AMOENA4LIFE amoena.us
Issue 2018
PINK TUTUS COMBATING BREAST CANCER Bob Carey’s Unusual Story
EASING THE SIDE EFFECTS OF THERAPY These Activities Can Alleviate Side Effects
“TODAY’S SURGICAL TECHNIQUES CHANGE THE REQUIREMENTS” An Interview with Amoena Engineer Helmut Wild
“I LIKE MY BALD HEAD” Mastectomy, Chemo, and Self-Confidence — a Facebook Chat
SPECIAL:
Treatment After Breast-Conserving Surgery
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EDITORIAL Dear Reader, Breast cancer is a huge challenge for any woman — from the diagnosis to battling the illness to coping with therapy and ultimately returning to normal life. We want to be there for you every step of the way. Not just with our products, but also with well researched information, tips, and inspiring stories from women who have found their own way of dealing with the situation. One of the women you will meet in this issue is Sandra Lotz, who explains in her blog who and what gave her strength during her therapy and in especially difficult moments. She’s an exceptional woman, open and very inspiring.
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The employees of Amoena also give their contribution to improving the lives of those affected by breast cancer. Helmut Wild is a plastics technology engineer and has worked for Amoena for 30 years. Almost no one knows more than he does about what is technologically possible when it comes to breast prostheses and how the products have changed over time. He talks about his work in an interview. Want to read more from us? We’d love for you to visit us online at Amoena.com where you’ll find more articles created just for you. We hope you enjoy reading,
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AMELIE BLUME*, 32, lives near Hamburg, Germany. In early 2016, she discovered swelling under her left arm. The diagnosis: a carcinoma in her left breast. The genetic test showed there was a high probability that she would also develop breast cancer on her right side. Amelie opted for a bilateral mastectomy. Find out more about Amelie on page 20. *For privacy, Amelie’s name has been changed.
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Page 22 Easing Side Effects with Exercise Page 14 “The surgical techniques change the requirements”
CONTENTS 6 PINK TUTUS COMBATING BREAST CANCER
The Carey Foundation supports women with breast cancer. Their symbol: a pink tutu.
C ANCER CELLS CAN’T REALLY BE 16 “STARVED” OUT
Sugar allows some cancer cells to grow more quickly — according to some studies at least. But what does that mean for your diet?
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QUESTION: CAN THE BREAST CHANGE FURTHER AFTER BREAST-CONSERVING SURGERY?
Lumpectomy changes the breast. Breast care nurse Gabi Knötgen outlines the extent of these changes.
RADIATION & PARTIAL SHAPERS
Many women wear prostheses even after lumpectomy. Three practitioners explain why.
Amelie Blume has breast cancer — and she wants to share her experience. We chat with her via Facebook.
14 “THE SURGICAL TECHNIQUES
CHANGE THE REQUIREMENTS”
22 E ASING SIDE EFFECTS WITH
EXERCISE
Main topic: Breast - conserving surgery
12 OFTEN UNAWARE: LUMPECTOMY,
20 “ I LIKE MY BALD HEAD”
Breast cancer therapy often has side effects. We talk about which activities can help alleviate them.
The demands for breast prostheses vary from country to country. An interview with Amoena engineer Helmut Wild.
TAKE US WITH YOU!
24 “ THE MYSTERY PERSON WHO ALWAYS GIVES ME COURAGE WHEN THINGS ARE GOING BADLY”
amoena.us/ amoena4life
Guest author Sandra Lotz explains what gave her courage during her breast cancer therapy.
You can also read Amoena4Life in digital format at amoena.us — anytime, anywhere. At home or on the go, on your PC, tablet or smartphone.
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G N I T A B M O C S U T U T K PIN R E C N A C T S BRE A
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The Carey Foundation is a charitable organization for women who are diagnosed with breast cancer. Self-portraits of a man in a pink tutu are its symbol. The story behind “The Tutu Project” is both unusual and remarkable. By Iris Hilgemeier
fear he felt about his wife’s situation — and the pictures made Linda laugh and gave her strength to endure the frequent chemo sessions. Other patients, to whom Linda showed the photos on her smartphone, were also impressed (and amused).
