Myths/Misconceptions about MBC- please share with us!

Mavericksmom

Does anyone know if you can get metastasis without having any positive nodes?  If so, are there statistics about that?

I had a 1.0 cm IDC, grade 1  0/24 nodes in 2003.  (lumpectomy, re-excision for clean margins, 4 rds A/C, 28 rounds of radiation

2018, same breast, 1.3 cm ILC, grade 2  no nodes taken because whole fat pad removed first time, and I already have significant lymphedema,  Mastectomy with DIEP reconstruction

Also wondering why,  if all under arm nodes were removed first time and none were taken out second time, that makes the second time node neg?  I know there are some nodes around the chest and neck.  Would cancer just not go to those? 

Myths or facts? 

pippy1963

Tina2 you give me hope. I just found out I have lung mets scared as hell and Im looking for other with lung mets.

I was told by someone at Pfizer( some supervisor) Friday that Ibrance probably wont be covered by our drug company. I was just told I have mets officially last week then had to hear that. I dont think she realized how insensitive she was being That night was my first 3 hour long breakdown. I know my breakdown was probably inevitable but she shouldnt have told me she thinks its not covered. Paperwork wasnt even put in yet by my doctor. I know looks like I'm got my hopes up about Ibrance but I feel it could be the right fit for me. Just hope I can get on it

pip

DivineMrsM

pippy, you are right. That was extremely insensitive for that person to flippantly say, oh, this drug probably wont be covered by your insurance. Where do these heartless people come from? I am slightly paranoid enough to think that some of them like scaring people.

Please speak with someone at your oncologist’s office about how to go about affording this medicine. I had a lot of fears about the same thing and when I was at the doctor today, I brought it up and they assured me there would not be a problem and they would help me get the meds if and when the need arises.

KelQ

Pippy1963 are you following the ibrance thread? There is a ton of info about how to pay for ibrance. Sorry that someone at Pfizer was so insensitive! My MO told me that if I wasn't covered or undercovered that there were many resources and grants available. Read the most recent posts on ibrance thread and ask at your MO office!

Karenfizedbo15

Oh My Word, Moderators, what a can of worms you have opened and rightly so! These ladies are voicing what many of us experience DAILY. I concur with ALL the common themes here... please note I am not in the USA/ Canada. This is a worldwide issue and needs addressing on a worldwide scale.

I am appalled every day at the serious lack of knowledge and understanding of MBC. Sad to say I include myself in this... I too was told I was cured 11 years ago and devasted to find myself back again in a completely different mindset. Here I am one year into an MBC diagnosis and still working full time... not for long though.

We are an ignored community, because people are frightened of us and for us... this is well documented. If Moderators can use this information and in some ways de-personalise it.... and by that I do not mean take our humanity out...just pull it together into the common themes. Then share worldwide ( we can help with that). We might just make a wee dent!

Maire67

Big misconception is that we don’t have a sense of humor...There is no way we can get through this without one. ( albeit dark at times)

We can share our pain ,physical and mental, with others with MBC. We don’t always share it with family or friends.

Those commercials are beyond annoying...instead of mumbling side effects ,say them loud & clear. Or even better stop advertising and lower the price.

Sara536

DivineMrsM, Re: disability application, In my school district, it was rumored that the doctors the district sent people to for disability evaluation were hand-picked for being very inclined to minimize medical status in order to save the district money. At one point our union advised us to make sure that (on a certain form) we put our own doctor’s name as the person to contact for work related injuries. I don’t remember all the details and I retired before I was diagnosed but this seems like it may be a similar kind of arrangement that your district has with the retirement system (but for illnness caused disability). I hope there is a way for you to appeal. You might consider checking with your union. So sorry you have to deal with this.

DivineMrsM

Sara, thank you so much for your concern! This happened to me about two 1/2 years ago, so I got a lawyer and filed a successful appeal and was awarded the disability claim. I have no doubt that doctor and the Ohio school disability place were in cahoots. (It wouldn’t surprise me if the rumors circulating in your school district were true. ) While the federal government quickly approved my disability claim due to stage iv bc, in order to get any money I had to file with Ohio too. I get less than $400 monthly, but it helps and I feel I worked those years and paid into the system. The Ohio school disability place is relentless, and always wants a yearly reevaluation, but to different places, not Dr. Gobbledysmack.

