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Tuesday, January 21, 2014
10 Myths About Breast Cancer Survivorship
MYTH: Eating soy products after having hormone receptor positive breast cancer increases my chance of a recurrence.
FACT: Research on soy has been conflicting over the years. It has the capacity to mimic as well as block certain estrogens. Overall, natural dietary soy in the form of soy milk, soy bean sprouts, tofu or tempeh appears to be safe and may provide significant health benefits when it replaces animal sources of milk and protein. However, soy in concentrated forms such as pills, powders and supplements has the strongest potential for estrogenic activity and probably should be avoided by anyone who has been diagnosed with hormonal receptive breast cancer.
MYTH: If I tested positive for the BRCA1 or BRCA2 gene mutation, I must have a bilateral mastectomy.
FACT: Women with a BRCA mutation do have an increased risk of having a second breast cancer and many do choose to have bilateral mastectomies as a preventive measure. However having a BRCA mutation does NOT mean that you have to get a mastectomy. Women with a BRCA mutation are still good candidates for breast-conserving therapy and many choose this for their breast cancer treatment. Women with a BRCA mutation and any residual breast tissue need to be followed closely and are advised to have enhanced breast cancer screenings.
MYTH: My deodorant contributed to my getting breast cancer.
FACT: This is completely false! No evidence has ever been shown to prove this.
MYTH: If I’ve had a mastectomy, I cannot have a breast cancer recurrence.
FACT: Undergoing a bilateral mastectomy drastically reduces your chances of breast cancer recurrence since almost all of your breast tissue has been removed. There is a very small chance that residual breast tissue or cancer cells could recur on the chest wall. That is why it is important to continue with self-breast exams; see your doctor on a regular basis for examinations; and report any breast changes to your doctor.
If you have undergone a lateral (one-sided) mastectomy, you are still at risk for developing breast cancer on the other side. A yearly mammogram of the remaining breast is important to detect any potential breast changes. In general, no form of breast imaging will be recommended after a bilateral mastectomy—with or without reconstruction.
Note: Having a mastectomy or bilateral mastectomy does not reduce your risk of developing a cancer recurrence elsewhere in your body.
MYTH: Eventually, I will be able to stop my mammograms.
FACT: After a breast cancer diagnosis, yearly mammograms are still strongly suggested for the rest of your life unless you have had a bilateral mastectomy.
MYTH: I should eat an organic diet to reduce my chances of a recurrence.
FACT: Consuming a balanced diet full of fresh fruits and vegetables is always helpful to improving and maintaining your overall health. Whenever possible, it’s a good idea to eat organic fruits, vegetables and meats to limit your exposure to pesticides and hormones added to meats. However, there is no scientifically proven link between the consumption of non-organic foods and an increased risk of breast cancer.
MYTH: I had breast cancer in the past so I should not become pregnant.
FACT:Pregnancy after early-stage breast cancer has not been shown to impact breast cancer recurrence or survival. It is often recommended that you wait for some time after completing all cancer treatments (including endocrine therapies) before trying to get pregnant since your body has been through so much. There is no magic formula of when the best time to get pregnant is after you complete treatment. You should work with your doctor to make decisions that are best for you and your family. For more information, visit www.fertilehope.org or www.myoncofertility.org.
MYTH: Since my menstrual periods have not begun again and I am taking tamoxifen, I cannot get pregnant.
FACT: Even if your periods have not returned or they are irregular, tamoxifen does not protect you from getting pregnant. In fact, tamoxifen was originally developed as a fertility drug. Tamoxifen has the potential to harm the fetus. While taking this drug, you should be very careful not to become pregnant by using a non-hormonal form of birth control every time you have sexual intercourse.More about fertility and breast cancer treatment.
MYTH: I should avoid weightlifting activities if I have lymphedema.
FACT: A 2006 research study found women who engaged in moderate weightlifting activities were no more likely to suffer from lymphedema when compared to women who did not do any weightlifting activities. Keeping your body strong through regular physical activity (including strength building) is also a great way to reduce your chance of having a breast cancer recurrence.
