Am I the only one who feels "guilty"?

Ami1026

Hi all :-)

I wonder if any of you feel the same as I do.....? I was diagnosed with a rather large area of DCIS back in 2012, at the age of 37, resulting in a sheer panic from my doctors (my mother died of breast cancer when I was 15, mine was a fairly large size, and they ALL were preparing me for finding IDC when the final path came back. I selected mastectomy due to history, size and odds. My BS and Nurse Navigator had already handed me "Preparing for Chemo" booklets. I spent my days wondering how to prepare my children - aged 11 and 5 at the time - for what was to come.)

Had the surgery and was of course emotionally terrified. Physically, I was a rockstar. Limited pain, stopped the narcotics within 2 days, couldn't stand to sit around so went out walking 3 days out. I got the call 4 days after surgery-- pure DCIS, no invasive. Thanks for playing, have a great life. Since I'm hormone negative, no tamox. Saw an Onc once, she basically said "go back to PCP, screen every 6 months and enjoy your life."

I had slightly delayed reconstruction, as my PS was worried about the final path and resulting treatments as well as my "thin skin." TE placement one month post-mastectomy, no problems. Fills went fine. Switch to permanent implant along with lift/implant on natural side. PS kept saying "this is going to be tricky - you're too thin, your skin is too fragile, etc." No issues whatsoever. I had a revision to the natural side, and 4 total fat grafting surgeries for the mastectomy side. Again, no issues at all. Within a week from each surgery I was begging my PS to let me exercise (but I was a good girl and followed his instructions and took it easy.) 2 Nipple recons (one fat, one dermal filler). 2 tattoo sessions. Not even a hint of a problem. I've felt great the whole 3 years, and only hate the "down-time" after surgeries.

In the 3 years since diagnosis, I have: been doing crossfit for over a year with no problems at all (except my own mental weakness LOL), despite having 3 nodes removed, haven't had a hint of lymphedema issue. I've even been a space-cadet twice and let them draw blood/start an IV on the bad side! I keep my screenings up, and had a few blips that turned out to be fat necrosis/scar tissue. Only my closest 2 friends know the true story, and to everyone else I'm an absolute picture of health. My reconstructed breast looks great, even without clothes (I still have a couple of fat grafting/nipple revisions to go.)

I feel so damn guilty most of the time. I read the stories here, and my heart breaks for everyone. Not only the higher stages, but even the stage 0 ladies who suffer through failed reconstruction, lymphedema problems, tamox side effects, etc. I find myself continuously drawn back to these boards....but never posting because of how "lucky" I am. But damn it, there's no one else in my life I can talk to! LOL Maybe its hitting me hard now because the anniversary of my dear mom's death from BC is in a couple of days. I just find it so hard to be "normal" when I'm not quite normal, but I'm not suffering at all either. I'm not really sure how to deal with that.

Is there anyone else out there that feels the same?

Italychick

yes, I totally am with you. I rode my bike two days after lumpectomy, exercised, worked, took care of sick grandchildren, all during chemo. I even rode my bike the same day right after chemo infusions, and I mean like 25 miles hard. One time I did 61 miles two days after a chemo infusion. Now, I only have some slight achiness at my lumpectomy site when I overdo it, but no lymphedema (breast surgeon checked), very minimal scarring, etc. I feel like I never had chemo or surgery.

Took one pain pill the night of my surgery because husband insisted, and then never took them again. No nausea meds except what I got for infusions. Never had nausea. Ate what I wanted. After round 5, chemo was stopped because of neuropathy symptoms, but I don't have any of those now. Had heartburn after round 5, but it resolved pretty quickly.

I hear everybody else's horror stories, and it makes my heart hurt. I don't know why I've been so fortunate, but I'm asking no questions.

Still doing Herceptin, no effects from that either. My heart function actually improved.

Just be happy you have been lucky, we all are for women who get to sail through with minimal issues.

jwilco

Interesting you started this topic as I've been feeling guilty/lucky/guilty/blessed/guilty quite often and even more so lately. I had IDC, but it was slow growing and small. It's been four years. Tamox hardly any side effects. My only things have been some pelvic ultrasounds for ovary cysts and to check lining, but all is well at last one in Aug. Also in Aug I get my mamo (only fat necrosis on MX side). But I've spent the last four years with worry and just not feeling happy enough. I had my onc appt a week ago and I was all ready to complain to her about my lack of sleep from hot flashes, my worry of what's next with my body, bla bla bla. Then I'm in the waiting room and a woman walked in with her young son. They went to the back room area where they do the treatments. A short time later they came out with the older son, still HS age, and my heart sank! I got into my appt with the doc and told her I how I came in all ready to complain but in the larger picture I'm ok and lucky. She said it's ok to complain. Not to feel guilty about my prognosis but to rejoice in it.

