Guilt about being Stage III?
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I find myself feeling really guilty about how big my tumor got and how fast it spread. I never really did the BSEs. I wasn't unaware of my body - I would feel my breasts in the shower, while getting changed, etc but I never did the whole once a month comprehensive process (didn't get mammos because I was too young). My lump seemed to pop up out of the middle of nowhere. I was getting ready for bed one night and hit something hard and huge. By the time I had my PET scan it was measuring 7cm and five lymph nodes (two of them around 2cm) lit up. I really didn't think my lump was there before I felt it that night but I keep doubting myself. The way it was so big and had spread to the lymph nodes makes me wonder if I missed something. I do have an aggressive cancer (Her2+ and Grade 3) but I was talking to another woman today who had the same stats and was only Stage I at diagnosed (and her diagnosis was even delayed eight months due to a faulty mammo!) How could we have the same cancers and she was diagnosed Stage I and I was diagnosed Stage III? I had to have missed some sign earlier. But it also doesn't make sense. I was swimming all summer prior, peeling on and off a tight swimsuit twice a day, and I never detected anything, nor was anything detected during my clinical breast exam nine months earlier. None of this makes sense.
I'm scared of being Stage III. I'm scared of getting mets. And I'm scared that I have signed my death warrant by not taking BSEs seriously enough.
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Sorry you have found yourself here. Don't feel guilty, this cancer $#!+ is a crap shoot...
I did all the right check-up things and ended up Stage III anyway. Mammo in December clear, lump found in late September, cancer DX in October. Her2+ and Grade 3 here also. Not convinced that it wasn't there, but oncologist feels it was just aggressive enough to get into 9 nodes in a short period of time. Grade 3 is more susceptible to chemo and Her2+ has targeted medications that are very effective. Lots of stuff to throw at it to kill off the beast!
LOVE your username....
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I was diagnosed Dec.2012 with stage 3 Invasive ductal.It is staged by the size and if it has moved from the breast.I wasn't sick .My arm was going to sleep at night and I was rubbing it. I found the lump in my arm pit.I never even thought the word breast cancer.Hit me like a truck.I was 48.My life changed from that moment on.They immediately took me out of work.My only saving grace was the chemo and the fact it was contained.They weren't expecting that when they started running tests.They then said I have a chance.I went into this with no promises.I am here today.I have survived my first year.Dont feel guilty for what u might of done if you had known what you do now.Some cancers are very fast and invasive.
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pls don't feel guilty....we all did the best we could about our health. It is what it is. The only thing I learned from this is to take care of my health and hope for the best. There's nothing else I can control except my attitude, my live style.
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I call it ESL .....we all have it , extremely shitty luck !!! I did all the right things, super healthy eating, running , never any birth controls , nursed 3 babies for a year each, did my mammos, check up etc. My lymph node tumors were found first....no other symptoms. Mammo and MRI didn't even "catch" it, my surgeon did !! However now almost a year later its ALL gone
Hang in there and know that no one cause there cancer or stages it all sucks and is unfair. All we can do is take the best care of ourselfs as we can Give your self a hug !! -
I will jump in here too... I constantly touch my breasts and did BSEs (I was never sure if I was doing them correctly, but I was doing them). I went for a routine mammo in January, it was BiRads 5 - radiologist told me that if the biopsy was clear to call her back because she was certain it was cancer. When I went to the breast surgeon, she couldn't feel it, my primary couldn't feel it, I still couldn't feel it. Original radiologist also noticed some nodes that looked impacted... all during the diagnosis phase (which is torture, btw), we couldn't find cancer in the nodes - the BS couldn't find them to biopsy, a second radiologist biopsied them - the pathologist said the sample was all breast tissue, no cancer no nodes, I went into surgery assuming I was stage II (after the initial clinical dx was stage I....then at surgery they found five positive nodes and the tumor was 2.3cm, bigger than originally thought). I woke up stage IIIb.
I don't think the progression happened during the time from mammo to surgery - my tumor is ER/PR+ and grade 2, not very aggressive. I just think it's hard to tell what's going on until you get in there and look.
I also kicked myself because I skipped a yearly mammo and disregarded some dimpling on my breast. I have let go of that guilt (I think )..... it is what it is and it's being taken care of now....
Stage III isn't a death sentence; though I understand - and share - your fear of recurrence and progression.
Big hugs to you!
