Myths/Misconceptions about MBC- please share with us!

ShetlandPony

Right. So I'll try to sum up:

Myth: If you ....(Fill in the blank in any way!) have Medicare, have Good Insurance, live in a country with universal healthcare ...you will not have to deal with the cost of care for metastatic breast cancer. Very wrong! With mbc you don't recover from the financial effects any more than you recover from the cancer or finish treatment. They all just go on and on. Deductibles, co-pays, care not covered, drugs not covered, over-the-counter remedies for side effects, lost work time, paying for help, buying takeout food, travel for care expenses, retiring early, inability to work, etc. I did not even know I was believing a myth when I assumed my health insurance meant my financial situation would not be affected.

Elderberry

sadiesservant: I was supposed to go on 7-day/mth injectible at home Grastofil. . The cost would have been roughly $1,2000+ per 7-day, for many months. However, on the MO's recommendation as necessary an organization in Ottawa called ANSWER picks up the tab. I ended up not needing it because, after a PET scan, it was discovered I was actually at Stage IV and treatment plan changed.

Elderberry

sadiesservant: I was supposed to go on 7-day/mth injectible at home Grastofil. . The cost would have been roughly $1,2000+ per 7-day, for many months. However, on the MO's recommendation as necessary an organization in Ottawa called ANSWER picks up the tab. I ended up not needing it because, after a PET scan, it was discovered I was actually at Stage IV and treatment plan changed.

ctmbsikia

My sister has MBC so I hope that will qualify my post here. While I applaud your efforts  I sincerely feel that no matter what we do to eliminate misconceptions regarding BC, there will still be some regardless.  Until you are diagnosed with this disease.  I know because I was one of the people that everyone is talking about here.  Clueless.  When my sister was diagnosed in 2014 I was caring for our Mother and covered for her.  We never told Mom.  She had dementia and multiple other health issues.  I did not take the time back then (being a caregiver and all!) to educate myself on what my sister was going through.   DMX (ILC right side tumor was 5cm+), radiation which left her with lymphedema of her right arm, mets to spine, scans every 3 months.  As everyone well knows, it's a lot.  I am happy to say she is doing very well today.   There has been no progression since 2014 so keeping with current treatment of the AI and Xgeva shots.

To All, I am sorry.  I get it now.  

DivineMrsM

ctmb, I’m happy to know that your sister is doing well. And guess what. i, too, used to be one of those people who didn’t get it. I was sometimes pushy trying to get information and trying to show I cared as if it were about how compassionate and understanding I was. In hindsight, I can see I was overstepping boundaries and thinking my big display of concern would make the other person feel better, *buzzer sound* Wrong!

princessfluffybritches

I tell as few people as I can because I don't want to heAR the comments like "seems like everyone has breast cancer" etc. The only things I would like to hear "so, how are you feeling?", or just ask me a question about Me or how I am handling this diagnosis physically or psychologically.

Elderberry

princess: I am grateful to have friends and sisters who send me cards in the mail, or e-mails to see how I am doing. I have a friend who doesn't ask if there is anything she can, she just shows up. Cleans my bird feeders on the the deck, cleans the deck, made dinner one night. Another friend came over with his sons and mowed the lawn. We all need that kind of love and support.

princessfluffybritches

that is really nice of your friend!

gailmary

this from my meighbor, an ER doctor "- you'll need a mastectomy now." He didn't even wait to hear that it was in the arm bone and not a local recurrence. I think, like me, he thought it would recur in the breast before progressing to bone.

I would have thought the same thing if it was local.

GAILMARY

exbrnxgrl

I don’t think this is myth/misconception, so much as my own lack of knowledge, but I was shocked, SHOCKED, to learn that there were many forms of bc. I truly had no idea

Moderators

Thank you, all, so much for your contributions!

Check out what you helped create: Myths and Misconceptions About Metastatic Breast Cancer

Again, we are so appreciative of your willingness to share!

--The Mods

ShetlandPony

Very Nice! Lots of good points organized into the article. Thank you, BCO, for letting our voices be heard and for working to educate others about metastatic breast cancer.

AnnieLNZ

Since being diagnosed in Feb this year (almost 12 years after initial diagnosis - what the!?!) I've come to believe that MBC needs better and more psoitive publicity. Back in '07 when I was diagnosed my only experience/knowledge of a cancer diagnosis was that it meant you would die. I think for many people that was their view. In the years since I feel there has been so much publicity about new drugs & survivor stories (esp. breast cancer pink ribbon stuff - ugh don't get me started on that) that general perceptions have changed to a BC diagnosis being something that can be "battled & won". However, MBC is still seen as something to be whispered about, something that no-one wants to talk about as there is no "cure". People don't like uncertainty. But as many of you know MBC while less than ideal (what an understatement) is something that can be managed and many women do live with it while maintaining a good quality of life.

