Topic: Myths/Misconceptions about MBC- please share with us!

Mar 22, 2019 03:48PM illimae wrote:

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.

Mar 22, 2019 05:39PM LoveFromPhilly wrote:

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.

Mar 22, 2019 07:32PM - edited Mar 22, 2019 07:59PM by DivineMrsM

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

Mar 22, 2019 07:56PM - edited Mar 22, 2019 07:56PM by DivineMrsM

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.

Mar 22, 2019 10:37PM JoE777 wrote:

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.

Mar 23, 2019 05:55AM - edited Mar 23, 2019 06:46AM by DivineMrsM

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.

Mar 23, 2019 07:09AM - edited Mar 23, 2019 07:10AM by SandiBeach57

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.

Mar 23, 2019 08:42AM DivineMrsM wrote:

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.

Mar 23, 2019 09:24AM SchnauzerMom wrote:

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!)

Mar 23, 2019 10:28AM exbrnxgrl wrote:

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.

Mar 23, 2019 07:14PM - edited Mar 23, 2019 07:15PM by ShetlandPony

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.

Mar 24, 2019 07:04AM Moderators wrote:

Wow. Rather unbelievable, some of these. Thank you for sharing.

Mar 24, 2019 12:14PM GG27 wrote:

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?

Mar 24, 2019 07:27PM Micmel wrote:

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 !?

Mar 25, 2019 08:30AM Grannax2 wrote:

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.