How do you trust that it was 'caught early'?
The first thing I heard from many people when I said I have BC is, "At least they caught it early." I don't get it... how do they know we caught it early? Maybe they just assume because of my age (30)?? Or because I don't look particularly sick? I don't know. But the larger question is, aside from the random comments, now that I've had my surgery, got the path report, etc. how do I trust that I am going to be OK?
All my doctors seem very optimistic, except my oncologist who for some reason seemed extremely concerned & I almost felt like there was something he sensed that he wasn't telling me.
I'm starting chemo in a couple of weeks & I know that's supposed to take care of any stray cancer cells and lower my risk of recurrence. But how do they know I don't already have mets?? My blood tests were OK but they did no other scans or anything. People keep saying I'm healthy otherwise so it's not a concern, but I'm NOT healthy otherwise. I have had a chronic illness (fatigue/pain) for 7 years and was on disability when I was diagnosed with BC. No one seems to think there is any connection but I can't help but think there must be!
I also worry that my path results aren't accurate. They didn't repeat the hormone-receptor tests, just used the stats from the initial biopsy. How do they know those results are accurate? What if they give me the wrong meds because they didn't retest the tumor?
I have long mistrusted the medical system, which has indeed failed me more than once, so it's just really hard to trust that this is treatable, that I really am stage I, that I really will survive... I feel like I'm walking around thinking like someone with stage IV BC. Anyone else feel like this at all???
Comments
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To me caught EARLY means NO NODES INVOLVED!
Mena
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indenial, I know exactly how you feel. I would get the same reaction from friends - "at least you caught it early!" And I would be like dah! did I? No I didn't! but that was my case! (my age 37)
Nobody in the medical field said that to me though.
For me early is stage 1, smaller tumor, lumpectomy option given vs mastectomy etc.
I trust the medical community a lot. You can be very open with your medical oncologist. Tell him/her your fears and concernes. Be frank and build that relationship, you are going to be with this doctor for a long time!
My pathology was also done on the initial biopsy sample only. That was the one that showed the er+, pr+ etc. Nothing was repeated after the surgery! ofcourse the margins were checked for cancer spread.
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My understanding is that early stage includes Stages 0 through IIIa. Nodal status is not necessarily an indicator of spread. Many Stage IV people had clear nodes after surgery. Cancer can spread through the blood without entering the nodes.
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Comments like "at least they caught it early" are meaningless, usually uttered by someone who knows nothing about BC. The truth is none of us know if we will develop mets or not, unless already diagnosed as stage IV. You can live your life worrying about it or go on and live your life (easier said than done I know) and whichever you choose will not affect whether you get mets or not. My advice? Do whatever treatment is necessary, have confidence you've done what you can to rid your body of cancer, use moderation as a watchword (for food, drink etc) and get on with your life.
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You can insist on having baseline scans done prior to the chemo - that is really the only way to know whether or not it's hiding someplace else - although even tests such as those can still miss something if it's just too early to see it. My oncologist runs the PET (or full body CT if ins. balks at PET), full body bone scan and ekco cardiogram (I was having adriamycin as my first chemo) prior to chemo. I also insisted that they retest my receptors at my time of surgery, as the biopsy showed I was triple neg. I, of course, was quite upset and wanted the lumpectomy path report to also retest the receptors - and I remained triple neg, but at least I didn't have to second guess through my treatments and the years. I would definitely suggest to your doctor that you wish to have baseline testing done. This is your right and frankly, I would question any doctor that does not require such testing. It's your life - why should you not be going into this with as much info as possible? I wish you all the best and a safe and easy journey.
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I agree with gillyone "Comments like "at least they caught it early" are meaningless, usually uttered by someone who knows nothing about BC".
Yorkiemom, I didn't know this: Many Stage IV people had clear nodes after surgery. Cancer can spread through the blood without entering the nodes. Scarry!
indenial, looking back even I think about "signs" I might have missed about getting cancer. Maybe I could have caught it 'early'. Thoughts like these are pretty normal after such a diagnoses.
I did have a PET scan done before my mastectomy. Maybe you could request your MO for that.
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There are some phrases that others utter that really light my burners. I'm getting more tolerant as time goes by, but "at least they caught it early" is still one of them. "Early" as opposed to what? People say stuff like this in a lame attempt at comforting us. Some of my other triggers are these:
- What's your prognosis?
