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    Annmarie Otis

    Why I'm Sick of Talking About Breast Cancer but Will Never Stop

    The other day someone asked me if I get sick of talking about breast cancer. While she is just 14, I really thought it was an intense question. I think people who do not have cancer or any lasting illness do not fully understand just how sick of it we are. Just because you can’t see what we are dealing with, you expect us to be over it — when our reality can’t bring us away from it. Yes, I do get sick of talking about breast cancer. I get sick of dealing with it every frigging day! I want to forget it ever happened to me, but that can’t happen for many reasons. I have tried very hard to remove my family and friends from my everyday talkings of my cancer life (sorry if it filters in, but this is my reality now). They are probably reading this thinking that is a load, but really, you have no idea how much more I want to say. This is what I wake up and deal with every single day and even when I sleep. I think for them because I am not recovering in a hospital from a surgery or bald from chemo or dealing with burns from radiation they think, “Well she is all done.” Such is not the case. The scars are so painful it hurts me physically on a daily basis. I see a dermatologist still five years later for spots that have come back — basal cell and for my keloids. The scars are very deep and very real all over my body, but you do not see them. Only I do. Fact: I never asked for this cancer. When I look in the mirror naked (which is rare because I prefer the neck up) I see nothing but a scared breast cancer woman. Yes, I am sick of talking about breast cancer, but how can I stop when this is what I see daily? I can’t sleep at night because my body is aching from my lymphedema, cording, numbness and weird pains in my breast that were not there before. The joint pain from taking my hormone blocker keeps me from getting a good night’s sleep. My joints ache and I can’t get comfortable at all because of my chest pains. Yes, I am sick of talking about breast cancer, but how can I stop when I can’t even sleep because of it? Doctor, doctor, doctor! See, as much as I want to get cancer out of my life, I have a doctor’s appointment every other month, if not monthly. Then there are scans and blood work. Every appointment I hope I’ll be OK, but I just get sick to my stomach for every single one. Enter scanxiety, which builds up all week. I am poked and jabbed and scanned and felt up more than I ever thought was possible. I sit and wait in doctors offices waiting to hear “no evidence of disease” and I breathe a sigh of relief until the next time. Yes, I am sick of talking about breast cancer, but my doctor appointments make it impossible to avoid. I have made some of my best friends because of breast cancer. We have formed this bond that is unbreakable. We rely on each other to lift us up to lean on and to commiserate with. We watch as some have been taken away from this disgusting disease. We are then filled with grief mixed with guilt and heartbreak and a touch of relief that it wasn’t us, which adds even more to our survivor’s guilt. I am completely sick of this cancer world but know this is my bizarre world I hate yet love. But I will not leave it because my family is here and they know just how I feel. Yes, I am sick of talking about breast cancer, but I will never leave them because I need their support as much as they need me. Breast cancer never just ends; it really does not. But each day does get a little better. We first find ourselves as the newly diagnosed, trying to find our way through this and understand all the lingo and the grasp what the hell is about to happen. We start making connections and figure out where we fit in and who will help us the most. We then ease into the surgery and treatment part where we need the guidance and tips of those who have been there. They help us more than our doctors (even though we do love our docs). We form more bonds and find ways to laugh at our nails falling off and drains hanging from our body because these amazing people have been there. Then we start to be the ones who really are just trying to adjust to the new normal, the ones living the post-traumatic stress of the aftermath of cancer. The “What the hell just happened?” because I am still processing the last five years! Cancer puts you on a full force roller coaster and sends you off on a hell ride leaving you dazed and confused from it all. The aftermath isn’t just about your body adjusting, it is about your mind healing as well. The emotional scars do not seem to ever really go away — or maybe I am still at the healing phase so the jury is still out on this part. Soon we become the veterans — the ones who have been through it all — and we want to help those in all stages of this roller coaster ride. Yes, I am sick of talking about breast cancer, but shit, my head is still on this ride! So there you have it  — sick of talking about it but will not, cannot and won’t stop. I wonder if this will help those without cancer to understand why we can’t stop? We want to but can’t. Here is the thing. Those “cancer-free” moments — you know, when you are out to dinner with your friends, on a walk, sitting and just relaxing, listening to your kids fight, maybe exercising — whatever they are, those moments when for even a second you do not think, talk breath or feel cancer… attack them, embrace them and be cancer-free ’cause let’s face it — that is a state of mind, not a medical term. This post was originally published on Stupid Dumb Breast Cancer. We want to hear your story. Become a Mighty contributor here .

    Community Voices
    Community Voices

    Finding out I have the CDH1 Gene Mutation

    In December, I finally gotten a GYN to listen to my desire for a hysterectomy. But before I can move forward to that, I was recommended to get genetic testing done. I have never been offered that before in all the years I've mentioned my quite extensive family history of cancers.

