What is up with all this Guilt???
I want to THANK YOU for this forum!! Had lumpectomy 2 days ago - DCIS. This forum is the only place I feel like I can even say anything out loud - the only place where anyone remotely gets it. I don't understand what's wrong with me?!!!!! I am surrounded and blessed by the most wonderful family and friends but paralyzed, unable to reach out. Would rather be home alone post surgery than surrounded by loved ones. I get the, "oh it's just pre-cancer, no big deal...so and so had x" -- to the "pity look of, you poor thing"
I spent much of my 20's voluntaring for breast cancer awareness, honoring survivors, fundraising, promoting education.. No breast cancer in my family - volunteered because it was a worthy cause and made a difference. I never dreamed this would hit me. The idea of wearing a pink ribbon now, makes me sad. What the hell? I have yet to call one woman I served with on a national breast cancer board to tell them what's going on with me.
I am a few days post surgery and am sitting in bed sobbing. Unable to pick up the phone to call anyone. To call the countless women I know who have been through so much more than me. I feel so much guilt. Guilt that i am this upset over a lumpectomy. Guilt over removing the dressing for the first time, looking in the mirror and wanting to throw up and sob with tears. Guilt for not being thankful that this is simply DCIS; no lymph; low grade - absolute best case scenario. Guilt that I should not be overjoyed that a simple removal is all I may need - conflicted over doing radiation (dealing with that decision in coming weeks). Guilt that I can't seem to celebrate this as a good thing; as a blessing; as a wake call to change my life. Guilt that I am unable to express these things to my loving family and amazing friends. Guilt that I have shallow fears of "how will this look 2 months from now" "how will this look 6 months from now" - how will I even go on a date or meet someone new? Guilt that I have worried my family and my friends when in one breath you're told its a "non-invasive breast cancer' to the next breath of it's not really cancer - it's not that serious. Guilt that this small journey for me is nothing compared to what so many with breast cancer and others with cancer and illness have gone through and I am having a complete emotional break down over something far less serious. Guilt that I can't seem to pull it together. Guilt that it's all about me - I am going through this and I don't even have children - I can't imagine what that fear must be like going through this as a mom.
So thank you. Thank you to all of you who have the courage to post messages and to support each other. Hopefully the next few weeks will get better.
Comments
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(((((Good Times))))) You are entitled to every single thing you are feeling. You should not feel guilty about feeling what you are feeling. Hearing those words ... "You have cancer" is shattering, no matter how much work you've done to fight breast cancer (which is admirable, thank you!). There is no such thing as "just DCIS" when it's you that you're talking about. DCIS is truly cancer that has not had a chance to spread. We're always told that we're lucky to have caught it early, which is true, but it's also true that we are definitely NOT lucky to have been saddled with this disease, no matter what stage they found it in. With your lumpectomy, you have to deal with a change in your appearance, the possibility of rads, more frequent screening ... all very real things that don't discriminate according to stage.
Reach out to your family and friends. You shouldn't try to deal with all of this alone. It is a lot to deal with! I am positive that your family and, especially, your friends that are survivors will be an invaluable source of comfort and support to you. And, of course, all of us are here for you, too.
Be easy on yourself ...
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CANCER IS CANCER...no matter how you dice and slice it.when you hear the word you feel like someone hit you over the head with a hammer.I felt guilt too.my dear friend is fighting cancer for 26 yrs.and im crying to her about my first diag.of insitu.i felt so guilty talking to her.she had both breasts removed............so i turned it around...well a little bit and told her you are my hero.i run and hide away from people.i missed a lot of fun parties when i was first diagnosed and i still do because i dont want people telling me im gonna be fine.the guilt is part of the process.hang in there.im not gonna tell you it gets better but it does come and go.
hugggggggs
K
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Ladies - thank you!!
You've walked me back off that ledge - you have no idea!! (well, I think maybe you do)
A good cry (flat out balling) and finally venting was really needed - like you have said above, sometimes it is easier to share with those we don't know so well. Funny - what each of you have said is so beyond true! I haven't really come to terms with all this yet and I sure as hell don't feel so "lucky" right now.
On the outside, I am that joking personality - I texted my friends today: "I'm doing good! Just resting -- I feel like Hugh Hefner - laying around in pajama's, obssessing about breasts" -- ok, a little funny?!