In a photo there’s a man in his mid-40s, short brown hair, somewhat chubby, alone on a rock and looking into the distance. In front of him is New York’s Brooklyn Bridge. He’s wearing a pink tutu — and nothing else. In another picture he’s wandering through the columns of Museum Island in Berlin in his pink tulle skirt. The man in the tutu is American photographer Bob Carey. His self-portraits were originally a form of therapy. “When life is hard,” says Bob, “I take photos.” And his life became difficult when his wife Linda contracted breast cancer in 2003. She survived the chemotherapy, the tumors receded, and her pain was greatly relieved. But three years later metastases developed, this time in her liver. Taking these photos helped Bob overcome the pain and
Photos: Bob Carey
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THE PROJECT BECAME A CHARITABLE FOUNDATION When Linda experienced a relapse (and, thankfully, recovered), the couple decided to put Bob’s photos together as a book. The response was overwhelming. So in 2010, Bob and Linda founded the Carey Foundation, a charitable organization for people with breast cancer. The tutu pictures are their defining symbol.
At first, Bob Carey chose places at random to take his self-portraits. Now he travels the world for The Tutu Project and has photographed himself in his pink skirt in 170 locations. With the hashtag #Dare2Tutu, Bob and Linda call on people throughout the world — from individuals to school classes and companies — to put on a tutu during breast cancer awareness month in October — and to pose for the camera. Seeing the resulting photos via social media, people are encouraged to donate to the foundation, which supports affected women and their families. thetutuproject.com
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Photo: Bob Carey
Photo: Kate Jackson
For some time now, Bob and Linda have also been catering to men with breast cancer — this time wearing blue tutus. They also want to reach out to women with metastatic breast cancer through their pictures.
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Amoena4Life 2018, www.amoena.com | Publisher: Amoena USA Corporation | Editor: Iris Hilgemeier, polyshop GmbH, Prinzessinnenstraße 20, 10969 Berlin, Germany | Contributors: Stella Hombach, Claudia Kaltenecker, Sandra Lotz | Art Director & Design: Sandy Braun | Photography: Bob Carey, Dorothea Craven, Tobias Gratz, Kate Jackson, Kerstin Ladwig, Shutterstock, Stocksy, Jeff Von Hoene | Contact Amoena4Life, 1701 Barrett Lakes Blvd., Ste. 410, Kennesaw, GA USA 30144, 1-800-741-0078, amoenalife@amoena.com | The entire contents of this publication is copyrighted by Amoena, Kennesaw, GA, USA 2017. All rights reserved. Reproduction or use of the contents in any manner is strictly prohibited without prior written permission from the publisher. Amoena4Life magazine is published once a year and is distributed to retailers and medical facilities. No liability for unsolicited manuscripts. Amoena cannot be liable for pictorial or typographical errors. While every effort is taken to ensure the information contained in this magazine is accurate, the publisher cannot be held responsible for any use of or reliance on the accuracy of such information. Any information provided is not a substitute for professional care and should not be used for diagnosing or treating a health problem or disease. If you have, or suspect you have a health problem, you should consult your doctor. The editor reserves the right to edit or abridge letters.
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Main topic: Breast - conserving surgery
QUESTION:
Can the breast change further after breast-conserving surgery?
If women with breast cancer have a breast-conserving surgery (BCS, or lumpectomy), it can change the appearance of the breast. Breast care nurse Gabi Knötgen explains what effects there could be, and how radiation therapy influences them. By Stella Hombach Today, approximately 70% of women with breast cancer undergo a breast-conserving surgery and then radiation. The chance of recovery is very high. But what does the breast look like after the tumor has been removed? Does it feel the same as before the operation?
German Cancer Society. “The extent of the change depends above all on how much breast tissue is removed, but also on how well the woman’s skin tolerates the radiation.” What role does the size of the tumor play in this? The significant factor is not so much the size of the tumor itself, but its size in relation to the entire breast. “If a walnut-sized piece of tissue is removed from a woman with a large bust, generally no one would notice,” explains Knötgen, “whereas for a patient with a really small breast, they would.”
Can the breast change further after breastconserving surgery? “Yes, it can,” says Gabi Knötgen, breast care nurse and board member of the Conference of Oncological Illness and Pediatric Care, a working group in the
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reaction to the treatment.” After radiation therapy is completed, the long term effect often makes the skin feel thicker and may make it slightly darker in color (like a suntan). The degree of pigmentation change depends not only on the duration and intensity of the radiation, but also on the skin type and its sensitivity to radiation.
To avoid asymmetry, surgeons try to shape the healthy fatty tissue in such a way that the resulting “gap” is closed over. “If indentations are left behind, women can use balancing products,” advises Knötgen. The location of the tumor is also important. For example, if the tumor is close to the nipple, the nipple can warp or even “wander.” In very rare instances, the nipple must also be removed during BCS. “If that’s the case, the patient can have a nipple tattooed on,” says the breast care nurse. Downside: Loss of sensitive nerve endings goes hand in hand with the loss of the nipple. (A less invasive option is to use an adhesive silicone nipple.)