- Which breast did they take? (Glance down, left, right)
- How many nodes were involved?
- What's your stage?
- Did you bring this on by (choose one or more) your stressful job, your diet Dr. Pepper, your insomnia?
- When will you know if you're cured?
- (Here's one of my favorites) Are the doctors hopeful?
And yes, I guess my cancer was caught early. After a perfectly normal mammogram in June 2011, I saw something odd on my breast in September 2011 and was diagnosed before I died of it. That's early, I guess.
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I just think they don,t what else to say, and I just trust in my faith and remain Positive never giving up HOPE, and I am now an 19 yr Survivor this yr, (Praise GOD)msphil idc, stage 2, 0/3 nodes, L mast, chemo( cytoxin, adriamycin), radiation and 5 yrs on Tamoxifen. and all while making wedding plans was in the process when diagnosed.
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Natlie, it is very scarry! Part of that has to do with LVI (lymphovascular invasion). Low scores mean a better prognosis. It is on some pathology reports.
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"Was it caught early?" is still a question that I struggle with. As sbelizabeth said above, "as opposed to what?"
Now, I'm struggling with, "oh, so you're in the clear now?" At first, I made the mistake of trying to explain that - once you've had breast cancer - you're never, ever REALLY "in the clear", but then had to contend with, "oh, you need to be more optimistic!" Argh! Now, I just smile and say, "I hope to be fine". And that's the unvarnished truth.
It takes a long time to trust that you're going to be okay. I'm not sure any of us really, truly loses that fear that it might come back, but - I think - we all, somehow, arrive at a place of acceptance. It is what it is. We, all, hope for the best and, at some point, we stop thinking about it all the time
But that little sliver of doubt? Never really goes away.
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Hmm well I'm glad to know i'm not totally crazy, not the only one who feels like this!
Although I am node-negative, I did have LVI, which for some reason scares me even more... maybe because the implications aren't as well understood. I also had multiple tumors, which my onco says increases my risk for recurrence... and also isn't well-studied. I feel like the Stage I statistics might not totally apply to me, but maybe that's just my paranoia!
I haven't even started chemo yet & I'm already anxious about how I'll feel when I'm done active treatment. It's weighing on me that this is something that will affect me for the rest of my life, both mentally & physically. I already had PTSD before being diagnosed with BC (physical/sexual abuse) and I feel like I'm developing a similar PTSD-type reaction to cancer. The difference is that this time there was something IN MY BODY that could kill me. No amount of locked doors and self-defense skills can protect me from my own body. I feel a loss of control in so many ways.
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If you are unsure of your diagnosis you are entitled to ask for a pathology review from another hospital and get a second opinion.......I did and there were huge differences in terms of KI-67 and grade.........and hormone status was different too...but enough similaritiees for me to know that I was stage 3A.........and I was told i was locally advanced.....
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Lily55: Now that's really frightening - to have ANY difference in path results, let alone HUGE differences between two labs.
Msphil: Wow! Congrats to you. Keep on keeping on!
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I went in with a lump in 2010. Had a mammogram & ultrasound. "Scar Tissue" no need to worry. 18 months later I was back at the imaging center. They KNEW I had cancer before they did a scan. The radiologist looked at the previous scan and couldn't believe they hadn't biopsied. So the did another mamogram, ultrasound and biopsy that same day. Before I left the doctor was telling me that I'd be hearing from the cancer navigator and my pcp with recomendations for surgeons and oncologists.
The first person that said "at least the caught it early" still hasn't walked back from where I blasted her to.
I feel bad about that but... As it happens, I'm seem to be one of the lucky ones, while my tumor was biggish and had several little friends to keep it company, it doesn't seem to have spread. But I still give anyone foolish enough to talk about "early" an earfull.
Good luck indenial!
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Indenial
You are so very early in this process- I know it seems impossible, but these concerns, while very real, will recede over time.
It is so hard sometimes to talk to the doctors--I remember not really wanting to hear the answers- and I would craft questions that would be almost impossible for them to answer--and every time they did, my whole body would tense up waiting for the answers. That said, if you sense that your oncologist is not telling you something, then ask him directly. He could have been having an off day.... or maybe you need a different oncologist--one that will speak openly and freely to you.
