Monday, March 16, 2020

SURVIVING A PANDEMIC WITH PERSPECTIVE

By: Lennard Gettz

As a volunteer and survivor of the 9/11 attacks, I learned to recognize the many types of losses that are associated with disasters. This includes loss of life, property and security - but also the overwhelming loss of one's mental well-being from the trauma that comes with having something significant forcibly ripped away from you.

It is human nature and common practice to forget our blessings and take things for granted as we hyper-obsess on the woes of our adversity. It certainly does not help when everywhere you turn, headlines push the same fear-driven buzz terms about how grim our current situation appears to be.  Terms like UNPRECEDENTED OUTBREAK, UNCERTAIN TIMES, GLOBAL PANDEMIC and DEATH TOLLS echo one depressing report after the next.  Understandably, getting people to think prevention by invoking fear from contamination means highlighting the darkest motivations and the many consequences that come with it.

Having lived through an era of wars, terror attacks, mass shootings and cancer deaths, disasters have a way of delivering hopelessness like a swift punch in the gut, then followed by a ground swell of negativity and bad reactions from the murky unknowns and unexpected losses. But as impending disasters go, this may be the right time to empower ourselves with a new flavor of forward thinking and a healthy new perspective.  We need to take a major breath from all this as part of maintaining our sanity and not succumb to PANIC and the allure of fear.

1) Historical reference shows that there is always a tipping point to a better day! It may not feel that way now, and maybe worse days may yet be ahead of us, but taking on a more worldly view of any tragedy (historically) has always shown us RECOVERY, RESTORATION and a RETURN to normalcy.

2) We live in an era of ADVANCED SCIENCE: at 2020, our medical community has helped us overcome a large percentage of cancer cases, developed artificial intelligence, nano-technology, micro-processors, innovative robotics and a wide array of remarkable technologies. Outside of warp drive and time travel, there's not much we have not been able to solve when we put our minds and resources together.

3) THE INFORMATION AGE: thanks to today's communication and our global info-sharing community, finding an answer to this (and any problem) is easy access worldwide. Knowing this helps reinforce our faith in our ability to find an eventual solution, leading to our road to recovery.  This information age also redefined the sharing and pay-it-forward aspects of humankind by facilitating their ability to collaborate and problem solve on a global scale.

Hence this too shall pass.

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Yes, I agree... this too shall pass. And, as history shows us, we will recover, restore and return to normalcy. Here's a thought, though... what if each one of us can raise the bar on what's 'normal?' For example, we seem to be much more focused on self-care these days. What if daily self-care routines became part of our new normal? And, I've heard people say how much they've taken 'everyday things' for granted, until now. As a psychotherapist, I have experienced and seen the tremendous benefits of incorporating daily self-care and gratitude practices. I would love to see everyone in this world turn this crisis into a valuable lesson of turning unhealthy physical and emotional habits into healthy new ones. - Tamara Green, LCSW


Disclaimer & Copyright Notice: The materials provided on this website/web-based article are copyrighted and the intellectual property of the publishers/producers (The NY Cancer Resource Alliance/IntermediaWorx inc. and Bard Diagnostic Research & Educational Programs). It is provided publicly strictly for informational purposes within non-commercial use and not for purposes of resale, distribution, public display or performance. Unless otherwise indicated on this web based page, sharing, re-posting, re-publishing of this work is strictly prohibited without due permission from the publishers.  Also, certain content may be licensed from third-parties. The licenses for some of this Content may contain additional terms. When such Content licenses contain additional terms, we will make these terms available to you on those pages (which his incorporated herein by reference).The publishers/producers of this site and its contents such as videos, graphics, text, and other materials published are not intended to be a substitute for professional medical advice, diagnosis, or treatment. For any questions you may have regarding a medical condition, please always seek the advice of your physician or a qualified health provider. Do not postpone or disregard any professional medical advice over something you may have seen or read on this website. If you think you may have a medical emergency, call your doctor or 9-1-1 immediately.  This website does not support, endorse or recommend any specific products, tests, physicians, procedures, treatment opinions or other information that may be mentioned on this site. Referencing any content or information seen or published in this website or shared by other visitors of this website is solely at your own risk. The publishers/producers of this Internet web site reserves the right, at its sole discretion, to modify, disable access to, or discontinue, temporarily or permanently, all or any part of this Internet web site or any information contained thereon without liability or notice to you.


Monday, February 24, 2020

DOCTOR SHOPPING 101 - by Sally Kalksma

Original source: https://www.sallykalksma.com/post/doctor-shopping

People will test drive several cars, sample multiple paint colors on their living room wall, even try different hairstylists in a 10-mile radius before finding their perfect match, but people just won’t go through all that research and time to find the right doctor! I just can't understand why some people will take the time to research what type of weed wacker to buy, but then just listen to the first doctor they talk to when they find out they have a serious illness. How does this make any sense? The first vacuum we see could have the worst suction power or shortest cord. We've got to shop around, yes, even for doctors.

The first thing I did when a general oncologist diagnosed me with Multiple Myeloma 12 years ago was research. Research on the type of cancer I had, the different treatment plans available, and who the best Multiple Myeloma specialists in the world were. There is a reason why there is some saying that goes “reading is power”. As a good rule of thumb, it is ideal to get at least three opinions before settling on a doctor and treatment plan.

Having a good rapport with your physician is one of the most important things you can do for your well being. You must trust your doctor, feel comfortable with your doctor and be able to discuss ANYTHING & EVERYTHING with your doctor. You need to choose a doctor that is the right fit for you. This goes for a treatment plan as well as your comfort level too!

I am fortunate enough to live in a metropolitan area and have access to great hospitals. My health is worth driving 1-3 hours to see a good doctor. I made appointments with 2 other oncologists, both Multiple Myeloma specialists and world-renowned in their field. They both worked at different university hospitals but had a very different approach to treating me.

The first specialist wanted to immediately start me on chemotherapy. I know several other fellow warriors who see this doctor. They love and trust him, but I needed another opinion. The second specialist said he was not going to treat me until my levels hit a magic number. He explained I was still in the smoldering stage and he wanted to wait till I hit stage one. He told me I looked beautiful and to continue running & drinking. Bingo, that was the doctor for me! He watched me every 3-6 months. I did not hit that special number and start treatment until 2016. Eight healthy, fun-filled, eventful years later!

Choosing this doctor was one of the most important and smartest decisions I have ever made. I couldn’t imagine what my life would be like if I started treatment in 2008 since my husband was diagnosed with an aggressive type of cancer 6 months after my diagnosis. He underwent a lot of treatment before passing away 8 months later.

I look forward to seeing my doctor. And like all of his patients in the waiting room, we don’t mind the wait to see him. No one complains. He’s that good! Even my friends and family members who occasionally accompany me also enjoy his bedside manner.

Your doctor is not the only person you should bond with. It’s important to get to know everyone on your healthcare team. Everyone has an important roll in your life. Learn what their job is, and do everything to help make it easier for them. You’re not their only patient.