Some patients can also develop swelling from the radiation. The swelling can be caused by inflammation of the skin, such as what can happen from sunburn, or it can be caused by lymphedema of the lymph nodes that are inside of the breast. “This causes local inflammation, and the breast appears slightly swollen,” explains the breast care nurse. After all of the radiation therapy is completed, the swelling usually recedes without the need for treatment, though it can take several months. If the swelling, however, is due to the development of lymphedema of the breast, a referral to a certified lymphedema therapist is necessary.
HOW DOES BODY WEIGHT AFFECT BREAST SYMMETRY? Weight gain and loss also affect the breasts — not only the “healthy” one, but also the one that’s been operated on. For women who’ve chosen a balancing product like a partial shaper, it may no longer have the desired effect if she gains or loses a significant amount; she may need to be fitted again with a different size.
One delayed effect on the radiated breast, though rare, is the development of a hardened area of breast tissue, called fibrosis. It may occur if there are limited blood vessels working properly due to the extent of the surgery that was performed. The radiated tissue can have difficulty healing due to this blood vessel damage. If it causes pain, this should be discussed with your doctor. Does the breast that’s been operated on age normally along with the rest of the body?
Photo: CACTUS Blai Baules /Stocksy | Kerstin Ladwig UEK Aurich
What do the scars on an operated breast look like?
“Yes,” says Knötgen. Over the years, the tissue of the breast that has been operated on also slackens, and the connective tissue loses elasticity. In terms of “age,” both breasts age at the same rate.
That also depends on the size of the tumor being removed. “In the majority of cases, only small scars are left behind,” says Knötgen. This is because breast cancer is being detected earlier and earlier. However, during the healing process, scars can warp. “In such an event, a scar can later be reopened and cosmetically enhanced,” says Knötgen.
ABOUT
The true appearance of the breast and scars can only fully be determined a good six months after BCS. “At that point the tissue will likely have recovered from the radiation therapy,” explains Knötgen. “Only then has the recovery process been completed.”
Gabi Knötgen is a board member of the Conference of Oncological Illness and Pediatric Care, a working group in the German Cancer Society, and works as a nurse for cancer care in the Gynecological Oncology unit of the Clinic Ubbo-Emmius-Klinik in Aurich. From 2007 to 2009, she undertook and successfully completed advanced training as a breast care nurse in Bremen.
What effect does radiation therapy have on the breast? The most common side effect is a reddening of the irradiated skin, which feels like a light sunburn. “A woman who has a somewhat lighter complexion and red hair,” says Knötgen, “usually has a stronger 11
Main topic: Breast - conserving surgery
Often Unaware: Lumpectomy, Radiation & Partial Shapers Today, in most countries, approximately 70% of women with breast cancer have breast-conserving surgeries — afterwards, many of them will wear a partial prosthesis or balancing shaper. Why? We asked practitioners in Sweden, Germany and the U.S. who specialize in bra fittings for women with breast cancer.
Are balancing shapers and breast prostheses only for women who have had a mastectomy? No. In fact, women who have had a lumpectomy, also known as breast-conserving surgery (BCS), are entitled to a (partial) prosthesis. The same sometimes applies to women who naturally have different size breasts and struggle with asymmetry. Sometimes a woman seeks advice on this from a medical supply shop. But what particular challenges does she face? And does she actually know that she’s entitled to a breast balancing product? We asked three experts from three different countries.
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Main topic: Breast - conserving surgery Angela von Bülow, 64, Breast Care Team Leader and Lymph Specialist, Sanitätshaus Stolle in Hamburg, Germany
of the breast tissue, creating the need for a partial prosthesis. My experience in the last few years is that women know very little about partial breast shapers. Some of our BCS patients are advised by their doctors that they are entitled to these products — others find out by word of mouth from friends, family or women who are in a similar situation.
I used to work in anesthesia as a nurse. About 20 years ago, I retrained to be a [breast] health professional and was very inspired by all of the helpful products — in the clinic I had only come into contact with things like prosthetics very rarely. At that time, mastectomy was absolutely the norm; breast-conserving operations were very rare. One problem that I often encounter in my work with BCS patients is the lack of information: With women who have a small tumor, the difference in size after their lumpectomy is often very small. As such, they are often not informed about the use of partial prostheses, because everyone is aware that breasts sometimes naturally differ in size.