[my apologies for hijacking the thread]

nowaldron

I know many others have said this, but one of the misconceptions is that you look like a dying person. I just passed my three year anniversary of being diagnosed and I hardly look like a cancer patient. I lost my hair in the beginning, but it grew back. I lost a little weight in the beginning, but it grew back (probably too much!). I look so well that I actually asked a colleague of mine if people thought I was lying about having cancer. They see a chubby, full head-of-hair person and can't imagine that I could possibly be fighting cancer. Also, I never call in sick to work. I was actually lucky when I was diagnosed as I was on sabbatical from school so my colleagues never saw the worst parts of my treatment. The only thing they knew was that I had really, really short hair when I went back in Sept. 2016. 

Cheers and be well! 

MountainMia

As someone newly diagnosed with breast cancer, I'll tell you what I've heard repeatedly, though not in quite these words: breast cancer these days is no big deal -- a quick surgery, a few radiation treatments, and it's all like it never happened. And if you need chemo, boy that's easy compared to the old days! There's not much room in that narrative for MBC. I guess no one even has MBC anymore, much less typical SE of typical chemo.

Thanks for the question. The answers have been enlightening for me. Blessings to all of you.

runor

Mods, I do not have metastatic breast cancer, but might I ask you a question? What is your goal in writing this piece? Is your concern to convey real information without alarming anyone? Because if that is your goal ... it's the wrong goal and you will miss the mark. What I read being shared with you is that the weight and burden and impact of this disease, while often not obvious to the naked eye, is so much bigger than anyone expected. It is a battle we fight behind closed doors, after everyone has gone to school or work or to mow the lawn and we look at ourselves in the mirror and wonder who we are. Where did that other person go? What sort of future can we look forward to? Dare we even look forward to a future at all? It's learning to live knowing the rug can be yanked out from under you at any time. Or the rug has been yanked out and tough cookies for you, get up and carry on. Life and death used to be a philosophical discussion before cancer. But now it is the daily truth for so many tens of thousands of women. To convey these TRUTHS and REALITIES you have got to be willing to put pen to paper in such a way that takes all the candy coating out of it. This is hard, between the eyes, fist to the throat truth and to convey it any other way is to further misinformation and misunderstanding.

You have been given and will be given more hard earned information that you can present, bare and unedited, to the world for their digestion. Or you can spin it ...and by god we've all read so much damn spinned information that we could puke. Until diagnosed I was one of the ignorant because the information fed to me through media was just too fuzzy wuzzy and unclear. Not plain. Not real. So as not to scare me. Well, too late for that. I live everyday in some degree of scared. I LIVE, SCARED, EVERYDAY and that is the truth. So. Mods. I ask. Do you have absolute editorial freedom to present your information as raw and uncut as you can? Or are you under editorial restrictions, a 'flavour' that you are expected to convey? Who has ultimate final say over HOW you put this information out there? Does this matter? Damn straight it does.

AllyBee

Runor, you just described exactly how I have been feeling but have been struggling to express. I am scared everyday. Everyday my thoughts are consumed with cancer. I struggle to find hope even though these boards are so positive. I feel stuck. Unable to make plans. Unable to have a career or even carry on a normal life. My health is really good at the moment but the physiological toll is enormous. I don't feel I can talk to anyone about it because no one wants to believe I'm dying. I hesitate to post these feeling in the community because I don't want to steal someone else's hope. I just wanted to say thank you because you made me feel a little less alone today.

Ally

DivineMrsM

OH MY GOD RUNOR. I am standing up clapping for your amazing post!!!!

👏🏻👏🏻👏🏻👏🏻👏🏻👏🏻

Anonymous

Runor -- Thank you for expressing that very eloquently!

I've had mbc for 6 2/3 years. (Yes, I count every portion of a year that I get). I still work full-time as a college professor and have a good quality of life. Are there side effects? yes! What galls me is that even after all this time, so many people in my life still don't get it. The when will you be done with treatment questions are plentiful. -- I tend to say when they all stop working, but I like someone's comment about when I'm in hospice.

Unfortunately, I currently am going through treatments pretty quick I feel like considering the small tumor load that I have. I've watched the options list shrink considerably. It is frustrating when people will say " well at least you have options, cancer A, B, C or D doesn't even have 4 options available" I understand what they are saying, but unless you are staring your own mortality in the face and watching what you hoped would be a drug you were on for years become just a few months, I don't think they can understand.

