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  • About Melanoma
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    Community Voices
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    #about ME
    IVE FIUGHT melanoma have terrible terrible fibromyalgia , recent yrs system Medicare Drs etc network have failed me
    Daughter about in July

    Day 28 of sick alone new house not unpacked. 3 infection,day 28 weakness ! Total, dehydrated, going down drain fear of unable to wake up in morn! Weight loss
    Instant awful shrink and wrinkles
    Pedialyte 24/7 , food/soup if could
    Dr twice but 28 days and a Wed , so much to do. Can only go to restroom or kitchen bed or couch every day
    Already disabled osteo and other painful bone on bone arthritis back bone spurs FIBRO more..... but live alone INDEPENDANT except few things for aid or delivry store or in house fix... and medications as must. Since 2013 and before , but disability since 2013 after 27 yr career raising family and NOT READY TO STOP BUT HAD TO AFTER EVERYONE KICKED THAT IN MY HEADCYOU MUST! For 2 years prior...... gotta go no djs Deb Debra :) #

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    Mark H.

    We Need Better Sharing of Family Genetic Tests and Risks Information

    As I walked past the bookcase the other day on my way out to the backyard, I glanced over and saw our wedding picture and the urn holding my wife’s ashes next to it. Instantly an enormous wave of grief crashed down upon me that brought me to my knees. “I should not be a widower and solo parent!” I screamed into my hands. My wife was a world-class master educator of elementary school students and a mentor of teachers. She also was my soul mate, muse, creative partner, adventure companion, co-parent, and best friend. We had been nearly inseparable from the moment we met 42 years ago until she died in my arms from triple-negative metastatic breast cancer. The grief of losing her and all that we had done and accomplished in our lives together is nearly unbearable. We had so many grand adventures together. And with so many hopes and dreams we had for our approaching retirement as well as all of our daughter’s future accomplishments and milestones to celebrate, there was so much to look forward to. Now lost to her to a curse called cancer. My wife’s nearly four-year cancer struggle was a nightmare journey through hell for her, for me as her caregiver, and for our daughter. Almost from the moment she found the lump until her last breath, it was one traumatic heartbreaking crisis after another. How truly awful it was is beyond words. But it was all preventable. My wife didn’t have to get cancer. Unfortunately, she was unaware that she had inherited a BRCA2 mutation from her father, which allowed the cancer to develop. Sadly, her father died of metastatic melanoma, a BRCA2-related cancer, years before gene sequencing would have been widely available. But a few years after her father’s death, a male relative developed a rare cancer and this time genetic testing was done. That’s when a germline BRCA2 mutation was confirmed. Tragically, the crucial gene sequencing data, the deadly seriousness of the risk, and the extremely urgent need to get genetically tested was never expressly shared by the relative acutely aware of the family’s mutation. Had my wife known specific details about the mutation possibility, she would have had genetic testing to look for the mutation. Once confirmed, she then would have opted for prophylactic surgery that would have reduced her risk of getting cancer by at least 95%. I do feel that my wife’s cancer struggles and untimely death was the result one relative not having the ability to sit down and explain the cancer risk and urgent need for genetic testing to family members. However, the blame also partly lies in our culture and in healthcare laws. In our culture, openly talking about serious medical issues among friends and family, especially cancer, is uncomfortable to say the least. Even when that information might be life-saving, the need to be medically proactive is poorly communicated, if at all. In addition, current healthcare privacy laws make it difficult for physicians and other medical service providers to share patients’ medical information with others. This puts the burden of sharing life-saving information on the shoulders of often confused and medically illiterate family members. But in the case of hereditary cancer and a genetic mutation, this should never be the case. A germline mutation is not an individual issue. It ceases to be that when it is apparent that other members of the family might carry the mutation and it is potentially life-threatening. This information needs to be effectively shared somehow. Putting numerous family members at risk of a horrible death just to prevent the disclosure of a genetic defect of one individual is ridiculous. To think my daughter and I lost someone so special to a horrible, but preventable cancer because only one person was trusted to comprehend and communicate the serious implications of a short, somewhat vague sentence on a gene sequencing report is excruciatingly painful. Things need to change.

