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    How to Get Back to Life After Treatment

    It’s the moment that we’ve waited for and dreamed of, our treatment is done. No more chemo or radiation — we’ve recovered from surgery. Our oncologist says to us, “We’ll see you in three months.” We go to check-out, expecting to feel elated, but it suddenly hits us that no one is going to checking on us for the next three months.


    You may experience an entirely different set of emotions than you expected. Instead of turning cartwheels of joy, you might feel “let-down” or “unsettled.” After being enveloped in almost continuous care during treatment, it’s time to adjust, and this can be a scary time of transition from being the patient into being the survivor. Many of us develop close bonds with members of our treatment team, but it’s time for us to graduate and learn how to live our life again. Remember that we endured all of our chemo and radiation to avoid dying — so we may have to step out of our comfort zone to find our new normal.

    Concerns we may feel after treatment is completed
    The transition from patient to survivor is not easy for anyone. We have many questions and worries.
    Side effects from our treatments — issues like chemo-induced peripheral neuropathy, baldness, diarrhea, weight loss or weight gain, difficulty sleeping, residual pain and coping with their body changes due to treatment (i.e., mastectomy, ostomy, artificial voice box, difficulty swallowing, sexual dysfunction). • Will we be able to recognize symptoms of a recurrence?
    • Accepting long-term side effects of treatment — including effects from radiation and chemotherapy, medications to help prevent bone loss and hormone-suppressing medications. • Emotional concerns including fear of recurrence, self-esteem, our financial future and the possibility of leaving our loved ones behind. • Understanding and coping with our prognosis for the future. • Re-establishing our relationship with our primary care physician. • Finding a deeper meaning for life.


    Not every person will experience all of these concerns, but these are some of the concerns that we may might encounter.
    Making plans for our future
    We may lose sight during our treatment of our long term goal — the goal of treating our cancer and beating it back into a durable and long-lasting remission — that is, attaining a “No Evidence of Disease” aka NED status. We get so caught up in the side effects of treatment and the resulting anxiety and stress that many of us forget just how wonderful life is.
    After treatment, it may require a few months for us to settle down and settle into our new normal. Don’t be hard on yourself. We are recovering from some of the harshest treatments of modern medicine. But recovery doesn’t mean just sitting at home and worrying about all of the “what ifs” that might pop into our heads. There are many concrete actions we can take to put ourselves on the road to full recovery.
    These actions are common sense, but they make even more sense after we’ve survived cancer. We’ve learned that we need to nurture our body because we’ve seen, first-hand, that when we don’t have our health, we really can’t enjoy life.
    Alcohol. Experts recommend limiting our alcohol consumption to one drink for women, and two drinks for men. If we’ve over 65, both men and women should only have one drink daily. There are some health benefits from moderate alcohol consumption (in particular, red wine), it’s best to limit our consumption to just one drink a day.
    Exercise. Exercise is an under-appreciated activity. Many studies demonstrate that exercise increases survival after cancer. Even more important, exercise greatly improves our quality of life. We’ve often tired, stiff and suffer from insomnia after cancer treatment. We might even be a grumpy and irritable. Exercise has “universal” advantages. Start slowly. Walking is a perfect exercise, and it’s free. Gym memberships are more affordable from ever. If we’ve over 65, Medicare pays for Silver Sneakers, a “Get Moving” cardio exercise program available throughout the United States. The American Cancer Society recommends 150 minutes of moderate exercise every week. Here are just a few of the benefits to exercise:
    Increased stamina. • Rebuilds strength and muscle tone. • Reduces stress and anxiety. • Improves mood. • Reduces depression. • Loosens tight muscles. • Increases ability to do our favorite hobbies.

    Food. Small changes made over time produce new eating habits. Drink water or black coffee instead of sodas. Learn to say NO to deep-fried food. Eat more chicken and fish and less red meat (pork counts as red meat-it’s not the other white meat). Eat more salad and vegetables. Add fruit to your daily breakfast. Swap out rich dessert and eat melon instead. Try whole-grain breads; they add fiber, taste good and metabolize more slowly. Eat five half-cup servings of vegetables and/or fruits daily. Gradually cut out junk food, but don’t have a guilt trip if you splurge occasionally. These dietary changes will help you lose weight gradually. If you’re underweight after cancer treatment, consult with an oncology nutritionist to learn how to regain weight back up to a normal BMI (Body Mass Index).
    Sleep. Sometimes, there are nights when sleep won’t come. Quality sleep helps our bodies recover. Many cancer survivors have insomnia. 