That’s why we provide information on this topic in an informative brochure, which we distribute to local medical practices and cancer centers.
At the end of the day, it’s about their body, and feeling comfortable in their own skin.
BCS patients see it differently; after all, their operated breast is not naturally smaller — it’s smaller because she was ill. Many feel uncomfortable with that asymmetry. Partial prostheses can help them go about their daily lives with ease. In my experience, women who have had breast-conserving surgery are often even more particular about their fittings than those who’ve had a mastectomy. But I think this is a good thing. At the end of the day, it’s about their body, and feeling comfortable in their own skin.
Ingrid Sandén, 58, breast care nurse at Skåne Hospital in Malmö, Sweden About one in ten patients who come to the breast center in our hospital are fitted with partial prostheses. More than 80% of breast cancer operations in southern Sweden conserve the breast — this is of course also due to the great work of the surgeons. Because women usually undergo radiation after a breast-conserving operation, the breast often remains swollen for an extended period. During this time, balancing prostheses are not yet necessary.
Photos: Used with permission | Amoena
Sherry Kendrick, 44, certified mastectomy fitter for A Woman’s Place at Tallahassee Memorial Health Care Hospital in Florida The majority of my clients who wear balancing partials — that is, about 20% of my clients — have either had breast-conserving surgery or a mastectomy with subsequent breast reconstruction. Many of them find, after reconstruction, that their breasts are different sizes and that they need some help with the asymmetry. Breast implants also lack the curvature of a natural breast. Silicone implants are rather flat at the front and as a result, the breast often doesn’t sit correctly in the bra cup. In addition, radiation treatment can lead to shrinkage
In some cases, the size difference is only visible after a year or more, or when the patient has either gained or lost weight. Personally, I don’t find fitting a partial prosthesis more difficult than fitting a full one. I simply try out different shapes and sizes with the women, until we find the right fit. 13
Main topic: Breast - conserving surgery
The surgical techniques change the requirements Helmut Wild is responsible for the development of breast prostheses at Amoena. In a recent interview, he explains how wearers’ needs differ worldwide and why he initially misjudged the potential of an adhesive breast prosthesis. By Stella Hombach Are the same types of prostheses used today as they were 30 years ago?
Editor: You have been developing breast prostheses for over 30 years. How has the market changed over the decades?
No, and that‘s mainly because of the new surgical methods. Years ago when diagnostics, surgical techniques, and follow-up were not as advanced as they are today, the affected breasts often had their large pectoral muscles removed, as well as numerous lymph nodes from the armpit.
Helmut Wild: Product development is primarily geared to the needs of breast-operated women — and they vary greatly from country to country. In the U.S., women typically prefer the feel of a weight-reduced breast prosthesis and “the lighter, the better.” In Germany however, this development began later. Spaniards and Italians, on the other hand, tend to wear the standard weight prostheses. In addition to country-specific habits, there are also anatomically different breast sizes.
The scars were therefore very large. Right. As well as the tissue deficit — and were very extensive, and accordingly, broad, deep areas had to be covered with the breast prostheses. Today, breast conserving surgery is performed more than mastectomy. This enormously changes the requirements for the shape and size of the prostheses — at least in the medically advanced countries such as Europe or North America.
Can you give an example? Generally speaking, British and Australian women have on average rather large breasts, Asians tend to be smaller, while in Europe, German women are somewhere in the middle, but with a larger underbust circumference.
In countries like Russia or China is this different?
The cost for a breast prosthesis is not reimbursed in every country 14
Photos: Tobias Gratz
The medical care there is not comparable with that in Central Europe. Breast cancer patients in Russia and China often are not given the option to have radiation or chemotherapy. Mostly just the diseased breast is removed. The aesthetic result is not considered important, only survival counts.
Main topic: Breast - conserving surgery What about prostheses?
the
reimbursement
of
breast
Very different. In developed Western countries, the cost of the prostheses is usually reimbursed. Elsewhere, women usually have to pay for this care themselves. Breast prostheses tend to be considered a cosmetic product in those countries and are not a medical necessity. Often in many African countries, only women who are financially well-off can afford a breast-balancing treatment. Fortunately, breast cancer is relatively rare in Asia. In Japan, one in 30 women develops breast cancer whereas in the U.S. it’s one in eight.