But on the inside, just absolutely torn up. Thank you for allowing me to vent and giving me a good dose of what this all means. Hopefully when some time passes, i will be able to return this kindness to someone else who's in the middle of her(his) complete melt-down. (I don't kid myself, I'm sure there are many many more for me)
I must say -- I never "got it" before... I thought I did, but didn't. Volunteering, having a mom with stage IV cancer (not breast), a best friend who died 3 years ago from cancer at 33, despite dealing with cancer diagnosis and medical experts etc. through my profession.... I truly never got it. I thought I did. Yeah, not even close. This has been more of a blow than I ever imagined, ever understood.
So thank you ladies - You just helped a 35 year old get a grip!!! Wise words from some very wise women!
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Good Times,
Hang in there. You are going through some of the worst times now. It will get better. Your description of what you felt is pretty much what I felt too when I was diagnosed with DCIS in 2007. I would only talk to other DCIS patients at first.
Even worse, after my lumpectomy they told me that I had positive margins and would need a mastectomy, which was a real blow.
As it turned out, once I had a world renowned DCIS expert and patholgoist (that anyone can consult with) review my pathology, he disagreed and said I did get good margins and not only did I not need further surgery, but I could also omit radiation and tamoxifen.
Since then I have "mentored" many other DCIS patients and they have helped me as much as I have helped them.
Feel free to send me a PM if you need to vent or if you have questions, or check out my website if you are interested in the specifics of my journey:
https://sites.google.com/site/dciswithoutrads/home
Most importantly take your time adjusting to all these new emotions and your new normal. With DCIS the good news is that you have plenty of time to decide what's next for you.
Peace and good health,
Sandie
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First of all let me say to Madalyn "kick in the gut to anybody...no matter where your at".....where your at!!!!!.........my dear sweet liberal bc sister you have been living in Dallas to long........and I did notice the "...".......you miss me don't you????????....
.......and don't you go and edit your post either.......to cute......plus it is wisdom from an "old" bc sister to a new member..........GoodTimes it doesn't matter how many walks you have been in.....doesn't matter how many times you have been there for someone else........doesn't matter if is your doctors that deal with breast cancer everyday......if you haven't had a dx you don't really know what it is like hear those words.........and believe me you will grow to hate pink......in fact there is a thread somewhere on this board about that "pink" junk....don't remember where it is at...(haha)...couple of years ago there was a "BreastCancer Barbie" that came out in October to help raise money for Komen........anyway she had nice big boobs......they didn't come off.......she didn't have scars under in her armpits........and I am not sure but I think she was still getting it on with Ken.....(but that is another thread).......anyway you hang in there..........and you have found the right place.....shokk
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I can relate to all of that. My biggest "guilt" thing was when my Mom brought me a quilt... it was a hand-made "prayer quilt" made by the ladies at her church... it's something they do for people who are REALLY sick. I felt sick to my stomach with guilt that they went to all that trouble for me when I don't have life-threatening cancer... I'm so fortunate compared to what so many have to go through... I still feel guilty about it to this day.
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Oh I hear what you are saying...because mine is "just DCIS" as my husband put it, not as bad as others who have worse (my brother is in stage 2 esophageal cancer), the feeling of guilt can be over whelming. It seems to deny what I Am Feeling! Scared, sore from radiation, shame that I do need help around the house...I am also on Tamoxifin...so my fatigued hits me alot. Brain fog that leaves me well...foggy brained! And the family just doesn't get it and "whats my problem...it's not like i am having to be on chemo" etc.
Venting...DCIS IS cancer! And I never liked pink...but now I seem to cling to what it means...fight!
I have a friend who brings dinner over for us every Wednesday and I feel so guilty since some days i can do...but I do appreciate it so much.
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Wow - amazing! thanks all for sharing.
I have friends who are on one extreme to the other - from the "making the quilt" type friend because you're "REALLY" sick (poodlemama's post); to you don't have anything major wrong with you at all, ie. no big deal - amazing the responses and I just don't want to share that much with anyone right now. I am officially a hermit!
I've come to accept that sometimes our friends and loved ones are coping with the news how best they can cope with it. I can't judge them anymore than they can judge me. The fact that I have friends and family who care enough to process this with me, I am blessed that they give a crap to process this whole thing, however it might be. Maybe those that minimize it are minimzing because they couldn't handle something really being wrong with us. Maybe the one's that view us now as "REALLY" sick - view us that way because they've had traumatic loss already and they are bracing themselves for the hurt. I dunno. I'm not a shrink nor do I even play one on t.v.
Yeah, I'm not feelin' the pink right now...maybe it's a phase but a see a pink ribbon and I just want to run! Maybe it will change eventually. I used to where pink as a volunteer to show support. Now I feel like people would be staring at me - drawing attention to me. Shokk is so right - until it's your name on that pathology, you can't have a freakin' clue. I must tell you, my heart goes out to women especially with children getting news like this...I think it would be tenfold tougher.
