No Boobs About It, Inc., www.noboobsaboutit.org is a not for profit organization sharing information , resources and support on getting through treatment and on with life.

Using the Internet for Breast Cancer Research

InternetThe Internet gives us the ability to do our own breast cancer research, which is both a blessing and a curse.

Most of us do not know much about breast cancer until we ourselves are diagnosed with the disease. Then we go to our computers and begin searching madly for answers when we are not even sure of the questions to ask.

We look to find something, anything to make us feel better; to restore some sense of control over lives. If we are lucky, we find ourselves on a reputable site that has accurate information about breast cancer explained in a way we can understand.

Unfortunately, there are a lot of Internet sites that offer incorrect, misleading and deceptive information about breast cancer, its treatment and outcomes. Landing on these sites and taking what they say as gospel can cause confusion and anxiety.

If you or a loved one are recently diagnosed with breast cancer the American Cancer Society (www.cancer.org) and the National Cancer Institute (www.nci.nih.gov), have websites on the Internet and they are good places to begin your research. These reputable sites provide information you can trust on treatment, cancer screening programs and cancer support groups.

Once diagnosed and referred to a surgeon and a treatment facility, you can do your homework and use the Internet to find websites that will give you information about the qualifications of the surgeon and the reputation of the treatment facility.

Once in treatment, you can search the Internet to  find a support group to attend in your home community.  If you are not feeling up to being physically present in a support group, there are sites that can give you information about corresponding with other survivors via email. Some organizations offer access to telephone support groups.

What makes much of the information on the Internet questionable is that there are no quality control guidelines or restraints on the health care information or advice provided online.

What does this mean for you? Unfortunately, it may mean that the burden of sorting out who is who is up you. How do you, when just diagnosed and in a state of anxiety, differentiate between legitimate health care organizations, those individuals who have sites and want to be of help but are misinformed, and groups engaged in health fraud?

Another danger resulting from no quality control of health care information on the Internet is it can lead to a person drawing conclusions that are not accurate for her type of breast cancer.

When you choose to gather breast cancer information on the Internet err on the side of caution and :

  • Look for sites that are known breast cancer organizations or medical institutions.
  • When you get to a site, check for facts, not opinions. It’s only natural to want to find alternative treatments to the one that have been recommended for you but remember the standard treatments are standard because they have a track record of success.
  • Don’t form opinions or make decisions on your own, but review all information with a health professional. Remember that what applies to one person may not apply to you.
  • Be sure to tell your doctor if you are thinking of trying other therapies. Some alternative therapies can be dangerous.

 

Note: For more information on who’s getting breast cancer please read my article on About.com, Breast Cancer Doesn‘t Descriminate

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Cancer and My Search for Enlightenment

A Guest Post by Tina Martel

cancerWhen visual artist Tina Martel was diagnosed with Stage Two B breast cancer she decided to document everything. Throughout her treatment she created a stream of sketchbooks, photographs, paintings and video, in response to and frequently in spite of what was happening to her. Not in the Pink is a “graphic narrative” of the pain,  frustration and frequent hilarity of her day-to-day dealing with the eccentricities and bureaucracy of the medical system. It is also a candid and moving exploration of the expectations often placed on you once you are diagnosed with cancer: by the people around you, by society and ultimately by yourself.

I was diagnosed with breast cancer in the fall of 2011. Too many of us have heard those words in stunned disbelief. I sat thinking “no”… not even with an exclamation mark behind it…just a quiet little “no.” As the days unfolded and the reality started to sink in I had a glimpse of what that might look like. The surgery, the treatments, the drugs… what I was unaware of at the time were some of the deeper implications. I am a voracious reader and I did the only natural thing – I picked up all the books I could find on having cancer. I was determined to be the “good” patient. Unfortunately, at least for me, along with all of the advice offered from various experts, there was frequently a theme. It was of finding enlightenment. And it was echoed in the well-meaning advice of people around me. Apparently in between throwing up, pain and exhaustion I was supposed to use all the time I now had on my hands to find my true calling and become a much higher being.

I am an overachiever so I tried.

I tried to find it in meditation. Every day I spent as much time as my body would allow on my yoga mat. I breathed. I contorted. I relaxed. One day I thought I finally caught a glimpse of it. I had the sense of being watched over. Then I saw the shadow at the window and realized it was the neighbor’s cat. Admittedly she looked very zen. What did she know that I didn’t? She also got that look on her face after I would catch her digging in the flower bed.

I flirted briefly with the idea that I could find it in the kitchen. Some people seemed to find peace and joy in cooking. Apparently there is a kind of meditative quality to creating nutritious meals from scratch. I almost made it into the room before I came to my senses and realized I haven’t been in here for years and probably couldn’t find a pot if my life depended on it. I am not sure I own a pot. I must…

I searched for inspirational messages around me that might have some meaning. You know the ones. On the bill boards, sent to you through Facebook, pinned above customer service desks. Everything happens for a reason. Just let it go…Today is the first day of the rest of your life. Never wrestle with a pig; you just get all dirty and the pig likes it. (I kind of liked that one.) Surely one of these pithy sayings might resonate and the lights would go on. One day while having a latte accompanied by a piece of chocolate two things occurred to me. The first was my moment with that really good piece of chocolate might be as close to enlightenment as I ever come –and the second was I remembered vowing to myself a few years ago I would stop taking life advice from the sides of take out coffee cups. That’s when I bought myself a to-go mug.