Jen
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sorry too you found yourself here. I was in a similar boat to you, big lump 4-5cm (how did I not feel it or find it) I found a huge lump in my armpit and went to the doctor about that - she found the one in my breast - hello where did that come from? How did I not feel or notice it because it was quite clearly there and big! Anyway grade III and had chemo, herceptin, mastectomy and radiotherapy and fast forward from June 2007 until now and yep I'm still here! Stage III responds to chemo very well and Herceptin is a wonder drug - please try and keep that in mind.
Hugs.
xx
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Bad at Users.....Please do not feel guilty, but I must admit some days I wonder if my lifestyle played a roll in my dx. My story is the same. PCP had checked my breast, long exam, several months later, stage 3. She told me mammos/slammos are not the wonder test we think they are.
I went into surgery believing I had 1 positive node, came out with 6, matted with extranodal extension. Acceptance is a very slow process, it's been 9 months now & I am still working on it.
I was convinced that I would be fine, a month after chemo. The emotional healing, especially with our stage 3 status, takes time. A year, maybe two, past treatment before we can feel as close to our old selves as we ever will.
My SIL had BC 11 years ago, some 20 nodes +, her+, doing fantastic today. I try to think of her living well when I get scared, which is all day, basically...lol...
I told a oncology nurse in a survivorship appt. that I knew my odds were grim. She, very honestly said, that's a harsh word, lets say "uncertain". It made me feel better that someone would acknowledge the truth.
The gal you visited with, must not have positive nodes. She might be confusing stage & grade...not sure, but you cannot have the same stats & have that different stages....keep posting, we all get it....
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Don't beat yourself up. I had a clean mammo AND thermogram AND 9 months before dx got the all clear from my Gyno on yearly exam. Mine was buried under my "acute breast density" and a benign 2.5 cm nodule.
Keep coming here for support.
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BAU
Don't feel guilty. Breast Cancer is a crap shoot. I remember when I was diagnosed, I too had a large tumor that I found myself. Like you I wasn't the type that did monthly self exams but I know my body enough to recognize something is not right. My nipple was starting to look different in the mirror. I never thought it could be serious because I had 3 mammos that year as they were watching micro calcifications on the other side, so I felt safe because I never missed my annual mammos. But this nipple looking inverted made me feel around and I noticed a hardening around the areola. It seemed large and I immediately called my gyno and made an appointment that week. She said she didn't like it and sent me right over to the Breast Institute for a diagnostic mammo and ultra sound and biopsy. It picked up what they said was a 4.9 cm tumor under the nipple, but "no node involvement." I was shocked. How could I have missed this with all the yearly mammos. They said I have dense breasts, and it was a "slow growing cancer" that had probably been there for 10 years! When I had the left mastectomy it turned out to be larger than what was seen on the ultrasound, and also 2 nodes were cancerous. I was very guilty I hadn't caught it earlier, but also very angry my mammos hadn't picked it up either. It is what it is and worrying over it does you no good. So try to focus on each day of living without the tumor.
Oceana
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Eight months after a benign mammo, I found mine. It was just there suddenly out of nowhere. My surgeon thought it was originally 7 cm. I had chemo before surgery so I'll never know for sure. One positive node that was 2 cm in size was identified at diagnosis. I had 10 nodes even after chemo. I wonder often how it was missed--by me, by my gyno and by the mammogram. I don't think the gyno did a very thorough exam. My original gyno retired, but they did not notify me--they just put me with a different doctor. I thought one quicky exam wouldn't be a big deal. I wonder if it was. However, I doubt I'd have been comfortable saying please examine me more thoroughly. I always hated that part the most, and I had no reason to think I was at risk.
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I felt so guilty as well and entered a similar post on this stage 3 thread. All the replies really lifted me up and I hope they help you too. It is too easy to judge ourselves harshly in retrospect. We didn't know then what we know now. If we knew we would be "the ones" to get bc I'm certain all of of us would have been religiously checking our breasts for lumps. We might have done a multitude of things differently in our lives if we had the benefit of seeing the future. Please don't beat yourself up. We can only move forward from where we are now. It is not hopeless. I encourage you to focus on things you love. Try not to let guilt, regret, or fear of things that you don't control, keep you from enjoying life. For now just take it one day at a time.
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honestly, I think this is an example of how we are pink washed. How we feel guilty somehow instead of realizing just how insidious breast cancer really is. At 39, I had no idea what breast cancer really was. I only knew the pink ribbon stuff. I'm a little different because I never had a huge lump. I found a 1cm lump that happened to be near the surface and then surgery found the regularly invasive lump: screening did not find the IDC lump due to dense breasts. I thank God for the mucinous lump: who knows how long the 'hidden' lump would have grown. IBC threw me into Stage III after a bilateral mastectomy. And they found one positive node at 1.5cm that turned out to be 3cm at surgery, plus 9 more positive. None of us ever felt the positive node.
