Metastatic Breast Cancer

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Metastatic Breast Cancer
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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.

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    On Still Being Cancer-Free and Beating COVID-19 Together

    There is a lot going on in the world right now. It is truly heartbreaking to hear the news every day, so today I choose to focus on something I can be grateful for and hope that someone can benefit from my perspective. Today I found out I am still cancer-free. Five-and-a-half  years ago they removed a metastatic breast cancer nodule from my lung. The diagnosis of metastatic cancer led me on a journey I never expected. I have learned so much along the way, but I will never know everything or have all the answers. I know I am not dying from cancer. I also know that despite my best efforts I am living with an aggressive chronic disease. I have explored and experienced the world of alternative medicine. I have been forced to navigate the frustrating healthcare system and battle with health insurance. I have learned to believe in methods science doesn’t support, but also appreciate the advancements and treatments science has to offer. I have questioned main stream medicine, Big Pharma and sometimes gone against the advice of doctors. I believe we are our best advocates. I believe people do heal themselves in ways that science cannot explain. I believe in hope, but I also believe in realism. If science offers a treatment option that pretty much guarantees success you better take it. But sometimes science doesn’t have good answers. That is why people explore the alternatives and sometimes they find success. Sometimes. I certainly have experience in this area but I am very grounded in reality. I guess I’m writing this because I do have a different perspective than many when it comes to health. Our communities, our country and the world have been fighting a virus for too long. The battle against this virus has us fighting amongst each other. We are not in this on our own. We are in this together. I’ve listened. I’ve read. I’ve researched. I’ve definitely watched too much news. But the bottom line for me is the choices I make affect the people around me, the people in my community and the people working to keep us safe and healthy. When I chose to pursue alternative therapies for cancer, that decision affected my health only. If I choose to go out in public when I’m coughing and sneezing I am potentially affecting the health of others. The pandemic has affected every area of our lives. We really don’t know the long-term effects on all of our school children. I know when the vaccine came out and things started to settle down we were all so happy to start getting back to normal. But the virus had other plans. I did not hesitate to get the vaccine. The risk to myself seemed minimal compared to the effects the pandemic was having on our kids, our healthcare workers, our economy and our mental health. That’s how I see it. It’s not just about me. If I choose not to be vaccinated then I should also choose not to put other people at risk. We have a choice in where we go, who we spend time with and how we protect ourselves. Risk versus benefit. I know there are vastly different opinions on the subject of COVID-19 and that’s OK. If you take anything from this, I hope it’s that we don’t have to agree but we should all want what’s in the best interest for each other. Look beyond the hype, the angry rhetoric, and the politics, and choose what’s in your heart.

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    WHAT is insomnia?Im in a stage IV cancer.I rarely sleep more than three hours , in the quiet if the night that’s when my memories of when I used to hike the trails around Lake Tahoe, or when I could
    Work, meeting children that needed help and guidance, I wake up missing my old life. Usually it’s the pain at night in my bones that does nothing to allow for me sleep.
    My Doctor has my Insomnia listed as A Mental Disorder. Is it? Or is it a side effect of chronic pain from metestatic breast cancer? #painwarrior #MetastaticBreastCancer # #Insomniac #I need sleep 😴

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    Mika S.
    Mika S. @mikainsb
    contributor