Yesterday I received a letter from my gyno. She also had BC at the same time as I did. Her letter was sent to all her patients telling them that her cancer was back and she was going to be on extended medical leave. My heart sank!!!! She helped me so much when I saw her. I can only pray for her and once again be so grateful that I'm still ok.

So I try to take that guilt and turn it into gratitude. We can't help the way this disease can shatter one life and spare another. We can only be grateful for the fact that we are here and we are lucky that all the research over the years has paid off and we got diagnosed early and there are plenty of treatments. We can still provide support to those with questions or worries or stories similar to ours. Don't feel guilty. Your positive attitude and ability to move forward can help someone else do the same.

ShetlandPony

No matter how we are doing, there are always women who are better off and women who are worse off. I look at it like this: We are all in this together. So guilt has no place. I share in your victory or your well-being. I am sad for you when things are not going well. The emotional pain, the fear, the worry, the loneliness can strike any of us, and we all need a place to share.

Sjacobs146

Ami, there are always people worse off than ourselves. Whil I was undergoing treatment last fall and winter, a friend of mine was dying of Breast cancer (she died in July). I think sharing success stories is important so that folks coming to this site do not think that it's all doom and gloom. I post on a Tamox thread from time to time because I have no SEs. There are women who are terrified of taking it because all they've heard is the horror stories.

Losing a Breast and undergoing multiple surgeries is no small thing. Also, you have to be monitored for the rest of your life, BC can come back. Don't feel,gusty that you've had an easier time than some. You've had a worse time than some as well.

Ami1026

Thanks Theresa, jwilco, Shetland and sjacobs! I find some comfort knowing there are others out there, feeling somewhat the same. Also hearing your positive thoughts helps so much. And I do see the value in sharing the "good" stories - in thinking this past few days, I remember coming to these boards when I was in-between biopsy dx and final path....and just reading everything hoping to find those bright spots of good outcomes. I think you are right, and I should get over my awkwardness and share my experiences as well. Because this disease touches so many, in so many ways, and all of our stories have a place and may be just what one woman at that terrifying moment in her life needs to hear.

And above all, all of us here have at least some understanding of what it means to have faced this beast. I may never feel comfortable posting on the higher stage boards, but I do read and keep up with the ladies and keep them in my heart.

thank you all for helping me through a couple of difficult days! (I also have a screening MRI coming up next week, which is never good for the stress levels!)

DivineMrsM

Ami, and others, you are allowed to feel what you want. I just want to say, please, try not to waste one more moment of your time feeling guilt. Guilt is a wasted emotion. Please try to get beyond it. I am so glad that you had less troubles with bc. That you are able to move forward with life. I was dx with stage iv from the start and unlike some other women with stage iv, I've had a stretch of being stable. There have been women on these boards diagnosed stage iv before and after me who've passed from the disease. While I feel very badly for them and their loved ones, I don't feel guilty for my own stability one single minute, I will take all the stability I can get for as long as I can get it. But being stage iv doesn't mean I resent that you or anyone else dealt with a lesser stage bc. You do not owe it to anyone to suffer as many difficulties from bc if that has not been your experience. Enjoy the ups and downs of raising your beautiful children and all of life. Celebrate your good fortune. It is perfectly okay if you have been lucky. That is just the way life works. Best wishes to all of you.

Nomatterwhat

I have felt guilty during my bc fight. I made the decision to have a BMX with no recon, because I am chicken to go through more surgeries. I went through 4 rounds of TC chemo, with some calling it "chemo-lite". It wasn't as bad as some, but it was still chemo. I went through 33 rounds of radiation with no blistering or bad side effects. I didn't miss a day of work during any of this, other than doctor appointments and infusion days. When I would tell my story, people would call me "lucky" or tell me "I got off easy". However, I did lose my hair, one finger nail, two toenails, so while I don't fee like I had as hard a time as other ladies, I still had my moments of ugliness. Maybe, I did get off easy or was lucky, but I was determined to keep a positive attitude and to keep myself busy with work everyday and live my life to the fullest. Some ladies don't like the word "survivor", but to me that is what I am everyday I put my feet on the floor.

mustlovepoodles

Ami, I learned a long time ago that Life is not a contest. There are no gold stars at the end of it all. It is perfectly fine to feel your feelings. Feelings aren't good or bad, they're just feelings, and feelings can change.