    It took a while, but in July I got my results. I had the rare CDH1 Gene Mutation. This mutation increases my risk of Hereditary Diffuse Gastric Cancer to 85% by the age of 80 and my Lobular Breast Cancer risk to 30-35%. There is a slight risk increase of Ovarian Cancer as well. That was a lot to take in, but I wasn't surprised. I am already chronically ill managing multiple conditions and that was a huge life change as is. However, this would be a whole new lifestyle change ahead on top of my already busy job of dealing with my already poor health.

    These last couple months has been gathering information on surveillance and preventative surgeries. It's been decided that I will get a Total Gastrectomy (complete removal of the stomach) relatively soon, HOPEFULLY get my hysterectomy after I recover from that, and then do surveillance on the breast care side of things. Not only that, but I had to tell my (toxic) father whom I live with all this news since I completely rely on him for support.

    Here's to hoping that this new journey improves my quality of life in both the short and long term. And here's to trying to document my journey of managing new health challenges on top of already being chronically ill.#chd1 #HereditaryDiffuseGastricCancer #GeneticTesting

    1 person is talking about this
    Community Voices

    Abusive Mom

    Just when I think I’m finally getting along with my mom she treats me like dirt again. I’ve wanted to move out of my parents house since I was 18. I was kicked out at 16 for a short period and lived with my best friend’s family. I never moved out until 30, but would stay with friends, family, and boyfriends prior to that. I’ve faced many struggles in my life. Whenever I seemed to get my life together she’d threaten to kick me out. It’s like she wants to see me fail. She says she loves me and wants what is best for me, but I think she’s selfish. She’ll buy me things and be there for me. She’s a nurse and I know it stresses her out. My father is also disabled. He has IBM, which is similar to ALS. My mom had breast cancer and beat it. That was hard for me. I love my mom, but hate her at the same time. I’ve gained weight from psychiatrist pills I’m basically forced to take and she’ll call me fat and lazy. I’m trying to lose weight, but it’s a struggle. She is even physically abusive sometimes. #venting #unhealthyrelationsips #mom #Daughter #strength #PTSD #Abuse

    11 people are talking about this
    Community Voices

    Meds

    Among other meds, I take quetiapine each morning. Hadn't thought much of it until today when my alarm went off & I realised I didn't have any tablets with me so thought I'd just take them when I got home.
    When I got home, I realised that I hadn't taken the quetiapine for a few days. In fact, I couldn't remember the last time I took one...
    Kinda explains why my mood has been slipping, albeit gradually the last few days or so.
    I just wanted to get it off my chest.
    Hope you're all as well as can be expected. X
    #Depression #BorderlinePersonalityDisorder #BipolarDisorder #Anxiety #ChronicIllness #BreastCancer #CPTSD