“Silicone adapts naturally to the body”
What do you mean? If a woman wears her prosthesis in a pocketed bra, she only has to insert it in the morning. An adhesive breast prosthesis requires a bit more effort because it is attached to the skin, which means it must be cleaned before application. This extra step means some women shy away from choosing the Contact breast form. However, those who try it get used to it relatively quickly and then become real fans or even ambassadors for the Contact. For them, cleaning the prosthesis is simply part of everyday life—like showering and brushing your teeth.
At the beginning of our conversation you mentioned the different breast sizes. Is it more demanding to make large prostheses? The manufacturing process is the same. The difficulty lies rather in matching the breast prosthesis and the pocketed bra. For an A, B or C cup this is usually not a problem. The care of women with larger breasts is actually a bit more complicated. But Amoena has good solutions, both for breast prostheses and pocketed bras. Our textile designers pay close attention to large sizes throughout the course of the development process.
The orthopedic technician and artist Sophia de Oliveira Barata designs arm and leg prostheses that are decorated with flower ornaments or rhinestones. Can you imagine something similar with breast prostheses?
You know the requirements of women on breast prostheses quite well. Nevertheless, have you ever been surprised by the reaction of the customers to a new development?
Maybe in the U.S. — where women tend to be more expressive and open about their surgeries. As a rule, women don’t require any special decoration from us. But who knows; never say never.
When we developed an adhesive prosthesis in the late 1990s, we expected a huge demand. Unlike standard prostheses, this particular breast form was developed so that women could wear it without the aid of a pocketed bra, by applying it directly to the skin. The material of the Contact breast form ensures that it adheres to the chest wall, thereby simulating the movement of a natural breast.
Since Amoena Contact attaches directly to a woman‘s body with adhesive technology,
That sounds really good.
it provides a closeness that feels much
We thought so too — and the theory was right. In fact, many women do find the Contact breast form a huge benefit and subsequently don’t want to wear anything else. Others, however, would rather not have to tend to their breast form quite so much after surgery.
like her natural breast. 2018 marks the 20th anniversary of Contact breast forms, offering women the ultimate in security and freedom. 15
Cancer Cells Can’t Really be “Starved” Out Sugar allows some cancer cells to grow more quickly — according to certain studies at least. Some doctors therefore advise their patients to eliminate foods and drinks that contain sugar from their diets. But is it really beneficial? By Iris Hilgemeier
which they then burn to produce energy. However, in cancer cells the function of the mitochondria often appears to be disrupted. Fats, as well as many proteins, are useless to them.
In April 2016, doctors diagnosed Mathilda Berger* with breast cancer — more specifically, a “left invasive-ductal carcinoma with at least two tumor centers,” as the 39-year-old writes in her Germanlanguage blog, “Living with Breast Cancer.” It was a shock for Berger. But instead of dwelling on the question of “Why?” for a long time, she started to research: Berger wanted to know what she could do to positively influence her breast cancer.
“CANCER CELLS ARE DEPENDENT ON SUGAR”
It has been known for a long time in the world of medicine that tumor cells react to sugar. Perhaps the dependence of cancer cells on glucose (sugar) is related to mitochondria; with their help, healthy cells absorb fats, proteins and sugar from food,
Which is why Berger asked herself: Would it be best for me to cut sweet food and drinks out of my diet? The aim of one such diet — the ketogenic diet — is so-called “ketosis:” Long-term deprivation 16
Illustration: Shutterstock
She came across a report online, of a 2013 experiment by Harvard scientist Lewis Cantley. With his team, he was able to prove that breast cancer cells stop growing when they are deprived of sugar — at least in the petri dish.
Cancer cells don’t burn the sugar, but ferment it instead. This results in lactic acid, which makes it easier for them to penetrate the surrounding tissue. What’s more, the activity of the immune cells is inhibited. “Cancer cells are dependent on sugar,” concludes Cantley in an interview with the ARD broadcasting service in Germany. “Without it they die.”
of sugar should bring about a change to the body’s metabolism. From then on, the cells should only gain their energy from fats and proteins, instead of sugar. The result: The tumor “starves” — at least in theory. But dietitians at the Tumor Center in Munich (Tumorzentrums München, or TZM) are not convinced by this approach. So far, there isn’t sufficient proof of the positive effects of the ketogenic diet, according to the TZM. Shutting down human cell cultures is “dubious” in their view. As such, the ketogenic diet is not to be recommended to people with cancer. Professor Jutta Hübner, scientist and member of the Cancer Prevention Center workgroup of the German Cancer Society, agrees: “At this point in time there is no scientific study that proves such a diet can prevent or reduce the growth and metastasis of tumors in people. (Editor’s note: this refers to the use of a low-carbohydrate or ketogenic diet.) From Hübner’s point of view, the theory is fundamentally questionable: “In fact, cancer patients shouldn’t allow their blood sugar level to sink too low — only as low as that of people in good health.”