I have a severely mentally handicapped child. At 20, he is like a 1 year old; he walks, but does not talk, feed himself, take care of his own hygiene and he wears diapers. A long time ago I worked for pediatricians. Nearly every day I saw mothers who dragged their kids to the peds with complaints that their child had had a fever of 100 since last night or suspected their child had an ear infection because he was pulling on his ear. When my DS was under 5 he was pretty fragile and I had a hard time sometimes with these mothers who were clearly over-reacting to very minor situations (as compared to mine.) Honestly, I had difficulty being concerned and had to just make myself NOT roll my eyes sometimes.

One day I had an epiphany--every parents' experience was unique. Having a very handicapped child did not make me morally superior. My experience was my experience and nothing else. I came to realize that I didn't know what these parents had experienced--maybe they had lost a baby to SIDS, maybe they had a condition which made it hard for them to cope, maybe they had just found out that a loved one was terminal. Rather than sit in judgment, I needed to be compassionate. Once I changed my attitude I became a much better nurse.

I guess this is a long way of saying IT'S OKAY that you had no complications. You don't need to feel guilty. In fact, I would name this false guilt. You can count yourself lucky .Maybe it's because you did everything right, but I would say you probably just got very lucky. It's okay. Nobody should look at you and think any less of you because of it, and if they do, well consider the source and move on.

Trvler

I remember when my neighbor who was the nicest woman ever died of BC, I felt feelings of guilt. I was going through a rough time with my kids and I was feeling low self esteem. I guess I had survivor guilt. I guess I kind of had some similar feelings going through treatment and at other times I ask why me? It isn't like this haven't had an impact on my life at all. My family has been really struggling and so has my marriage. And I agree guilt is a wasted emotion.

april485

mustlovepoodles, your post has such resonance with me. I sometimes struggle with guilt that the two times I have been diagnosed with cancer, they were both stage 0. You are right. Feelings are just feelings and they are unique to all of our situations and perspectives. Very well put. Thanks for the reminder.

DivineMrsM

Here is a story I've told several times on a few other threads:

It was December 22, 2010 that I found the lump in my left breast, six days after my annual mammogram. After several weeks of testing, I learned I was dealing with stage iv bc. And that really, really sucks.Yet, here I am almost exactly five years after finding the lump, living a satisfying life.

That very same December week in 2010, a woman I was acquainted with, in her 40s, in the small town where I live (population 5,000) had a brain anyeurism and died. She had an only child, a son the same age as my son. The boys were seniors in high school at the time. And the same week, another horrific tragedy occurred in this small town, the murder-suicide of a husband and wife (husband shot her then himself). They had two daughters, their oldest also being the same age as my son.

At some point, I realized those kids never got to have even that Christmas with their moms. Their moms never got to see those kids graduated high school and meanwhile, I have had five going on six Christmas days with my son and family and also went on and helped my son transition to college and got to enjoy his college graduation this May. Those two moms never got any of that with their kids

My point here is "luck" is relative. Yeah, I drew the unlucky stage iv bc card and not A lesser stage. But I didn't draw the brain anyeurism or murdered card. I don't feel guilty that I am here and those other two women are not. I am humbled by it, knowing that things could have happened differently. I hope what I'm saying makes sense. My life is still filled with many blessings and most of us will deal with difficulties through life. The stage iv thing just happened to be what I was dealt. I hope women with lesser stage bc would move forward with no guilt, don't let bc take anything more from you than it already has

edwards750

I don't feel guilty I drew the early stage BC - stage 1a but I do feel sad for friends who have suffered through a recurrence and fought the disease to the bitter end. I am especially sad for younger women with small children. My youngest is 26. Unfortunately the beast isn't discriminating inflicting women of all ages. We all drew the BC card. No guarantees regardless. I am determined it will not control my life anymore than it already has. My 5 year milestone is August 2016.

I recently lost a friend to BC. Her's was aggressive from the getgo some 8 years ago. It came back with a vengeance and eventually took her life. I never once heard her whine and complain. She had an amazing attitude. Not sure I would be like that

Be grateful for your blessings everyday. No one is promised tomorrow.

Diane

tgtg

Ami--This is a much needed thread for those who were dealt a better hand in the game of breast-cancer life than others, since most of the posts, quite understably, come from women who are suffering because of the disease. Even if we don't feel guilty about our "good luck," it is nevertheless disheartening to see so much pain and suffering from breast cancer.

Three years ago, on Dec. 21, 2012, I received an early "Christmas present"--a call from the surgeon telling me I had IDC! Needless to say, for my husband and me the 12 days of Christmas were not filled with lords a-leaping or pipers piping, and instead of five golden rings all I got was a plug nickel in life's game of chance as I waited for my Jan. 7 surgery. Like everyone here, I was fearful and devastated, especially since my worst lifelong health issue was a broken ankle in my early 40's, and even the surgeon's assurances that my prognosis was as optimal as prognoses get didn't dispel those feelings. But once I had my surgery and got my full pathology report, the fear and devastation ended, and I looked forward to getting back to a long, healthy and active life--and to getting back to the gym to work out.

