Myths/Misconceptions about MBC- please share with us!
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What are the most common myths or misconceptions about metastatic breast cancer that you've encountered since your own diagnosis? We are writing a piece on this topic, and while we've collected many, we would appreciate hearing your experiences and opinions.
Thank you so much for your help.
Warmly,
The Mods and BCO Team
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I was diagnosed stage IV de novo, so part of my experience is cancer in general, not MBC alone.
1. Stage IV is not an immediate death sentence. It feels that way at first but many have months/years of reasonably decent condition.
2. Brain mets are not necessarily the end either. When found early and treated, especially with minimal disease in the body, life can resume to a fairly normal state.
3. MBC is typically not as show on TV. Most people are not told they have cancer, only to be admitted to the hospital and passing away days/weeks later.
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That a breast cancer tumor doesn't hurt. This particular one worries me because I have read - far too often - that people have delayed seeing their doctor about a lump because it hurt, so it couldn't be cancer.
BRCA 1/2 mutations are responsible for about five to ten percent of diagnosed breast cancers. I have often read that people invoke a lack of family history as to why they couldn't have breast cancer.
Also, slender, fit people get breast cancer. Diet and exercise has a huge impact on cancer prevention, but it is not 100%.
Chemo isn't scary. There are so many medicines and tricks to keep a patient feeling decent during chemotherapy. The fear of feeling awful during chemo can delay a patient in seeking treatment, or pursuing chemotherapeutic avenues of treatment.
Thank you, Mods, for addressing this issue.
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that I should “look sick” and be really exhausted and in pain all the time.
I actually look completely normal and despite some aches and pains from the AIs and other meds, I actually feel pretty damn amazing despite all odds!
Also - I don’t think I am having any bone met pain? And I have extensive innumerable bone Mets in my spine, pelvis, scapula and sternum. My MO seemed pretty surprised when he asked if I was in pain and I said I wasn’t.
I did not really ever exerpience a lot of pain from bone Mets except perhaps once when my back went out for 6 months about 2 years before I was diagnosed. I couldn’t understand why my back hurt so much and Flexerall didn’t help one bit. It was probably the bone Mets growing in my spine but who knows??
I do know I am very lucky to not be having bone Mets pain. It turns out most of my pain is musculoskeletal and I am working through it with massage and PT and exercise.
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I wish I had known when I had my primary that breast cancer in the breast alone doesn’t kill you. I wasn’t informed that it was only metastatic disease that is more dangerous. It was 20 years ago so didn’t have google then.
I wish I had know it can come back as mets years and years later ( 16 years in my case) I would have insisted on scans etc in the years after treatment finished.
I wish when I was diagnosed with bone mets my GP had given me some hope. I felt I needed to go home and “get my affairs in order” when here I am 4 and half years later
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A big misconception is that people in general think we should be hooked up to a chemo iv and looking sickly. When I told one woman I took a daily anti-estrogen pill to combat mbc, she looked at me with pity and sadness. Like maybe I was someone with low IQ who the medical professionals were taking advantage of by not giving me the right kind of treatment for mbc. Or that I had no clue what I was talking about. Or that I was making up that I had advanced bc, perhaps as a sympathy ploy or for attention. She even asked, “Aren't you on chemo?" And, I worked with this woman for a number of years, she was not a stranger!
So while the advertisements for drugs like Ibrance and Verzenio are too glossy and perfect to show the true realities of dealing with mbc, in a way, they may help educate people that newer forms of treatment for breast cancer are now available, and if that treament is effective,those with mbc can lead a somewhat normal life, participating in regular activities
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I ran into a misconception from an actual doctor who had his own cancer clinic. If his name was Dr. Gobbledysmack, his clinc was Gobbledysmack Cancer Clinic. I was sent there by the school employment retirement system of Ohio when I was applying for disability.
It is hard to describe how bizarre this appointment was. After two and a half hours in his office, with him not looking at one single scan of mine on DVD, all of which I'd brought, as instructed, and having read none of the written reports of those scans, written by a licensed radiologist, he said:
“You say you have not had any progression of this disease in over five years. Women with metastatic breast cancer. They live only three to five years. I think you have arthritis." And that is what he wrote on his report!
So, amazingly, even some doctors out there (where did this quack get his license?) have no clue that some of us with mbc can and are living longer these days. They don't realize there actually have been advances in treatments to prolong our lives.