    45 people are talking about this
    Kathleen Friel

    Changing Health Perspectives With Cerebral Palsy and Metastatic Breast Cancer

    “It’s best to institutionalize her. She has no rehabilitative potential.” This is what a neurologist told my parents 47 years ago after I’d failed to meet developmental milestones related to movement. I was then diagnosed with cerebral palsy (CP). My parents found me a different doctor, a doctor who recognized my full potential — which changed the trajectory of my life. CP stems from a developmental brain injury that has gifted me with garbled speech, an “abnormal” gait, and reduced fine motor skills. My disability is obvious to people when they meet me. They may not know what “CP” is, but they know there’s something up with me. Often, they assume I am neither intelligent nor capable. Growing up, school was a great opportunity for my intellectual growth — and for teaching me how to live with an obvious disability. Particularly during school transitions – like starting at a new elementary school and then moving on to middle and high schools – I learned the importance of educating others about my cerebral palsy. Education was the key to acceptance. My mom would come visit my class after I’d moved to a new school. We would tell the story of my life with CP: the multiple muscle and bone surgeries I’ve had to straighten my legs, the frustration of not being able to speak clearly, and the reality that I wasn’t much different than other kids. Each time we offered one of these educational visits, my life at school rapidly improved. Kids stopped teasing me. I made more friends and felt less lonely. People simply got it. I became more outgoing and more involved in school activities. My everyday life with cerebral palsy is quite ordinary. I take out the trash. I do laundry. I sleep late on weekends. To me, my body is normal and my life is normal. My speech sounds perfectly clear in my head. I’ve built a life of convincing people that my visible and audible “impairments” do not affect my intellect, my potential, or my freedom. This simple fact seems to mesmerize many folks. I went to college and then graduate school — usually as the only student in class with an obvious physical disability. I earned a doctoral degree in neurophysiology – the study of how the brain works. Now, I run a research laboratory at an Ivy League institution in New York. The goal of my lab is to develop innovative interventions to help people with cerebral palsy optimize their fine motor skills. My many wonderful colleagues and I have made substantial gains in understanding how the brain controls movement in people with CP — from which we can build more effective interventions. Not only do I strive to help kids improve their movement, but I also hope to show them and their families that they can live happy, exciting lives. I want kids with disabilities to know that even if society judges them for their visible disabilities, they may derive abundant joy from proving people wrong. In July of 2018, though, I had a sudden bout of severe back pain. After a couple months of inconclusive medical testing, I was diagnosed with metastatic breast cancer (MBC). Before a tumor was visible on a mammogram, breast cancer cells had found a home in my spine. As a friend with MBC characterizes this diagnosis, “Do not pass go; do not collect $200.” Now what? While early stages of breast cancer are curable, MBC is terminal. As my wonderful oncologist described it, once cancer cells metastasize beyond the breast, we MBC patients have “cancer dust” forever circulating through our bodies. Eventually, these “dust bunnies” claim eminent domain over our organs. Therefore, we often must be on strong treatments for the rest of our lives. The average longevity of a person with MBC is about two to three years — although many live longer. I’m lucky that I’ve already beaten the odds. MBC treatments do not cause some of the stereotypical chemotherapy side effects. I haven’t lost all of my hair, and I haven’t lost weight. MBC isn’t throwing me any bones, though. My MBC is mostly invisible from my appearance, but I struggle with joint pain, nausea, and fatigue — and there are so many more symptoms I have. After one treatment, I lost my fingerprints. My medications make it even more difficult to speak clearly, which further isolates me when there’s so much I want to say. I’m now in a world that contradicts the lessons of my life with cerebral palsy. It’s quite the conundrum. I’ve spent my life proving to people that my disability does not affect my intellect or potential — which is true of my CP — but MBC is an invisible, terminal condition that affects multiple aspects of my life. Christine Miserandino popularized the “spoon theory” of life with chronic illness in which energy is represented by “spoons.” Let’s say that a healthy person has 30 spoons of energy per day. Dressing and showering may take two spoons, a workday may take ten spoons, and so on. People with health challenges, though, might only have 10 spoons per day. We may often have to make careful choices about how we use our “spoons.” If going to a doctor’s appointment takes five spoons, then we have to figure out how to accomplish the rest of our day with only five spoons left. I’ve tried to use my favorite childhood tool — education — to improve my relationships while living with MBC. I’ve educated people about what my diagnosis means, my prognosis, my treatment plan, and my needs. However, some don’t believe it, and they’ll say, “You look fine!” Living with MBC can be isolating, but I’ve now spent more than half my diagnosis in a pandemic, which exacerbates the loneliness. In my work, I continue to write grants for projects I likely won’t live to complete. I feel driven to make as big an impact as possible in the world knowing that my window of opportunity could close at any moment. I want to be remembered as the “cool aunt” by my nephews and nieces, though I’m their only aunt who doesn’t have a dog. It may be a hard sell. I’ve maintained an active life after my MBC diagnosis. Nearly a year into my diagnosis, I earned my black belt in taekwondo. Still, MBC is a beast. When my MBC is visible to others, it is awkward – I think it’s a reminder of my mortality. I’ve lost several meaningful friendships with people who say they can’t bear a “front row view” to my struggles. I get it, but it stings knowing that their discomfort overrides their value of my friendship. With both CP and MBC, one thing I’ve always known is that my true friends are the real deal. Their love, acceptance, and good humor keep me afloat. Here I am, needing folks to understand the severity of my MBC diagnosis after spending a lifetime teaching people that my CP does not affect my abilities. This health challenge has gifted me with several lessons. Talking about health conditions should not be taboo. Whether a person has a visible or an invisible health condition, listen to them. Everyone is likely living with struggles of some sort. Acknowledging our needs, our talents, and our mortality gives us all space to live authentically. We all deserve this sacred gift.

    Community Voices

    My family don't care about me after my admission of childhood sexual abuse and incest.

    Almost eight years ago to the day, in a situation that's too complicated to explain, I was forced to tell my family about the sexual abuse and incest I experienced as a child. The incestuous element was a very close family member.

    I often fantasised about what might happen if I ever revealed my past. I felt neglected as a child, was abandoned by my mother in my early teens, and brought up by numerous nannies and au pairs who came and went like the wind. I can only really remember one of them clearly. I had at least ten.

    My revelations caused massive shock waves through the family, and respective step family members. I was immediately vilified, disbelieved, told to recount every detail of what happened, and branded a liar.

    What I had always dreamed of happening if I ever revealed my truth, simply cemented my thoughts about my childhood. That I had never been emotionally validated, although I never experienced hardship or poverty in any other ways. My dad actually said "why on earth would you accuse me of any kind of neglect, you had a comfortable home, holidays abroad every year, etc. He was so far away from the point it's almost unbelievable.

    He was so angry about my revelations. Demanding that I did this and that. And when I refused, saying that I was feeling traumatised and extremely vulnerable, he accused me of not having any story to tell.

    At the time that this information came out, I had just received my second diagnosis of recurrent breast cancer. I was told that I was attention seeking. I said that if I was, didn't they think that receiving a diagnosis of recurrent breast cancer would be enough? And how badly they must think of me if they believe I'm sick enough to make up stories like that for attention?