I think having faith in your medical team actually makes a great difference in your mental state now and going forward. Maybe you can think about that and work with other medical professionals that inspire you more.
I won't say it will go away forever, but we do get to choose how we live our lives. I would imagine in 2-3 years, after your treatment and working with your new/old doctors, you might be surprised at how little you think about bc. And, if that does not change, I would highly recommend speaking with a counselor. I did that all throught treatment and it really helped me.... do what works for you.
I am almost 5 years out, lumpectomy, chemo, radiation. I am not lying when I tell you that I rarely think about bc--maybe 2x a year at my visits, which will be ending in the fall.
Could it come back? Yup.... Will it come back? I don't know. I also don't know if I will get hit by a bus, have a heart attack or come down with something else--and I don't give those things a thought.
Of course, having had bc certainly puts it in your mind.... and I do remember oh so well all of those days where my only thought was a tickertape in my mind...cancercancercancer...... I do remember it. And I hated every minute of it. But I, like you and everyone else here, did what I had to do to get to the other side of it. And the other side is great... I promise you. I feel like I lost 1 year of my life to it..but the past 3 years have been great and I fully expect great for the next 30 years.
You are very young- and they will watch you closely. I am so sorry that you have to go through this, but please know that there is another side--most people do just fine.... believe that you will be one of them...
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indenial. I don't think you ever can trust 100% but you also dont need to spend every waking moment second guessing them either. You obviously have reasons to distrust the medical community and I get that...I feel the same way about my brother and parents treatments. Having said that I already have the fear factor because I am the poster person for that so I dont need any help being more suspicious and/or afraid. Make no mistake I did my homework. I talked to friends who had bc, read a lot of material on bc and read a lot of posts on this forum as well. Even armed with all that information there are no guarantees for any of us early stage bc or not. I am Stage II, Grade 1. Supposedly, according to my BS, I have a wimpy cancer. Sounds encouraging but I also know wimpy cancers can go haywire too. This same BS was stunned a micromet was found in the SN. My ONC ordered the Oncotype test which was a godsend both for treatment and peace of mind. It isnt perfect either but more and more oncologists are using its data to determine treatment. Plus it gives you a snapshot of how aggressive your cancer is and the likelihood of a recurrence. Mine came back at 11; 8% chance. Those are stats only. Of course they dont know for sure but is anything 100%? If you have concerns I would talk to my ONC. I really like mine. She is my lifeline. So I pray and leave my fate in God's hands where it was to begin with. Diane
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OK I think I figured out what I'm really trying to ask here.
I read the 5-year survival stats for Stage I are around 98%. So does that mean anyone diagnosed Stage I has (statistically) a 98% chance of survival, even if they may have actually had undiagnosed mets?? So if screening for mets isn't routine in many practices, does that mean Stage I probably encompasses some women who had undiagnosed mets at diagnosis, but 98% of them still survive at least 5 years?
Am I making any sense??
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Maybe that 2% are the ones who had undiagnosed mets?
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I too worry about the accuracy of the path results. I don't believe the hormone receptor tests were done on the actual tumour, but just the biopsy sample. I just feel better knowing I am getting hormone therapy as opposed to the test wrongly showing as ER- and me missing out on that therapy.
I also worry that there were 6 weeks between my SNB and BMX. What if it had spread to the nodes in that time?
I don't think these alternative scenarios would have altered my treatment anyway so I try to not worry, but I think these concerns are normal when we are in such a serious situation.
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And I totally understand the fear of LVI. Mine was "very extensive" yet my onc isn't that concerned. I can't get it out of my head.
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I'm pretty newly diagnosed and am appalled at some of the comments I've had said to me. I know people are just trying to be helpful and encouraging, but I cannot believe the insensitivity of some of the remarks I've heard.
My most unfavorite that I have heard several times: "Oh, you're a strong person, so you'll be fine" Really? How the hell do you know that?? Would you say that if you saw me in a fetal position and crying in the privacy of my home?
Also, I have had to actually console two co-workers who broke down in tears when I told them. OK, I guess that means they are really fond of me and maybe I should be flattered, but come on, how am I suppose to react to that??
Telling people about my diagnosis has been one of the hardest things for me about this whole thing. On the other hand, I did have my BS actually say to me on my first visit to her, "we caught this early, that's a good thing" and I did take some comfort in that coming from her.