My history makes it easy for me to see just how sneaky BC really is. Not finding your own large lump is not your fault! The more you talk to people the more you will find out just how sneaky BC is and how it fools all the mammograms and ultrasounds and. MRIs and CTs and even PETs and radiologists and breast surgeons and oncologists etc etc. it's crazy but you are not.
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I don't think there is a single one of us who hasn't thought about something we should or should not have done that got us to this point. I wasn't diligent about monthly breast exams either. I never felt the lump though. Mine wasn't very large and its not very aggressive thankfully. I am Stage II, Grade 1 IDC. I went into surgery as a Stage I and came out as Stage II. The Path report showed a micromet in the SN. My sister has ILC. Both of us had routine mammograms but we also both probably got BC because our mother had it. It is a virtual crap shoot. As some women have said they did everything right and still got it. Why? They don't know. Unlucky draw. As for the lady with the similar DX its not possible to have that big of a disparity in stages. Regardless, don't second guess yourself. You will never know if it had been discovered earlier it would have made a difference in your DX. Move forward; there are lots of treatments out there and optimism as well. Diane
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Just happen to see this forum... mine was much the same way. Had baseline mammo at 36. Found lump at 39 (monthe b4 40th)... Brushing my teeth. Put my hand under my arm... felt it on my right breast. I felt aware of my body...somewhat did exams...it was just all of a sudden there. I try to not beat myself up and MO said he sees it this way often in youngerish women or if the tumor is aggressive.I see serveral of you did chemo before suregeries. How did that go? I've had 8 Taxol then will do 4 AC. US shows tumors (I have one in breast and one node they can see) are smaller...however, my breast is still swollen, reddish, hard... worries me a bit. Of course MO and surgeon say the biopsies and MRIs have contributed to the breast tissure being aggravated...
Just would appreciate your experiences on those who did chemo first.
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Just had my last Taxol on Friday. I'm backwards, did fine on A/C but my taxol did not agree with me. Should find out about RO referral in 2 weeks. The chemo threads are a great place to "meet" others going through it at the same time. The ladies on the December thread are my go to gals!! There are a few women on that thread that are doing chemo first. I have some swelling and pain with the Taxol and am 5 months out from my surgery. The only thing my MO will be checking is my tumor markers, so it is pretty much belief that all the cancer is gone. The visible was taken during surgery. All the treatments are to "take care of" any stray cells that may have escaped the containment area.
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I had chemo first. It went okay and like you, I was able to monitor the progress. I assume they would have pulled me off the chemo or changed it if I didn't make progress, but because my tumor was large, I could follow along without US etc. However, I didn't have a full pathological response. I also think it was better in that the worst part of treatment was over first. Everything else was easier after that.
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I'll chime in too with everyone on here. I was never one to think of myself first, even when it came to my health. When dx'd, I was taking care of my father's medical, financial & personal affairs. I have 2 sisters that don't live in my state, so getting "hands on" help from them wasn't an option. I saw my GP doc 8 months prior to dx for BC, and did a full blood panel, which showed everything was good. I had only had one mammo before and should have had regular mammos due to a family history with aunts & cousins having BC going back 30 years, and also I have always had dense breasts not easy to detect anything. I discovered a hard lump or mass on my own, and waited about two months to check it out. Nothing "lit up" on MRI to indicate node involvement, but came out of surgery with 4 pos. much to surprise of surgeons. Has been a long road, but even as stage 3 it is do-able. I think we all question what we could've noticed or done earlier, so try not to go there too much -- and take time for yourself and do what makes you happy.....
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It breaks my heart when I hear women feel guilty about cancer. I confess...I felt ashamed and guilty too. As if, by altering something, I could have prevented it. yeah, right. Wouldn't I get a nobel prize or something if I could figure out why women get breast cancer, LOL.
I had mammograms annually at 40; I did bse; I had annual gyn physicals. Nothing picked it up (except my dream about breasts)--no doctor, no ultrasound, no mammogram. Maybe medicine and science should feel guilty that they have not devised a way to detect sneaky cancers.
We are dealt a crappy hand and now we do the best we can. I am so sorry you have to deal with this.