    They told me that I'm mentally unstable, and God knows what goes on in my head. I forgot to mention that a couple of months previous to all of this I had made a serious suicide attempt and been in a women's mental health unit.

    Ironically, if that's the right word, I wished at the time that my cancer had come back because it is so much easier to deal with than my mental health illness.

    My daughter graduated from University on Thursday with a first class honours degree in Applied Psychology. I mentioned to my family that I must be doing something right because she is the most wonderful, well adjusted, caring, generous, kind, funny, beautiful person, and surely some of that must be due to my parenting, as a single parent I might add. They said nothing, and then muttered, obviously about me, after my comment.

    So I realised that because of my disabilities, and reliance on benefits, they might be thinking that they played more of a role in her getting her degree than I did. So I left a message on Facebook, for everyone to see, thanking them for all their support and said that she/ we couldn't have done it without them. Nothing. My dad brought Ella back from her uni house the other day, he barely stayed more than 5 minutes after unloading her stuff. He didn't even ask me how I was.

    I feel abandoned all over again. Except this time it hurts more. The family member in question denied everything and has told everyone I'm insane. Goodness knows what effect this could have on my daughter. When everything came out, she was going to a festival. She came back with drug induced psychosis.

    What should I do, where do I turn to for help? Just talking to someone who has had a similar experience would be a great comfort. Thanks