The idea that unless you have BRCA 1/2 it can't be genetic --- I'm the 3rd generation with breast cancer with the years earlier fitting just as they say with genetic cancer. We did all of the various genetic tests available at the time and all were negative. The genetic counselor told us that it is genetic in our family....they just haven't necessarily found the gene yet. There is just too much of it in our family and it fits the genetic mold too well for it not to be.

Others have said this, but it needs repeating. People still die from MBC. It is not cured or the pretty type of cancer to get.

DivineMrsM

I’d like to commend everyone in the metastatic breast cancer community who’s responded to this thread. Every single post has brought vital information to light on the subject of metastatic breast cancer myths and misconceptions.

Moderators

We couldn't agree more. And thank you, Runor, for your candid take! Yes, we'll definitely keep all this all in mind!

candy-678

Runor- I applaud you !!!!!!!!!!!!!!!!!    Yes, Yes, Yes !!!!!!!!!!!!!

I too am scared everyday.  I continue on--work full time, clean the house, buy groceries.  Today I had a repairman come to make sure my AC unit is ready for another summer.  I continue with living but I am scared of the "rug being pulled out from under me".  I am due for my next CT scan and will this be the one showing progression??   I too am scared of planning ANYTHING for the future.  The psychological aspect of all this is worse than the actual tumors.  AND I AM SICK OF PEOPLE TELLING ME I LOOK HEALTHY.  DO THEY THINK I AM LYING ABOUT THE CANCER.  WHY IN THE HELL WOULD I LIE ABOUT THIS.  I WANT MY OLD LIFE BACK!!!!!!!!!!! 

Sadiesservant

Amazing posts. And yes Candy, I cringe every time someone says “You look great!” Well I don’t bloody feel great. I ache and I’m tired all the time now. Still working full time but struggling to keep it all together (and, if I’m honest, terrified that I am wasting the precious time I have showing commitment when I will be forgotten and replaced the second I walk out the door - or they carry me...). There is no rainbows and kittens in the land of MBC. It’s a tough slog no matter what..

SchnauzerMom

Nowaldron and Candy, something both of you said really resonated with me, and I so appreciate your honesty in mentioning it. You spoke of the possibility of people thinking we might be lying or exaggerating about illness when we "look so good." I have wondered this, too, especially as I have lived longer than most people probably expected I would. I feel a bit like "What? She's still alive? I heard it was stage IV. She must not really be that sick." Like most of us, I haven't publicized my illness, but word gets around. I almost feel a bit embarrassed, and that is stupid!! I attended a class reunion five years ago, and several people knew then. There is another reunion coming up this summer, and if I go, I will feel uneasy. Just silly!!! We're not lying or exaggerating!!

DivineMrsM

Shnauzermom, I, too, run into the same situation and here's what I've learned to say. If someone who knows of my diagnosis mentions I look good or something along those lines, I say, “Thanks. I'm having what's considered an exceptional response to treatment. Only 22% of women diagnosed with metastatic breast cancer live past three years, and I was diagnosed in 2011, so I'm grateful for doing so well on treatment and hope it continues.There are some side effects with the medicine I take but overall I'm doing okay." Yes, I say it in such a way that hell, I want them to be impressed with my longevity in dealing with this disease!

I want to add that people are genuinely relieved to hear that I’m doing so well on treatment. I can see it in their eyes. They are glad for me and they are glad that there are effective medicines out there that sometimes have great results.

Go to your class reunion with your head held high! You could be an inspiration to some of your classmates!

NineTwelve

I know my culture is in general and almost complete denial of mortality. We are mortals who have limited time. So it bothers me when I have to waste any time doing the song and dance about how I'm sick but my illness is being managed by meds until they stop working. I'm guilty of the old "but we could all get hit by busses and be dead just like that" (Send in the bus, there has to be bus...Well, maybe next year...)

It bothers me that i have to minimize my illness in order for everyone to be comfortable. It bothers me, but I do it, because we just don't have the skills in my immediate family/social circle/work environment to handle life and death issues. We forgot the vocabulary our ancestors created around the constant cycles of birth and death. We have forgotten how to be sympathetic without making presumptions. We want to be kind and caring, but instead we come out with cliches that aren't even true, and certainly don't help, except maybe minimally as we convey that we care, even if we can't say the right thing. I want to apologize to anyone I ever slighted by minimizing their fears or pain. I'm sorry, I was trying to be helpful.