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Another misconception: that there is only one kind of breast cancer. Most people don't realize the different sub categories of this disease.
Also, the misconception is that there is one standardized treatment for every case of mbc, like a “one size fits all." But there are different approaches and it can't always be said that one approach is better than another.
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Upon learning of my dx, I was told i would need a. Mastectomy for my MBC. This from an ER doctor friend. No cancer in breasts upon recurrence. He and i both believed that it would be there again before it progressed to bones as it did. What a shock to me. I was never told that the previous 10 years.
I don't believe its automatic to do a mastectomy anymore if it returns there, is it?
Gailmary
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Metastatic breast cancer doesn't have to return in breast and lymph nodes. Mets in lungs and back and no breast and node involvement.
The new normals advertised about therapys on TV are deceiving about the side effects. They talk about side effects while women are skipping through life. Not looking to show some the harsh SE but not allowing families and patients think there is somethingwrong with me that my life is not like that.
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The vast majority of people have no idea what MBC treatment involves. They somehow think that you will undergo something similar to early stage patients - surgery, radiation, chemo, whatever - and then be done. They want to see you as a pink tutu wearing cheerleader jumping up and down declaring that you have beat this disease...
If I want to shock a person who asks when my regimen will finish, I might say “When I enter hospice"!
Usually I'm not so blunt but, with folks who haven't been paying attention and should know better, that statement will give them pause. I try to be more patient with casual acquaintances, attempting to educate them a little.
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The misconception that having to deal with the realities of dying and having your mortality staring in your face is no big deal:
There are those who minimize the impact of how it feels to get a (literal) life-changing diagnosis of metastic breast cancer. Sometimes, people will say, “Well, we're all gonna die of something!" And invariably, someone says, “Well, I could go out tomorrow and get hit by a bus, so you just never know!"
Yeah, well I've done a little research and looked at the numbers.
About 40 people a year die from getting hit by a bus.
40,000 women a year die of breast cancer.
If I've been diagnosed with metastatic breast cancer, the kind that kills, it stands to reason that I'm something like a thousand times more likely to die from this disease than the healthy person who may or may not walk near buses. For people to be flippant about the seriousness of what it's like dealing with metastatic breast cancer is an insult.
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It’s been intimated by several friends/colleagues that I must not have MBC because I’m not currently doing treatment, and had had no progression for over a year. I’m making this up because I don’t look sick, I’m not hooked up to an IV, I’m not bald.
I initially had one met on a rib; my local recurrence was TN so my tx option set are limited, and my MO and I are taking a quarterly scan approach. I recently had progression to my sternum - but I’m still reluctant to start formal treatment because I feel so darned good. She says she’ll support my decision until she simply can’t anymore.
I’d much rather be a poster child for how sometimes we can live with, rather than die from, MBC - at least for a while. Instead, I find myself defending against people who are increasingly becoming impatient with my lack of cancer-patient appearance. I’m grateful for this time of feeling good, and they’re harshing my buzz.
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Misconceptions:
1. That DCIS doesn't lead to metastatic disease. (10 years after DCIS diagnosis, I had widespread metastatic cancer in liver.)
2. That you can stop follow ups after your DCIS treatment. ( I was actually told by a nurse practicioner that I didn't need follow ups after 5 years for my DCIS.)
3. That you die in 6 months from liver mets. (Folks research on Google. I am approaching 3 years and live a good life while on treatment).
4. That you should always have pain with liver mets. (I had a liver full of mets..never knew it.)
5. That Stage IV breast cancer is like any other chronic disease, you stay on one medicine for the rest of your natural life.
6. That there is only one type of breast cancer and one treatment..chemo. (Sadly, I hear that..)
7. That just because you appear normal, you must be cured or in remission.
8. That Stage IV breast cancer is curable.
Well..I guess that is a start.
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All of the above ! The one I get over and over is, how long will you be on this chemo. I mean doesn't it end sometime ? (Yes ! it ends when it stops working and then we go on to another treatment, lather rinse repeat I guess until we run out of options.) Also people think I am doing really wonderfully, and I don't look like I have cancer. Yes, I am wonderful, I am super happy to still be alive, and enjoying each day. But I have a hard time getting out of bed before 11 am, my hair is falling out for the third time, I can't really walk very far without feeling like throwing myself on a bed, stuff tastes weird, I have horrible pains in my ribs at night, bla bla bla. But never mind all that, I really do want people to think I'm pretty much normal, because otherwise they'll maybe not want to talk to me.