    Anxiety and fear of recurrence are contributing factors — exercise helps many people sleep better. Here are some other tips that may help us:
    Don’t drink caffeine with 8 hours of your regular bedtime. • Avoid excessive alcohol consumption. Although it initially helps one fall asleep, inevitably, it causes us to wake up at 2 am and not be able to fall asleep again. • Avoid watching TV or computer time for at least an hour before going to bed. A warm shower or soak in the tub is ideal for falling asleep. Reading is another good before-bedtime activity. • Don’t exercise without 2-3 hours of your regular bedtime.

    Stress. Stress reduces our quality of life. We, as cancer survivors, have physical and emotional factors that produce stress — fear of recurrence, the financial toxicity of treatments, questions about working in the future, physical consequences of treatment — so we’ll have stress. Here are some tips to help manage stress.

    Cancer support groups. • Counseling. • Exercise. • Hobbies and sports. • Medications for depression or anxiety. • Relaxation techniques, like mindfulness or meditation. • Social network of friends and co-workers.



    Tobacco. The evidence is clear. Smoking increases our risk of recurrence and puts us at risk to develop a secondary cancer. There are lots of resources to help you quit; ask your doctor for help in beating this habit. Weight. Start with small changes. It’s not necessary to accomplish all of these lifestyle changes at once. The transition to a healthier lifestyle may take 18 months or two years, but the reward is feeling energetic, strong and able to handle whatever life throws you. Little changes over time become lifelong habits.
    So WhatNext?
    It’s up to each of us. We’ve played the hand we were dealt, and we’ve completed our treatment. It’s now up to us as to what we’re going to do with our life. We, as survivors, aren’t victims. We did what we had to do to survive our cancer experience. We have the power to take charge and improve our physical and emotional health so that we can enjoy our life once again.
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    Join us at WhatNext to get the support you need. It's free to register but priceless to be a member. Just click below to start.

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    Nutrition During Chemo - What You Need to Know

    Nutrition during chemotherapy is a much debated topic — in chat rooms, in groups like WhatNext.com, on the internet — plus friends and coworkers giving us advice. Go vegan, sugar feeds cancer, don’t eat meat or drink veggie smoothies. It’s no wonder that patients are confused about what to eat during chemo.

    What’s most important?
    According to most experts, unintentional weight loss may lead to worse outcomes in patients. When we don’t eat properly, we become malnourished and lose weight.
    In the two weeks after my first chemotherapy infusion, I lost over 3 pounds. My beginning weight was 128 lbs. I was exhausted during the week after my first chemo and barely ate; the second week, I ate a little but gave into my stress, anxiety and fatigue. I was shocked when I learned at my next appointment for my second cycle of chemo that I had lost over 3 lbs.
    My oncologist had outlined my treatment plant. I was going to have 12 cycles of this chemotherapy regimen. I quickly did the math and calculated that at this weight loss rate, I would be down to less than 95 pounds by the end of treatment. It was at that moment that I made a pledge to myself that I had to be proactive about maintaining my weight. I used a weight calculator to estimate how many calories a day I had to eat to maintain my weight. My oncologist told me at my second appointment that she didn’t care what I ate — she said “eat what you are able to tolerate and once you’re done with treatment, you can transition to healthier eating.” I was able to maintain my weight throughout treatment (except for right after my complex surgery).
    What is malnutrition?
    Malnutrition is when our bodies don’t get enough nutrients, including essential vitamins and minerals and sufficient protein. Research shows that most cancer patients don’t consume enough vital nutrients during treatment … potentially causing delay in treatments.
    Malnutrition can lead to cancer cachexia, a condition of weight loss and muscle wasting away that leads to declining immune, physical, and mental function.
    If we’re overweight when we begin treatment, don’t look at treatment as a good way to lose weight. Even a 5 percent weight loss might lead to a poorer outcome. Unless you have been advised by your treatment team to lose weight, try your best to eat enough to maintain your weight.
    What should I eat?
    Chemotherapy and radiation therapy can lead to change in our taste buds. We just have to experiment to find foods that appeal to us and that we can tolerate. Here are the basics that we need to remember.
    Protein. If we’re sedentary during treatment, women need about 46 grams of protein daily and men need about 56 grams. Lean meats, seafood, beans, lentils and dairy all count towards our protein intake. Protein helps our bodies rebuild muscle and repair damage caused by our cancer. • Fruits and vegetables. Eat five half-a-cup servings of fruits and vegetables daily. Choose a wide variety of colors to get a complete array of vitamins and minerals. Carrots, broccoli or Brussel sprouts, squash, sweet potatoes — banana, kiwi, cantaloupe, watermelon, apples or pears. • Dairy. Depending on your weight, choose low-fat or full-fat dairy products. They provide calcium and protein — milk, ice cream, frozen yogurt, cottage cheese, sour cream and yogurt. Greek and Icelandic yogurt are high in protein providing 10-15 grams of protein. • Carbohydrates. Starchy vegetables like potatoes, beans and peas are filling and provide energy over a long period of time. Whole-grain pasta and bread is metabolized more slowly and helps lower blood sugar levels. • Beverages. Avoid sodas. Drink water, coffee, green and black tea and herbal teas instead. Dilute fruit juice with water to avoid blood sugar spikes – eating the whole fruit is best. Remember to stay hydrated.

