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Topic: We lost another man. Thanks pink charities.

Forum: Male Breast Cancer — For men who have been diagnosed or are at high risk.

Posted on: Feb 25, 2018 01:53AM - edited Feb 25, 2018 03:18AM by Traveltext

Traveltext wrote:

Another member of the Male Breast Cancer Cialition has passed away:

http://malebreastcancercoalition.org/Survivor%20Stories/michael-selsman/

This is a sad day. My condolences to his family.

The pink charities should accept that they are very much to blame for Michael's death, since they, by and large, keep men in the dark about this disease. Michael knew this when he said:

"The toughest thing was that I was diagnosed pretty late," he says. "If I'd been a woman, I'd have been more aware of the risk factors and family history, and that I was a candidate for breast cancer."

We all need to do more to bring about change in the ways the pink charities present breast cancer to society. I mean, how successful are breast cancer awareness campaigns when under half the population don't know that men get this disease too? Our diagnosis is later, and our prognosis is poorer. We're literallydying for change.


NED breast and prostate cancer. More on Male BC

Dx 03/14, IBC, Lgth. 2cm, Stge IIIB, Gde 2B, ER+/PR+, HER2- ; FEC x3, Taxol x3; Mx & 2/23 nodes; Rads x 33; now on tamoxofin.

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Mar 12, 2018 02:50PM wallycat wrote:

Traveltext, I do feel your pain. This is my own personal thought on the matter, and some of that I already posted....science and medicine and disease resolution has been predominantly focused and geared for men---heart disease is the number one killer and when a woman goes in to the ER thinking she is having a heart attack, she is sent home and not taken seriously (hopefully, some of that has changed). So my comment ...I WISH more men were featured and that medicine took breast cancer in men more seriously to me means that that might mean a cure---and that would hopefully end up helping women---who cares if that happened as an afterthought.

I fear that many men don't want to be a poster-child of breast cancer (not manly enough of a disease? or worrying that their mates will joke about having "a woman's disease" or who knows what).

I'll add that since women are foisted into seeing their gyns annually, those doctors (men and women docs) point out all the things we need to be watchful for...colon cancer, heart disease, blood draws that can flag disease before it gets too far gone, etc.. I just don't know (personally) many men that go for annual exams. I'm married to a guy that hasn't seen a doctor in 20 years. NO joke. A gal can only rant and nag so long and then what? I'm not saying men should be excluded, but dollars are focused where % effectiveness is a quantifiable outcome. I hate that money talks.


Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012
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Mar 12, 2018 11:15PM Bright55 wrote:

hi traveltxt very sorry to hear of passing of Michael And Cliff

Bright in hope

Dx 2011, DCIS, Right, <1cm, Stage 0, Grade 2, 0/2 nodes, ER+/PR+, HER2- Dx 2016, Right, 2cm, Stage IV, metastasized to lungs, ER+/PR+, HER2- Hormonal Therapy Femara (letrozole) Surgery Mastectomy: Right
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Mar 12, 2018 11:38PM - edited Mar 13, 2018 12:00AM by ShetlandPony

Like men, stage iv people are typically excluded from our culture's bc narrative, and that narrative has been created largely by the pink charities. Men and stage iv are both inconvenient for partying and fundraising. I know Traveltext is an advocate for stage iv needing more, as well as for men.

2011 Stage I ILC ER+PR+ Her2- 1.5 cm grade 1, ITCs sn . Lumpectomy, radiation, tamoxifen. 2014 Stage IV ILC ER+PR+Her2- grade 2, mets to breast , liver. Taxol NEAD. 2015,2016 Ibrance+letrozole. 2017 Faslodex+Afnitor; Xeloda. 2018 Xeloda NEAD
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Mar 12, 2018 11:53PM Traveltext wrote:

Yes, it would be great if we could move away from bc as a pink disease. I have mets friends and they hate all the hoopla around this disease. As Shetland says, it's narrative that has been created largely by the pink charities. And it's an insult, really, to those dealing with late stage stage bc.

But wait, there's more. A look at the annual financial reports of some of these pink charities shows that as much as 70% of the funds raised go on admin costs. And 30 years of fundraising has certainly raised awareness levels that women get this disease, go have a mammogram, etc, but a cure is just as elusive as ever. I really believe most of the funds raised should be used to support Stage IV folks who are doing it tough.

The meme below tries to sum up the situation.



NED breast and prostate cancer. More on Male BC

Dx 03/14, IBC, Lgth. 2cm, Stge IIIB, Gde 2B, ER+/PR+, HER2- ; FEC x3, Taxol x3; Mx & 2/23 nodes; Rads x 33; now on tamoxofin.

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Mar 13, 2018 07:54AM NotBrokenJustBent wrote:

And let's add to that meme that a clean mammos does not mean that all is well. It is a screening tool but not an absolute. That is another misnomer.