As far as Komen Barbie - It is a slap that Barbie remained in her usual form as a breast cancer Barbie. But you know, it could be worse -- have you seen how Ken is built below the waist?? Seriously, Babie ain't so lucky in any shape or form!!
All kidding aside, thank you for responses. Amazing the flood gate of emotion right now. I went to the store, picked up a few things, got in my car and sobbed; it was my first outing since the lumpectomy on Friday -- sobbed for being so tired and fatigued from a few minutes of shopping. I am fiercely independent and hate that I'm slowing down for you know....."just DCIS"...
swalters - I will definitely e-mail you privately. I am seriously questioning the need for radiation even if it's the "standard of care" that is recommended. I'm not saying I won't do it, I want to make the best decision for me, not when i'm so emotionally charged, have time to weight things out.
again, thank you responses - and please, vent away - u are in good company right now.
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I agree with what other posters have said. A part of you- a very important part- was "stolen" from you and you have the right- and need- to grieve.
Reminds me of the day my cousin missed work at the World Trade Center on 9/11. He called out due to a bad cold. Took months for him to shake the "survivors' guilt". It was all very real PTSD even tho he had not left NJ that awful day.
It brings me to the central question of "Why do bad things happen to good people?" I love that book, written by a rabbi who lost his precious son to that awful disease where the child ages prematurely.
You sound like a caring, community-oriented person who will use this life chapter to better reach out to others. If you are not happy with the post-lumpectomy cosmetic appearance then go to a PS and seek options. you deserve to feel your very best. You are entitled to it so go for it.
I had to stop believing that God controls everything; it's a random universe and we have free will. God is with the people who console us. That's my basic theological underpinning! Works for me, but that's just me.
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GoodTimes I would listen to your doctors..........I think dcis can be more dangerous then stage 3.......there has been many women on these boards that think that if bc is caught early you will be ok.......believe all of us.......there really is no rhyme or reason to bc.......but if next year you have a recurrence or secondary or advancement with your current dx you will by asking yourself why didn't I do the radiation........and no it is no picnic........but chasing after bc for the rest of your life is going to be a lot worse.....plus you have one positive node.......get the radiation........you can do it.....plus you get to get tattoos..........
Poor Ken..........and he is such a good looking guy.........Shokk
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You can be appreciative that "all" you had was DCIS without having to bring out the guilt because others have a cancer that is life threateing.
Run-ins with the medical establishment, even pre-cancerous ones are enough to stress anybody out. Believe me, it will fade in time, but it takes a whole lot longer than you would think.
Just rest and take it easy for awhile. Having a health issue as big as breast cancer changes your perspective on the world, it's no longer quite the safe place it used to be and it takes awhile to adjust.
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Shokk, I'm a little confused by your statement that "....I think dcis can be more dangerous then stage 3." Can you explain how DCIS is more dangerous than stage 3?
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Because I believe that breast cancer has to be hit as hard as possible for all stages including dcis........I get really tired of "friends and family" thinking that it is really not "cancer".........I think that the professionals that treat breast cancer know just how "attitude" can affect a patient's decisions on their treatments...........right now with all the research and treatment most doctors do recommend radiation in treatment for dcis.........I think it is real good advice..........
You simply cannot begin to underestimate breast cancer.........in medical insurance world it is considered an "incurable cancer".......once you have been dx with breast cancer you are never cured.......you can become NED but you are never cured.........it can return anytime and anyplace in your body............at anytime.........whether you have been dx with dcis or stage 4 you need to do everything possible to treat your cancer as aggressively as possible...........Shokk
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Everyone handles things differently. DCIS is probably what my cancer was 2 years ago… you have a right to feel (scared) the way you do. Yes it's great they caught it early but this is scary stuff. Cry, yell what ever you need to do but don't feel guilty. I know that I was a little reluctant to post my nodes were negative the other day thinking about all those that weren't so lucky… but I realized that I love reading the positive stories on this forum. It give me/people hope.
I am so happy that they found your cancer early. No need to feel bad that they found mine or others later. We are all fighters/survivors. It's a rough road for all of us but THIS IS TREATABLE!
and to tell you the truth I'm not all that upset about losing the boobs. They were small and now I don't have to have mammograms anymore. Instead I see my breast surgeon who is a lot nicer than any of those techs ever were.
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Shokk..agree and thank you. but what is NED?
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Thanks for explaining, Shokk. I agree that as a form of cancer, DCIS should be treated as aggressively as possible, including diet/lifestyle changes, but I can't agree with your earlier statement that DCIS is "MORE" dangerous than stage 3.