According to the National Lymphedema Network, the following things can be done to reduce your chances of developing lymphedema:
Keep your arm clean and dry
Do not cut nail cuticles
Protect exposed skin with sunscreen and insect repellent
Use care with razors to avoid nicks and skin irritation
Minimize blood tests, shots and blood pressure cuffs on the arm where surgery took place. Wear gloves while doing activities that may cause skin injury (e.g., washing dishes, gardening, working with tools, using chemicals such as detergent)
Gradually build up the duration and intensity of any activity or exercise. New evidence suggests that moderate supervised weightlifting may reduce risk of lymphedema
Maintain a healthy weight
If you have been previously diagnosed with lymphedema, consider wearing a compression sleeve when flying in an airplane and wear loose fitting jewelry and clothing
MYTH: Bone pain in my hips and knees must mean that my breast cancer has spread.
FACT: Thinking your cancer has spread is a very scary thing for many patients. The reality is that a very common side effect of aromatase inhibitors is bone pain and joint stiffness. This can be gradual over a few years or begin shortly after you start taking this drug. If the bone pain continues, gets worse, or interferes with your quality of life, speak to your oncologist.
Having cancer is hard and it is hard to keep up. With cancer treatments and care plans, everyday things like cooking and cleaning can fall through the cracks. Often times people will not ask for help, but you can help by offering to do specific things like taking over chores, offering a ride to treatment on a specific day, bringing them pre-cooked meals, putting together care packages, and other specific offers that they can't refuse. If you can't think of what will be helpful, here are suggestions from WhatNexters themselves who have been shown acts of kindness from family, friends, neighbors, and strangers without even being asked "What can I do for you?"
1. Take Over Everyday Chores and House Work
via magnificentcleaning.com
"The best help was my friends who came for a few hours to clean our house, do our laundry, things that my husband didn't have time to do when he got home from work. It was very important to keep the rest of the family going on with their lives as best as possible and my friends enabled that to happen. My friends were my support group. They were always there via text, FB, phone calls. I printed out and created a journal of every text and email. When I had my down moments, I read the journal and it reminded me of my wonderful network of friends and family." - IKickedIt
"My daughter who lives a 1/2 hour away works full time in a different city than either of us and who also has 3 young children, she came to my house everyday after work when I was going through treatment. She would do the simple things that I couldn't do, put out the trash, clean the litter box and feed the animals, and bring in the newspaper and mail." - liznparadise
2. Do Yard Work
via maureenshope.org
"I had people mow my yard, rake the leaves, shovel my snow, things I could not have done! There were times things were done by special "angels" because I never have known who did them!!! I live in an amazing small community that is full of loving and caring people!" - maralyn
"A little over 30 friends came to my house and did a backyard makeover, re-surfacing our deck, building three raised planter areas and installing a fire pit. How can you possibly pay that back? In return, I could only thank them." - po18guy
"My roof was getting old and started to leak when I was going through treatment. I had enough money from my tax refund for the material but not the labor. Some of the men from our church and their friends came to the house. They striped off the old roof and put on the new one." - Bonkers
3. Attend Doctor Visits or Cancer Treatments
via caregiverstress.com
"If someone would have offered to take me to followup doctor visits that would have been helpful and supportive. That request would be more for emotional support than anything else. When I was waiting for test results, was in a lot of pain, and couldn't figure out why a second person going to the doctor with me would have helped me determine if the doctor was giving me the run around, mine was." - Id_05
4. Use Your Talents to Do Something Special
via google.com
"I ask whoever has the talent to help me. One of my friends loves to garden, I asked her to do some weeding for me. Another loves to cook healthy foods, I asked her to go to the health food store for me. My neighbor drives by my oncology building and I asked her to take me to an appointment one day. Another neighbor is an animal caretaker and she picks up pet food for me when she goes to the pet store. And I will have to say, every one of them is more than happy to do these things. I just wish I could find a friend who gives massages!" - banditwalker
"The best one was my from my best friend. She came to my home and re-did my entire king size bed with new linens, comforter, shams, pillows, etc. I was in bed so much that this very special gift was so uplifting to me. I was overwhelmed by her generosity and kindness." - Nhiggins
"I think about what I know about the person and try to match my needs with their gifts and talents. One time I asked my neighbor to make her great chocolate cake because I knew that would help." -MMarie
5. Watch Kids
via lightathome.blogspot.com
"A woman who I have been friends with for about 6 months took care of my two little girls for a week when I ended up in the hospital with an infection. She has three kids of her own as well. I don't know what I would have done without her taking care of them." - Katesimsek
6. Travel to Spend Quality Time
via huffingtonpost.com
Even if you have to travel more than a few hours, people with cancer will notice that you are going out of your way to spend time with them and it will mean a lot more than you think.