You have a job too: you are your own advocate. Do not rely on someone else to schedule that appointment or forward the referral. You do it. And keep good notes because your insurance company needs that very important number you were told for that MRI scheduled at that facility on that date by that doctor! Remember what I just wrote earlier, “you’re not their only patient”.

Here’s one more bit of advice when getting opinions and follow up appointments..... Plan accordingly. Plan time for traffic, parking, then sitting around in a waiting room. Why do you think they call it a waiting room? Duh! Bring a book, tablet, pillow. Or play “I spy with my little eyes”, a favorite game of mine on long car rides.

Speaking of cars again, If you are ever faced with a serious illness, which I hope you’re not, then get in the driver’s seat and take control! Read, research and try your best to enjoy the ride!

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ABOUT THE AUTHOR -


SALLY KALKSMA was diagnosed with Multiple Myeloma in 2008. A year later, her husband passed from cancer. She took her stress out on the stairs at work during lunch. The Multiple Myeloma Research Foundation heard about this and invited her to participate in the Empire State Building Run Up to raise awareness and funds for the MMRF. Within 5 years of competitive stair climbing, Sally became ranked 20th overall in the world and 5th overall in the nation by the World Tower Running Association. In 2016, she started treatment for Multiple Myeloma, and underwent an autologous stem cell transplant in 2017. Four months after her transplant, she ran a 5 mile race, and then competed in a stair climb. Today, Sally enjoys encouraging others going through adversity as a  cancer patient advocate,  a motivational speaker and an educational writer.  She was recently awarded a membership to the NY Cancer Resource Alliance and is now a content contributor for NYCRA NEWS.  For more information on Sally, visit: https://www.sallykalksma.com/

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Disclaimer & Copyright Notice: The materials provided on this website/web-based article are copyrighted and the intellectual property of the publishers/producers (The NY Cancer Resource Alliance/IntermediaWorx inc. and Bard Diagnostic Research & Educational Programs). It is provided publicly strictly for informational purposes within non-commercial use and not for purposes of resale, distribution, public display or performance. Unless otherwise indicated on this web based page, sharing, re-posting, re-publishing of this work is strictly prohibited without due permission from the publishers.  Also, certain content may be licensed from third-parties. The licenses for some of this Content may contain additional terms. When such Content licenses contain additional terms, we will make these terms available to you on those pages (which his incorporated herein by reference).The publishers/producers of this site and its contents such as videos, graphics, text, and other materials published are not intended to be a substitute for professional medical advice, diagnosis, or treatment. For any questions you may have regarding a medical condition, please always seek the advice of your physician or a qualified health provider. Do not postpone or disregard any professional medical advice over something you may have seen or read on this website. If you think you may have a medical emergency, call your doctor or 9-1-1 immediately.  This website does not support, endorse or recommend any specific products, tests, physicians, procedures, treatment opinions or other information that may be mentioned on this site. Referencing any content or information seen or published in this website or shared by other visitors of this website is solely at your own risk. The publishers/producers of this Internet web site reserves the right, at its sole discretion, to modify, disable access to, or discontinue, temporarily or permanently, all or any part of this Internet web site or any information contained thereon without liability or notice to you.




Wednesday, May 15, 2019

A Message to all fellow Cancer Survivors: “GET CHECKED AGAIN!”











A SECOND OPINION MEANS PEACE OF MIND
By: Arnaldo Silva
Edited by: NYCRA writing staff

I am writing this to all my brothers at the MBCC and all cancer survivors hoping to share the benefits of my recent health scare experience with you.

About six months ago, I found a pressured lump on my right side and my belly grew bloated like a rock. I have seen several doctors from my plan including a gastroenterologist who (I felt) undermined what I was feeling by sending me off with pills just to make me comfortable. Over time, I began to notice the lump on my right side had grown to the size of a mango. Peggy (Miller) and Cheri (Ambrose), our fearless leaders found cause for concern - enough to scramble to get more information and an appointment with cancer imaging specialist Dr. Robert Bard.

I wish to note that as a survivor of breast cancer, the stress of recurrence was overwhelming. I didn't make a fuss publicly about it partly because after breast cancer, I was told I was cancer free -- even though deep inside I've always felt "there's no such thing as cancer free". I also feared that this new condition may be related somehow.

If I learned something from this entire experience, the “Get Checked Now!” button I got from this year's MBCC conference really pushed the message about staying proactive for prevention and early detection checkups. It also meant staying alert about any possible traces of recurrence. We all need to stay vigilant against illness because cancer has been known to surprise you down the road.

Lennard Gettz of NYCRA (NY Cancer Resource Alliance) joined my case by guiding me to put my medical records together, lining up some possible options and discussing my condition with Dr. Bard and other doctors from the group as far as what my condition could be. He and my other “guardian angels” also explored how to get more specialists involved by switching my medicare from an HMO into a PPO. Cheri introduced me to Bob Wasky or the Wasky Group (NJ), a medicare expert who explained the difference and why I need better coverage than what the system threw at me during my retirement.

GETTING SCANNED
Dr. Bard was recognized by the MBCC as our first clinical advisor. His office in NYC became the first male-friendly breast cancer screening center and is most knowledgeable about men issues pertaining to breast, prostate and other cancers. He set up the “Second Opinion” program which was perfect for me because I had been checked by several doctors but I was not confident about their findings. In fact, between the (weak) coverage I had, I felt I needed to get a more trusted second opinion and a scan.

Dr. Bard was extremely thorough and I found him to be the best man for the job. He didn’t stop at the focus areas; Dr. Bard even scanned my lymph nodes, my bladder, lungs and other areas where cancer might happen. What he found was a benign tumor- what they call a LIPOMA that is not cancer related (whew!) and the bloating may be managed with a certain type of food adjustment. His set of images gave me real peace of mind and a good place to start. On the same day, I took home a copy of the scan which gave me the control I needed to address this further with others if it got worse.

This experience taught me a lot. Being alive today to learn a lesson is a good place to be! I learned to upgrade my insurance plan and how a “good deal” may be so limited when you need it most (especially for someone with a pre-existing condition).  I learned that not all doctors are the same- and settling for the doctors on your plan may not always be enough. Most importantly, I learned to never keep something like this to yourself ever again. Get other people involved, get their opinions and surround yourself with smart people who care.