    How can I get enough calories?
    Use the calorie calculator to determine how many calories you need daily to maintain your weight. Divide that number by 4 or 5. Many patients find that it is easier to eat a smaller quantity more often. Here are some helpful tricks.
    Sandwich. Use the same amount of meat and cheese to make half a sandwich. Half of a sandwich is easier to commit to eating if you’re tired or queasy. • Split pea or bean soup. Packed with protein and fiber, try either of these thick soups served over some jasmine or basmati rice. They are comfort food that is tasty and easy on the digestive system. • Yogurt. Greek and Icelandic yogurt have 10-15 grams of protein, about one-quarter of a woman’s daily protein requirement. You’ll get lots of calcium too. Admittedly, we may have to acquire a “taste” for these styles of yogurt but they pack of lot of nutrition in a little cup. • Eggs. Eggs are another food packed with nutrition. They’re easy to digest. A cheese omelet is packed full of protein, calcium and good taste. • Grits or oatmeal. Oatmeal topped with a little brown sugar, dried fruit and half-n-half tastes good and provides fiber. If you’re from the South, melt your favorite cheese into slow-cooked stone ground grits (House Autry is my favorite brand). • Milkshakes. Many patients find that milkshakes are delicious, easy to digest and filled with calories and nutrition. If you have a sore throat from radiation, milkshakes are your best food friend. • Grilled cheese sandwich. Put extra cheese into a grilled cheese sandwich. • Loaded baked potato. Make yourself a loaded baked potato with real butter, sour cream and shredded cheddar cheese.

    Weigh yourself once a week to ensure that you’re maintaining your weight. That week off chemo offers an opportunity to eat a little more to prevent weight loss.
    If you’re not able to eat healthy foods (because of mouth sores, diarrhea, gas, nausea, sore throat from radiation), then eat whatever you can eat — ice cream, warm brownies, Half-n-Half over cream of wheat, or Boost Plus. Forget the myth that sugar feeds cancer. Eat whatever you can. 
    Jello with ice cream, canned peaches and cottage cheese, apple pie or cheese cake. Just eat.
    Be sure to tell your oncologist if you’re having difficulties eating. They might prescribe an appetite stimulant to help you.
    Don’t feel guilty about eating what you can tolerate. Cancer survivors will tell you that they ate what they could so that their treatments could stay on schedule. This is not the time to lose weight.
    Do you have any tips for getting through chemo and keeping your weight and nutrition up? How did you manage? Please leave a comment below. 
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    Join us at WhatNext and get support getting through your own cancer diagnosis and treatments. Compare your journey with others, ask questions about issues you are facing, and get inspiration and motivation to get through each day. It's free to register but priceless to be a member! Watch the video below to see how WhatNext can help you.

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    Cancer Leaves a Mark - Coping With Disfigurements

    We don’t always think about the physical disfigurements that cancer may bring to us. Surgery is often the best option to achieve a cure or long remission or extended period of NED. As we have learned from each of our diagnoses, cancer does not pick convenient locations.


    Cancer can occur almost anywhere in our bodies. Cancer occurs in virtually inaccessible locations. Cancer occurs in organs essential to bodily functions. Cancer is an aggressive disease — getting rid of it can be disfiguring, create loss of a bodily function and cause quality of life issues.
    Realizing that others have faced what we are about to experience gives us strength and courage and the will to move forward with treatment. Some procedures that cause physical disfigurement are obvious — others produce unseen disfigurements that impact bodily function and self-image. Let’s look at some examples.
    Types of Physical Disfigurements
    Many physical disfigurements are visible while others are hidden by clothing. Hidden disfigurements are just as difficult for patients because they, too, impact our self-esteem and confidence. We see every time we get dressed or undressed.
    Amputation. Amputation may be required for bone cancer. When cancer occurs in the arms or legs and has invaded tendons, nerves or blood vessels, an amputation may be the only option. When bone cancer occurs in the pelvis or jaw, a wide excision (to obtain clear margins) is performed, and bone grafts are used to rebuild the bones removed. Very skilled surgeons are sometimes able to perform reconstructive surgery after amputation to help preserve function.