    Terminal Cancer Patient's Mental Health Better During COVID-19

    I know. You’re thinking I’m out of my mind. Bear with me. I have terminal cancer, but I am a lucky person with terminal cancer. I am dying very slowly and leading a fairly normal life. I have metastatic breast cancer in an era when drugs are buying years of time, with few side-effects and little if any immunosuppression. Having been diagnosed with cancer, originally in 2008, at the tender age of 31, I have confronted my mortality. Upon recurrence in 2015, it was unlikely I would live to 2020. (The fact that I am seeing 2020 is due mostly to the revolutionary drug that was FDA approved in 2015.) I see my life in weeks and months. Not years. I am 43. Most of my friends are between 35-45. And as COVID-19 descended on the general human psyche, I noticed my friends seemed irrationally fearful, taking precautions to extremes. I, on the other hand, feel I am taking “reasonable” precautions. In the lovely evening breeze, I will walk alone and mask free. As I biked to work today, while most people I know haven’t set foot in their office places in months, I thought of my office building where there will be eight other masked people. I will be in my own office, the doors propped open to encourage airflow, the surfaces sanitized. I had absolutely no fear of going to work. (By the way, you may ask, why am I working? Well, aside from the fact that healthcare in America is expensive, I can sit at home waiting to die or work, which generally I enjoy.) My two scenarios, a solo evening walk and my office, are both low risk. Most of my healthy friends would never dare to do either. And while I biked to work today, I suddenly understood. I never expected to live to today. I definitely don’t want to die and I do fear the uncomfortable path to death, but it has been my persistent reality and awareness, a thorn in my mental state, for over a decade. And for the first time ever, many of my friends are afraid of dying. They are confronting their mortality when they never have before. Many cancer patients have met the other patients who try something obsessive or radical, that have little if any basis in western medicine, let alone chronicled evidence, but are “treatments” that the cancer patient themselves fully control, such as alkaline or raw diets. When we are told we are dying, much sooner than we are mentally prepared for, there is this zealous, fanatical, desperate attempt to control the situation, as if we can change the outcome. Thus, fight or flight, we fight even if the means hardly has the vaguest rationale. And that is what my friends are doing. They are taking the extreme actions they can control because for the first time in their lives, they are scared. As a cancer patient, who makes decisions assuming I will live months, not years, I have always tried to explain how I see things and why my decisions are different. I have never felt understood. For the first time in my life, I feel my peer group has gotten a taste of my reality. I am not going to live 20 or 30 years. I am grateful to be here today. I make decisions for three months, not next summer. The year 2021 is a myth, until I see otherwise and science, in which I hope, delivers. The reason why COVID might be good for a cancer patient’s mental health is because for the first time in our lives, everyone is afraid and confronting their own mortality in a way the vast majority have never had to in their entire lives. And that confrontation is just unrelenting, on TV, in their actions, in every, every conversation. So while we, as cancer patients, fear more for our lives now, we finally have broad understanding across all of humanity. Almost everyone, to a varied degree, fears for themselves. Put this secret knowledge in your coping tool box, because it has unfortunately made everyone an ally. When confronted with someone who doesn’t understand the mental burden of living, always, as a dead man walking, remind them of their first real confrontation with their mortality, which may very well be now, COVID. Remind them how they felt when they realized it is real; they may get sick or die; their loved ones may get sick or die. Remind them of how this is driven into their psyche, day-in and day-out, while at the supermarket, listening to the radio, or canceling long-awaited, once in a life time, plans. Ask them how that affected them. Then, tilt your head to the right, let your eyes get a little damp, and welcome them to your everyday reality as a dying cancer patient. We never wanted others to understand confronting mortality, but, if nothing else, accept the solace of being understood.

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    What’s your saying for today?

    All the adages, proverbs and sayings aren’t going to help some days..I can’t paint rainbows around it or sugar coat it, or simply say like my Dad use to: “this too shall pass.” My daughter has Stage 4 metastatic breast cancer. Today, she told me it’s in her cerebellum, at 3mm..She may have a laser knife treatment done.? So, I’m concerned, not only about all the crappy political climate stuff, and the how to deal with the extra of the pandemic -because it’s really us as individuals, how are we dealing with it and how do we shield ourselves from it.? Now, I’ve another extra thing to think about..to worry about. My thought, my present saying: “We’re all in the same storm, but we’re in different boats.” It’s all relative to our circumstances. Sometimes, maybe we’re in a different storm on a vast ocean, all out there by ourselves, maybe the boat’s taking in water, and we wonder if we or our boat will survive the storm.?
    #BreastCancer #COVID19 #self #alone

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    Biopsy

    I got the test results from the biopsy they took on Thursday. The procedure where they also took out my IUD, did a pap smear, and gave me my next Lupron shot. It's not good news. They found the cancer has spread to that spot. The weird thing is that area has been oddly itchy for roughly a year, and I mentioned that and another itchy area on a breast, at the time I really noticed it, to my primary care doc. She told me not to worry about it, and it was probably nothing. I'm wondering if I've been dealing with the cancer since then? Much earlier than I thought. Maybe it spread to that area before the bones. Would that area be considered skin or part of my reproductive tract? It was found throughout all the layers of the samples. Either way, it seems to be in another organ system now. They might have to take out even more when they do the hysterectomy, which means longer recovery time and more drastic looking. I thought it would just come back fine. #Biopsy #Hysterectomy #Health #Cancer #MetastaticBreastCancer #metastaticcancer #BreastCancer #tests

