"At least you caught it early"

Anonymous

Why do people who have no information of my diagnosis details tell me this? It's baffling.

Does anyone else get this?

MaxineO

Baffling, indeed. a) They're too scared to consider an alternative. b) It's a pat response to something they don't know about...lots of people don't even know the significance of cancer spreading to lymph nodes. They know 'lumpectomy' to 'stage 4' but everything in between is a bit hazy. That's my interpretation.

annika12

Early after my diagnosis my husband was struggling with peoples stupid questions and responses and called a friend and ask what he should do ....thus friend said "pray they will never have to know " I think that was a great answer !! People either just don't know it it scares the crap out of them and they say something stupid !!!

labelle

I hear this a lot too and I'm getting sort of tired of it. Maybe part of it is my own need to minimize this disease to my kids and co-workers, to at least not go down the "this might kill me" road of thinking, but even "caught early" isn't that great IMO.

I had surgery, a fairly large chunk of my breast was removed and I'm getting irradiated (the other option was a mastectomy of course-both options suck IMO) and basically being neutered w surgery and/or hormone therapy is what the doctors are strongly suggesting as the next step.

Well, at least I'm not dead. That is something I suppose, but this "at least" stuff is getting to me. No matter when it's caught the treatment for breast cancer is brutal and the outcome uncertain.

Still, I'm having a hard time communicating this to my family and co-workers. Perhaps it is our own desire to be seen as strong, hopeful, not negative,etc. that hides from others the reality of this disease. No matter what stage you are diagnosed with it sucks and treatment options suck too. Those pink ribbons are nice, but until you are diagnosed with BC I don't think you get the real picture! Even I, who helped to care for my mother thru all the stages of BC, didn't REALLY understand it until my own diagnosis. My mother, like many of us w BC, was always positive, willing to try and did try everything her doctors suggested and up until the very end seemed to believe and made us believe she could beat BC. Maybe we (people w BC) should stop trying to brave and do a bit more wallowing, then maybe those around us could see what a real sucker this is. Being diagnosed early isn't that much of a bonus IMO, it's certainly not just a little bit worse than not getting BC at all.

DiveCat

Hi, sorry to intrude in your threads...my mother was originally dx'd almost exactly 8 years ago with Stage III with ILC and she got this often too (and I heard it too from people who heard about my mother's diagnosis). It drove me crazy as well as yes, few of them knew her actual dx, and even when they DID they still thought it was "caught early". Depending on my mood I could be a little snippy and tell them "19+ nodes is NOT early". I don't know why people say this, I do think it might be a combination of ignorance or naivety, self-protection, or believing that if someone is getting treatments they must have had it "caught early" in order to be able to treat it (and even Stage IV patients often hear people asking them "when will your treatments be done?"...how about hopefully never because they are only done when nothing works any longer?). I think people WANT to believe that it is early because in their mind "early" = curable...and again, the curable thing comes from I think the mainstream media/pink campaigns about how "mammograms save lives", "early detection is the cure", etc. Very few people who have not been through it directly or who are very close to someone who has gone through it understand that invasive means invasive, etc and that being caught "early" (whatever that means) does not mean nor risk of recurrence or metastatic disease (whether you are Stage 1, 2, or 3). And yes, hopefully they never will know. I wonder what some of those same people who told my mother or me they were glad it was "caught early" would say now if they knew she had metastic disease (only a select few in her real life know).

wintersocks

I hate that phrase. yes, get it all the time too.

Nancy2581

I get this too and though I could be a lot worse off than I am my cancer wasn't caught early enough to me. There was a lymph node involved and LVI. Every time somebody says "at least it was caught early" under my breath I am thinking not early enough. *sigh*

Redporchlady

I think we all would like as low as number as possible because at least the stats look better but no matter what stage you are we always have the chance of recurrence but I do know that I have to live each day I can and not worry about tomorrow until it get's here.  I also don't want to tell everyone that because I have Triple Negative Breast Cancer and I am already Stage 3a and it is in my lymph nodes that I have a high chance of recurrence in 3 years.  I just don't want to waste the time on the negative and focus on doing what I can today to make sure I can live as long as possible.  For me that means looking at retiring earlier now and doing everything I can to enjoy each day. 

Anonymous

My stock answer is to smile serenely and say, "I'm glad we found it when we did." Which is true. With not getting regular imaging due to young age and having Her2+ type, I could have easily been mets from the start. But what if I were Stage IV out of the gate? That statement (and it's always phrased as a statement, not a question) would really make me feel like crap.

I think it's also the concept of responsible/irresponsible. I think because of pinkwashing people think those who were dx'ed anything beyond very early stage were irresponsible and didn't get mammos, ignored an obvious lump for a long time, etc. So when someone they know as responsible is dx'ed, they assume it was "caught early."