    6 people are talking about this
    The Mighty Staff

    The Mighty's HER2-Positive Metastatic Breast Cancer Condition Guide

    HER2-Positive Metastatic Breast Cancer at a Glance: HER2-positive metastatic breast cancer is a specific type of breast cancer that has spread to other areas in the body. Breast cancer is the most common form of cancer diagnosed in women, and approximately 15% of all breast cancers are HER2-positive. Although HER2-positive breast cancer can grow and spread more rapidly than other cancers, there are many different treatments available for individuals diagnosed with HER2-positive cancer. Medically reviewed by Dr. Rani Bansal, M.D. What Is HER2+ Metastatic Breast Cancer? | Common Metastatic Breast Cancer Misconceptions | Managing HER2+ Metastatic Breast Cancer | How To Find a Health Care Provider for HER2+ Metastatic Breast Cancer | Mental Health and Metastatic Breast Cancer | How To Talk To Others About Metastatic Breast Cancer | How To Support Someone With Metastatic Breast Cancer | What Is HER2-Positive Metastatic Breast Cancer? HER2-positive metastatic breast cancer is a specific subtype of cancer that originates in the breast tissue and then spreads to other areas of the body. Although the term “breast cancer” may come across in the media as a more “straightforward” diagnosis, there are actually many forms of breast cancer, and understanding what type of breast cancer you have specifically is important to receiving the best treatment. To help you better understand HER2-positive metastatic breast cancer, we’ve created this condition guide. Before we get into the nuts and bolts of this condition, we’re going to take a step back and provide you with an overview of what the “HER2-positive” means in your diagnosis and discuss some more general aspects of breast cancer you should know about. Ready? Let’s get started. What Is Breast Cancer Typing? When a physician suspects you may have cancer, they will order a series of tests to determine what type of cancer you have. You could have a room full of individuals diagnosed with breast cancer and each cancer could be different. That’s why it’s so important to determine what kind of breast cancer you have, as treatments will vary heavily based on your results. Some methods for determining breast cancer type include: Biopsy: This procedure is used to take a small sample of tissue from your body to be evaluated by a pathologist, a physician who specializes in visualizing the body and tissue samples. Immunohistochemistry (IHC) testing: This test is used on the breast cancer cells from your biopsy to determine if the breast cancer cells have increased number of HER2 and  hormone receptors (such as estrogen or progesterone). This test uses chemical stains to see what type of receptors you have and relatively how many. For HER2 typing, test results will be either HER2-positive, negative, or borderline. For hormone typing, this test will see if your cells have receptors for progesterone and/or estrogen, which can act like “fuel” for certain types of breast cancer. Fluorescence in situ hybridization (FISH) test: This test uses special imaging techniques to determine if a biopsy contains the abnormal HER2 gene that causes the cell to produce too many HER2 receptors. Other screening, diagnostic, and monitoring tests that may be used to help determine the stage, type, or even presence of cancer include mammograms, thermograms, CT scans, bone scans, MRI scans, and more. You can learn more about the tests and screens you may encounter here . Breast cancer typing will determine if the cancerous cells taken from the biopsy are one of the following four major breast cancer subtypes: HR+/HER2- Individuals with this subtype will be positive for hormone receptors (estrogen and/or progesterone) and are negative for higher-than-normal levels of HER2 receptors HR-/HER2- Individuals with this subtype lack both hormone receptors and higher levels of HER2 receptors. This subtype is also known as triple negative breast cancer (TNBC). HR+/HER2+ Individuals with this subtype will be positive for both hormone receptors and higher levels of HER2 receptors HR-/HER2+ Individuals with this subtype lack hormone receptors but have higher levels of HER2 receptors Having hormone receptors present for estrogen and/or progesterone makes these cancer subtypes more susceptible to estrogen and/or progesterone to fuel the cancer cells. You can learn more about these types of receptors here. This condition guide, however, will focus on HER2-positive metastatic cancer. Read on for more details on what HER2 receptors are and why they play a critical role in cancer cell division and growth. What Are HER2 Receptors? If you research online, you’ll likely come across articles that discuss the HER2 receptor. Breast cancer is very complex and is generally categorized in part by the type of receptors that are present on the cancer cell. Cells become cancerous when they grow and divide more rapidly or “out of control” compared to regular, healthy cells. You can think of a cancerous tumor, for example, as a condensed group of cancer cells that are expanding rapidly in one area of the body. Cancer cells receive many different signals to grow and one type of signal comes from tiny receptors on the cell. HER2 stands for “human epidermal growth factor receptor 2,” which is a gene in your cell’s DNA that creates these receptors. When you have a cancer biopsy, pathologists will determine whether or not these cells have an abnormal version of this gene. In a healthy cell, HER2 receptors help your cells grow, divide, and repair themselves. Those who are HER2-positive have the abnormal gene, which creates extra receptors. That’s why having too many of these types of receptors can cause your cells to grow and divide too rapidly and become cancerous. To help visualize these receptors, imagine a long extension cord with lamps sitting next to each open plug. The more lamps you plug in, the more light you would have in the room. HER2 receptors work in a similar way – if a cell has more of these receptors available, then there will be more signals coming to the cell to grow. If you have HER2-positive cancer, your cell’s extension cord may have eight open plugs to use, while others may typically only have two. Unfortunately, having extra HER2 receptors on your cancer cells, or being “HER2-positive,” can make your specific type of breast cancer grow more rapidly and be more aggressive than other subtypes. The good news, however, is that HER2-positive cancer is a common subtype of breast cancer, accounting for nearly 15% of all breast cancer cases. Research over the past few years has made incredible advancements and there are treatments that now include HER2-specific targeted therapies. Other HER subtypes also include HER2-negative, HER2 Low, and HER3. You can read more about these other HER-specific subtypes here. What Is Metastatic Breast Cancer? When you receive a breast cancer diagnosis, your doctor will likely tell you what subtype of cancer you have along with the stage. Breast cancer stages help physicians and patients better understand the severity and spread of cancer within your body. For example, earlier stages of breast cancer indicate that your breast cancer is likely limited to the breast tissue or nearby lymph nodes. Later stages of breast cancer can include cancer showing up in multiple areas of the breast tissue or growth beyond the breast tissue to other organs. A metastatic