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

Forum: Stage IV/Metastatic Breast Cancer ONLY — Please respect that this forum is for members with stage IV/metastatic breast cancer ONLY. There is a separate forum for caregivers and friends: Caring for Someone with Stage IV or Mets.

Posted on: Mar 22, 2019 03:50PM - edited Mar 22, 2019 03:54PM by moderators

Posted on: Mar 22, 2019 03:50PM - edited Mar 22, 2019 03:54PM by moderators

moderators wrote:

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

To send a PM to the Mods: community.breastcancer.org/my/...
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Mar 22, 2019 04:48PM 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.

Diagnosed at 41 Stage IV De Novo Dx 11/16/2016, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, 3/13 nodes, ER+/PR-, HER2+ Chemotherapy 1/2/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/2/2017 Herceptin (trastuzumab) Targeted Therapy 1/2/2017 Perjeta (pertuzumab) Surgery 6/26/2017 Lumpectomy; Lumpectomy (Left); Lymph node removal Radiation Therapy 8/10/2017 Breast, Lymph nodes Dx 10/5/2017, IDC, Left, 5cm, Stage IV, metastasized to brain, Grade 3, 3/13 nodes, ER+, HER2+ Radiation Therapy 10/20/2017 External Local Metastases 10/20/2017 Brain Radiation Therapy 4/18/2018 External Local Metastases 4/18/2018 Brain Radiation Therapy 5/23/2019 External Local Metastases 5/23/2019 Brain Surgery 1/22/2020 Radiation Therapy 2/17/2020 External Local Metastases 2/17/2020 Brain Radiation Therapy 7/20/2020 External Local Metastases 7/20/2020 Radiation therapy: Bone Radiation Therapy 12/4/2020 External Local Metastases 12/4/2020 Brain Targeted Therapy Tukysa (tucatinib) Chemotherapy Xeloda (capecitabine) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 22, 2019 05:21PM blainejennifer wrote:

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.

ER/PR+, HER2-, Grade 3. Stage 4, July 2012. Currently on Gemzar/Carboplatin Dx 5/2006, IDC, 4cm, Stage IIB, Grade 3, 4/12 nodes, ER+/PR+, HER2- Dx 3/2012, IDC, Stage IV, 4/12 nodes, ER+/PR+, HER2- Chemotherapy 6/28/2012 Taxol (paclitaxel) Hormonal Therapy 6/5/2013 Faslodex (fulvestrant) Chemotherapy 7/1/2014 Xeloda (capecitabine) Hormonal Therapy 8/14/2015 Femara (letrozole) Chemotherapy 1/31/2016 Halaven (eribulin) Chemotherapy 8/31/2016 CMF Chemotherapy 11/1/2016 Halaven (eribulin) Chemotherapy Carboplatin (Paraplatin), Gemzar (gemcitabine)
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Mar 22, 2019 06:39PM 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.

MBC de novo March 2017; innumerable bone mets; possible mets in liver? MSH6 mutation; Treatments: Ibrance/letrozole, lupron, xygeva, zometa, tamoxifen; faslodex; Currently Gemzar; BC skin mets and progression to bone marrow. Dx 3/25/2017, IDC, Right, Stage IV, metastasized to bone, Grade 3, ER+/PR+, HER2-, Hormonal Therapy 4/5/2017 Femara (letrozole) Targeted Therapy Ibrance (palbociclib) Hormonal Therapy
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Mar 22, 2019 07:27PM mermaid007 wrote:

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

Debs
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Mar 22, 2019 08:32PM - edited Mar 22, 2019 08:59PM 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

found lump 12-22-10—ilc—er+/pr+/her2—stage iv bone mets—chemo~lumpectomy~radiation~arimidex—March 2019-ibrance/aromasin* —Sept 2019-verzenio* —March 2020-xeloda*
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Mar 22, 2019 08:48PM - edited Mar 23, 2019 06:12AM by divinemrsm

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.


found lump 12-22-10—ilc—er+/pr+/her2—stage iv bone mets—chemo~lumpectomy~radiation~arimidex—March 2019-ibrance/aromasin* —Sept 2019-verzenio* —March 2020-xeloda*
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Mar 22, 2019 08:56PM - edited Mar 22, 2019 08:56PM 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.


found lump 12-22-10—ilc—er+/pr+/her2—stage iv bone mets—chemo~lumpectomy~radiation~arimidex—March 2019-ibrance/aromasin* —Sept 2019-verzenio* —March 2020-xeloda*
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Mar 22, 2019 09:43PM gailmary wrote:

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

Dx 11/25/2008, IDC, Left, 2cm, Stage IIA, Grade 1, 2/12 nodes, ER+/PR+, HER2- Dx 4/13/2017, Stage IV, metastasized to bone Radiation Therapy 5/24/2017 Hormonal Therapy Faslodex (fulvestrant), Femara (letrozole)
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Mar 22, 2019 11:37PM 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.

Dx 2/2012, IDC, Left, 2cm, Stage IIA, metastasized to bone, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 4/4/2012 Lumpectomy: Left; Lymph node removal: Sentinel Hormonal Therapy 1/8/2018 Femara (letrozole) Dx 2/2018, IDC, Stage IV, metastasized to bone/lungs, Grade 1, ER+/PR+, HER2- Hormonal Therapy Aromasin (exemestane), Femara (letrozole) Radiation Therapy Whole breast: Breast, Lymph nodes Chemotherapy Other Radiation Therapy External: Bone Targeted Therapy Kisqali
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Mar 23, 2019 12:01AM vlnrph wrote:

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.

Dx 3/7/2011, ILC, 2cm, Stage IIA, Grade 2, 1/25 nodes, ER+/PR+, HER2-

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