By definition, DCIS hasn't invaded beyond the breast, so once it's gone, it's gone, unless the person doesn't change anything about their diet/lifestyle (in which case a new occurrence is likely to happen).
I can't help but think that if I had stage 3 IDC, I'd be a bit put off by the claim that DCIS is "more dangerous." I think the point can be made that all cancer including DCIS should be treated aggressively without resorting to a statement like that.
againmine41, NED = "no evidence of disease"... what used to be called "in remission."
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Feeling befuddled and confused and guilty are all perfectly normal feelings after a DCIS diagnois. I'm not sure which would be worse--being told that people are praying for you or dealing with the "oh thats not really cancer." I have mostly had to deal with the not-really-cancer crew and that has been hard. Now that my "active" treatment--ie surgery & zaps-- is over, everyone thinks I'm cured and there's nothing to worry about. I fwas never the least bit worried about mammagrams but now I feel petrified by my first post-surgical mammagram [next Friday] but there's no one to tell it too because I had "good" cancer and I'm "cured, right?"
Shokk and CrunchyPoodleMama, the problem is there is not enough knowledge or information to know which of you is right. In any cancer, early is better without a doubt and I'm sure there are plenty of people out there who minimalized their situation and who are now facing something worse, just like there are people who would took the most treatment but would have never faced anything life threatening. The thing is, you can never predict which camp you will fall into.
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Poodlemama I don't mean in the physical sense but in the psychological sense...........stage 3 is much more advanced then dcis......node involvement is also very crucial........but just because you have found your breast cancer in its earliest stages doesn't mean that once treated or removed means you are out of the woods.........or that the breast cancer can't return.....or advance....
NED is "no evidence of disease"........a term that is now used instead of the term remission........doesn't mean that the cancer is not there......the professionals just can't see it...... or detect it..........sometime you will see a poster post "dancing with NED".....means that their breast cancer is in remission.......Shokk
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3mon you made me smile.....I too thought that the mammograms and cancer markers would become easier as time past..........WRONG!!!!!!!...............believe me the further you get out from your original treatment and dx the harder it gets......it is like waiting for the other shoe to drop.......from a cliff........two years ago I went in for my 6 month check up and the doctor found a mass under my bad boob.....the only way you could feel it was laying down and pushing hard under the breast......well as all of us breast cancer patients know I think everyone checks their breast daily (usually in the shower) to see if we feel anything.......I was so mad........and so freaking scared.....
He did a biopsy right there and sent it to the lab while I waited......it turned out to be nonmalignant.....but geez.......scared the you know what out of me........Shokk
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No matter what the stage or age...early dx or metsister - F***ing CANCER SUCKS and it is one of the few things in life one faces that we have so little control over - and no real good answers to the bizillion questions that go through our minds - it is fear, horror, the unknown, the waiting, the uncertainty and the sheer word itself - but never should there be guilt...that implies something we did is why we go through it - the crap is sneaky and doesn't give a rats a$$ who it invades - like a body snatcher only our minds and emotions and entire lives get caught in it. Sobbing is totally normal - like anything, we grieve for our loss and it does seem to have an average span of about 3 months until we get into the treatment groove and coping groove and 'mothers little helpers' are available to assist - hang in there...the clouds do lift and the sun does shine again...Hugs to all...LowRider
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I remember sitting in my bc surgeons "library"......getting the game plan for treatment.........of course the only thing I hear is wind rushing through my ears with this megaphone voice screaming.....oh my God.......I have cancer.........anyway my doctor took my hand I think so I would listen to him and said there will come a time when one morning you are going to wake up and go five minutes without thinking "I have breast cancer"......and then one morning you will wake up and go 30 minutes before you think about cancer.........then in a couple of years you will go half the day before you think I have breast cancer.....at the time I thought what a schmuck........I will always be thinking about it.......but he was right......sometime it won't be until the evening when I think about it......
Now I wake up and wonder how in the heck am I ever going to get all my medical bills paid......but I will take those thoughts any day over the cancer thoughts........Shokk
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Lowrider54, a slight difference of opinion: IMHO, control over our lives is a myth. We all think we have control but we don't. Life happens and we all go through doing the best we can.
I think that is why so many of us find the world not too excited about our condition and not always the most helpful or empathetic, quick to say things like "well you are cured": by existance of our our diagnois we are a slap in the face of our friends that life cannot be controlled.