SUGAR — IT’S ALL ABOUT THE MOLECULES Carbohydrates (saccharides) are important energy sources for our bodies, and they consist of sugar. Depending on how many molecules they contain, we can distinguish three different types of carbohydrates: 1. Simple carbohydrates (monosaccharides) are directly absorbed by the blood and increase the blood sugar level quickly. They consist of a single sugar molecule. 2. Double sugars (disaccharides) are converted into simple sugars in the gastrointestinal tract relatively quickly. Disaccharides consist of two simple-sugar molecules. 3. Complex carbohydrates (polysaccharides) are also broken down into simple sugars. However, our body takes time to do so. The reason: They consist of at least 10 to several thousand simple-sugar molecules. As a result, complex carbohydrates only increase our blood sugar level slowly, and are therefore a healthier choice.
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Why is that? “If the body doesn’t receive carbohydrates for a long period, it produces glucagon and other stress hormones,” explains the researcher. “This initiates the regeneration of sugar, especially in the liver.” Therefore, even when fasting, the body is never completely free of sugar.
That’s how Mathilda Berger sees it. Inspired by her research and on the recommendation of her doctors, she adjusted her diet before her chemotherapy started — also to avoid (severe) nausea during treatment. She gave up food with added sugar and removed fast-acting carbohydrates, such as pasta and chocolate, from her meal plan. Her nutrition therefore conformed somewhat to the ketogenic diet.
Hübner points out another fact as well: “If you deprive cancer cells of sugar,” she explains, “many cancer cells actually change their metabolism and grow more slowly.” However, over time they learn to metabolize proteins and fats and then grow even faster. Some cancer cells even mutate into malignant stem cells.
But only partly. Because the blogger knows: “Complex carbohydrates and fiber belong in a healthy diet.” She discussed this in detail with a dietitian at the University Hospital in Germany. Besides, Berger is a food lover. When she wants some ice cream or cake, she goes for it — and then goes for a walk or exercises, because moving our bodies also lowers blood sugar levels.
ENJOY YOUR FOOD
However, she does agree with the proponents of the ketogenic diet on one point: Rapidly available carbohydrates that cause the blood sugar level to shoot up can in fact encourage the growth of tumors. She therefore recommends that cancer patients eat a balanced diet and consume refined sugar in moderation.
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Illustration: Shutterstock
*For privacy, Mathilda’s name has been changed.
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“I LIKE MY BALD HEAD” Amelie Blume* has breast cancer — and she wants to share her experience. So we’ve been chatting with her regularly via Facebook for a few months now. Our first conversation was on August 7, 2017. The chat printed here is an extract of our second conversation, where Amelie tells us about how she’s coping with the chemotherapy so far and how her life has changed.
Stella Hombach Amelie Blume Hello Amelie
August 21, 11:29 a.m. Hello Stella
How was your weekend? My weekend was exciting. I was invited to two birthday parties on Saturday evening, so I had to try to make both. I dressed up, made myself pretty with some make-up and stuck on some fake eyelashes. I really felt great. And on Sunday I collected little Nala, my puppy. She lives with me now, and really keeps me busy. That sounds great — and Nala is a really cute name! Why did you put on fake eyelashes for the celebrations? Unfortunately, my eyelashes are gradually falling out. I still have a few left. For the day-to-day I don’t mind. But on Saturday, I wanted to look like the old me and really feel good about myself, maybe flirt a little bit ;-))
Yes, my life just feels different. Before, I was this self-confident, strong woman, who was so carefree, spoke to everyone and cracked jokes, and I was happy being that way. Now it’s as if it’s a challenge to approach people as much as I used to. In familiar surroundings it’s no problem, but when I meet new people, I feel a little insecure. That’s when I notice I’m feeling a bit thin-skinned, that I’m vulnerable. That’s why I need a mask, and the fake eyelashes.
For the “Amelie after,” I hope with all the experiences I’ve had, that I come out of this crisis stronger. I’m already working towards that with my therapist. 20
Photos: Used with permission | Tobias Gratz
I understand! When you say you wanted to look like “the old me,” what do you mean exactly? Would you say that there’s an “Amelie before breast cancer” and an “Amelie after” or “during”?