On a more concrete and more easily remedied level, it really bothers me that the radiologists' office that does my scans can't stop themselves every time from treatment-shaming me. They all insist I should get a mastectomy NOW, even though that is not standard protocol anymore. It's not their job to volunteer treatment advice, why do they keep doing it? Oh, yes, they're trying to help.

This is why we need to explore the myths and misconceptions. In some cases, those misconceptions can harm us or prevent us from getting the best care there is for our disease.

jennyunderthesun

a friend of mine once said, yes anyone could get hit by a bus tomorrow, but with cancer it’s like the bus is driving up and down your driveway.

DivineMrsM

OH MY GOD JENNY, best reply to the bus comment ever!!! I plan to use it when necessary!!!!!!! A comment like that should put people in their place!

BuckeyeAmy

This was really great reading some of these replies, and I have certainly experienced many of them in my 9 years of Stage IV status. For a good deal of that time, I looked so "normal." Healthy, fit, full head of hair. I sometimes wonder if people think I am one of those people who fake a disease for attention and money: she can't possibly have this terrible illness, she works out 4 times a week! The myths I've see mostly over the years:

* Stage IV is an automatic death sentence

* Treatment has an "end"

* eating asparagus, taking coconut oil, using CBD oil, changing your diet to alkaline, etc. will "cure" the cancer

* despite my appearance and mood and activity level, I am still fighting a bitch of a disease. And it's sometimes exhausting. Emotionally and physically.

One thing I would like to add: people generally mean well. It's tough to know what to say to someone facing their own mortality. "Your attitude is so great. That's how you made it this long." "Hey, we could all get hit by a beer truck tomorrow." "My sister went to this clinic in California and her cancer is gone. I'll send you the info." They are trying to commiserate and empathize with you. Give 'em a break.

Love to all my fellow Stage IV sisters - "You Got This!" ha ha ha

SchnauzerMom

Buckeye Amy, exactly! I do wonder sometimes if people think my illness is exaggerated, otherwise why would I still be here and looking normal. I'm not paranoid, but sometimes I do get that vibe, even though I am low-key and not prone to dramatization. I do agree with you that most people mean well.

exbrnxgrl

Buckeyeamy,

Not only do I look completely normal, but I am 62 years old and am a full time public school teacher (grade 1!). I’ve had more than a few people look at me as if they didn’t believe me. I even had someone imply that, perhaps, I misunderstood what my doctor told me. I’m not interested in teaching anyone a lesson (All my “teaching” energy goes to my 23 kiddos in class), but unless you are well versed in cancer best not to proffer opinions or advice.

Strong65

The biggest thing I've run into is when people ask when I will be done with treatment. I put it bluntly, either when I die or the treatments quit working. Puts an end to the conversation and questions pretty quick.

Next would be the "look" I am well endowed and was stage 4 from the start so massectomy wasn't on the table. People automatically assume you have a massectomy, I HATE the quick look at my breasts. They just don't understand not everyone is lucky enough to get a massectomy...

Elderberry

Maire67: I meant to reply last month. Canada has a law that pharmaceutical companies cannot advertise prescription drugs on tv. Is that why our drugs are cheaper here? Just asking?

Maire67

You may have just answered my question . Thank you, Elderberry. Or at least one of many reasons. Gives me something to ask my congressperson.
A small example of our dysfunctional system. I received a bill for $25000 from my hospital last month The hospital received $8300 from my insurance company. Bill is considered Paid because the insurance company has a deal with the hospital. I have great insurance and pay close $12000 a year for health insurance including Medicare. ( believe me I am not complaining). A person who didn’t have insurance would be on the hook for all $25,000 for one month of treatment. No discounts for them. There goes their house,savings and their life.
Some amazing people on this site have given advice to many who have to search for ways to afford their medicines. Oh I’m sorry I’m ranting
Sorry Elderberry. I’m ranting and going off topic. Misconception: Medicare covers everything.
The largest number of personal bankruptcies in the United States are from Medical bills.

Sadiesservant

Maire, your rant is perfectly understandable. None of our systems are perfect when you face a catastrophic illness. Even in Canada I feel we often live in a bubble thinking everything will be covered under our universal healthcare. Uh, no. I am incredibly fortunate to have a great extended health plan through my work. I never thought in a million years that I needed to worry about paying for meds if my cancer returned. The reality is quite different. Ibrance cost my plan $7500 per treatment and my Faslodex is $1300 per injection. In the absence of my plan I would be on the hook for some serious dough.