    Head & Neck Surgery. Patients suffer from scars and muscle atrophy in their necks that can’t be easily hidden. Changes in speech patterns and our voices cause lack of confidence and may lead to social isolation. Some patients may have to have part of jaw bone removed creating self-image problems and lack of self-assurance out in public. Cancer of the larynx may require removal of the patient’s larynx (voice box) — a hole (known as a stoma) is created in the throat for the patient to breath. These patients need extra support as they adjust to their new normal.
    Incontinence. Incontinence is the inability to control of one’s bladder or bowels. Patients who have bladder, anal, rectal or colon cancer may suffer incontinence as a result of treatment. Surgery or radiation may damage nerves or muscles that control evacuation of our bladders or bowels. Some cancer survivors become reclusive and rarely leave their homes. However, there are a wide selection of products to aid with incontinence. Pelvic floor physical therapy helps some patients regain control. We shouldn’t feel ashamed that a cancer treatment has caused us to be incontinent.
    Mastectomy. Mastectomies are the #1 cause of physical disfigurements among cancer patients. If you include lumpectomy scarring, breast cancer accounts for a significant amount of physical disfigurement and loss of self-esteem. Each patient selects their way to address the changes to their body. Options include reconstruction, going flat or decorative tattoos to camouflage the scars. There is no right or wrong way to cope with the aftermath of mastectomies — each patient decides what is right for them.
    Ostomy. An ostomy provides a way for urine or stool to leave our body when cancer affects our bladder, rectum, anus or colon. Sometimes, an ostomy is temporary to allow healing after surgery or an injury. Other times, it is permanent because we must have aggressive surgery to save our life. Ostomies are needed by other people too, not just cancer patients, because of disease or injuries. I have a permanent colostomy, because of my advanced rectal cancer. My oncologist told me on my first appointment that I would need an ostomy (due to the location of my cancer). I did my best to put my worries on the “top shelf” of my brain until the time came for my surgery. I joined an ostomy support group before my surgery so that I would have people who could help me afterward. I’ve adjusted well, exercise regularly, eat almost anything and wear fashionable clothing. Ostomies provide good quality of life without the worry of accidents and urgency to find a bathroom.
    Scars. Scars may be seen or unseen. But when we see them in the mirror, they are “forever” a reminder of our cancer experience. Mastectomy, colon and liver resections and wedge resection scars look like roadmaps. Though not visible to the public, we see them. Head and neck and thyroid cancer patients have visible scars that rob them of self-confidence.
    Some breast cancer patients have radiation fibrosis scars on their upper chest. Women who receive pelvic radiation for cervical, ovarian, rectal or anal cancer may develop vaginal stenosis causing painful sexual intercourse or preventing sexual relations completely.
    Head and neck cancer patients experience scarring and narrowing of the esophagus from radiation, necessitating dilation of the esophagus to swallow more easily.


    Skin cancer patients experience scarring too. Because melanoma is more likely to spread than other types of skin cancer, doctors remove a larger margin. So scars are larger, about twice as large on average as for basal or squamous cell skin cancers. Special make-ups help camouflage skin scarring.
    Ways to cope with disfigurement
    Every survivor has to find peace with the aftermath of their treatment. If we don’t make peace within ourselves, we won’t enjoy the life we fought so hard to save.
    We are not alone. We are not the first person to experience physical disfigurement from our cancer treatment, nor will we be the last. My surgery, abdominoperineal resection aka APR surgery, sounded so complex that I wondered how anyone could survive. But I found comfort in knowing that many patients before me had this surgery and lived normal lives afterward. If they could, I reasoned, then I could survive it too and thrive afterward. • Sense of humor. Sometimes, laughing about how dire how situation seems is the only way to cope. Trust me … with rectal cancer, I’ve got lots of funny stories to tell. • Positive attitude. A positive attitude goes hand-in-hand with a sense of humor. A positive attitude doesn’t “fix” things, but it helps us live each day more fully. We are stronger than we realize. We are braver than we imagined. • Counseling. Never underestimate the power of a skilled counselor to help you sort through your emotions and find peace. • Support group. Groups like WhatNext and specialized groups for specific medical issues help us realize that we are not alone. People in a support group are willing to share their experiences with new members so that we don’t struggle to find solutions for dressing, walking, or medical supply sources.
    We can’t undo our diagnosis. We can’t avoid our potentially curative treatments because they are disfiguring. But with the help of our medical team, our family and our support group, we can find peace and live a full and meaningful life.
    Has cancer left a mark on you? What scars or disfigurements do you have and how have they affected your life? Please leave a comment about it. 
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    Share Your Own Cancer Story and Inspire Thousands!


    Do you want to help others diagnosed with the same kind of cancer that you had?