"It wasn't just one person that helped a lot but my whole family spent time with me while I was in the hospital multiple times. Some would stay for a week, some for a few days, but there were only a couple of days out of a total of 8 weeks that none of them were there. They all had to travel at least 2 hours to get there, some of them 7 hours, and my sister 14 hours but they came anyway." -SherrySwett
7. Bring Dinner, Pre-Cooked Meals, or Groceries
via recipe.com
"I have appreciated when someone has brought over a dinner we could eat that day/night or freeze for later. I get around to thinking about dinner right after my ill husband says... "What's for dinner?" and then I don't have time." - YQM
8. Give Rides to Treatment
via tampabay.com
"One of the many that I experienced was the group of my co-workers who put themselves on a list to drive me - to work, from work, and to and from radiation treatments - when I was on crutches and then a cane in the middle of winter. I had no idea that I was anymore than a name and a face but it was very surprising and opened me up to more meaningful relationships with them all." - RuthAnne
9. Pet Sitting
via pressofatlanticcity.com
"It may sound silly but a friend took care of my dog to the point of sleeping with her when she experienced separation anxiety. That meant so much." - bjay
10. Run Errands
via countryliving.com
"I was not able to care for myself at home very well so when friends asked what they could do, I would ask them to drop by the grocery store for some of their hot, ready-made soup, and to come have lunch with me. That got me through one meal, and a delivery of Meals-on-Wheels through another. I also asked friends to come over and take a walk with me - first only around one block, and gradually I worked up to woodsy hikes of several miles. I have also invited friends to watch Netflix movies with me when I have been home bound. During radiation treatments, I became too tired to drive myself there, and I asked friends to drive. Just helping with normal home care helps a lot." - melanomamama
11. Visit and Keep Things as Normal as Possible
via livelaughlungs.blogspot.com
"I like when people would visit me, text me, or call me every now and then. It's nice having company when you're by yourself most of the time. Also, please talk to me about "other" things than just cancer and my treatment. After all, I am still the same person you knew prior to diagnosis and it would be nice to talk about music, movies, etc. A break from the "cancer world" is always welcome!" - Lirasgirl33
"At a time in my life where people seem to handle me with kid gloves, often not sure what to say, and often uncomfortable during conversations, I have two wonderful friends who have continued to treat me just like they always did before my diagnosis. No discomfort in my presence, no groping for the right words, just old friends having a chat. They tease me, they aggravate me, they keep me laughing, and I'm always happy after seeing or talking to either of them. I'm not sure that they understand how much it means to me to be treated normally." - stillkickin
12. Gift Box
via gazette.com
"Some ladies from our church gave me a gift box with several gifts to open, 1 per day. The day I cut my hair off because it was falling out, I told my husband I thought that was a 2-gift day. He agreed and I opened 2 of the gifts that day. I could go on and on about the kindness that was shown to me."- Cindy
13. Lotsa Helping Hands
via lotsahelpinghands.com
"My friend Anne set up a a Lotsa Helping Hands™ caregiving coordination community (www.lotsahelpinghands.com). This was a surprise and amazingly helpful tool. You basically request your needs and any information you would like to share. I added all my diagnosis, status updates, my diet request, my doctor's visit dates and treatment plan, and the list goes on....You can invite friends and have a coordinator assigned on your behalf. You do not need to repeat the same stories; people ask you what you need or how are things going and you can simply direct them to this site." - cranburymom
14. Walk, Ride, or Run for their Cause
via ymcatvidaho.org
"Close family friends of ours registered for a Breast Cancer bike ride in my honor. My daughter and I rode with them. They let us borrow a bike and equipment, which made the day such a memorable experience. I was still completing treatment and the accomplishment was a huge boost for me. It was a great day and we will ride together every year in support of breast cancer research and to celebrate being a survivor." - karenp
"My kids got a team going for Walk for Life. I had just started chemo and it was only one week before the event and we raised over $15,00.They made me very proud." - mama9
15. Help Set Up a Home Office
via webosaursexpert.com
Even if they feel like they don't know the person with cancer, co-workers can help in specific ways for example helping someone set up their home office, working overtime when they are too sick or tired, and giving up your sick days for them to have more time off.