When it comes to our health, TIME is everything. Like they say at the MTA, if you see something, say something... and don't stop until you're SAFE! (edited by NYCRA writing team)

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Extra: Video Seminar
Cancer Recurrence Prevention 101

Watch this FREE presentation delivered by Dr. Jesse A. Stoff, Immunology Specialist at the 2019 Male Breast Cancer Coalition Conference. It covers the major fundamentals to reduce your risk of getting cancer or the recurrence of cancer. Seminar Link 


Disclaimer & Copyright Notice: The materials provided on this website/web-based article are copyrighted and the intellectual property of the publishers/producers (The NY Cancer Resource Alliance/IntermediaWorx inc. and Bard Diagnostic Research & Educational Programs). It is provided publicly strictly for informational purposes within non-commercial use and not for purposes of resale, distribution, public display or performance. Unless otherwise indicated on this web based page, sharing, re-posting, re-publishing of this work is strictly prohibited without due permission from the publishers.  Also, certain content may be licensed from third-parties. The licenses for some of this Content may contain additional terms. When such Content licenses contain additional terms, we will make these terms available to you on those pages (which his incorporated herein by reference).The publishers/producers of this site and its contents such as videos, graphics, text, and other materials published are not intended to be a substitute for professional medical advice, diagnosis, or treatment. For any questions you may have regarding a medical condition, please always seek the advice of your physician or a qualified health provider. Do not postpone or disregard any professional medical advice over something you may have seen or read on this website. If you think you may have a medical emergency, call your doctor or 9-1-1 immediately.  This website does not support, endorse or recommend any specific products, tests, physicians, procedures, treatment opinions or other information that may be mentioned on this site. Referencing any content or information seen or published in this website or shared by other visitors of this website is solely at your own risk. The publishers/producers of this Internet web site reserves the right, at its sole discretion, to modify, disable access to, or discontinue, temporarily or permanently, all or any part of this Internet web site or any information contained thereon without liability or notice to you.


Monday, April 29, 2019

FROM ADVERTISTY AND EMPATHY- THE LIST WAS BORN!

Autobiography by: Nancy Novack

I was diagnosed with stage IV ovarian cancer on April 29, 2004. It had metastasized into my liver. I was too happily innocent about the cancer world and I said two now-remarkable things: “Thank goodness, it is not appendicitis,” and “What is stage V?”

This is the story of my evolution from a very shocked and frightened cancer patient with a form of cancer that has earned itself a lousy reputation.

My simple and profound wish is that no one will ever go through cancer alone. I want every man, woman, teenager, and child who has to ‘walk the walk’ to have a hand to hold from someone who has been there, who understands the cancer mystery, and who will hang in there when times are tough.
I suppose my mission since my “cancer journey” is all about determining the unmet needs of cancer patients, especially the emotional aspects, and do my best to find a way to fill them. The path started with finding ways to assist patients financially, moved to a call-to-action in the community in which I lived, then the wild and wonderful adventure Nancy’s Club for the kids whose lives were touched with cancer, then my book I Am With You: Love Letters to Cancer Patients with 42 cancer survivors and caregivers for newly-diagnosed patients, and now my newest venture of developing a comprehensive national directory of integrative healing practitioners who offer their services (and their souls) to deepen the healing process.

NANCY'S LIST exists because of the big hearts of so many people who embrace the imperative that we need to stand up to cancer … with boundless love and compassion and inspiration … and take care of the many persons who are living with cancer, these resilient souls who are our true teachers.
I am oftentimes asked what I did that was so unique, so mysterious that I survived a lethal dose of cancer, the silent killer as ovarian cancer is often called. I was extraordinarily fortunate to have an excellent psychologist who worked closely with me to define and refine my personal relationship to my own cancer. I was blessed with a magnificent A-team of friends and family and so many angels that embraced me. For me, the opening of my heart to new loves and old brought forth an attitude of blessed gratitude that I had never known before. When I read and re-read the stories written by cancer survivors on my website, I see the universality of the attitude of gratitude in the process of healing.

What really healed me? Trust.

My relationship with my Stanford oncologist Dr. Branimir Sikic, his courage, caring, intelligence, and unwavering commitment to get me well. On that very first night, he told me, “Yours is a very bleak diagnosis. It will be a rocky road. But hang in there. I think I can help you. I am with you.” Those words speak to his profound compassion and they define the essence of this man. Those four words are my four favorite words in the world. They sustained me, gave me hope, taught me the inevitable power of human connection in the healing process.

He looked around the room, crowded with my friends and loved ones, and said, “When your loved ones go home tonight and you start to freak out about today, here is my home phone number. Feel free to call me.” I did, at about 2:30 am. Brandy was as gracious and generous in that phone call as he has always been, ever since.

He never dismissed my calls or my fears and, rather, guided me through the next step. Even when he was in his hometown in Croatia, he made the critical decisions about my treatment. When the oncology team was considering a liver transplant, he weighed in daily with his directives. No surgery because of Brandy. We did not do the transplant. And all is well.

Few doctors have said to their patients what Brandy once said to me. I wish they would. “This is very tough. I am giving you very aggressive treatments. If you are on antidepressants, double them. If you are not on them, get on them. And find yourself a solid psychologist, preferably someone who has been through cancer.”

Brandy made it possible for me to really trust — in him, the healing process, the world.
During my 21 long aggressive chemo sessions, I invited fellow cancer patients to tell me their stories. (I am a psychologist … I like to talk). They shared feelings of helplessness and hopelessness. They suffered intense feelings of isolation, distrust, anger, and profound sadness. They worried the very most about money … about bankruptcy, the lack of funds to cover the enormous medical expenses and their medications.


I was profoundly troubled that these kindred souls were experiencing so much fear and anxiety about their finances. How would that reality affect the possibility of their recovery? I vowed to make a difference. I knew that financial assistance was out there somewhere. I was determined to make it accessible. I received my 501 ©(3) non-profit status in 2006 and launched my first website. Nancy’s List was intended to be simply a list of financial resources. My intention was to educate cancer patients and their loved ones and the healing professionals who serve them about the accessibility of these programs.

When I was diagnosed in 2004, I was living in Mill Valley in Marin County, right across the Golden Gate Bridge from San Francisco. There was an especially high incidence of breast and prostate cancer in the area. Despite the major efforts to determine the cause and laughing over some very strange speculations (‘The women drink too much white wine’), no one knew why. Families and friends were deeply affected … and in fear. I had many meetings with the cancer care organizations to see what was needed to support those who were living with cancer.

Quite serendipitously, 5 or 6 women independently came to visit with me. Many of their friends had recently been diagnosed with breast cancer. These were strong, healthy women in their early 30s. They were yogis, vegans, and soccer moms. Many were quite angry and depressed … they had assumed that they were not vulnerable to cancer since they ate kale every day. I collected the group of very concerned women, cooked them very healthy meals (few with kale), and we brainstormed about what we could do for their friends and for themselves. They called themselves Nancy’s Angels.

I envisioned a Call-to-Action to develop a community partnership to meet the epidemic of cancer that our community was facing. We knew that we could not rely on the healthcare system to focus on the many emotional, psychosocial, and spiritual challenges that come with a cancer diagnosis. We could reach out and support the courage, bravery, and resilience of our neighbors.

Through the Nancy’s List programs, cancer patients and their loved ones found community, strength, courage, pleasure, and healing relationships. There is healing power when one is connected to the larger community, especially when you are experiencing fear, loneliness, isolation, and uncertainty. It means everything to know your neighbors are looking out for you. And it is a very good thing to meet kindred souls along the path.