Would you also go out in public without your wig or do you need that protection? I need that protection. With the wig, no one looks at me. I’m treated normally, and can even often forget everything. Having said that, I also feel very comfortable without a wig. I like my bald head. What are your plans for the week? Apart from housetraining Nasa. I mean “Nala” — stupid autocorrect! You’re right, that’s already a really big job. This afternoon I have my weekly therapy appointment. And on Thursday I have to go back for another “cocktail party,” but I don’t want to think about that today. Just three more times. Which means that in three weeks it’ll all be behind me. Cool! Then the first part will soon be done. Yep, I’m very happy about that. It’s already a big milestone.
Are the sessions with your therapist still about coping with fear, or has the focus shifted by now?
My fears are still my main issue. But there are also other topics that arise around that, such as how I deal with my social environment, or how my social environment deals with me. In a crisis like this, you find out who your real friends are, and who was never really a friend at all. Have some friends actually turned their back on you because of your sickness? Yes, unfortunately. I call them “fair-weather friends.” I don’t need friends who are only there when things are going well. But on the other hand, I have to say that I’ve met some new people, and that other people have made an effort to get close to me, people I never would have expected it from. All in all, I see it in a positive way — the lens of my camera has a sharper focus, and I’m better able to see who does me good and who doesn’t. Amelie! Thanks a lot for chatting — and all the best with the next cocktail party. I’m looking forward to our next chat! It was a pleasure. I’ve enjoyed it as always. Give Nala a hug for me! I’ll do that. Talk soon.
*For privacy, Amelie’s name has been changed.
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BREAST CANCER THERAPY:
Easing Side Effects with Exercise The tumor has been removed, and you have made it through your breast cancer treatment. However, breast surgery and chemotherapy often have unpleasant side effects. Let’s talk about which activities can help alleviate which symptoms. This selection has been developed in collaboration with sports scientist Freerk Baumann from the Cancer Center in Cologne (CIO KÜln Bonn), Germany. By Sandy Braun
SECONDARY LYMPHEDEMA What is it? A painful swelling of connective tissue. It develops when lymph fluid clogs up in tissue and in the spaces in between tissue. Lymphedema in the arm often occurs when lymph nodes have been removed as part of a mastectomy. However, through more careful surgical procedures, the risk of lymphedema has significantly decreased. What can help? 1. Water sports such as swimming and water aerobics: Water pressure and muscle contraction put gentle pressure on the tissue and encourage the movement of lymph fluid. 2. Moderate weight training on machines, horseback riding or Nordic walking: The forward and backward movement of your arms allows the muscles to contract and encourages lymph fluid to flow.
Which physical activity will benefit you most also depends on the phase of treatment you are in at the time and how it is affecting your body. You should therefore always consult your doctor before beginning any exercise plan. 22
NEUROPATHY What is it? A malfunction of the peripheral nervous system that often occurs in breast cancer patients after chemotherapy, usually in your hands and feet. You may experience tingling and numbness in the affected areas. What can help? Vibrations that stimulate the depleted myelin layer of the nerves and promote its regeneration. 1. For feet: Vibration technology (like the Power Plate), sensory motor training (such as balance exercises on sand and standing on uneven ground), certain yoga and Pilates exercises (if your foot starts to shake when standing on one leg, for example). 2. For hands: Vibration plates, fine-motor exercises such as drumming, playing the guitar or piano, or simple activities like grasping (such as the sorting of small objects).
ARTHRALGIA What is it? Joint pain. This is often a side effect of hormone therapy in breast cancer patients. What can help? Intensive weight training that builds muscle, and/or intensive movement — such as jogging — often helps. As yet, it is not known why.
LIMITED MOBILIT Y What is it? After a mastectomy, long-term limited mobility may occur. Feelings of tension and pain then often lead to poor posture, which reduces muscle strength and results in muscular imbalance. What can help? A combination of moderate weight training and stretching exercises, often on machines or with resistance bands. As muscles are strengthened and the affected areas stretched, your mobility will increase and posture will improve.
FATIGUE
Illustration: Sandy Braun
What is it? Profound exhaustion and chronic tiredness, frequently caused by chemotherapy. What can help? Basically any type of body movement — from gardening to jogging and weight training. Good to know: When treating fatigue, the most important thing is not the type of movement, but the intensity. The rule of thumb: The greater your degree of exhaustion, the lower the intensity of your training should be.
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The mystery person who always gives me courage when things are going badly
Around the world, 1.1 million women experience breast cancer each year — and it comes as a devastating diagnosis for every one of them. Many of our readers have already gone through the illness and therapy, and perhaps even overcome it. So we wanted to find out in an essay contest: “Who (or what) gave you courage during your breast cancer therapy, when you found it really hard?” Here is our guest author Sandra Lotz’s answer.