Even some of us sisters have trouble dealing with the random nature of our diagnois. I am reminded of that fact everytime I read about someone announcing they will only eat organic or veggie or stop whathave you and how that will prevent any reoccurance. I have eatten organic locally grown food for 20 years, I walk places, I avoid sugar [just don't like it] and, until this last year, have been at a perfectly normal weight. And here I am.
Shokk, its nice to hear that days will come when I don't think about this or worry about what ifs. But, alas, I doubt I will ever return to the ladidahness of mammagrams pre-diagnois.
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3monstmama - I guess I phrased that poorly...should have just plain said - there is no control over it no matter what - it picks who it wants. I was aluding to the lack of control that we really have but would like to think that we do and therein, lies the rub.
Love to meet you someday...just never on the SS Mets Cruise Line...Deal?
Hugs
LowRider
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Two years of guilt from having "good cancer" I know just how you feel. I had to have a mascetomy on one side and decided to have both removed so I did not have to face this again. Funny thing is it does not matter. I still worry and think about it coming back somewhere else. I have always lived a healthy lifestyle and never really been sick then WOW everything changed. I have had 5 surgeries in two years and live with pain from implants everyday.
Thank you for starting this thread. I thought I was the only one that had these feelings. I find I avoid people that I know that have gone through this with treatment because I feel guilty that I did not have to. I feel know one understands how much this terrible diecease has changed my life and how much it has taken from me. I do refuse to give into it. I am getting my implants removed at the end of this month and having a DIEP procedure. I want my life back.
Yes, we DCIS gals are lucky that we caught ours earlier than others. Cancer is cancer and it sucks no matter what stage. It changes everything. We just have to fight to keep our life going forward even though the direction has changed.
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Melinda and all you DCIS gals...I wish you guys wouldn't feel guilty about not having to go through the 'try to kill you to save you' routine. I was a 'tween' the first dx - stage II - stageIII - out of 25 nodes removed, 4 positive (the cutoff) and just starting to invade the 5th (stage III). It gave me options of different chemos - my hair was down to my ass and I wasn't looking forward to losing it so, there was a chemo cocktail that lessened my 'survival' from 85% to 82% but offered me a 30% chance that I would NOT lose my hair. The other cocktail would surely have left me bald. So - I picked my hair - I didn't not see a huge significance in 3% but it was significant that having already lost a boob, I really didn't want to lose any more parts. I went through 8 months of the crap (longer than most because of the cocktail) and did have to cut my hair up to mid back and it did thin but I didn't lose it. People would tell me I couldn't have had cancer and gone through chemo because I didn't lose my hair - there was a bit of guilt watching the wigs and scarves come in and out of the treatment room while I sat there hooked up and with my own hair (there was a bit of a hairless issue going on elsewhere however - and I was still shaving my legs...lol). I had cancer, same as them - the crap sucks. I get a pretty good idea about the guilt.
I was 10 years NED - its back and in my bones only so for now, hormonal treatments. And the prayer that I make it with it staying in my bones until the next great thing in treatment - bone mets as a chronic condition. When dx'd with the mets, I had my reconstruction finished - surgical complications prevented it but I still had the stupid expander it and it had to come out so I now have 2 perky little B cups (an up side), lost 30 pounds, and looking at life very differently.
It is a life changer no matter the stage as I said before - but was I 'lucky' not to lose my hair and take a 3% gamble with my life? Its back - I think it would have anyway and I have way more important things to concern myself with than the 'why' is it back...its called LIVING!
Hugs and Blessing to you all....LowRider
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Thank you Lowrider54...your message was a help..if that makes any sense.
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againmine41 - it makes sense and oddly, I have offered this very post to someone having a hard time with an issue...it make help her get through it - kinda just the opposite feeling but feeling guilty about feeling that way. Funny, no matter the issue or stage - there is something in everyone's thread and post that resonates with every single person battling this beast in one form or another.
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Amen!
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I am so sick of hearing people tell me what all of you just said ... "they caught it early" and "it isn't real cancer." What? I'm not sick enough for you? Should I have waited until it got outside of the breast?
As women we sure are hard-wired for guilt. When I am upset/distressed/anxious I try primal screaming - it really helps although it can alarm the neighbors. I think we all deserve a pity party ocasionally. Its good for the soul.
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(((GoodTimes))),
Life is too short for guilt of any kind! Vent on and get rid of that toxic stuff. It doesn't do any of us any good. Cancer in any form does stink, and you will go through a whole range of emotions. Some days you will feel hopeful and strong; other days not so much. I try to hang on to the great days where I'm feeling like I can conquer the world, and I try to take a nap on the ones that are not so good.
Loved the text message!
Hugs
Bobbie
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