breast cancer diagnosis means that your cancer originated in the breast tissues and has spread to other organs and areas of the body. Metastatic breast cancer is harder to treat than earlier stages because your physician will have to target many different areas at once. Individuals living with HER2-positive metastatic breast cancer are more likely to have cancer in these areas of the body outside of the breast tissue: Brain Bones Liver Lungs Lymph nodes If you or a loved one has been diagnosed with HER2-positive metastatic breast cancer, read on for more information on how to work with your physician to get the best treatment. Managing HER2-Positive Metastatic Breast Cancer Because metastatic breast cancer is different for everyone, you and your health care team will develop an individualized treatment plan. It can be scary to be diagnosed with metastatic cancer, but Dr. Rani Bansal, an oncologist from Brown and Duke University, wants you to know: “As oncologists, we want our patients to know that they are not alone in their diagnosis and that their health care team will be there alongside them every step of the way. Our goal is to create an individualized treatment plan that is specific to each patient and addresses more than just the treatment of cancer.” If you or a loved one has been diagnosed with HER2-positive metastatic breast cancer, know that being here and reading this condition guide is a great first step. Given continued advancements in cancer care, each patient’s specific treatment plan may be different. However, learning as much as you can about the different ways to treat this condition will give you further insight on your options and creating a health care team you trust is critical. If you looked up metastatic breast cancer online after you received the diagnosis, you may be overwhelmed by what you have found. You may be asking yourself: What does treatment for HER2-positive metastatic breast cancer look like? How will metastatic breast cancer affect my day-to-day life? What is the prognosis for patients with HER2-positive metastatic breast cancer? Treatment regimens for HER2-positive metastatic breast cancer will, in part, depend on where the cancer has spread to in your body, your specific breast cancer subtype, and the treatment options available from your health care team. Some options that you may be recommended by your care team include pharmaceutical options, such as oral or infusion systemic therapy (such as chemotherapy, targeted therapy, or immunotherapy) radiation, surgical options, and self-care or non-pharmacological options. Chemotherapy Chemotherapy is a medical treatment that uses powerful drugs to target and kill cancer cells. This type of therapy is usually given over multiple sessions in cancer treatment clinics also known as infusion centers. Chemotherapy may be used to remove all of the cancerous cells, or to help shrink tumors before surgical removal. Targeted Therapies Over the past decade, targeted therapy options specifically for HER2-positive cancers have been a game-changer for treatment. New, highly-effective drugs are used to target HER2 receptors specifically. There are many different targeted therapy options, which range from taking pills to IV therapies and treatments to combinations of both. Radiation Therapy Radiation therapy is a form of treatment that uses radiation (high beams of energy) to target specific areas of the body to kill cancer cells. Radiation therapy may be used to help reduce tumor sizes before surgical treatment or used after surgical treatment to prevent the recurrence of cancer. For individuals with metastatic breast cancer, radiation therapy is often used to help manage symptoms of pain or discomfort such as from cancer that is involving the bone and causing bony pain. This is termed “palliative radiation” as the goal of radiation is to palliate symptoms. Surgical Treatment Surgical treatments are used to physically remove tumors and other regions affected by cancer from the body. Surgical treatment could include a mastectomy, removal of the entire breast; lumpectomy, removal of a tumor; or even removal of other areas of the body that have become cancerous or may become cancerous like the lymph nodes. Surgical treatments are more often used in the localized treatment setting. In the metastatic setting, surgical treatments usually have less of a role but in certain cases may be used. Combination Therapy When you discuss treatment options for HER2-positive metastatic breast cancer, you will likely be prescribed a combination therapy. Combination therapy is when an oncologist uses different treatment options together to create the best possible outcome. Example combinations could include chemotherapy to reduce tumor size before removal of the tumors surgically or the use of chemotherapy and targeted therapies together. There are now medications that have combined chemotherapy and targeted therapy drugs together to produce a stronger effect against cancer cells. Every person’s treatment regimen will be different depending on where the cancer has spread or how extensive it is, among many other factors. Self-care and Non-Pharmacological Options to Help Manage Living With Metastatic Breast Cancer HER2-positive metastatic breast cancer can have vast effects on the body. Treatments for breast cancer can be extensive, and each treatment has its own potential side effects. Your care team will help you manage those side effects as best as possible, but there are some strategies you can use to help make managing the process easier on your own. Here are some tips community members suggested that might help: Massage therapy Meditation or deep breathing exercises Yoga Eating a healthy diet and exercising regularly Some other aspects of living with breast cancer that you should consider include: Possibility of hair loss due to treatment Family planning and effects of treatment on fertility or ability to have children Mobility if treatment or cancer has affected your ability to walk or your energy levels Living with any form of breast cancer can be a scary experience, but know that there are many people who have been through this experience – you are not alone! You can find support from others or find tips on speaking with your health care team on The Mighty’s breast cancer topic page. What Does “Successful” Treatment for HER2-Positive Metastatic Breast Cancer Look Like? When diagnosed with cancer, the first questions many people will have are around life expectancy and how likely you’ll be able to be cured from it. Answering this question can be challenging, even for a physician who knows all the ins and outs of your specific cancer diagnosis because each person’s cancer is unique. HER2-positive metastatic breast cancer overall is considered incurable. However, there are many treatment options, and reaching remission or a place of stability with the cancer is possible if your particular cancer responds well to treatment. To learn more about HER2-positive metastatic breast cancer, we talked to Dr. Rani Bansal, an oncologist, about what she considers “success” in treatment for HER2-positive metastatic breast cancer. Here’s what she said: “I want [my patients] to be able to live their life and be able to do everything that they want to do, and have that for as long as possible. Unfortunately, I can’t take their breast cancer 100% away, but I can try to get it to a point where it’s controlled, and it’s not affecting their everyday