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There’s a misconception that breast cancer follows a linear path, going from stage 1, then 2, 3 and finally stage 4. Some people erroneously think if you have stage iv bc, you must not have caught it early enough, and even perhaps that you did something wrong and weren’t diligent enough in finding it earlier.
After 13 years of annual mammograms, and ten days after that 13th one, I felt a thickening in my breast and within six weeks learned I was dealing with metastatic breast cancer.
This lends itself to another myth: early detection = cure
Yes, I’m sure that is true with many, however, the fact is that such a statement is not 100% true.
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Another myth is that alternative treatments for metastatic breast cancer work better for breast cancer patients than conventional medicine. That cottage cheese, baking soda, coffee enemas, profusive amounts of vitamin c and copious amounts of mistletoe will not only cure you, but they will not poison your body the way chemo and other drugs do.
Tied into that myth is the one that Big Pharma has a cure for cancer, but they make too much money from all the medicines, so they are actively making sure people don't get their hands on the cure.
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That people with metastatic cancer all lose weight and hair. We must be skinny and bald! (I've lost my hair four times, gained weight three times!)
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That you are “cured” if you are cancer free five years after initial diagnosis. I fell for that one myself - when I was diagnosed with MBC twelve years after initial diagnosis I was shocked - I thought I was cured which to me means all better, nope not even sure medically what “cured” means.
That there is some form of early detection for MBC - no you just wait for symptoms, mine was more shortness of breath during intense exercise ( mtn. biking) and just not feeling as strong. I had no medical follow up after my initial diagnosis. It is just wait and see, very scary.
That this is a chronic illness - many of us hopefully will live many years with this disease and hopefully new drugs will continue to work but it is not like a true chronic illness that needs to be managed and you live a normal or mostly normal life span. But someday I think that will be true and hopefully for many of us right now dealing with MBC new drugs will continue to work.
That there is no end to our treatment, this is for the rest of our lives.
Just how emotionally challenging MBC is to live with every day. We all do our best to live our lives to the fullest but damn this is hard! Yes right now I have very good quality of life but with every scan I know everything could change, that is emotionally taxing! Honestly unless you are living this you really can’t understand how hard this is
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I’m writing the same thing as many others, but look at it as supporting anecdotal evidence 😉.
- Funny, you don’t look sick! Yes, I look very, very normal but I still have MBC. Trust me on this one.
- You a great attitude and that’s why you’ve done well. Yes, I have always been optimistic. Although I think it’s made my life easier and more pleasant, I don’t believe it’s kept me from progression. If that were the case, many with “good attitudes” would still be alive today.
- But, we have no family history of bc! With what is currently known about genetic connections means that the vast majority of us dx’ed with bc have no genetic mutations. There may other genes, yet to be discovered, but currently, most of us will test negative for genetic mutations.
- if your bc metastasizes to another part of your body, i.e. liver, lungs, bone, then you have cancer of that location. No! If you have bc mets, you still have bc, but it has spread to other organs. You do not have bone cancer, liver cancer etc. It will be treated as breast cancer.
- If you are dx’ed with stage IV bc, you will die quickly. While this is sadly true for some, more and more of us are living longer with good QOL.
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Yes! I strongly second two points above.
1. The emotional told of your expected future being cut by 10, 20, 30 years is really hard. Everything is bittersweet now. The joy of travel, events and milestones now come with the thought of “is this the last time?”.
2. That a stage IV diagnosis equals negligence on the part of the patient. In my case, it had spread before I ever felt a lump. I felt it Saturday and saw my doc on Monday, I ignored nothing, sometimes it just happens that fast.
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Great topic. Thank you BCO for not being afraid to talk about mbc.
Myths and Misconceptions about mbc:
If she looks good, she is good. Nope. Many of us suffer from the invisible disability of fatigue. I would venture to say every available treatment causes us some level of fatigue. We struggle to keep up. It may look like we are doing the bare minimum when we are really giving it our all. We may hide our pain, our grief, our tiredness, our baldness, our worry, our financial difficulties brought on by not just medical costs but by having to pay for help, over-the-counter meds, lost work time, etc.
A person with mbc should not be given this job/place on the team/part in the play because she could keel over at any moment and will let us down. This is cancer discrimination. We're not dead yet! Let us live. Don't assume you know something you don't.