"It does take a village to handle this crisis and we built a magnificent one."

Another project …I Am With You: Love Letters to Cancer Patients is a powerful book for the newly diagnosed patient, for those who are going through treatment or have entered remission, for loved ones, and for everyone else in the world.

I created the anthology with 42 authors who truly share my vision, my passion, my mission. We bring hope and courage to patients when they need inspiration, when they are feeling the loneliness and fear and anger and loss that go hand in hand with a cancer diagnosis, when they need comfort and a warm heart and a hand to hold. Our book offers connection to kindred spirits who ‘know’.

IAWY is truly a love letter. Our wish is that this offering of hope and healing will sustain cancer patients through those first frightening nights and every night thereafter. This is the spirit in which this anthology was written …  by, and for, amazing cancer patients everywhere.

My latest project … I want cancer patients to have the opportunity to experience healing other than dreadful visits to the infusion rooms, radiation offices, and more. I want to educate patients and healing professionals about the enormous benefits of integrative healing services AND the accessibility of these therapies.

I am creating a national directory of cancer centers and practitioners who complement traditional cancer treatments. I am especially interested in adding more psycho-oncologists, marriage and family therapists, trauma and EMDR specialists, massage therapists, practitioners who work with clients in the dying process (as well as dealing with anger, grief and loss), creative modalities (drumming, art, dance, writing, etc.), pampering, nutrition, fitness … just about everyone who serves those who are living with cancer.

I invite you to participate in the Nancy’s List community.


Disclaimer & Copyright Notice: The materials provided on this website/web-based article are copyrighted and the intellectual property of the publishers/producers (The NY Cancer Resource Alliance/IntermediaWorx inc. and Bard Diagnostic Research & Educational Programs). It is provided publicly strictly for informational purposes within non-commercial use and not for purposes of resale, distribution, public display or performance. Unless otherwise indicated on this web based page, sharing, re-posting, re-publishing of this work is strictly prohibited without due permission from the publishers.  Also, certain content may be licensed from third-parties. The licenses for some of this Content may contain additional terms. When such Content licenses contain additional terms, we will make these terms available to you on those pages (which his incorporated herein by reference).The publishers/producers of this site and its contents such as videos, graphics, text, and other materials published are not intended to be a substitute for professional medical advice, diagnosis, or treatment. For any questions you may have regarding a medical condition, please always seek the advice of your physician or a qualified health provider. Do not postpone or disregard any professional medical advice over something you may have seen or read on this website. If you think you may have a medical emergency, call your doctor or 9-1-1 immediately.  This website does not support, endorse or recommend any specific products, tests, physicians, procedures, treatment opinions or other information that may be mentioned on this site. Referencing any content or information seen or published in this website or shared by other visitors of this website is solely at your own risk. The publishers/producers of this Internet web site reserves the right, at its sole discretion, to modify, disable access to, or discontinue, temporarily or permanently, all or any part of this Internet web site or any information contained thereon without liability or notice to you.



Thursday, March 28, 2019

What is "GET CHECKED NOW!" ?








THE TWO‐PART MISSION TO SAVE LIVES
Fact: Cancer is a grim and dark topic that no one enjoys talking about. It’s not uncommon for many to BURY the idea that you could be NEXT-- preferring to believe cancer can happen to someone else. But history shows that CANCER WILL ALWAYS SURPRISE YOU! This is why creating a ground attack and a crusade needs to happen to "get the drop on cancer."  We can do this by staying smart with awareness, get vigilant with a healthy lifestyle and keeping our eyes open for this sneaky disease before it catches you!

Any cancer survivor, cancer specialist or patient advocate will tell you that fighting cancer requires a ONE‐TWO PUNCH comprised of EDUCATIONAL AWARENESS to reinforce a proactive lifestyle and the right information of what’s truly available in the treatment world. The second half of the battle is taking on the regimen of Early Detection and Prevention through REGULAR CHECKUPS & SCREENING. That’s the smarts behind the ‘GET CHECKED NOW!’ message and our public message to our community.



We have a growing list of partners that are now endorsing our message- including:

BE MY HERO- GET CHECKED NOW!
"In my tenure as one of the founding directors of the Male Breast Cancer Coalition, I have met so many brave and inspiring men who have come forward about this plaguing disease. Against the odds, they stepped up to get a complete diagnosis, underwent the process of cancer treatment and are still with us today- walking this earth to spread the word to others about how REAL Male Breast Cancer truly is!

Recently, I have met a growing number of FIREFIGHTERS in our area who fell prey to this disorder. As OCCUPATIONAL HAZARDS go, first responders carry some of the highest risk for cancers due to the exposure to some of the most horrible toxins. But the real danger is the stigma about getting Breast Cancer that keeps them from getting checkups. Thanks to NYCRA's "Get Checked Now" campaign, more and more are getting our message on time to address the cancer, and to stay vigilant about EARLY DETECTION & PREVENTION about this cancer and all other cancers that threaten our lives."

- Cheri Ambrose, www.mbcscan.com & www.malebreastcancercoalition.org


Disclaimer & Copyright Notice: The materials provided on this website/web-based article are copyrighted and the intellectual property of the publishers/producers (The NY Cancer Resource Alliance/IntermediaWorx inc. and Bard Diagnostic Research & Educational Programs). It is provided publicly strictly for informational purposes within non-commercial use and not for purposes of resale, distribution, public display or performance. Unless otherwise indicated on this web based page, sharing, re-posting, re-publishing of this work is strictly prohibited without due permission from the publishers.  Also, certain content may be licensed from third-parties. The licenses for some of this Content may contain additional terms. When such Content licenses contain additional terms, we will make these terms available to you on those pages (which his incorporated herein by reference).The publishers/producers of this site and its contents such as videos, graphics, text, and other materials published are not intended to be a substitute for professional medical advice, diagnosis, or treatment. For any questions you may have regarding a medical condition, please always seek the advice of your physician or a qualified health provider. Do not postpone or disregard any professional medical advice over something you may have seen or read on this website. If you think you may have a medical emergency, call your doctor or 9-1-1 immediately.  This website does not support, endorse or recommend any specific products, tests, physicians, procedures, treatment opinions or other information that may be mentioned on this site. Referencing any content or information seen or published in this website or shared by other visitors of this website is solely at your own risk. The publishers/producers of this Internet web site reserves the right, at its sole discretion, to modify, disable access to, or discontinue, temporarily or permanently, all or any part of this Internet web site or any information contained thereon without liability or notice to you.