    Do you remember those dark days when you were first diagnosed? The fear, the confusion and the “what ifs” were overwhelming. If you are like me, you probably wondered if life would ever would be normal again. Over 1.7 million people in the United States were diagnosed with cancer in 2018 — that’s over 4,900 people every day here in the U.S. who hear the words, “You have cancer.”
    Help others by sharing your cancer story. Become a WhatNexter of the Week. It doesn’t matter what kind of cancer you’ve had. Maybe cancer has visited your doorsteps twice — having cancer twice happens to about 17% of us. It doesn’t matter what stage cancer that you have. Some of us are diagnosed at an early stage through a routine physical. Others go to several doctors before their cancer diagnosis explains their symptoms. We all want to hear your story, from diagnosis to completion of treatment.
    What’s your story?
    Everyone has a story. Every story is different. Maybe the doctors thought you were too young to have cancer. Perhaps, your first oncologist thought that you were too old to have aggressive treatment. Tell your story so that those newly diagnosed can read about your treatment and find comfort in your surviving your cancer diagnosis.
    Any kind of cancer. Whether you have one of the ten most common kinds of cancer or an uncommon cancer, there is someone who needs to read your story so that they know that they are not alone in their daily battles.


    Stage I or Stage IV. No cancer treatment is every insignificant. Some kinds of early cancer don’t get treated at first — they “watch and wait” — imagine how a newly diagnosed patient feels when they learn that “watching and waiting” is what’s usually recommended. Any type of treatment. While we think of chemotherapy as the usual treatment for cancer, the truth is that 60% of cancer patients receive radiation as part of their treatment. You may have been one of the first who received an emerging treatment — share your experience to help bring peace of mind to someone else.
    Big city hospital or smaller cancer treatment center. Urban or rural, where we live is our home base. We might have to travel for some of our treatments because we live in a rural area or a sparsely-populated state, but just because we don’t go to one of the Top Ten cancer centers in the U.S. doesn’t mean that we can’t get world-class treatment. Share your unique situation to help others navigate the logistics of cancer treatment.
    Juggling family responsibilities. How did you manage family responsibilities? Were you a young mother with toddlers? Were you a baby boomer caring for your aged parent? How did you manage your family duties while you were in treatment?
    Could you work? That’s one of the first questions many newly-diagnosed patients ask because cancer treatment is expensive and our job might be the source of our healthcare insurance. Sharing your story about work, short-and-long-term disability and how you managed to keep your job will help others.


    Insurance issues. Did you experience treatment delays because of insurance issues? Or did you or your medical team have to appeal denials for necessary procedures? Were you able to get copay assistance if you needed it?
    Reactions from family and friends. How did your family react to your diagnosis? Were they supportive or did they physically and emotionally abandon you? Who helped you most? Were coworkers supportive or believe that you were faking it to get out of hard tasks?
    Your story is important to someone. Think about the questions and problems that came up during your treatment and how you solved them. Remember how you found hope and courage to face chemo, radiation or surgery. Your story can help someone newly diagnosed.
    Just read some of our WhatNexters stories

    Bug’s breast cancer story


    Sara, a 26-year old, who has already had cancer twice and graduated from college


    William, who suffers a cardiac arrest and then is diagnosed with Stage IV colon cancer

    Are you ready to be our latest WhatNexter of the Week? If you’re ready to share your story, read our blogger guidelines and get started.
    You will just need to register on the site and make your profile page then contact us to get instructions on how to get your story to us!
    Click Below to register, it's free to join but priceless to be a member!!


    Watch the video below where David Wasilewski, WhatNext Founder and CEO describes why WhatNext was created and how it will help you.

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    "Bug"-Her Story of Triumph Over Breast Cancer

    "Bug" is our WhatNexter of The Week. She shares her story of beating a breast cancer diagnosis, going on to enjoy life, and giving back through volunteering to help others through their own diagnosis. Take a look below, and drop by her page and thank her for sharing.
     