If she has mbc, she must have done something wrong -- like not get a mammogram, not follow her treatment, not live a healthy lifestyle. Sorry to pop your bubble of security, but people can do everything "right" and still get mbc. Yup, that means you are vulnerable too. So support mbc research and you could be helping us and yourself.
She will love these cute pink products, let's get her some. Gag me. It's not a party, it's not cute or sexy, it's not a special club, it's not a marketing opportunity. It is a terrible disease. Go donate that money to mbc research. Please.
We should encourage her by telling her to fight, that she has a great attitude, that she can beat this. These ideas can make us feel pressured. Many of us do not want to feel we are in a battle. We should be allowed our full emotions. And we do not want it implied that if we can't beat it, we have failed.
Treatment for mbc is like treatment for early-stage bc. Nope. This is a marathon, not a sprint. For many, for a while at least, the treatments are less heavy, because we have to do them long-term.
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My heath insurance offers up to four sessions with one of their phone counselors 24x7 I was really struggling emotionally this morning and called one and explained that I had MBC. She asked "so have they set you up with hospice?".
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Wow. Rather unbelievable, some of these. Thank you for sharing.
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LOL on the negligence issue. The mammogram that first picked up my bc was done 13 months after my previous mammogram. My late mother was convinced that the one month delay from the one year mark is where I went wrong. If only I had had the mammogram at 12 months 🙄
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I love the mammogram one. I had a mammogram 1 week prior to my BMX & it didn't pick up 38 of the 40 tumours, only the two that the Dr & I could palpate.
I too get the "but you look so healthy, are you sure you have cancer??" I thought you would look sick... after 10+ years I guess I'm tired of hearing this. I struggle some days, but don't complain about it, maybe I should start? Then would people believe I truly have cancer?
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I was diagnosed stage IV de novo recently and I am surprised how many family members have asked why I wasn't getting mammograms. My primary tumor is on my chest wall near my sternum and doesn't show up in the mammogram field. Not only have I had annual mammograms, but have had many ultrasounds for benign cysts over the past few years. It wasn't until my cancer had spread through the lymph nodes in my chest and into my cervical nodes that an enlarged axillary node popped up on the mammogram.
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I have Been thinking about this::
1...women now a days are outliving the “Stats" on MBC, some Obviously aren't, but what bothers me the most is, “ oh well you have beaten those statistics, you must be cured, so when will you be done treatment?
2...Omg your hair is longer than mine, how is that possible when you have stage four cancer? I thought you'd be bald still?"
3...your skin is flawless, chemo must agree with you.
4....I don't understand why you can't just stop treatment if you're nead? Doesn't that mean you're cured?
5...do you realize that most women die immediately when it's stage four because it's spread everywhere already?
6...oh it must be hard to be around a lot of normal people and hear about all the things you can't do anymore.
7.... a freaking nurse at my primary care doctors office knows. I have stage four cancer, she says. With this medicine you can't lay out in the sun? I was like omg seriously. Do you honestly think with my port and all, and cancer and puppet like body scars, that I would even stick my toe in the sun? I mean you have my file.
8. Oh you need to have a mammogram this year? Um I just had a FULL body scan. Doesn't that show everything and anything !?
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Here's one:
Don't assume your friends will tell you if they have metastatic breast cancer. It's not that they don't trust you; it's that they don't trust your reaction.
Tina
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I just experienced a myth I had previously believed. Targeted therapy, chemo pills are always easier on your body than IV Chemotherapy. Wrong, wrong and wrong.
Afinitor and Aromasin almost destroyed my body, mind, soul and family relationships. How's that for toxic? I've had six different highly toxic IV chemotherapy in my 27 years of BC and MBC. Not one of them came close to destroying me like two pills a day did.
IV chemotherapy is not the monster of all monsters to be avoided,
as is the trending advice these days for Stage IV MBC. I know that by experience. I've done all of the very harsh ones. FAC, Taxotere and Abraxane. Listen up, none did to me what only five weeks of AA did to me.
Yes, I did relative well on Ibrance/ femara and Xeloda. Watch out for Aphonitor, ladies.it's a whole different ball game.
Pre meds are harmless. Lol. Pre meds like dexamethasone are a literal nightmare for me and my family. Beware and informed about pre meds and how they affect you. Speak up.
Your MO is always right. This is a big one. Trust your instincts and logic. Speak up and make a change if you find yourself not trusting her.
Take it from an old pro, don't ignore your instincts.
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