Thursday, March 14, 2019

RECURRENCE PREVENTION FROM A 3-TIME CANCER SURVIVOR: VANESSA SILVA

My name is Vanessa Silva. I was diagnosed with breast cancer in 2007 after my father was first diagnosed with breast cancer where he was identified as BRCA2 positive.   I found out in a very roundabout way. I only went for a check-up because my doctor wanted to be proactive, and she just wanted to confirm that I was healthy.  More importantly, she wanted to check to see that I wasn't carrying the gene. But during the mammogram, they told me to go upstairs to see my doctor.  Right then and there I knew they were going to tell me I had cancer. I spoke to my doctor and she confirmed it.

I can remember crying- then saying, "Okay, you need to get yourself together. There's options. They said it was at stage zero. It's not a death sentence. We're going to do what we have to do... but you're probably going to be BRCA2 positive, as well."  The battle for me started with chemotherapy- but not radiation. In a matter of weeks, they realized the cancer was more aggressive than they thought, and it wasn't at stage zero after all because it already had gone to the lymph nodes.

RECURRENCE: PART 1
During the treatment process, I pushed to do my part and changed the way I lived starting with the way I ate. I exercised, I stopped eating meat and I did everything by the book ... and sure enough, I was told I was cancer free!.  So after five years, I felt it was safe to go back to old habits and eat the things I missed the most – including meats. I was still working out, but admittedly, junk food managed to creep its way into my system.

My cancer came back after roughly eight years. 

One day, while taking a shower, I decided to check and feel for any lumps- just to make sure everything's okay.  Surprisingly, I felt a lump. It was small but experience says to keep an eye on it.  By September, it grew to the size of a pea and it was getting bigger.  My doctor elected a sonogram then an MRI just to confirm that my cancer came back.

This time, I was angry, because I felt like I did everything I needed to do. I did the chemo. I honestly didn't believe my eating would have brought my cancer back.  They recommended four treatments of chemo, but this time it was stronger. For the first time, I had to take Taxotere, and then, this time, I had to do the AC.

I looked at my husband and said, "This is a joke. I feel like I'm being punked… we're going to do this again!" I started the first chemo treatment and became really, really sick. I was hospitalized for a week. I could not tolerate the chemo's side effects; it was way too strong. And I told them, "What are my options, because I can't do four treatments with the way I was feeling."  It really hit my body hard- so they redirected me to 6 weeks of radiation treatments.

So again, I stopped eating meat, stopped sugar, went back to the juicing, I did my daily routine of walking (I live by Central Park, so I would walk the reservoir).  I was religious with my health especially during and even after I was done with the treatments.

But a year later, I kept up with my self exams to make sure there were no lumps, and then ended up finding another one - this time on the right side! Very small again, underneath my breast - and just like the last one, it started to grow.

For the third time, the cancer had come back.

Once again, I underwent surgery to remove the cancer. It did not go to the lymph nodes, so they didn't recommend chemo this time around, but I had to do radiation again for six weeks. This was my reality. I had cancer in 2007- then again in 2014, and then the cancer came back in 2016.

What was confusing to me was that this time, I was so diligent about prevention- not having any meat, and constant juicing and exercising.  I feel as if my body produces cancer cells much faster than a regular person. I just have to be more vigilant with checking myself.

I try to make sure that I'm stress-free, that I don't put myself in situations that would make my immune system just crash.  My doctor and I are both very diligent about checkups and often do sonograms at the slightest concern. I see my breast surgeon every six months. And now, she's finally pushed it to a year, so I'm so happy with that.

FOOD 101: GOING 'CLEAN' AND ORGANIC
I think, meat plays a huge part in all of this because of the hormones that are being injected into them.  I do my best to buy products that say Non-Hormones, No Antibiotics, etc., however, how much of that is true.  I was convinced that I needed to stop eating meats all together and to stop putting all of these processed products into my body and start eating a much healthier diet.

Eventually, I would like to become a vegan, but I know there's so many things that I really enjoy eating, like eggs and cheese. But slowly, I've been pulling away from eating eggs. It's been a year since the last time I’ve eaten eggs, but cheese is a hard one to quit. I'm just trying to eat a more "clean" foods-- a lot more vegetables, a lot more fruits, and making sure that I wash them, and they're organic.

Organic and gluten-free was the way to go for me! I don't drink dairy milk anymore only almond milk. I'm really trying NOT to introduce the bad stuff to my children. Two of them are already grown, I really try to give my youngest one ZERO red meat except maybe once a month.  Sometimes, it's turkey or chicken, but even that, we've really pulled away from. I try not to be as restrictive with them because they're young, and they should make their own decisions later, however, I want them to be knowledgeable of what they put into their bodies.  Zero sugar is hard to do but we try to stay away from candy, donuts and pastries.

(End of part 1)

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This article is a feature interview with Mrs. Vanessa Silva, 3x Breast Cancer Survivor and ambassador of the "GetCheckedNow!" program by Awareness for a Cure.




Extra: Cancer Survivorship
Strong evidence suggests that physical activity reduces the risk of several cancers, including breast and colon cancers.  Worldwide, around 10% of breast and colon cancer cases are linked to a lack of activity.3 Being physically active also helps prevent overweight or obesity, which may reduce a person’s risk of certain cancers related to excess body weight. In addition to helping prevent cancer, physical activity is also important for cancer survivors. One-third of cancer deaths in the United States are linked to physical activity and dietary factors. Cancer survivors who are physically active have a better quality of life and better physical fitness than survivors who are inactive. In addition, studies suggest that adults with breast or colon cancer who are physically active are less likely to die prematurely or have a recurrence of their cancer. Physical activity may also play a role in reducing adverse effects of cancer treatment.  (see complete article)

Sponsors & Special Thanks:
1) (Article sponsor 1) Male Breast Cancer Coalition: www.malebreastcancercoalition.org
2) (Article sponsor 2) Integrative Medicine of NY: www.IMOFNY.com
3) (Article Sponsor 3) Male Breast CancerScan: www.MBCScan.com
4) (Publisher) Awareness for a Cure: www.AwarenessforaCure.org
5) (Co-Publisher): NY Cancer Resource Alliance:  www.NYCRAlliance.org
6) (Associate Sponsor) LI2Day: www.LI2daywalk.org
7) (Associate Sponsor) IvyGene Labs: www.ivygenelabs.com
8) (Associate Sponsor) Cell Therapy Center of NY: www.cellsforhealing.com
9) The BioFoundation for Angiogenesis Research and Dev.  www.angiofoundation.org
10) JAG Professional Coaching: www.jagtheracoach.com

Technical References
1) https://www.cdc.gov/cancer/dcpc/research/articles/survivorship-supplement.htm
2) https://www.cdc.gov/genomics/gtesting/egapp/recommend/gep.htm
3) https://www.cdc.gov/cancer/survivors/pdf/plan.pdf
4) https://www.cdc.gov/cancer/dcpc/prevention/policies_practices/physical_activity/index.htm


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DISCLAIMER:
The information provided in this article is written  and submitted by the writer whose name is stated in the title who provided express consent to the publishing of this material.  This article is not meant to be used to diagnose, treat or advise others about what actions they should take with regard to any medical condition.  No one should undertake or discontinue any treatment as a result of what they read on our blogs. The publisher(s), editors, sponsors or other  "supporting members" of AwarenessforaCure.org are providing a strictly educational service and are not responsible for the diagnosis or treatment of any specific health needs. and are not liable for any damages or negative consequences from any treatment, action, application or preparation to any person(s) reading the information in this article or its thread. Readers with medical needs should obtain appropriate professional medical supervision. References are provided for any informational purposes only and do not constitute endorsement of any websites or other sources.