    Bug on Halloween at Treatment

    Leading up to my 50th birthday, several friends told me how I’d love my 50s. They said they felt more comfortable in their own skin in their 50s, freer to be themselves, life settled down more, etc. I turned 50 on July 8, 2010. On July 21, 2010, I was diagnosed with Stage I breast cancer. I thought, “Hmmm, what a way to start my 50s.”
    I have always had regular mammograms and have had about six breast biopsies over the years. I have dense breasts and benign cysts and calcium deposits have been found. After two sisters were diagnosed with DCIS, my doctor suggested having breast MRIs as well. A few years after that suggestion it was indeed a breast MRI that found a cancerous tumor.
    A day after the MRI the radiologist at the imaging center called me at home. It’s interesting how many thoughts can fly through your head in a few short moments. After he identified himself I thought, “Oh, that’s nice. The doctor is calling me himself.” Then I thought, “Wait. Why is the doctor calling me himself? Something must be wrong.”
    The radiologist said the MRI results showed a very small, early stage cancer and he was confident that a lumpectomy and radiation would be all that was needed. I felt disoriented as he spoke and knew I wouldn’t remember what he was telling me so I grabbed the nearest thing I could find to write on which was a 3 X 3 yellow Post-it pad. I scribbled notes as fast as I could as the radiologist spoke and ended up with about ten slips of paper.
    My husband had left town earlier that morning on a business trip. I wanted to call him when I hung up the phone but he was still flying to his destination at that time so I called one of my sisters. She asked me if I wanted her to come over and I said, no, I was okay. I hung up the phone and called my boss and told her the news. Then I called my sister back and said I would, in fact, like her to come if that was possible. She lived three hours away but happened to be only an hour and a half away on a business trip of her own that day. She arrived at our home later that afternoon. She had nothing – no change of clothes, no toothbrush, nothing – but she came. Later that morning I finally reached my husband who was, needless to say, as shocked as I was. My sister spent the night and left the next day. I was still feeling shaky so a girlfriend spent the second night with me. My husband came home the following day.
    My husband and I met with a surgeon that our family doctor recommended. I didn’t like her AT ALL. She didn’t know anything about me when she entered the exam room. I realize doctors don’t always have a chance to review a patient’s file before meeting them but she knew NOTHING. She was also very unorganized. She kept shuffling papers and jumped around from topic to topic. When she talked about scheduling surgery she said, “Well, my kids are out of school but I could probably find a babysitter and do the surgery.” Gee, thanks.
    The surgeon then did a manual breast exam. I find breast exams uncomfortable but this one HURT. She pressed really hard and squeezed my nipples. I was just about to tell her to stop when she finished. She decided that there were lumps that needed to be investigated. I told her I had had thorough examinations already. She insisted. I already had an appointment scheduled for the next day to go over the MRI results with the radiologist. The surgeon took a purple marker and drew circles around areas on my breasts where she said there were lumps and said to have the radiologist check out those areas again when I saw him the following day.
    When my husband and I were walking to our car I told him that she was never going to touch me – that I wouldn’t let her take a wart off my foot. Ever the cool headed one, he said, “Well, her bedside manner isn’t good but she could be a great surgeon.” I told him I didn’t care – she wasn’t going to do my surgery.
    When we got home I had my husband take a photo of my bare chest so the radiologist could see where the surgeon had drawn circles and then I washed my chest. I couldn’t get the purple ink off fast enough. I don’t use words like “traumatized” lightly – but I was traumatized by that appointment. That was nine years ago and I still feel disgusted when I think of it.

    "Bug" Valentine's Day 2019

    The next day my husband and I met with the radiologist and went over the MRI results. I love that doctor! He is still the head of that imaging center. He is very calm and reassuring and instills complete confidence when talking to him. I relayed what happened with the surgeon. He also felt that thorough exams had already been done but said he’d take a look. My husband showed the doctor the photo. The doctor did a manual exam and also did an ultrasound on the “suspicious” areas. He found no other worrisome issues.
    I told the radiologist I didn’t like that surgeon and wanted to see someone else. He recommended a surgeon he thought I would like. I set up an appointment with the second surgeon and, indeed, I loved her! Within five minutes I knew she’d be doing the surgery. She entered the room, introduced herself and said, “You have quite a history.” She actually looked at my file!! She clearly and concisely explained the situation and the game plan. I had been looking to my husband for support and his opinion along the way but I didn’t even ask this time - I just scheduled the surgery.
    I had a lumpectomy on August 16. They also removed two lymph nodes which, thankfully, were clear. I get very sick from general anesthesia and discussed this issue with the anesthesiologist who met with me before the surgery. He was a young, hotshot type who stood at the foot of the bed and pretty much blew me off. He said, “Don’t worry about it. I do this for a living.” I was sicker than a dog after that surgery.
    The lumpectomy was on a Monday. At 5:00 on Friday the surgeon called and said the margins were very narrow. She said that normally they like to have wider margins but that it was up to me as to whether or not to have a re-excision to get wider margins. She said if I could live with things as is then fine but that if I was the type to sit up at night worrying about it then I should have a re-excision.
    I was so disappointed to hear this news. I am a huge worrier so had a re-excision. A different anesthesiologist was working that day – thank heavens. When he met with me prior to the surgery I told him what happened after the first surgery and tried to impress upon him how sick I get with general anesthesia. He was great! He came to the side of the bed and looked me in the eyes and LISTENED. He loaded me up with anti-nausea drugs. I was barely sick after surgery! I even had soup and crackers for dinner that evening. (It happened to be our wedding anniversary – August 30. Happy Anniversary, Babe!)