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Mar 13, 2018 03:35PM - edited Mar 13, 2018 03:37PM by Micmel

Financially toxic. Boy that is the truth. Cancer is horrible. Even the name sounds horrible. It's like we cant even gang up on it and Lynch mob it. We are helpless but to idly wait for the answers. So sorry for any loss by cancer or any other crappy disease also. ~M~

Dx 1/22/2016, IDC, Left, 4cm, Stage IV, metastasized to bone, Grade 2, 13/35 nodes, ER+/PR-, HER2- Chemotherapy 2/10/2016 AC Surgery 6/21/2016 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Chemotherapy 7/20/2016 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 11/7/2016 Ibrance (palbociclib) Hormonal Therapy Arimidex (anastrozole) Surgery Chemotherapy Chemotherapy
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Apr 21, 2018 08:31PM LovingIsLiving wrote:

I 100% agree with this. Men are dismissed when they bring up these types of symptoms to their doctors. My brother first told his doctor that he had a lump under his arm. Dr. did some prodding, but didn't think it needed further testing, so another year passed until he decided a mammogram was necessary. That delay in diagnosis likely cost my brother his life.

My brother, in the terrible shape he was, got genetic testing done and found out he was Brca2 positive. It was too late to help him, but he saved my life and my sister's life. If it weren't for him, my doctors would not have biopsied my lump, and my sister would not know that she is brca2+ too.


"The Lord is my light and my salvation; whom shall I fear? The Lord is the strength of my life; of whom shall I be afraid?" (Psalms 27:1). The stats below are mine. ♥ My brother lost his fight against breast cancer on Feb 27, 2017 ♥ Dx 10/1/2015, DCIS/IDC, Left, 2cm, Stage IIB, Grade 2, 1/22 nodes, ER+/PR+, HER2- Surgery 11/10/2015 Lymph node removal: Left; Mastectomy: Left Hormonal Therapy 12/28/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 21, 2018 09:13PM Traveltext wrote:


Thanks for sharing LiL, you were indeed fortunate that your brother's genetic test meant you and your sister could get timely treatment. Men do have to go through more hoops to get diagnosed and therefore their prognosis is generally not as good as for women. And BRCA2 men have a one in 12 chance of getting breast cancer (the same as women in the general population) and yet they are not allowed into the public screening programs. This is criminal. What's more BRCA men are more likely yo get other cancers including prostate and pancreatic, and melanomas.

It's important to remember that men pass on the BRCA genes equally to women and we all need to be aware of our genetic histories on both sides of the family, and for both men and women.


NED breast and prostate cancer. More on Male BC

Dx 03/14, IBC, Lgth. 2cm, Stge IIIB, Gde 2B, ER+/PR+, HER2- ; FEC x3, Taxol x3; Mx & 2/23 nodes; Rads x 33; now on tamoxofin.

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May 5, 2018 03:29PM topdubu wrote:

Sorry for the loss. I had a very early diagnosis and aggressive treatment-twice. (2003 and 2006) Early detection is no guarantee--I was again diagnosed with stage IV in late 2016. Living well, pushing it back with Ibrance, Letrozole and Lupron. But this stuff is tough and wants to live as much as I do--It will find a way back. I've had great experience with the Pink Charities--Komen in specific.

Dx 9/2003, DCIS, Right, 1cm, Stage 0, 0/1 nodes, ER+/PR+, HER2- Dx 9/2006, DCIS, Right, Stage 0, Grade 1, ER+/PR+, HER2- Dx 11/2016, Right, Stage IV, metastasized to bone/lungs, ER+/PR+, HER2- Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Arimidex (anastrozole) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Chemotherapy Surgery Chemotherapy Surgery Mastectomy: Right
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May 5, 2018 03:40PM - edited May 6, 2018 02:36AM by Traveltext

Good news re your experiences with Komen, topdubu, and good luck with your continuing Stage IV treatments.

My male bc pal Rob has been nearly five years Stage IV and his onc says they still have drugs up their sleeve to try.


NED breast and prostate cancer. More on Male BC

Dx 03/14, IBC, Lgth. 2cm, Stge IIIB, Gde 2B, ER+/PR+, HER2- ; FEC x3, Taxol x3; Mx & 2/23 nodes; Rads x 33; now on tamoxofin.

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May 5, 2018 10:38PM Meow13 wrote:

It is encouraging to hear stage 4 breast cancer isn't an automatic death sentence. Many are living with good QOL many years after dx. I pray everyday for a cure and better meds.

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May 6, 2018 02:30AM ShetlandPony wrote:

Traveltext, I think spellcheck played a trick on you. I’m pretty sure you meant to allude to topdubu’s good experience with Komen, but you have instead congratulated him on good experience with Women. Here’s hoping both apply to topdubu. .

2011 Stage I ILC ER+PR+ Her2- 1.5 cm grade 1, ITCs sn . Lumpectomy, radiation, tamoxifen. 2014 Stage IV ILC ER+PR+Her2- grade 2, mets to breast , liver. Taxol NEAD. 2015,2016 Ibrance+letrozole. 2017 Faslodex+Afnitor; Xeloda. 2018 Xeloda NEAD
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May 6, 2018 02:38AM Traveltext wrote:

Ha, thanks SP, saved from the dreaded spell checker. But it was a good clanger, I agree.


NED breast and prostate cancer. More on Male BC

Dx 03/14, IBC, Lgth. 2cm, Stge IIIB, Gde 2B, ER+/PR+, HER2- ; FEC x3, Taxol x3; Mx & 2/23 nodes; Rads x 33; now on tamoxofin.

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