Wednesday, November 7, 2018

THE OBSTACLES OF GETTING A “RARE” NEW CANCER (Part 1)

By: Jennifer Cook (BIA-ALCL Survivor)
Published/Edited by: Carmen Regallo-Dewitt / Lennard Gettz -Awareness for a Cure writing team


By now, most people are aware of cancers like lung, breast, prostate etc. –enough to know how to research about it. But a cancer related to breast implants is something that unless you happen to be watching the news recently, you may be completely in the dark about it. Furthermore, many doctors are still not providing the right conclusion about implant-associated disorders, deeming implants to NOT cause cancer.

In August of 2017, I was diagnosed with Breast Implant-Associated Anaplastic Large Cell Lymphoma (BIA-ALCL) and I immediately went on the internet looking for more information. I was aware of the disease prior to joining, but it was Jamie Cook who put me in touch immediately with a doctor at MD Anderson.  Within hours, someone called me with information on this disease and basically helped me make sure that I got the right treatment for it.  For me this group was a life saver.

Today, our BIA-ALCL group has 123 members who have been diagnosed with this lymphoma aside from the thousands of other members who are concerned about their potential implant disorders.  It's not a disease that has existed before and it's just now also being found in association with implants. And actually on a genetic level, it's completely different and new. I've had surgery and chemotherapy and I just go back to MD Anderson in Texas every couple of months for follow-up PET-CT scans and MRI’s, just to check for any remaining evidence of the lymphoma. So far there has not been, but obviously it has not been very long.

DISCOVERING MY IMPLANT DISORDER
It all started for me in 2016. I was a middle school teacher watching a performance by my students about self-image. Part of the dialogue in this skit had to do with cosmetic surgery where one of the young performers was saying, "You know I wouldn't do cosmetic surgery… I'm comfortable with how I look—plus, implants have been found to even cause cancer." That was the first time I had ever heard of this.   As someone with breast implants, I was prompted to race home to Google it- and lo and behold, I saw that there had been things in the news and reports of it being related to cancer. Posts also noted the chances of getting it was about one million to one- equating it with being struck by lightning, which somewhat alleviated my fears.

Not too long after, I noticed that one of my breasts felt different and I started feeling around. Women tend to be trained to always be aware of changes in our breasts and do breast exams, including concerns unrelated to implants. I felt a little lump and responded immediately by seeing the doctor to have it checked.  My main thought was breast cancer. I got a scan and I meet with breast surgeons and I inquired about this rare large cell lymphoma.  None of them ever heard of it and instead focused on breast cancer, completely invalidating my questions about BIA-ALCL.  I tried to convince myself to stay on their track since breast cancer is ‘one in eight’- a much higher possibility.

STANDING MY GROUND
So after an MRI, my knowledge of this lymphoma is to be on the alert for a seroma. That's one of the main symptoms is this fluid around the implants. The results tell me that the lump I'm feeling is scar tissue, and they don't mention anything about a seroma which told me I don't have any symptoms of this cancer and I don't have any symptoms of this large cell lymphoma. But a year later, I felt something new and unusual in my breast.  My bras were getting tighter and my breasts seemed more asymmetrical so I felt like there was something like urgent happening.  I also continued to feel along my left breast and noticed that the  implant edge I could feel along the underside of my breast seemed to be thickening and it had developed a distinct lump that I didn’t recall being there before.

This time I am scheduled to meet with a plastic surgeon. And again I bring up this lymphoma, and I'm actually becoming more alarmed because I'm continuing to read more about it and by now, I feel like I just need to get these implants out. Like the reports I read, he mentioned how rare it was. Worse yet, he accused me of being a hypochondriac, always wanting reassurance.  With such brazen confidence, he stated- "You don't have that lymphoma… you don't have it!".  He even reprimanded me saying that, "You don't live your life like you're going to win the lottery." Our exchange continued where he agreed that I should move forward with a biopsy of the lump or thickened spot on the palpable edge of my implant but was very discouraging in doing anything to take the implants out, or testing for this lymphoma.

I stood my ground this time- especially because my copy of the more detailed description in my last MRI indicated they did actually see some fluid, but they never told me about it.  As it turned out, the biopsy of that lump was what led to my diagnosis. Where most explants usually happen first, my insistence in getting a biopsy to find the answer proved me positive for BIA-ALCL.

When you've got awareness about this lymphoma, you’ll find the major lack of knowledge in the medical community that makes it very difficult to get the proper intervention. Because even the symptoms of it, the fluid around the implants, it is not easy to detect. My experience showed that much of the distorted information out there leads people to the wrong way of handling this.  As “rare” a cancer as this may be, should you be one of the unlucky few that gets this lymphoma, identifying the symptoms is NOT easy nor is getting all doctors on your side.  I see this all the time (with my case and many others) that radiologists can have a hard time identifying fluid.  There's even a notion that having a certain amount of fluid is normal.

HEALING THE WORLD AT LARGE
This entire experience brings me back to my students’ play and that's just pure happenstance.  To be an activist means I'm almost in a panic daily for women because I don't know how women are going to get this information.  As with most cancers, you know the sooner you get to it, the much better chance you have. The great news is that if this VERY REAL disease is diagnosed early, it can be successfully treated.  But it's going to be hard for all of the women who have it taking place in their bodies to be aware of it because it's not widely known and supported and the very people that are in the position to speak and help show a major lack of understanding about it.

The best solution to all this is that any woman with textured (and even non-textured) implants will need to completely educate themselves on what is currently known about this disease. This includes getting frequent checkups and trusting your instincts for a second opinion if you don’t get the support you need.

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EPILOGUE:
As of November 2, 2018, the American Society of Plastic Surgeons now recognizes 615 cases of BIA-ALCL worldwide.  After meeting with breast-implant victim advocates this summer, including Jennifer Cook and four other women diagnosed with BIA-ALCL, the FDA announced that they will hold a public Advisory Committee meeting in 2019 to address BIA-ALCL and other implant safety concerns.  In anticipation of this meeting, implant victim advocacy groups are now demanding that the FDA do more to ensure that its 2019 Advisory Committee is not dominated--as it has been in the past--by plastic surgeons whose income is tied to sale of implants.  By including more unbiased doctors on the committee, advocates hope the FDA will finally be able to make decisions that truly put the safety of women first.