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    Intro

    Thought I’d introduce myself. I’ve had many different health conditions, but the most limiting and scary right now has been metastatic breast cancer. I was dianosed in April after finding it through biopsies of my breasts. A while before that tests showed it had already spread to my bones. (It’s in my skull, shoulder blades, sternum, spine, pelvis, all over my ribs, etc.) It may have caused my fall in the shower back in March, too. If it’s in the bones, it can weaken them and make it easier to break them. I did end up breaking my right shoulder. I had surgery, and am still recovering from that. That’s been a pain on top of the treatments. My mom had stage 4 breast cancer as well, but it wasn’t as agressive. What got her in the end was really abdominal tumors. (She passed away 8 years ago.) Anyways, I’m overwhelmed with the treatments lately. My condition has gotten bad enough, I actually am using palliative home care. Without that I wouldn’t be able to function at all. They even come in to help me showers. The idea that people tend to not live long with this disease is difficult, too. I’ve been trying to improve my life through fun things every day. That’s turned into highlights and has kind of felt uplifting. A lot of the time it’s small things like a walk on boardwalk, trying a cheese tasting plate, afternoon tea, etc. I’ve also subscribed to monthly boxes. One being snacks featured from a different country each time, and the other with horror/mystery books. Something to look forward to. Haven’t gotten either yet, but they sound fun. #Life #Cancer #MetastaticBreastCancer #metastaticcancer #introduction #Intro #Health #Fun

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    Coping When the Corona Virus and Cancer Progression Collide

    cancer doesn’t care about the virus. It will still grow, spread and kill us,” said Angela Oliver, a metastatic breast cancer patient whose treatment has been put on hold until the corona virus pandemic subsides.

    Oliver, who lives in the United Kingdom, was hoping to get into a clinical trial when her cancer progressed in March. But as the corona virus takes root in Britain, cancer trials have been suspended, as researchers shift their focus to work on vaccines to curtail the virus.

    “Mentally, it’s extremely difficult to accept that the already limited options for patients like me have been so easily ripped from our grasp,” she said.

    Lori Burwell, a metastatic breast cancer patient living in Virginia in the United States is in a similar situation. Her cancer progressed after being on clinical trial offered at Memorial Sloan Kettering in New York City. She’d like to get into another trial for the drug Tucatinib which has shown great promise for her type of cancer.

    Dealing with progression of metastatic cancer is difficult enough under any circumstances. But now, with corona virus taking hold in cities where research hospitals are located, clinical trials options are becoming scarce and patients such as Oliver and Burwell are forced to stay on medication that either isn’t working or waiting anxiously for new treatment options that have limited benefits.

    “I’ve had my tumor profiled and have been found to have inherited faults in my ATM gene,” explained Oliver. “ If this gene has complete loss of expression, I’ll be eligible to join a phase 1 ATR trial. Luckily I signed consent before trial centers stopped recruiting new patients. My oncologist has decided to keep me on Capecitabine while we await the results of this. If I can’t join the trial, I have no idea what my next steps will be.”

    Burwell finds her situation disheartening because it forces her to return to her local oncologist whom she doesn’t trust.

    “He is dispassionate, dismissive, arrogant, and short with me. I have always felt as if he views me as a failure because my cancer metastasized. He didn’t cure me,” she said.

    Clinical trials often mean moving to a new doctor who heads the research team. For people like Burwell, it can mean traveling long distances for treatment. With New York City now an epicenter of the corona virus, further treatment at the research center isn’t an option until the virus is contained.

    So how does one cope with the competing threats of an out-of-control virus with no cure that could prove fatal and limited or delayed treatment options for cancer that is spreading?

    “I’m spending a lot of time cooking and gardening to take my mind off how bad things could get for me,” said Oliver.

    “I work in my garden. I read. I am painting the interior of my guest cottage,” said Burwell, who lives in an old beach house and uses the cottage as a guest bedroom. “My adult children who have been isolated for almost a month like I am but in their homes in northern Virginia are coming this week for a visit. I need to see them and we are wasting time I may not necessarily have.”

    Both women say they have their moments when it all seems overwhelming.

    “I’m generally coping okay, but I did recently have a meltdown when I entertained the fact that I might not get out of this lockdown alive,” said Oliver.

    “I am very discouraged,” said Burwell. “ I am still asymptomatic, with plenty of energy and work out to online videos and walk (apart from everyone) to burn off my nervous energy.”

    Burwell’s advice to anyone in a similar situation: Continue to be your own best advocate. Be pushy. Have your questions ready. Stay unemotional. Pursue a second opinion if possible, via telemedicine (an option that’s not currently available in the UK as doctors are not accepting new referrals at the moment, according to Oliver.) Keep your body in the very best shape you can by eating well and exercising.

    “We don’t know what will make a difference in surviving this virus should we get it, but we do know that eating well and working out improves quality of life for cancer patients,” said Burwell.

    “I’d say to anyone going through a similar experience, don’t give up, hang onto hope. Continue to research your options, so when we do get out of this you have your weapons at the ready,” said Oliver. “You have to know what you want, before you can fight for access to it. If there’s one thing cancer has taught me, it’s that we have to have our own backs and advocate for ourselves. No one cares more about whether you make it or not more than you.”

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    LiFe

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