    "Bug" and Her Husband in Maui 

    Shortly after the re-excision I met with the oncologist – another doctor whom I loved. She seemed to be up on the current literature and therapies. She is very smart and straightforward yet kind. It wasn’t until my husband and I were sitting in the waiting room that I even thought about the possibility of her recommending chemotherapy. Neither of my sisters had it and the radiologist had told me on the phone that he felt radiation would be the appropriate course of action. But suddenly I felt intensely nervous that the oncologist could disagree and recommend chemotherapy. Fortunately, she agreed with the radiologist and recommended radiation. She also mentioned Tamoxifen. My husband (who is a research scientist) and I had done research on Tamoxifen and also talked to a colleague of his who is familiar with the drug, how it works, its efficacy, etc. (his opinion was negative). Given all of the info (i.e., the stage of the cancer, my oncogene testing, the fact that Tamoxifen would only change the risk of reoccurrence slightly, the possible side effects of the drug, etc.) I decided against taking it. I did ask the oncologist, “Am I signing my own death certificate if I don’t take it?” She said, “No, not at all.” That confirmed it for me. I said, “Then, no, I’m not taking it.”
    Next step… I had 33 radiation treatments. The staff at the radiation facility was terrific. Everyone was very kind and helpful. (I even got choked up saying goodbye to them on my last day.) I’m happy to say that radiation was pretty uneventful. I vigilantly used aloe vera three times a day – in the morning after my shower, in the afternoon after treatment, and once more before bed. I didn’t burn too badly. I kept hearing that some folks experience terrible fatigue with radiation. I became very worried about that and asked one of my sisters if they experienced that. I said, “Am I going to be in the middle of a grocery store aisle and keel over?!” She allayed my fears and, indeed, I never keeled over anyplace. I continued to work as usual. About half way through treatments I got a little tired and would take a short nap after dinner but the fatigue was very manageable. My husband took a Post-it note pad and wrote a number on each page starting with 33 and ending in 1. We attached the pad to the refrigerator. Each day after treatment I would tear off a page as a countdown for the number of treatments I had left.
    One interesting thing that happened during radiation… As those of you who have had radiation know, you pretty much see the same people every day in the waiting room. Some are very talkative, others don’t say a word, and the rest are somewhere in between. One woman I encountered wore earbuds and didn’t look at or speak to anyone. On Halloween day I went for my usual radiation appointment. I sat in the waiting room in my jeans, gown, and a red sponge clown nose and read a magazine as I waited for my turn. The woman with the earbuds saw me and laughed out loud! She came over to me and said, “We’re going to survive this.” I said, “Yes, we are.” I saw her one more time after that. She did not look at or speak to me. That’s okay. It made me feel good to think I made her smile even if it was only for that one brief time.
    During the time I was having radiation I met with a genetic counselor. She was great, too. She was actually the wife of someone who worked for my husband. She called me and told me she was assigned to my case and asked if I was comfortable with her being my counselor because, if I was not, she could turn my case over to someone else. I knew that she was smart and would be totally discreet and told her I was fine with it. When we met at her office we discussed my family history and I took a blood test to see if I was positive for the BRCA gene. On the day of my last radiation treatment I found out that I was not. That day was also the Wednesday before Thanksgiving. I felt like I had extra things to be thankful for that year – radiation was over and no BRCA gene.
    None of the medical personnel I dealt with mentioned lymphedema. An acquaintance told me that I should discuss lymphedema with the oncologist so I brought it up at my next appointment. The oncologist said that given I only had two lymph nodes removed my risk of lymphedema was very small to none. To be on the safe side, I did have lymphedema physical therapy and learned exercises and lymphatic massage and wear a compression sleeve and gauntlet when I fly. So far, so good.

    A Villa on Lake Como 

    My shoulder on the affected side started to hurt several months later. I saw an orthopedic surgeon and realized that I had been protecting my breast without even realizing it. I was placing my hand on the middle of my chest with my arm across my breast as if to protect myself. I realized that I was doing it when I walked down hallways at work where doors opened into the hallways and doing it when I was in a crowd. The doctor said it was actually quite common for women who had had breast surgery to do that. He diagnosed an issue with my rotator cuff and recommended physical therapy which helped a lot. My shoulder still “pops” occasionally and I have discomfort now and then but it’s manageable.
    I continue to have a mammogram and MRI every year but since treatment they have been scheduled such that I have a mammogram then six months later I have an MRI then six months later I have a mammogram, etc. I have severe anxiety around exam time (I’m a terrible worrier in general) but I try to remind myself that it’s better to catch something early than late. Fortunately, I have a strong support system in my husband, friends, and most of my family. I also feel very fortunate that my husband is a research scientist (specifically, a toxicologist) so if I run across something I don’t understand he can either explain it to me or help me find the information I need.
    It has been nine years and thus far I have been free of a re-occurrence. The fear is always in the back of my mind but I’m trying to live life and be happy. Having had cancer has made me more grateful for what I DO have. If there is some sort of annoyance in my life – whether it be an ache or pain or a ding in my car, etc. – I think, “Well, at least it isn’t cancer.” Having had cancer indeed puts things into perspective.
    I retired five years ago. I decided that life was too short to stare at a computer screen all day. My husband and I like to travel, I’ve taken up golf, joined a women’s group that does a variety of activities (day trips, wine tasting, etc.) and I do volunteer work. One of the places I volunteer is at the local American Cancer Society office. I really enjoy volunteering there. It’s a very positive environment and really encouraging because the staff genuinely cares about the ACS mission and works really hard. I help with events and projects but the main thing I do is wig fittings. The ACS will give one free wig per cancer diagnosis to a patient and I help women find a wig they like. When a patient does find a wig she likes, I hope the help I’ve provided has given her at least one small “feel good” thing while she’s going through her own cancer experience.