"Some co-workers have set me up with a home office and flex time that allows me to work when I am up to it. Funny thing is I usually end up working a lot more than 40 hours since I have that office. My coworkers also covered for me with customers when I just couldn't get into a meeting." -oldgreycoach
16. Give Blood
via fm.virginia.edu
"The most touching thing was the amount of people ready and willing to give blood at a moment's notice. Several people drove hours countless times to give and others were in line with their sleeves rolled up every time there was a blood drive." - SaraThomas11
17. Take Them Shopping
via designtrend.com
"Nicest thing anyone did for me while I was on my cancer journey was when my sisters took me shopping for a wig and bought me clothes when I lost weight." - reddingfemale
18. Throw a Scarf Party
via mynothwest.com
"My husband threw me a surprise scarf party where everyone brought me a head scarf after I had shaved my head. It was very fun and meaningful." - stillkicken
19. Host a Cutathon
via nj.com
"My salon had a cutathon and gave us the profits just in time to save us financially." - JoLoaretti
20. Send Gift Baskets, Snack Packages, and Cards
via cancergifts.com
"When my mom was going through her journey, people that we didn't know would send us gift basket/snack baskets to the hospital when she was hospitalized." - Staci1219
21. Online Support Groups and Online Correspondence
via alliparkey.blogspot.com
"I have a group of online friends. We've never met, but we've chatted for years on a support group board. Over the years, this group has helped several members as they or their spouses have gone through cancer and other traumas. When they'd see I had a crazy day, they'd order dinner delivered from a local restaurant in my area. They ordered frozen meals delivered from an online website. They ordered us a load of groceries when I didn't have time to get to the store. They sent my husband a hand-knitted shawl and a hat. They sent books and games to my kids. They sent me a charm that says "Faith, Hope, Love." It's still going on to this day. We got dinner gifted to us tonight after a particularly long and greuling day. They send me emails and find funny videos to cheer me up. It's an amazing group of women. They've never met me in real life, but they are awesome and strong and caring and kind!" - danellsar
22. Laughter
via mlive.com
When spending time with someone with cancer it may be helpful to remember that laughter can alleviate stress. Along with treating them as normal as possible, remember to laugh.
"The best thing people gave me was laughter. The day after my surprised diagnosis during a "routine" surgery, my rabbi came to visit (even though it was Saturday morning, when she was supposed to be at synagogue). She sat with me, sang to me, and most important, made me laugh when I thought I'd never laugh again. Since then, I've laughed a lot. That first laugh put me back on the road of the living." - abrub
23. Listen!
via thegrieftoolbox.com
WhatNexters agree that listening is one of the most meaningful things you can do for them during their cancer journey. They need to vent, rant, or just talk about everyday things; they need to know that you are there to listen and ride out the storm with them.
"I just want people to listen to me! Sometimes, there is so much to get off your chest and you just need someone to listen. My friend, Karen, was my person to listen to me and didn't say things would be okay. She was just there to listen and to let me talk." - cllinda
By Cancerwise Blogger on November 2, 2009 8:37 AM |Comments (1)
By Bayan Raji, Staff Writer
For some cancer patients, reactions to certain medications and treatments create tingling sensations -- similar to when you sit on your foot too long -- that don't go away.
This tingling, known as neuropathy, typically begins on the palms of the hands or the soles of the feet. Eventually, it may become painful and debilitating.
About half of cancer patients who receive chemotherapy drugs experience neuropathy. In about one-eighth of patients, the pain may become chronic. Drugs may play a role
Neuropathy can be caused by radiation, surgery or chemotherapy drugs, including taxanes, platinum, Oncovin® (vincristine) and Thalomid® (thalidomide). It often is irreversible and even may worsen over time.
Common symptoms of neuropathy include: • Numbness • Tingling • Prickling • Burning, shooting or pinching pain • Cramping
Some doctors believe neuropathy is caused when the interaction between nerve endings and the surrounding tissue is affected during chemotherapy. However, no concrete evidence exists to explain the origins of the neuropathy some cancer patients experience.