The thing I struggle with most is the people who treat me with kid-gloves and you can tell they are seeing you as a dead person walking. Please just see me as a normal person who has a chronic disease. I'm currently fit & healthy & am trying super hard to treat cancer as just a part of who I am - ie. just like I have blue eyes, a wonky shoulder, etc. Don't get me wrong - there are times when it is super awful and scary & I just want to curl up & cry, but overall I am trying to live my life as best as I can. Case in point - the past fortnight I've felt great, zipping about doing all my usual stuff, great blood test results, then this evening I get an inconclusive CT report so now have to wait until earlier next week to find out if the new spots on my spine are good spots (as in healing) or bad spots (as in cancer). The worry never really leaves you does it....

Sparkles2_2

One thing I want to add- for me especially is Your to young to have mBC, apparently not seeing as I have it and I am 38- soon to be 39 and was diagnosed at 37.

SandiBeach57

So here is a misconception. Someone told me that I looked well for being on "maintenance treatment" for my Stage IV breast cancer that had metastasized to my liver.

She had been on Tamoxifen "maintenance treatment" 2 years for her early stage dx and quit. Then she suggested that I might want to consider that too with all the chemicals being pumped into my body.

I politely said that there is no optional "maintenance treatment" with Stage IV breast cancer, that I am on treatment forever to try to keep alive from a noncureable cancer.

Then I got into my car and cried.

Do people really think it is the same?

Anotherone

yeah I know , it has just been 6-7 weeks since my metastasis diagnosis and I already came across a couple of incidents like that - my partner already said that he has been talking to his brother who was in a similar situation with his ex being diagnosed with BC. No consideration whatsoever that BC and MBC are 2 very different ball games equalling them.

Or well meaning people giving examples of many public figures/people who do talks about natural cures for cancer yadyada who survived nonmetastatic cancer. Give me a break!

DianeEliz

I was amazed after being diagnosed with mbc how many women are LIVING with this years after diagnosis. I am 6 months out and on my second chemo for mbc and feel more or less like I once did, admittedly I've slowed down. But when I was first diagnosed I thought I may well be dead by now, and my doctor didn't help me with that view (I now have a new doctor). I hate the questions of "when are you done treatment" or "when do you know treatment is working". I can feel the dirty looks when I have a cocktail :-) But it is a hard, hard, road, especially at work where I fully intended to continue to work full time (and can) and for a while was ignored entirely for assignments! I appreciate the sensitivity but was amazed my name was wiped off the assignment board immediately. It is all a struggle, I am constantly trying to get used to all of this. I should know from being treated in the past, some people in your life are amazingly supportive, and others have no idea what to do or say and disappear. It never stops hurting.

jennyunderthesun

hey! I just want to say thanks for the article you posted that was written from this thread. It’s been really helpful in educating friends and family

ShetlandPony

Bump for Pinktober. Let’s have some real awareness building.

arolsson

What I wish people understood is that there is often a disconnect between how you feel, how much you are able to do and how you are "doing" according to the docs. I am so ambivalent about hearing how terrific I look and how wonderful it is that I can rally and appear well for a day. One the one hand I am happy, because that's what I want, to be seen as the person I was. On the other hand it can be hard to hear that you look fantastic and healthy when you are struggling to button a button and another potential date has "ghosted" you because you dared to tell them the truth about your condition. Now its the opposite, after making the tough decision that I wouldn't do any more treatment that would make me lose my hair (a third time) I signed on to my last option, eribulin and will be bald again soon. So now I look sicker but am feeling otherwise OK.

Sunshine99

This is in response to the "You look so great!" comment. I think people mean well, but it's hard when we don't FEEL well even if we LOOK well. I had a friend who had suffered a number of heart attacks. After the last one, during which he coded and had our friends doing CPR on him, he came back to church after being the hospital for several months. He was a young man, but he still looked much more frail than he ever had. His wife told me that it was so hard for him to be continually told, "You look so great!" when he felt so awful. I asked her permission and then I went up to him and said, "Tom, you look like hell!" He just lit up - it totally made his day to have someone acknowledge how he really felt.

I don't know that I want someone to tell me I look like hell, but it can be hard when we're told we look fine, when everything hurts and we're waiting for that next test to tell us how far the cancer has spread. I had one neighbor ask me how I was. I said "Doing well." His response was, "No, how ARE you?" He really wanted to know - not just to hear the standard answer we give people.

JUDY_MEIBACH

It was interesting to read all the responses - and I am in agreement with many of them. I look forward to your publication.

nopink2019

Did Mods post an article based on these comments?

MountainMia

nopink, this

https://www.breastcancer.org/symptoms/types/recur_metast/myths