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Sponsors & Supporters:
1) Bard Diagnostic Imaging: Implant Screening & Monitoring Program
2) NY Cancer Resource Alliance
3) Awareness for a Cure
4) IvyGene- Cancer Lab Testing
5) Dr. Jesse Stoff / Integrative Medicine of NY
6) Dr. Stephen Chagares (Breast Surgeon)
7) LI2Day / Fight Like a Girl (Mrs. Jennifer Hunt)
8) The Male Breast Cancer Coalition

This article is endorsed by:














Additional Reference Links:
1) BIA ALCL Breast Implant Lymphoma (Facebook Group)
2) US Food & Drug Admin /FDA- Background info about BIA-ALCL

Special thanks to:
Jennifer Cook wishes to express her gratitude to Dr. Mark W.Clemens and the American Society of Plastic Surgeons for their efforts to track and disseminate information about BIA ALCL. Also a special thanks to MD Anderson Medical Center for generously sharing its expertise on BIA ALCL with patients and doctors around the world. Additional appreciation to SeattleGenetics and Takeda Pharmaceutical Company for their collaboration in developing brentuximab vedotin, a target chemotherapy drug that has saved the lives of numerous women with advanced cases of BIA ALCL after prior treatments failed. And lastly, warm thanks to Kaiser Permanente of Southern California and Anthem Blue Cross for approving the use of brentuximab vedotin as a first line treatment in my case of BIA ALCL.  

Thursday, September 27, 2018

Meet Larry Overcast- Retired Firefighter becomes Breast Cancer Missionary:

From an Interview with Awareness for a Cure reporter in 9/19/2018

They say you're cancer-free but in the back of your mind, there's always a chance of the 'boogerman' will jump up and get'ya.

I was a Shelbyville firefighter back in 1973, and I worked there until '76. then I came back in '86 and officially retired 2011; the whole time, we didn't have any breathing (protection) apparatus. I worked there of a total, probably 33 years as a firefighter; a driver; a captain, but this captain still had to fight fires.

We call it fire hall number one- as one of three stations in the city of Shelbyville, Tennessee.  When I came back in '86 they started carrying respiratory protection on their trucks, but we didn't use em, and then with all the new plastics and the new synthetic materials and stuff coming out; I think I was one of the first ones that started using it because I didn't want all that stuff in my lungs. Out of it, they say I've got a touch of COPD; I don't know if that came from the fire department because I never smoked.

"I HAVE BREAST CANCER!"
Around September 2016. I was out weed eating and mowing the grass. I wiped off sticks and sweat from my chest and that's when I felt something. I tried to wipe it off, and I looked down, and it was a little knot, about the size of the end of your little finger.

Just so happens I had a yearly physical with my doctor at that time. My blood and everything checked out alright; and she said, “you're in good shape.”  I found this to be a good time to point out the knot underneath my chest. She first thought it was nothing more than an ingrown hair.  I was not satisfied with that- and decided to get a second opinion with a nurse practitioner who saw it as something else; “I think we need to go a little further,” she said, “I'm not trying to scare you, but this is the way breast cancer starts out,” and I said, “okay.”

I was then referred to Dr. James Carter who sent me to an imaging place, and they did a CAT Scan, then a 3D Mammogram then an ultrasound- and all that confirmed there was something definitely there. Everything they did showed something, that's the reason I went and had a biopsy- and that confirmed the breast cancer. My first reaction came from survival mode: “well, doc- there's a knife... you're a doctor, just cut it out!” Of course, that's not the way it works with doctors; he had to bring this to his people and make a whole plan.    At this point, I just told him, "you do whatever you gotta do; if you gotta do a mastectomy, or cut the whole thing out, or you gotta go further; do what you do-- "

Looking back at that, I've really been lucky; I thought I was going to die. I underwent the mastectomy on my left breast. then they gave me aggressive chemo. Of course you lose your hair, but my fingernails and toenails also fell off.  Also, my top teeth and part of my bottom teeth were destroyed and started breaking off like chalk.

CANCER SOURCE?
My mom had ovarian cancer at 1955; they gave her three months to live. My dad had throat cancer such that he couldn't talk because they removed his voice box.  Regardless of this, they didn't seem to link it to my family, but they didn't say anything to me about connecting it to being a firefighter either. When they tell you that you've got cancer, it just takes the air out of the room!  I wasn't into thinking about how I got it- I just went into the survival mode. I didn't bother to ask - but within the past year, I've been hearing a lot about firemen having cancers like prostate cancer or lung cancer.  Looking at this now, I can see the connection to firefighting.

PERSONAL ADVOCACY
I never knew anybody else to have breast cancer til I met the Male Breast Cancer Coalition.  Today, I'm proud to wear shirts like this with a message to the world: “Supporting the fighters, admiring the survivors, honoring the taken, and never giving up hope.”  Somewhere out there, another cancer comes up. And I tell everybody I  had breast cancer... and I say, “you need to go have a mammogram!” The public needs to know that men get breast cancer too... black or white; daddy; uncle; brother; son. It can happen to a male; it happened to me, and I was in tip-top shape; I didn't take any kind of medicine what so ever, and if it can happen to me; it can happen to you.



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Special thanks to:


This article is sponsored by:


Additional Sponsors:















Thursday, September 13, 2018

Meet the Survivors from The Male Breast Cancer Coalition


Meet some of the many remarkable men who have overcome the battle against Male Breast Cancer.  Read their stories and get inspired by their strengths and the will to rise above this debilitating disease.  Thanks to the loving support from the Male Breast Cancer Coalition, awareness and resources are made available for men and their families worldwide.


BRET MILLER
My breast cancer was 88% estrogen based and I was prescribed Tamoxifen. The side effects were awful, I didn’t realize it at first but I was moody, having hot flashes and was not pleasant to be around. After six weeks, I was taken off the Tamoxifen.  Right now, I’m taking Anastrozole daily. My mission now is to spread the word to everyone, men & women, young & old, that breast cancer does not discriminate, it can happen to anyone at any age and to MEN too!  On May 19, 2010, I started The Bret Miller 1T Foundation with the help of my parents Peggy & Bob Miller. Only 1 T in my name and now 1 Tit and 1 Nip for those keeping track (have to have some humor every now n’ then). The goal of the foundation is to raise awareness in colleges and high schools telling our youth that breast cancer can happen to anyone!  Male breast cancer survivors share their journeys and let students know they are their own best advocates for their bodies.  We tell people if they find something that doesn’t feel right they must talk with a doctor, don’t ignore anything. If you don’t like the answer given to you, get a second, third or fourth opinion. Don’t rest until you get the answers you want. Early detection is the first step in the fight against breast cancer!  (See Bret Miller's complete article)