    Community Voices
    Community Voices
    Community Voices
    Community Voices
    Community Voices
    Brandi Fulton

    The Reality of a 'Typical' Day, Week and Year With Health Anxiety

    One day. 5 a.m. I’m frantically Googling the percentage of people diagnosed with lymphoma at stage four, the life expectancy of lymphoma under 40 and rare side effects of chemotherapy. 1 p.m. I’m giving myself a Romberg test I saw on YouTube to see if I have sensory ataxia. 7 p.m. I’m measuring my blood pressure in eight-minute intervals to see if I have orthostatic hypotension. I take it five minutes after lying down, 30 seconds after standing up and two minutes after I sit. I lie, I sit, I stand, lie, sit, stand, lie, sit, stand. My left arm is covered in red scratches from scraping the machine cuff on and off. Seven days. Monday: I’m bent over the toilet with my iPhone flashlight examining my poo to see if it’s black, pencil thin, smeared with blood, yellow, floating, fatty or covered in mucus. Tuesday: I’m taking many, many pictures of my poo. I do it with the lights on and off and then the flash on and off to get the most detailed pictures. I rush to the computer to compare it to the images of colon cancer found on MedicineNet, WebMD and the American Cancer Society’s website. Wednesday: I’m hiding in my closet and meticulously searching my breasts for lumps, swelling, thickening, dimpling, red nipples, nipple discharge and pulling near the nipples. Thursday: I’m taking pictures of my breasts from all angles and swiping back and forth between them to find the most detailed. I want to make sure I have the clearest one to compare to the breast cancer images found on Healthline, Mayo Clinic and the CDC’s site. Friday: In secret, I’m downloading a microscope app to examine my skin for moles that are asymmetrical, have irregular borders, are bleeding, waxy, scabbing, scaly or red. Saturday: I download an app that diagnoses moles, and it finds something suspicious. I anxiously wait until Monday to call my dermatologist in case I have squamous cell carcinoma, basil cell carcinoma or melanoma. Sunday: The day of rest. 12 months. January: I’m waiting an hour in my doctor’s waiting room for him to fill out a requisition form for a complete blood count, basic metabolic panel and lipid panel. He says, “40 is when things start to go wrong.” February: I’m playing phone games for two hours as I wait in line to have a diagnostic mammogram and breast ultrasound. My doctor is concerned and says, “Your sister died young from breast cancer. We just need to be careful.” March: I’m at my optometrist’s office for a full exam and she tells me to come back immediately if I start to see lots of floaters or flashing lights. “That means your retina is detaching,” she explains. April: A month off from diagnostic tests. May: I’m freezing on an exam table in a blue gown, naked from the waist up. My doctor hands me an ultrasound requisition form because, although he can’t feel a lump, “It’s hard to feel breast cancer in young women. Always come in as soon as you think you feel something!” June: I’m starving for 12 hours because my bowels have to be spotless for my flexible sigmoidoscopy. My internist has me in the fetal position, in agony, searching my rectum and lower colon for inflammation, ulcers, abnormal tissue, polyps and cancer. My mom warns me, “Brandi, colon cancer runs in our family.” July: I’m once again naked and freezing, waiting for the dermatologist to inspect my body for suspicious lesions because my mom said, “Me and all four of your siblings had skin cancer.” August: My doctor is on holiday. September: I’m pinched by an IV for three hours to prepare for a polypectomy and a dilation and curettage. My gynecologist is searching for uterine polyps because, “I see something suspicious on your ultrasound.” October: My neurologist is sending me for a CT scan because she says, “Your numbness, tremor and tingling are probably just anxiety but let’s rule out any sort of brain lesion.” November: I’m naked again, freezing again, waiting for my gynecologist to scrape my cervix because he says, “Cervical cancer is rare, but you never know.” December: Everyone’s on Christmas vacation. I don’t want to know all these terms and symptoms, and yet, here I am. I’ve never been diagnosed with any of these diseases, but sometimes I live like I’m preparing to die. Can you relate? Let Brandi know in the comments below.