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Iron
I can really resonate with your comments. I found the most exhausting part of all this was telling people, so very early on, I decided not to. I simply told those who absolutely needed to know... I know I lost some support and there were actually people who were angry when I told them after treatment, but I had to do it my way. Everyone is different and the emotional toll of telling people THEN having to manage their emotional reaction was too much for me.....
The benefit was, at least in my career, that every day was not spent talking about BC.... doesn't mean I was not thinking about it, but I had select people from whom I got support and I would go to them when I needed it.... plus I knew I could not bear all of the "how are you feeling" comments, no matter how well-intentioned.
whatever works--it really is all about you right now.....
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My question is why the double mastectomy? I too, felt the same as you, that I wasn't being told everything! But I had my path reports read by 3 different doctors and all had the same DX! Also, two of the three, with one being MD Anderson, had the same treatment protocol! But only one of the three suggested that I have a mastectomy the other two were on board with lumpectomy plus chemo and radiation. And I was DX with Stage II grade 3, triple negative!
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Iron,
I was very upset when I heard the word cancer.
I don't know anyone personally who has had cancer...I know of some people, via people that died of cancer. And I guess I did know one person, a little girl from my sons pre-school who i found out was diagnosed in kindergarten and then died in 1st grade.(she went to a different school)
i have chosen to tell very few people so i dont have to re-hash. The rest of the people I left up to my husband, i also created a caringbridge blog to post updates, again so I won't have to be bothered re-hashing.
I think people's reactions can be from so many things.
Cancer is a scary word...didn't I think it meant I will die from this? , why wouldn't they think that too!
Maybe they only know of people who died from cancer?
Haven't we all heard horror stories of chemo? (I start tomorrow!)
I blubbered like a baby telling my SIL on the phone...and I KNEW it "wasn't so bad". Lol
I find that those who really and truly have knowledge of cancer will ask informed questions...who is your doctor, do you have a treatment plan, I can put you in touch with a survivor, pathology, staging... (All the things I had to go online and learn about)
Those with no knowledge get the head tilt and at times lip quiver, or they totally avoid you when you pick up your kid from school.. They are ignorant of "how this works". , just like I was.
I now consider it my job to inform people if they ask. Give me a head tilt and I will tell you why things are good!
There are so many people that get caught up in what is said to us as a cancer "victim", "survivor" , "patient" or whatever the correct term might be.
I've read a Lot Of posts on this web site in regards.
I don't think I know ANYTHING to say to a fellow sister that can't be taken wrong somehow.
What is OKAY for people to say to me? Or better what is OKAY for me to say to someone else???
Me personally, I have been told to stay strong, that I am strong and you know what. I AM! I prefer to think of myself like that, I'm glad others think of me like that, it is a COMPLIMENT. Sure beats, "but you are weak"....don't think I would be happy hearing that!
People say they are praying for me. Pray away! I LOVE it that so many people have faith and are willing to do at for me.
If anyone has that one "key phrase" to say I would appreciate it. I start chemo tomorrow and I won't wish people luck, I won't tell them to stay strong, I won't tell them they look good, i wont tell them they will beat it, because apparently too many people are offended by it! I've become stuck in the political correctness of cancer and will now look like an uncaring individual as opposed to someone who is trying to find something positive to say.
I so wish I knew how to start a new topic, because surely I need help in finding good, safe things to say! Lol
Sorry...I've been looking for a place to get those ideas of "nice things" to say to our sisters (and brothers) . Do NOT take offense. I am seriously looking for help!
To answer the "how do I know it was caught early"? I would say by staging? At least that is how I explained it to my children.
Pat -
I too have had these concerns. I spoke to my med oncologist about statistics regarding my diagnosis and the expected 5 year survivability rate with chemo and radiation, which he did supply. However, he requested I not try not to focus on these statistics, because in the end, it is either 0% or 100% that the cancer will recur. He suggested I concentrate on living each day, do one nice thing for someone every day without expectations of any return, eat 5 servings of fruits and vegetables, get my heart rate up for 30 minutes every day, and pay attention to my spiritual side, regardless of my beliefs. This advice and support from my family and friends, has really helped refocus my thoughts and reclaim my life.
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Janet, I really appreciate your oncologist's advice to you. Thank you for sharing them.
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