I admit I thought the same. I didn't think my lump was cancer but I figured that if it was, it wouldn't be any more advanced than Stage 0 or I. After all I did the right things - got my annual physicals, did self-exams (although I admit not very thoroughly) and went to the doctor after finding the lump without waiting to see if it changed with my cycle, etc. I figured if it was cancer, I did the "right" things so I would thereby be rewarded with an early stage dx, a cure and a long life. I even had no idea that size of tumor mattered in staging (I had a large one) and didn't know anything until after I had the ultrasound that showed that my lymph nodes were enlarged. I had to go on the ACS website to figure out what the heck lymph nodes had to do with a breast lump! That was a rude awakening, which has led to a lot of self-doubting, second-guessing and is one of the reasons I've started therapy.

And labelle, I am certainly and painfully aware these days that early stage is not a cure. My mom is an early stager so not only do I worry about myself, I worry about her too (but also feel a bit jealous that she had access to mammograms and I didn't which makes me feel selfish).

DiveCat, I am sorry about your mom's progression. Kudos to you for being so proactive in protecting yourself though.

tangandchris

I blame this type of thinking on pink washing. Weeks after my dx a friend said, "well at least you caught it early, right?" I didn't know what to say to that at the time, but man do I now. I caught it early sure, I felt my lump for the first time in the shower and went to the doctor promptly. Within a week of finding the lump I was having a mammo and ultra sound. The radiologist told me on the spot it was cancer, but we'd need a biopsy to know for sure.

I was 39, never had a mammo and was dx with Stage 3 out of the gate. What does early detection even mean for someone like me??

Anonymous

tangandchris, I hear the much-touted stat that only 6-10% of breast cancers are Stage IV from original dx. I'd love to see a meta analysis to see how that might shift with age at dx, subtype and grade. I would bet that women under 40 (maybe even under 50), grade 3, Her2+ and TN have greater percentages of those dx'ed Stage IV from the beginning.

It seems like women in my situation (young, grade 3, Her2+) have a disproportionally percentage of those dx'ed at Stage IV. Maybe I found it as early as I could've. That's helped me let go of the guilt somewhat. I still need that therapy though.

tangandchris

What guilt are you referring to? I'm curious because I have experienced a form guilt too and I'm not quite sure what or where it comes from. Like I feel guilty that I "should" have found it sooner or should have done this or that. IDK, it's weird. and it sucks.

I apologize if you already said, but what was your age at dx?

Anonymous

I was 28 at diagnosis. I do have family hx but it's all postmenopausal and the most significant connection is my mom who was dx'ed the day I was supposed to start chemo.

I feel guilt that I didn't do my self-exams diligently. I would feel myself up in the shower for 30 seconds when I remembered but I never did the whole once a month circling the boobs for 20 minutes sort of thing. I never had lumpy breasts and figured an abnormality would be easy to find. Well it was because it was huge! I just wonder if I missed some smaller, subtler change earlier on.

The other thing I feel guilty about is how I reacted when I found it. I had recently moved and didn't have a PCP yet since I wasn't due for my annual for a few more months. I didn't know what to do so I just found someone off the internet. They took me relatively seriously but they moved slowly. I had to wait for an initial appointment, wait for the ultrasound, wait TWO DAYS for the imaging place to get the report to the PCP located right across the street. Once the head of staff got her hands on the report, she set me up with a surgeon the next business day. She was the one truly awesome person in the whole process. Biopsy followed and I had to wait one agonizing week for those results. In retrospect, I wish I had utilized my contacts more. If I had called a family or friends maybe someone could've pulled some strings and gottne me into see someone a lot sooner.

Logically I know I did the best I could with the information I had at the time. But it's hard not to let the pinkwashing get to me.

CanuckPrincess

Yep...and "caught it early" for me is a cancer that measures 10cm x 3cm x 4cm. I laughed and told my doc that I didn't even know my boob was that big!

WinningSoFar

At least you caught it early.

I say: I hope so.

And that's the truth, I hope. The person saying that is just trying to be supportive, in their somewhat uninformed way. They think it's all about how quickly you catch it, rather than the more important aspect of how well the cancer responds to treatment.

sbelizabeth

"At least you caught it early." I heard this quite a number of times in the last three years. And I did, in fact, respond with "I hope so" a couple of times, but it engendered a barrage of nosey questions I didn't want to answer. Yes, the person is being supportive by saying whatever pops into their head as being "helpful."

I actually made a list of stuff people said to me that made me wonder where they got the nerve.

"This is NOT going to be easy." (Said by a family member before my chemo started. What a shock. I thought it was going to be a picnic.)

"What's your prognosis?" (Everyone fields this one sooner or later. I learned to say, "Same as yours. I'm going to live until I die.")