    Bug is a little nervous holding this Koala Bear
    I’m a bit leery of social media and do not participate in any other groups – no Facebook, no Twitter, etc. WhatNext was formed in partnership with The American Cancer Society, so that was the reason I trusted it and joined. I’ve found comfort and good information on WhatNext. It has helped a lot to know there are other people out there who are going through the same things and have the same fears. No one gets put down for being anxious about an upcoming scan or concerned about results. People on WhatNext “get it”. 
    I continue to stay on the site because I just like to help other people if I can. I know what it’s like to need help – whether it’s related to cancer or not – and if I can help someone else and make things even a little better or easier for them then that would be great.
    Would you like to inspire others and help them get through their own diagnosis? It's simple to do, just share your own personal cancer story with us and we will share it with thousands of people. Contact us for more details. 

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  • KarenG_WN's Avatar

    KarenG_WN posted a blog post

    Traveling With Cancer

    Cancer doesn’t have to be a “bad” travel partner, but if you’re in active cancer treatment, traveling with cancer requires extra planning in the event of the “unexpected.” It’s probably best to postpone an overseas trip or a cruise until after your treatment is over — a medical emergency in these two situations could be catastrophic. A medical evacuation from overseas may cost well over $100,000.00.


    Talk to your oncologist before planning a vacation. Before committing to a vacation, have a frank talk with your oncologist about the feasibility of travel. The stage of your cancer, your side effects and the frequency of your treatments help determine if it’s feasible for you to plan a vacation trip. Ask if you are at risk for blood clots during flying and the precautions you should take.
    Medical records. Assemble a folder with your oncologist’s contact information, including phone numbers. Prepare a list of current medications, including your cancer medications. If you’ve recently had radiation, include their phone number in your records — new side effects can appear as a result of radiation or chemo.
    Get all prescriptions filled. Don’t transfer any prescription medication to another bottle or daily pill reminder. Don’t pack your medication in suitcases that will be checked — lost luggage would mean lost medications. Many patients prefer putting all of their medications in a large zip lock bag and carry in a larger purse or tote that never leaves your side.
    Medical insurance. Call your insurance company and find out what they cover at your destination and if your copays will be more expensive.


    Manufacturer’s card for implantable devices. Make sure that you have your cards for any implantable devices — this includes not only your chemo port, but pacemaker, pain medication pump, insulin pump, spinal stimulator or knee or hip replacement.
    Local medical emergency contacts. Plan in advance by searching your destination for the nearest emergency room and cancer treatment center. Check to see if they will be in-network for your insurance.
    Contact the airline if you are flying with oxygen to ensure a hassle-free check-in experience. Make arrangements for curb to gate, gate to gate (if connecting) and gate to curb at your destination. It’s best to avoid unforeseen fatigue or a fall.
    Insurance card and ID. Don’t forget to have these critical documents in your wallet
    .
    Precautions to Take at your Destination
    Most of these are common-sense precautions, but these few simple reminders help ensure that your trip is enjoyable.


    Drink plenty of water. It’s a good idea, even when traveling within the United States, to drink bottled water to avoid a tummy upset. Water sources and water treatment procedures vary from location to location. Some municipal water may have a sulfur smell that could trigger nausea.
    Avoid excess alcohol consumption. Enough said — alcohol can cause dehydration that leads to dizziness and nausea. Don’t spoil your trip with “one too many.” Wine may cause diarrhea.
    Avoid excessive sun exposure. Wear sunscreen and light-weight long sleeve tops
    . If you've lost your hair, don’t forget the sunscreen on your head or wear a cap or scarf.
    Practice food safety. Wash your hands frequently. Forego buffets. Make prudent food choices.
    Pace yourself. Get enough sleep and take a daytime nap to help you feel your best.
    The Bottom Line …
    Many cancer patients can safely travel during treatment with planning and reasonable precautions. You, your family and your oncologist should discuss the feasibility of a cross-country trip during treatment. A shorter trip, by automobile, might be a better choice for many cancer patients.
    Never underestimate the renewing power of a short vacation while you are in treatment.
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    Join the Community at WhatNext. It's free to join but priceless to be a member! You don't have to fight cancer alone, being part of a community of patients, survivors, and caregivers who have been through what you are facing now is a valuable resource as you move through your own journey. Just click below to start your registration>>