JOHN MORMONDO
Up to that point, I was a healthy 51-year-old. I’m not exaggerating when I say I was probably in the best shape of my life. I had just competed in an Ironman 70.3 Triathlon in September 2017 and ran the NYC marathon in November 2017. I was in the very beginning of starting to train for a Full 140.6 Ironman in Louisville when I spotted a small lump on my chest.  I immediately brought it to the attention of my doctor who sent me for a biopsy on March 19th. Four days later I got my diagnosis. After interviewing three different cancer surgeons, I went with NYU Langone Cancer Center in NYC.  On April 17th I had a right-side mastectomy with a lymph node dissection. On my left side I got a breast reduction to even my body out. It just so happened that after pathology they found a small cancerous tumor there too. A 51-year-old male in great shape with bilateral breast cancer. I was shocked to say the least.
(See John Mormondo's complete article)


N'KOSI CAMPBELL
When I was in the military and growing up playing sports I was always told to “suck it up, pain is just weakness leaving your body.” So that’s exactly what I did. I ignored it for months and months. It wasn’t until a friend of mine could tell I was in physical pain that I
finally went to get it checked out. Even then she pretty much had to force me to go.  When I did finally get to the doctor it got really weird really quick. After all the basic questions, the doctor started to examine my chest, or should I say “breast” which again is weird to me, because I never had a breast exam. The doctor had some concerns, so he referred me to another clinic for a later date. When I did get to the referred office imagine my surprise when I discovered it was a breast examination facility.  I walked into the office, went up to the receptionist and quietly told her, “I’m here for my appointment.” She gave me a look as if to say “yeah right I think you’re in the wrong office.” When she called my name, sure enough I was in the right place. This is when all the fun stuff started. They started to give me tests that completely caught me off guard, primarily because all the tests were associated with women (IE breast exam, mammogram, and breast biopsy). Then after several days of tests I was told I had Breast Cancer!  (See N’Kosi Campbell's complete article)

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MEN HAVE BREASTS TOO

A Series about Breast Cancer in Men

MEN HAVE BREASTS TOO is an ongoing video series about breast cancer in men. Produced by The Male Breast Cancer Coalition, the MEN HAVE BREASTS TOO series includes short documentaries with men who have been diagnosed with breast cancer, the latest news and information about male breast cancer from medical experts, stories from family members of survivors and men lost to the disease, the impact genetic mutations have on men and their families and much more.

On behalf of Awareness for a Cure and the cancer fundraising community, we give special thanks to Cheri Ambrose and Peggy Miller of the Male Breast Cancer Coalition- whose support and hard work continues to spark the lifeline and public presence of such a vital organization for men's health and cancer survivorship.  

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SPONSORS:





Wednesday, September 12, 2018

9/11 Responder Joins Awareness Mission to Battle Cancer Threats


MESSAGE FROM A 9/11 RESCUE RESPONDER
"I (still) see and hear about people being diagnosed with cancer every single day from 9/11.  I'm afraid there's no end in sight-- It's because of this that I'm so driven to get myself checked out regularly... and I also try to get everyone to get screenings.  However way I can do that, if it's through an article in the paper, if it's something online, anything that we can do... it's gotta happen!" - Richard Marrone

I worked for FDNY EMS during 9/11 to assist in the rescue recovery efforts, working out of Battalion 55 in the South Bronx.  I got there after the towers had collapsed and was assigned there on and off for 10 months. 

THE KILLER DUST
It was just everywhere. The DUST was so thick it would dry your eyes out. You couldn't breathe. As EMS, that was a lot of what we were doing was just constantly cleaning people's eyes out. There's nothing you can do to get away from it. I know what was in those particulates--it was asbestos, it was concrete, it was human remains, metals and any possible contamination in a fire... it was all there.

Nobody was protected. Even the firefighters who had self-contained breathing apparatus, you're only getting 15 or 20 minutes maximum on those cylinders, and there just wasn't enough to keep constantly replacing them. The police officers and EMS personnel were using surgical masks, which basically provided no protection whatsoever.  We mostly treated rescue workers on site due to the dust-- eyes and stuff like that. There really wasn't enough eye or respiratory protection, so anybody that became a patient post-collapse was due to the contamination and the toxins of 9/11.

There were EMT's and paramedics that were killed during the collapse. At the time of the incident, it was a no-holds-barred. I mean, everybody responded to that, whether you were FDNY, EMS, St. Vincent's, a voluntary hospital, or a private ambulance-- everybody responded!  As far as the police departments, same thing; New York City Police, Suffolk County, Nassau County, New Jersey-- everybody responded to this. We had EMS coming from as far as Buffalo and Niagara Falls. 


TOXIC DUST TRAVELS HOME
But another concern of mine is the peripheral contaminants that may have affected the forgotten people in all this; the family members that the responders came home to.  Think about whomever was handling our clothing & laundry-- I would come home, take my clothes off outside the house, bring them in and my wife would put them in the wash.   Every time I was exposed to the Trade Center, so was she. She never went down to Manhattan but I brought it all home to HER. How many other wives and husbands and people associated with rescue workers have come down with an illness due to 9/11 and never once stepped foot down at 9/11?  DUST gets everywhere and situations like this are how a disease travels.

UPGRADES IN THE SYSTEM
It's been 17 years today.  We've had a lot of funerals due to 9/11 related cancers and there's no end to this. 
We all learned a lot from 9/11 as a learning aspect and a lot of protocols were created because of it.  It's pretty enforced (now) that every single member of the police and fire departments have a full face chemical/respirator mask as a standard for personal protective equipment.    Also, the fire department along with the EMS branch has its own hazmat people. They train with hazmat and we have rescue medics.  Back then, you didn't have enough for ground zero because 9/11 didn't start out as a hazmat job; that was a plane crash, a building fire-- that was a collapse. It didn't become a hazmat job until after the buildings had fallen down and they realized that this is probably not good to breathe in.

GETTING CERTIFIED is MESSAGE #1
We all got certified and tested and some of us continue to get re-tested.   As the union delegate (then),  when it came close to the closing for the victims compensation certification, I made copies of every application and put them on the desk of every single member at my facility. And told them, "You have to fill this out. And then give it back to me." And then I would send it in to make sure that it got in. So I essentially was trying to force people to become certified, begging people to let me help you take care of your family in the event something happens. And most people were appreciative, and I was glad to do it.

Getting certified doesn't mean you have cancer or that you're sick.  Just because you certify yourself doesn't mean you're going to come down with an illness or that it designates you as a sick person or that you're going to be sick.  But if you worked at 9/11, you may become sick in the future, it's just a matter of WHEN. What this is about is to have you certify yourself so when that day comes, you and/or your family is taken care of. That's all there is.

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About the Author: 
Richard Marrone is a career veteran with the NY Fire Department, an active Emergency Medical Technician for the FDNY and a first responder at 9/11.  He spent a significant amount of time in Ground Zero since the attack treating all responders and civilian victims while being directly exposed to the deadly air and toxic dust that affected (and continue to affect) so many thousands. Today, he volunteers for various local cancer organizations and  cancer awareness groups and works as a health advocate for regular cancer screening & cancer prevention for all first responders, volunteers and civilians exposed to 9/11 toxic dust. 

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