"What stage are you?" (I've made no secret of this information, but I cringe when someone just bald-out asks. What an invasive question!)

"Which one? <glance down, left, right...> (I just have no answer to this.)

"Did they get it all?" (This is code for, "are you going to die pretty soon?" My response is, "I hope so, all this time and effort would be such a waste if I fell over dead right here.")

Lily55

I love your answers........the Which one is just so rude.......I have no answer either.........its one of the reasons why I don´t tell people..........maybe "I hope you can´t tell" is the best answer.........

wintersocks

selizabeth,

You are so right, these questions come up time and time again, they are intrusive, insensitive and astounding. I am pretty certain I did not ask such questions when I knew people who had cancer, before my own dx.

I got, 'This will inevitably shorten your life', followed by tears

and on FB someone I had not heard from in 20 years; 'what's the prognosis?'

And today from a good friend 'After a cancer dx, it's just about buying time, it always comes back'

as Lily says, I do not mention it any more. However I am deeply tempted to insult some about their ugly faces etc

glennie19

sbelizabeth,, those are some awesome answers!    "I'm going to live until I die!"   Excellent!

wintersocks,  I can't believe someone would say that to you!  People can be such jerks!!

labelle

Those are indeed awesome answers, sbelizabeth.

After taking off 3 1/2 weeks due to surgery, it's off to work I go tomorrow (right after practice radiation stuff in the morning) so I'm going to try to remember some of your answers.

I do know most people, including my coworkers mean well, but I'm dreading going back to work. Not my work/job itself but with the questions/looks I'm bound to have to deal with from everyone there, from the secretaries right up to my boss. I've been pretty frank about my diagnosis, but well, pinkwashing knows no bounds. I worked in October (after my diagnosis/before surgery) and I thought that damned month would never end! Ugh!

bride

People do say some very odd things. Besides the inane you caught it early, I got questions like when's your surgery, are you sure you need all this chemo (neoadjuvant) before therapy, and my personal favorite, when's your hair going to fall out. There's a great book called Breast Left Unsaid (and it's not great just because it mentions this board) that gives some good insights on how to deal with coworkers.

I admit that one place questions felt natural was while I was staying at an American Cancer Society Hope Lodge while doing my rads. There it was common to see women comparing their rad taped lines while in the communal kitchen and talking about staging was just like talking about where you live.

Among my friends two groups seemed to emerge: one of the you caught it early type and one of the I did some reading about your cancer, what food do you want? My favorite response came from my handyman who took one look at me, told me his sister-in-law was a survivor and then came up with odd visits saying things like I've been washing so and so's windows all day and I'm in a groove, can I do yours? And never charged me a cent. Most people are both afraid of cancer and of saying the wrong thing. Some get over their fears and can become friends. I'd ignore the others

Redporchlady

It is very hard to deal with how people can treat you.  My mother-in-law had a kidney removed due to a tumor which is really bad.  She was fortunate that she did not have to have chemo or radiation and it was a very slow growing tumor so the chances of recurrence were very low.  We were there for her, we helped her in all ways that we could.  She was so appreciative of everything we did for her.  We made it all about her.  Fast forward to me having cancer now and she has not even once asked how I am and she goes on and on with my husband about how her condition could not be treated with chemo or radiation.  For my birthday she brought me pineapple when I was having horrible mouth sores from the AC.  I still thanked her and gave her a hug but that is the only act of kindness she has had during all my chemo treatments.  My husband finally had to tell her that this is not about her and get stern with her because I am fighting nausea, fatigue, neuropathy and all the other things you all know we have to deal with on a daily basis with chemo.  On a good note - my friends, children and co-workers have been amazing and our freezer is always full of food.  I feel really blessed there and thank God for my wonderful husband and that he is not like his mom!!  (Sorry had to throw some humor in there)  Good luck all you gals here as we go thru chemo treatments during Christmas.  May we not be fatigued or sick and we have our family around us! 

Hopeful82014

Dear Redporchlady - First, I have to tell you that I LOVE your screen name. It summons up images that make me smile and relax a bit every time I see it. Simply by being here you are lifting spirits - thank you.

I'm sorry that you're dealing with mouth sores and all the rest that goes along with chemo - especially at what is supposed to be such a happy time of the year, and one that is filled with many favorite, traditional dishes. Do remember that you get double portions next year, since you're probably missing out on a lot of them this year.

I'm sorry, too, that your MIL is so blind and oblivious. It sounds as though that's made up for by the kindness and thoughtfulness of many others around you but that doesn't make it any less puzzling or painful. It's a good sign that your husband stepped in and spoke up for you.

I hope that despite all you're going through your family will feel good this coming week and be able to enjoy Christmas - a very different Christmas than usual but one rich in all that matters most.