Like several others here, I had no need for pain-killers after surgery and even felt good enough two days later to return to the gym (with the surgeon's blessing) for leg work only. Exercising made me feel great, and I gradually worked back up to arm work when the surgeon said I could. During rads, in fact, I went straight to the gym from my 9 A.M. appointment 3 days a week--and never experienced fatigue at all. (Being retired and not having kids to take care of also helped!) I continued to live my life as before b.c., and heeded the wisdom of the ancient Chinese philosopher Lao-Tse, "[S]he who lives in the past lives wth depression, [s]he who lives in the future lives with anxiety, but [s]he who lives in the present lives with happiness." This mantra also shapes the way I approach my follow-up exams and imaging--I welcome them, when they happen, as opportunities to learn that I am doing fine now, rather than perceive and fear them as potential bearers of bad news. If they bring bad news, so be it--that's life--and I will deal with that if/when it happens.

I also made a point of telling friends about my breast cancer, reminding them to get their mammograms faithfully (as I had done for 31 years until 2012), just in case something has started brewing! In doing that, I learned, and continue to learn, about many people who successfully overcame breast cancer (and sadly a handful of a few who didn't) and feel reassured by that knowledge. And it was empowering and an honor last year when a divorced acquaintance from church asked me to be her treatment companion--ironically she had her lumpectomy exactly two years after me, also on Jan. 7! To me these activities are much more forward looking and productive than giving in to guilt feelings about my "lucky" prognosis. since feeling guilt is Lao-Tse's "living in the past" that invites depression. (By the way, that acquaintance and I have become good friends since January--and we are both richer for the relationship, totally aside from the breast cancer sharing!)

As mustlovepoodles says, you need not feel guilty that you had such an easy time, especially since it is a false guilt. Get on with life, take it as it comes, and don't look back. And keep sharing your good story here, since other women in situations like ours on this thread need to know that a breast cancer diagnosis isn't always a lifetime "doom and gloom" scenario and that it isn't the end of the world.

JudyGG

To TGTG,

Excellent post last year.  Thank you.  Am in the middle of the journey - having DMX 10-26 and finding my way.  Have decided that for each event I view as 'negative'  (ie: loss of breast), I will give myself a 'positive' (TBD).  But also, plan to continue reaching outside myself and hopefully helping others without letting it over-whelm my life.

As most comments note, feeling guilty is very counterproductive and I would consider that it could also be selfish.  If any of us feel that we have it 'easy', just go help a neighbor, make dinner for a shut in or ? ? ?  That said, anyone who does well should shout hallelujah and be grateful, thankful and NOT guilty!

Love2Hike

This has been a great topic. I appreciated reading everyone's comments. I'm new to this site and am in the middle of reconstruction and have found the insights here very helpful and profound.

Anonymous

I just came upon this like love2hike, and I have to say even though its about feeling guilty, it's actually so helpful to see the positive posts and NOT the doom and gloom that you can so easily find. I so appreciate everyone's stories! I've completed chemo, and while in the wait process for surgery- now dealing with a blood clot. It's been frustrating and painful and you can get yourself sucked into the negatives- but posts like all of yours gets me out of them much quicker! Thank you for taking the time to post your stories!

Kelly

DGD

Hi Ami, 

I do relate. I had DCIS too, negative nodes, but several "areas of abnormality over a large field," including fast-growing atypical ductal hyperplasia. I was 42, with kids 7 and 11. I opted for a bilateral mastectomy with reconstruction. I was able to avoid chemo and radiation and Tamoxifen (since I went with bilateral). I'm so grateful, but guilty at the same time...especially now as I watch 2 friends go through the whole thing, both @ stage 3. I'm also pretty anxious and worry about a recurrence...then I feel ridiculous about that since my diagnosis was stage 0. I have so many moments of feeling scared, and the bad memories of the whole experience are with me each day. I try to hold onto an "attitude of gratitude."

Moderators

DGD-

Welcome to BCO, and thank you for sharing your story and support! The feelings of guilt are totally normal, you just have to make the best decision for you. We wish you continued health!

The Mods

3positive-57

I was not one of the lucky ones. I fell into the bottom 3% of things that don't normally happen to you during treatment. I hated telling the truth to those who ask me how it really was for me. I was not the norm and hated to scare others who are just beginning this whole process. I'm so jealous of you who, for the most part, sailed thru with minimal issues. It is encouraging, all news about BC should not be doom and gloom. There is plenty of that going around so it's good to hear positive news