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Cider8, I hear you about the nodes. I had chemo before surgery and still had 7 positive nodes removed at surgery time. At DX, none of the nodes showed on mammo, U/S, MRI or CT. 2 of the nodes could be felt. The bigger of the 2 palpable ones turned out NOT to have cancer. This is a truly screwy disease, and I get a little cranky about all the mammogram propaganda. I am glad people are aware and getting checked and yadda-yadda, but I also think it gives people a false sense of security.
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On the neoadjuvant chemo note, I'm in the middle of it (4xDD AC, followed by 12xTaxol/Herceptin/Perjeta). My palpable nodes were no longer palpable after just the first AC. The tumor is shrinking but it's not a complete regression as much as it's melting into the surrounding tissue. My onc says that it will likely leave a bit of scar tissue due to the size and the fact that I had a clip placed between AC and T/H/P in case I opt for a lumpectomy (unlikely, but I wasn't ready to shut that door completely). So if the lump doesn't disappear completely, don't panic...doesn't mean it's active cancer. If I don't have a complete or near-complete response at the time of surgery, I'm going to fight to get on a clinical trial for adjuvant chemo. So that's always an option too.
I'm very glad I did neoadjuvant (mind you, I didn't really make the decision to, my onc recommended it and I just nodded and said yes because I have just been diagnosed four days before and I didn't understand that was going on). But in retrospect, I feel a lot better about getting right to chemo on the killing-stray-cancer cells front. The thing with neoadjuvant is that you don't know what's going on in there for 4-6 months. For me that has been comforting on my good days because it allows me to bask in a fair amount of denial (maybe those nodes weren't positive after all, maybe it was just something that...looked like cancer) and terrifying on my bad days because I start imagining how bad it could've been at the beginning (maybe there weren't only five nodes positive, maybe there were...25!)
As far as my friend and our similar diagnosis, let me clarify. I just meant that we both had high-grade, Her2+ tumors. She was still Stage I even after an eight-month delay in getting diagnosed. That made me feel like it wasn't possible for mine to develop nearly as quickly as it seemed to. Of course, mine still might have been more aggressive since I was younger than her and have a frighteningly high Ki67 (seriously, I don't want to even say it because I'm afraid people will start imagining my name on the "List of Angels"). That theory doesn't make me feel great either.
Part of the reason I have a hard time letting go of the guilt is because I do have family history. Granted, I had less at the time because my mom hadn't been diagnosed yet, but I still had a grandmother who had it in her 60s and a great-aunt who had it in her 50s. I knew I should probably start getting mammos a few years short of 40, etc but at 28, BC just wasn't on my radar yet. I thought the only people dxed that young had much more extensive family history than me. When I learned that the vast majority of women, even young women, have ZERO family history, I felt really dumb.
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I have the same feelings..... I was diagnosed a week before my 32nd birthday. Just a few weeks ago. My tumor (GOD I HATE THAT WORD) is huge and I feel like it's growing more and more every second of the day. I feel like I'm carrying around this monster and I'm reminded of it every second of the day because it's getting uncomfortable (itching, burning, dimpling, etc). I want it out like yesterday..... but I don't even see my oncologist until 5/12 and That seems like a lifetime. UGH Sorry to vent on your post but I can understand completely. Don't feel guilty, this beast is something fierce.
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I understand the guilty feelings and I understand the feeling that the dang thing just popped up out of nowhere!I found mine in the shower on 10/12/13, I was doing my normal shower routine and when I put the rag under my right breast I felt a lump. Now mind you, I did the same thing in the shower everytime I showered and I NEVER felt a lump previous to that day. I still don't understand that part. I never did self-exams and BC was nowhere on my radar. I was 39 at dx and knew nothing about BC other than the pink crap.
I have wondered if I took better care of myself if that would have made a difference, I was/am overweight when dx'd. However, I breastfed and had my first child before 20. I didn't take birth control either..so who knows.
((hugs)) I have found it easier to just "get through this" and not ponder those questions or guilt feelings too much.
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FL_sunshine and tangandchris, we are way too young for this crap!
FL_sunshine, that's awful that you couldn't see anyone sooner than the 12th! I hope they were able to squeeze you in earlier. Ugh, I remember the waiting game. I got to see my onc four days after I was diagnosed, but I had to wait a week for my biopsy results. It was torture!
tangandchris, I feel guilt about not taking better care of myself too. I was soooo dumb about environment toxins. I heated food in plastic all the time, used personal care products full of chemicals, ate tons of non-organic bell peppers and apples (both found on the "dirty dozen" list). My cancer is highly hormone positive so I do wonder about the estrogenic products.
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