life.” If you’re feeling apprehensive about receiving a HER2-positive breast cancer diagnosis, that’s OK! Know that there are people willing and able to help you navigate this journey. Finding an oncologist you trust, and surrounding yourself with a support team is a key first step. You can read more about finding a doctor and who you might consider for your health care support team below. How to Find a Doctor for HER2-Positive Metastatic Breast Cancer Finding the right care team for any metastatic cancer can be challenging, but it’s key to getting the best outcome. Where should you begin? First, identify an oncologist (cancer specialist) and primary care physician you trust and feel comfortable with. Your oncologist and primary care physician can help you find the right specialists to help in your care. Different healthcare professionals can help manage a HER2-positive metastatic breast cancer diagnosis, including: Primary care physician (PCP) Oncologist Plastic surgeon, if you have surgical treatments Specialists associated with areas the cancer affects, i.e. a gastroenterologist if your metastatic cancer affects your GI system. Occupational therapist/ physical therapist Mental health professional In a recent survey of Mighty members, 76% of respondents said an oncologist helped them make a decision about treatment. Twenty-three percent said their primary care physician helped them as well. Together, these two professionals along with any others in your care team can help provide the best path forward in managing your HER2-positive metastatic breast cancer. To help you navigate this journey, we created a downloadable discussion guide to help you prepare for a visit with your oncologist to help discuss your breast cancer diagnosis and next steps. We hope this guide helps you get the most out of your appointments: download guide   It can be scary to receive any cancer diagnosis, and looking up treatments online can feel very daunting because of the volume of studies and potential therapies available. But don’t worry – that’s a good thing! There is a lot of research being conducted to help improve treatment outcomes for people living with cancer and your health care team will help you navigate it. You are not alone in this journey. Breast Cancer Misconceptions Unfortunately, breast cancer is a common experience in our communities. However, there are misconceptions about the condition that can make life more challenging for those experiencing it. To better understand what they’re going through, we asked individuals living with breast cancer and their caregivers what they wish others understood. Here’s what they had to say: “The breast cancer journey does not end with treatment. There are continued medications, side effects, follow-ups/checkups, and the constant fear of recurrence.” “Once the treatment is finished it is NOT all over. Once you’ve had that diagnosis you are never the same again. Every bump, pain, etc., and you [feel like you’re] right back to the beginning again and it’s scary.” “I wish that the ‘positive thoughts only’ notion could be dispelled once and for all. It has *not* been proven that positive thinking helps cure or even stabilize breast (or any other kind of) cancer, plus it creates a lot of unhelpful and unhealthy toxic positivity for breast cancer victims; often we aren’t allowed to express or even acknowledge our dark thoughts or painful emotions.” “I wish they understood that how they see my wife present herself positively isn’t how things really are. Just because my wife has a good attitude doesn’t mean it’s been an easy process. I wish they would stop using silly cliches like ‘everything happens for a reason’ in describing our journey. Those comments are 100% unhelpful because they attempt to artificially rationalize human suffering.” “How lonely and frightening and overwhelming it can be, sometimes out of the blue. The mental health battle can be massive.” “I wish that the males in my family were more proactive since the BRCA2 mutation is a possibility. Also, [I wish that] the wider population was more aware that males do get breast cancer.” We hope that reading what the breast cancer community shared above can help you better navigate and understand some of the challenges people living with breast cancer face. You may see your friend, family member, or community member look “fine” or “strong enough” to handle their journey with breast cancer. Just remember – they didn’t sign up to be strong, they had to be to survive, and that doesn’t mean they also don’t struggle at the same time with their cancer journey before, during, and even after treatment. Mental Health and Metastatic Breast Cancer It’s important to remember that living with breast cancer can also affect your mental health. In a survey of more than 160 people with breast cancer on The Mighty, 71% of respondents said that they experience depression or sadness. Sixty-nine percent reported feeling anxiety or panic symptoms. Receiving a breast cancer diagnosis can be scary, and may surface many worries or fears for the future. Mental health is often overlooked in health care and isn’t often a core aspect of cancer treatment plans. This issue is highlighted in our survey where 68% of all respondents to our survey said that the most difficult day-to-day challenge of living with breast cancer was actually the impact cancer had on their mental and emotional health, not the side effects of treatment. If you are struggling with your mental health while living with breast cancer, know that mental health professionals are available. Seeking help does not make you less “strong,” it is simply an act of kindness to yourself, a way you can help yourself become stronger in different ways, not strong in the first place. You may be thinking, “but I have cancer and my anxiety or depression is just around the cancer – how will a therapist understand the experience?” Luckily, there are therapists and other mental health professionals who specialize in therapy for individuals who have experienced cancer. It’s important to note that it’s OK if you’re still feeling anxious, depressed, or stressed even if you are in remission. You may still feel the effects of cancer on your mental health even after everything is “OK” with the cancer itself. Forty-two percent of individuals we surveyed stated that they had questions about support after treatment, especially around recurrence. Stress around scans is real and valid, and finding support can help with that process. Other aspects of breast cancer that can impact your mental health are treatment-related side effects like fatigue, pain, and hair loss. Body image can be affected by hair loss and surgical treatment. Know that getting plastic surgery after treatment is something you can pursue – and not feel “weird” about! There are even plastic surgeons who specialize in options for breast reconstruction after cancer treatment. It can be hard to be vulnerable, but opening up to your health care provider and a therapist is important. These conversations may give you coping strategies and treatment options to improve your quality of life. To help in those moments where you might need extra support, we created this Mighty feelings wheel with common physical sensations and emotions. It’s a great visual tool for sharing with loved ones or someone on your treatment team. As a bonus, coloring in the sections that best match what you’re feeling can be a welcome distraction, too! download resource   How