working...

    I would miss being able to walk - I never imagined that happening...

    I would miss cooking - I think it's every woman's dream to have someone cooking for them...

    I would think every ache and pain would come with a huge stab of fear that "it's" returned - my daughter is a 15-yr survivor and she says it still happens with her...


    I am so thankful for this site - Even when we have different viewpoints, there's no quibbling about them here - it's my SAFE place...

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  • Jumpship
    Jumpship Member Posts: 305
    edited April 2015

    Raider-where do I go to find the survival and recurrence charts?

    I wish the doc had mentioned how s"x would change.

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  • Tomboy
    Tomboy Member Posts: 3,945
    edited April 2015

    treatment guarantees nothing and I miss my self.

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  • Tomboy
    Tomboy Member Posts: 3,945
    edited April 2015

    beachbum:

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  • SugarCakes
    SugarCakes Member Posts: 353
    edited April 2015

    Thanks Raidergirl :)

    I didn't know the 25-30% statistic! Wish I didn't know it now.

    I wish I didn't know that

    Mammograms detect few breast cancers. Was it 15%? I remember being shocked when I read the stat

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  • Tomboy
    Tomboy Member Posts: 3,945
    edited April 2015

    yea, cakes, most are found by ourselves, or our lovers. And yes, you have a very striking face!

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  • clarrn
    clarrn Member Posts: 557
    edited April 2015

    I know now that I don't get to do the happy dance 5 years after

    I know now that being young with breast cancer is actually a big disadvantage

    I know now that some people really don't mean it when they publically declare on facebook that they will DO ANYTHING to help

    I know now that it is more important to let my 3 year old crawl into bed with me than to teach her good sleeping habits

    I know now how much I love to get outdoors after being stuck facedown for months from chemo

    I know now that chemo doesn't kill stem cells

    I know now that life threatening sepsis feels better to me than AC does

    I know now that my dad had cried only twice in my lifetime before my cancer and now he can't look at me without getting teary

    I know now that it is good to be honest with how much this sucks

    I know now what it is like to forget things and have to admit that you have lost some of your mental capacity and it might not come back



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  • Sunshineinky
    Sunshineinky Member Posts: 461
    edited April 2015
    I wish I had known how my diagnosis would affect my husband and not in a good way. I saw just what a selfish man he really was

    I wish I had known I'd think about it every flippen day

    I wish I had known how much I'd worry about my daughter getting this beast

    I wish I had known how having a huge boob and a little boob would affect my self esteem.

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  • MusicLover
    MusicLover Member Posts: 4,225
    edited April 2015

    This is a wonderful thread, I thought so many of the things you all have thought.  I don't think I have any new ones to add. It just feels like I lost at life, I don't blame myself but that is how it feels. Like someone said she is too happy, let's take her joy away.  I see why many women do not want to share this dx with others.


     

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  • katcar0001
    katcar0001 Member Posts: 621
    edited April 2015

    I wish I had known about neoadjuvant endocrine therapy. I did not know about it until I read something Hopeful posted. I would have liked to know if Tamoxifen is working for me. But then, now I have learned about resistance (wish I didn't know!) so not sure it would have mattered to know that. :-(

    I wish that I didn't know that stage 1 is still a crap shoot. I'd rather bury my head in the sand, move on and be happy. I am trying but I do find I obsess a lot. I hope it gets better.

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