When I thought about this question, “who or what gave me strength,” initially nothing meaningful sprang to mind. All the possible answers buzzed around my head in wild confusion — like a swarm of bees. But which answer would emerge? Which bee had really earned the distinction of “always giving me courage?”
moments, I really needed a great deal of courage to get back up and live my life. Inspiring courage is no small feat. And of course there were things and people who helped me when I was lying on the floor.
WHAT HELPED ME?
According to Wikipedia, courage is “the approach where a person confronts danger and does something, even if they are scared.” Well, I thought, the therapy itself does not exactly inspire courage. But I have to do it. I am the absolute last person who knew what to do during the acute phase of treatment. There were moments where I lay curled up on the bath mat and thought I was going to die the next day. In those
But more than anything: The internal image of myself — a happy, radiant, successful, positive woman who was at peace with herself, and would overcome THIS too. 24
Photo: Used with permission
Accepting the diagnosis and living out the emotions, nature walks, loud music, singing along, dancing, yoga, meditation, cycling, dark chocolate, family and friends, writing — and dreaming.
All of those things empowered me. During the therapy I very consciously drew on them throughout my day. Because when I’m strong, I can handle the challenges of life better. Even breast cancer.
or nature walks. Through peace and reflection from meditation. Through the therapeutic effect of writing, such as my blog. And many other things. But none of these, no matter how important the person or thing, is the winner among the swarm of bees. Nope. It’s me, and it always will be. It’s my life, and it’s my responsibility.
WHAT DID I NEED TO PULL THAT OFF? Self-reliance. Being diagnosed with cancer is a shock to the system. It’s so damn easy to wallow in self-pity. But you don’t get anywhere just feeling sorry for yourself. So saying to myself, “Get your ass in gear! Let’s go! What can serve you at this moment?” — and then actually doing it — was the right way forward for me.
BECAUSE WHAT DO YOU NEED COURAGE FOR DURING BREAST CANCER THERAPY? • For your own very personal journey on the way to recovery • For the decision to be happy in spite of the cancer and putting this decision into practice
Recognizing what serves you. Sometimes you need peace. In that case, going on a nature walk is the best thing to do. And sometimes you have to verbalize your feelings, so a chat with a trusted friend helps. It’s up to me to listen and search deep inside, to find out what I really, truly need in that moment.
• For all the additional decisions All those are things that I had to do, and continue to do, myself. I really attribute the biggest accomplishment to myself. Because I live with me — every day, every hour, every moment. Whether I laugh or cry. Whether I’m optimistic or anxious.
Try things out. New things. Other things. The same things as always, but at a different time. I assembled my own support system, piece by piece. And now it’s a part of me. Patience. A cancer diagnosis is a slap in the face. It throws your whole world into complete disarray. You rebuild your life brick by brick, nicely and neatly, one after the other. And it takes time. And there are always setbacks. To deal with that, a lot of inner peace is needed, a sort of self-love.
It’s my job to maintain a balance. To make sure that the good moments are the majority, but also that I don’t force them, and that I don’t suppress the bad ones. That is my very personal task, and mine alone. And for that I’m officially saying to myself today, THANK YOU, because I’ve done it well. I would equally like to say THANK YOU to all the people out there who’ve supported me in the last few months, because they’ve also done well — and without them I wouldn’t have been able to do it.
SO WHAT IS THE ONE TRUE ANSWER TO THE “COURAGE QUESTION?”
The original essay can be found here (in German): www.goodbyeknoetchen.de/mut-macht
Me. I am the mystery person, who has always given myself courage. I never stopped listening to myself, accepting my fears and choosing an optimistic outlook.
ABOUT | Sandra Lotz was diagnosed with breast cancer in spring 2017 at the age of 36. The illness hit her in a time of upheaval. She was heavily involved in her work as a project portfolio manager and after finishing her studies had just begun to go out on her own as a part-time life coach. The breast cancer diagnosis gave her the impetus for a new start. Since then she has been working as a life coach, trainer and author, focusing on inner strength and balance. Sandra lives near Frankfurt am Main, in Germany.
At the end of the day, dealing with the diagnosis, the therapy and rebuilding my life was my challenge. Because what I deal with on my own gives me a higher level of self-confidence. And at the same time, I could never have done it alone. That’s why I got help where I could: from my family and friends. Through movement, like yoga 25
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