to Get Help in a Crisis If you’re struggling with suicidal thoughts, know you are not alone. There is help for people who feel suicidal. If you need help right now, you can call the National Suicide Prevention Lifeline at 1-800-273-8255 or text “START” to 741-741 . Head here for a list of crisis centers around the world and visit our suicide prevention resources . How to Talk to Others About Metastatic Breast Cancer A metastatic breast cancer diagnosis can be difficult for you to receive, and also for others to hear. There will be concerns and fears from both sides and everyone reacts differently to stressful situations. One tool you can use along the way is information from your health care team and other breast cancer advocates who know what you’re going through. By better understanding what you’re about to experience or currently experiencing together, you and your loved ones will be better equipped. While this journey can be challenging and trying to navigate it can be draining (you’re doing a great job, by the way), we hope you can feel comfortable talking about what you’re going through, whether that’s with your doctor, your friends, your partner or even a fellow Mighty on our app. No matter what, our Mighty community is here to help. We’ve got your back. It’s important to be open about your needs and limits to your family, friends, work colleagues, and community. You may encounter a situation where a family member or friend wants you to participate in an activity that is more difficult because of your cancer or cancer treatment. For example, they may not know how much your treatment affects your energy levels or if certain activities are painful. It may be tempting to just “fake it ‘til you make it” for a while. But your energy is precious – take the rest you need. Yes, you can come first! Being open with your family and friends about your limits and needs doesn’t make you “too much.” Saying “no” won’t make you a “worse” friend. Your group wants to be with you because of who you are. So be your own best advocate. After all, no one knows your body and its limits better than you do. Try taking the lead and invite your group to a breast cancer-friendly activity: Organize a Netflix watch party Start a virtual book club with friends Organize a playdate for your children, so that they can be entertained while you and a friend do a calm activity like sitting outside listening to music or watching a movie Learn a new craft, especially one that can be done with a limited amount of energy If you’re struggling at work, especially during treatment, know that there are options available to help through your employer’s human resources (HR) department. You may be eligible to go on short or long-term disability, or Family and Medical Leave (FMLA). Accommodations may be made to help you complete your work, such as working remotely, assistive devices if you experience pain, or different work hours to better accommodate your treatment schedule. You may also be able to access free mental health resources with your employer’s health insurance plan or HR benefits. We know it can be tough to communicate your needs and experiences with people in your support system (especially on rough health days), so we created the worksheet below for you to fill out when you’re feeling up to it. Share it with those who are eager to learn more about what you go through with metastatic breast cancer. We hope this can be a bridge to better communication for everyone. You all deserve it. download worksheet   How to Support Someone Living With Breast Cancer Supporting someone who lives with breast cancer can be challenging. But here’s the bottom line: Being present and willing to learn more about what they’re going through is what matters most. You don’t have to be an oncologist who specializes in breast cancer to be a key supporter for someone living with it. The key to success is good, open communication paired with active listening. Don’t make assumptions about what they’re going through. Fifty-six percent of the individuals we surveyed about their experience with breast cancer said that connecting with friends and family helped support their mental health and journey with cancer. And that’s where you come in – ask them what would help them, and respect their answer. Maybe you’re the friend that’s in the “no cancer zone” they can connect to without any mention of cancer, even if it’s just for five minutes. Perhaps you’re the one they have a separate text thread with where they can share their worries and fears without feeling like they’re being “too much.” Whatever it looks like with your friend, family member, or even community member, know that you’re a part of their support network. You don’t have to be a specialist to help them along their journey, but becoming knowledgeable about the type of cancer and treatment they’re experiencing can help a lot. They may be overwhelmed and need some help researching options or organizing all of their information. Sixty-nine percent of our survey respondents said that spending time researching or gathering information on breast cancer was helpful to support their mental health and cancer journey. Just remember: If the person you’re trying to support doesn’t want to talk about their diagnosis in detail, don’t force it. Everyone will have their preferred way of navigating their journey with cancer. There are many other ways you can help support someone living with breast cancer. Here are some suggestions the community highlighted: Offer to drive them to and from treatments Be a notetaker during doctor’s appointments Help with childcare Help find resources around cancer treatments and insurance costs If you’re a breast cancer survivor or are also undergoing treatment, share your experiences Assist with cleaning the house, washing clothes, or preparing meals, especially after treatment sessions If they ask, help find a mental health professional who can provide further support Cancer treatment and beyond can be a long journey. Everyone’s experiences will be different but just reading this educational resource is a thoughtful first step. Thanks for being here. This condition guide was created with support from many Mighty contributors and medical experts. You can learn more about the individuals interviewed for the creation of this resource here: Rani Bansal, M.D. Tammy Polo Lauren Rockwell, MSW And to the Mighties who took our breast cancer survey: thank you!

    Community Voices
    woo80

    I've had enough

    Mum died 5 weeks ago, dad 6 years ago even my dog has died. All of cancer. I've had a breast cancer scare. I'm done, how can life be so cruel.

    5 people are talking about this
    Community Voices

    I'm new here!

    Hello. I'm Caroline but my username is Loudflower. I'm here because I've recently been diagnosed with hypermobile Ehlers-Danlos - this diagnosis came a few years after being diagnosed with breast cancer due to a gene mutation and going through all the surgeries and treatments that follow. That is the very short version. Life has changed, y'all. Some days I am determined and optimistic and too many days I am just struggling. It's a lot. I have even retired early (I am a pharmacist). I'm hoping to learn from everyone, and hopefully to find a laugh or two as well.

    #MightyTogether #EhlersDanlosSyndrome #JointHypermobilitySyndrome #Hypersomnia #HereditaryBreastAndOvarianCancer #HereditaryPancreatitis

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