Redporchlady

Hopeful - Thanks, we actually live in a big farmhouse and I have a wrap around porch that I painted the floors red and I have a red tin roof.  Red is my favorite color although maybe not so much after chemo treatments with the Red Devil! 

I love your idea of double portions next year!  I have been lucky with not having much nausea but you never know when it hits so I eat small meals. 

Thanks for your kind words and I hope you have a wonderful Christmas with your family and I pray for health for all of us!

slv58

Sbelizabeth, I love your answers as well and hopefully my chemo brain will allow me to remember some of these! My boss actually said the 'which one' to me! I was floored and just blurted out 'why, do you have a favorite?' I realize this was probably not the most appropriate but it makes me laugh remembering!

I personally think people say what they do because of ignorance. I did not know about types of breast cancer and had a rapid learning curve. I understood stage but little else, and was quite influenced by the medias wish to think that breast cancer is largely cureable 'if caught early'. I had yearly mammograms since I was 39 (dx at 54) never had a call back- don't have dense tissue and never felt any lumps... Until. I assumed that because I was so diligent in breast health that if I had a problem it would be caught early and likely cureable. I pray that I have a long life but realize how much more there is to breast cancer than my naive former self. I'm sure people just aren't sure what to say and want to be supportive and assume that breast cancer is cureable if caught early.

Having some 'go to' answers are well worth remembering. I remember fumbling when a distant friend of my husband asked me what my prognosis was! Now I have the perfect answer.

The worse one for me was someone telling me I could cure my cancer by eating celery! That still leaves me dumbfounded. Really?

Hopeful82014

You know, your porch is pretty much as I was picturing it! As to the 'Red Devil' association, maybe you'll have to spend more time on that porch next summer savoring strawberries, and then raspberries, to clear out lingering memories of treatment?

Take care - have a good Christmas and a bright new year.

Redporchlady

Ontario....yeah really celery. I had people telling me about essential oils, Yoli, vitamins and holistic approach. I understand they want to help but I just reply I am at a top Cancer hospital with a team of oncologists and researchers. I know this experience has taught me a lot in what to do in the future and the things that really helped. I hope I can help others and that this whole experience is why I am going thru it. Strength to all of us. I just completed Round 3 of my 12 weekly Taxols. Counting them down.

ppplocke

Honestly I could not read all of the posts as I have two of three kids emerging from finals and, well, all of Christmas since my husband does nothing for it! To me and my team the term "early" means you are still curable...and you are curable from stage 0 to stage 3c. You are only not curable at stage 4. So early is a good thing! It means anything short of "you are terminal".

sbelizabeth

More unsolicited wisdom that was shared with me--

Eat broccoli.  Lots and lots of broccoli.

"Big pharma" has suppressed the "real" cure for cancer because they won't make money off it. 

Radiation will give you more cancer, don't do it. 

Don't eat ANY sugar.  Cancer eats sugar.

Don't eat ANY meat.  Cancer eats meat.

Your body needs to be acid.  Cancer eats alkali.

Antiperspirant causes cancer.  Don't use it.  (This one seems to me to be a bit like closing the barn door after the horse has fled, but whatever.)

Bless those who love and care for us, though, and want the best for us! 

Chloesmom

I had a neighbor call and ask what size bras I had worn after my BMX. She had gained some weight and was looking for a bunch. Fortunately I had been smaller than she was in the first place.

Another called to see how I was and to ask if I was going to do reconstruction. (Which I'm not). Does this change anything about how I come across to her? Will she be gazing at my chest to see if the foobs match up to the killer boobs that are thankfully history?

"And you need to know why? ". " are you really stupid or just come across that way" would be my DHs favorites but I was brought up to be nice. There was the story about the 2 ladies in the hospital that just gave birth. One bragged to the other " when had my first child my husband gave me a diamond bracket, the other replied " how nice". When I had my second he gave me a new car..."how nice". When I had the 3rd he bought me a mink coat ...." How nice". Then she asked the second what HER husband did. She replied. When I had my first child my husband sent me to charm school. It used to swear all the time and instead of BS they taught me to say "how nice". Sometimes we just have to shake our heads and walk away

208sandy

Yes, we were brought up to be "nice" but I gave that up years ago when I noticed that the "squeaky wheel got the grease" - I just don't really care what "others think of me" I feel much better when I am out on a limb on my own so to speak - I have many friends and most of them are very independent and at least to me they are frank and unfiltered just as I prefer to be. Of course I was one of the 60s generation and oops a feminist and still am one today - seems to me that it must be pretty hard to be a woman and not be a feminist.

My favourite tip which I have been given many times by two sisters who live in my building is I should be drinking wheat grass smoothies(?) because the wife of the choir director at their church was "cured" of her "terminal" cancer by doing the same - they've been suggesting this to me for two years now even when I've said "it doesn't work, if it did, we'd all be drinking the stuff".......