"The cause may be difficult to determine because these drugs are very different from one another, and they work differently to kill the cancer cells," Dougherty says.
Trial and error may be necessary
Allen Burton, M.D.,chair of the Department of Pain Medicine, says doctors may try several methods to reduce neuropathy symptoms.
"When the symptoms are acute, and the patient is receiving, or has recently finished, chemotherapy, the oncologist may lower the dose or extend the time between doses of the drug that are suspected of causing neuropathy," Burton says. "Often, the problem drug is a component of a combination chemotherapy regimen."
Drugs used to treat severe or chronic neuropathy cases include: • Opioids (pain medications) • Anticonvulsants such as Neurontin® (gabapentin) and Lyrica® (pregabalin) • Antidepressants such as Cymbalta® (duloxetine) or Elavil (amitriptyline)
These medications, in conjunction with physical therapy, often help reduce pain and restore the patient's ability to function, Burton says. Occupational therapy may be useful if the patient's hands are affected by neuropathy.
Alternative therapies may help
In addition to medication, doctors may advise patients to try integrative medicine approaches. These may include:
Dougherty recommends patients work down the list to find therapies that work for them. The most helpful place to access information to these and other alternative therapies is a multidisciplinary pain center, he says.
"It's important to note that certain methods may work really well for some patients but make the pain worse for others," Dougherty says.
Risk isn't clear
Doctors aren't able to determine fully who is at risk for neuropathy. Dougherty says his general impression is that younger patients are more likely to experience it than older patients, but no real explanation exists.
Clinicians at M. D. Anderson are working to develop a pain level chart to better categorize the sensations of neuropathy.
In addition, researchers are conducting several clinical trials for patients with or at risk for neuropathy. Contact askMDAnderson at 1-877-632-6789 for information.
Both of his grandmas died of cancer, so when the Shawnee, Okla., boy learned he had it – even though his cancer is considered curable – the news was hard to process.
"When we told him what he had, he just broke down because he just assumed he wasn't going to make it," Trevor's mother, Zona Storie, told ABCNews.com.
Storie's mother died of pancreatic cancer and her husband's mother died of breast cancer. Even Storie's teenage children feared the worst.
"All they knew was that cancer is bad," she said. "We never even thought about it."
Trevor's cancer, rhabdomyosarcoma, is considered "one of the happy stories of childhood oncology," leading pediatric urologist Dr. John Gearhart, who has not treated Storie, told ABCNews.com. Gearhart is the chief pediatric urologist at the Johns Hopkins Children's Center, where he sees one or two cases of rhabdomyosarcoma a year.
Rhabdomyosarcoma is a cancer of the primitive muscle cells that typically affects children between 2 and 4 years old and 12 and 15 years old. It often appears around the bladder, vagina or – in Trevor's case – the prostate. Although it was often considered a death sentence in the 1960s, it can now be treated with a mix of chemotherapy and organ-sparing surgery.
"This child's outlook with modern therapy should be very good," Gearhart said.
But Storie didn't have to tell Trevor alone. A social worker at the hospital helped her.
"Once they told us, we were struggling about how we were going to tell him," Storie said. "They explained to him what they were going to do and how they were going to do it and that it was curable…it actually made a huge difference."
Many hospitals have similar help for parents and patients. At UH Rainbow Babies & Children's Hospital in Cleveland, Janna Shelby is a social worker in the oncology department. It's her job to help families break this news to their children, and she and her team often become a sort of second family throughout the patient's treatment.
Although every child's situation is different, there are a few basic principles.
"Be very honest with the child about what's happening with them," she said. "We always recommend honesty and speaking in the child's language in terms of their development level. To let them know that they're sick and that all these people surrounding them are going to work together to try to cure them to help them get better."
She said some families try to avoid using the word "cancer" but the child can cope better if that child knows what he or she is dealing with.
Trevor started chemotherapy in mid-December, and he'll undergo about 42 weeks of it in all. Trevor feels sick, has lost his hair and wonders why this is happening to him, Storie helps him through it, and he's slowly getting better.
Trevor even got to go back to school one day between treatments.
"It was pretty amazing," said Storie, who spent the day at school with Trevor. "He walked through the door and they were just overwhelmed. He was kind of like a star, they were just so happy to see him. They all wanted to talk to him at once. "
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