I visualized white light, I visualized healing, I visualized myself right out of this predicament and onto a beach in Mexico. When I stopped visualizing I was still in the middle of it. Maybe I was simply not strong enough? Maybe I was doomed to fail?

In a vision it came to me what I needed to do was stop putting so much pressure on myself to become something better than what I am. I am not perfect but I am good enough for now.

Maybe it is not cancer patients who need to seek enlightenment but the world around us who is made so uncomfortable by the glimpse into their own mortality. Let us be ourselves. The people you knew before. Sometimes we are happy, sometimes we are sad, sometimes we are angry. Sometimes we have flashes of enlightenment.

Bio: Tina Martel is a Canadian artist and author whose practice includes mixed media, painting, drawing, books, photography, installation and video.  The recipient of numerous grants and awards, she has exhibited across Canada, the United States and in Europe.

 Not in the Pink is available through the author’s Website and Amazon: http://notinthepink.ca, 

http://www.mcnallyrobinson.com/home http://www.amazon.ca http://www.amazon.com

Not in the Pink was recently chosen as a finalist in two categories for the International Book Awards 2015. http://www.internationalbookawards.com/2015awardannouncement.html

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Medline Plus: A Reliable Resource for Breast Cancer Information

When I do my weekly research for this blog, I spend a lot of time on MedlinePlus.

It  is an excellent source of information on the latest reports and outcomes of breast cancer research and articles on new studies that are underway.

MedlinePlus is the National Institutes of Health’s Web site for patients and their families and friends. Produced by the National Library of Medicine, it gives information about many diseases, conditions, and wellness issues in language that is reader friendly. MedlinePlus information is up to date, reliable and free. It contains the latest information on breast cancer.

You can use MedlinePlus to learn about treatments, look up information on a drug or supplement, find out the meanings of medical terminology, or view medical videos or illustrations.

You can also get links to the latest medical research on your topic, and find out about clinical trials.

To visit MedlinePlus for information on breast cancer go to http://www.nlm.nih.gov/medlineplus/breastcancer.html

 

 

Dear Readers,

I am pleased to now be writing for About.com!

Writing for About.com is an opportunity for me to reach additional women and men who want to know  their breast cancer risk. It also enables me to share research and resource information to those affected by cancer.

I publish 6 times a month for About.com. I hope you will join me at breastcancer.about.com

I will continue to publish weekly on No Boobs About It.

Best,

Jean

 

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When Active Treatment Ends…

When active treatment ends your treatment journey may not be over.

Depending on the results of the path report there may still be other treatments or medication regimens that your oncologist recommends to prevent a recurrence.

If your cancer was estrogen-fed (ER positive) your oncologist will want you to take hormone therapy(orally) daily for five years as an additional treatment. It is important that you understand why you are taking this medication; how it is intended to work in your body; what you can anticipate as side effects and what actions and/or medications you can take to reduce the discomfort of any sided effects you may experience.

Since there are a few medications in the hormone therapy category, ask you doctor to explain the differences between the medications and how they work, as well as the differences in side effects. It may be helpful to see a nutritionist and discuss a diet that can help with maintaining you weight while on these medications.

Keep you doctor informed about side effects as there are medications that can and do relieve mood swings and hot flashes. Five years is a long time to suffer in silence!

While on hormone treatment, daily exercise is key to weight control and is a great attitude booster.

If you had a mastectomy and did not opt for reconstruction, be sure to get a prescription to be fitted for a prosthesis(es) from your surgeon after he or she tells you that your wound area is healed sufficiently to wear a prosthesis(es). Go to a boutique or shop that has certified fitters who can fit you with bras and prosthesis(es) that look natural and fit comfortably. Most insurance companies, Medicaid and Medicare cover the cost of both the bras and prosthesis(es).  The woman who helps you can call your insurance company on your behalf and find out just how many bras and prosthesis(es) are covered by your insurance.

When being fitted, ask about light weight, hollow prosthesis(es) which are best for swimsuits and summer wear as well as the standard weights of breast forms. Some forms are definitely heavier than others. If you will only be wearing one prosthesis, you need to make sure it looks balanced with your natural breast. Fittings following a bilateral mastectomy are sometimes easier as the prostheses are evenly weighted and tend to look immediately balanced in a bra.

If you have had a lumpectomy, you may need a partial prosthesis to have symmetry between the two breasts. It is best to be fitted for this also. Check to see if your insurance company covers a partial prosthesis.

Now that active treatment is behind you and you are trying to get back to life as you knew it before breast cancer, you may find you are having trouble doing so.

It may be a good time to join a support group. Be sure to pick one that is professionally led and focuses on getting on with life. If you have trusted friend(s), who are survivors, they can help by sharing how it was for them and what helped them adjust to life post treatment.

 

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Here Comes Summer…Watch the Sun Exposure!

sunRadiation was a part of my first go round with breast cancer. On my last day of treatment, my radiation oncologist warned against my sitting out in the sun for the first year after completing treatment. Since I am  not a summer person and avoid walking or sitting in direct sunlight, this restriction was no hardship.

Years later, as a patient navigator, I was amazed to hear so many women speak of how they were looking forward covering themselves in sun screen and resting at the beach or near a lake when they completed treatment. So..I thought it might be a good idea to share the reasons why it is best to avoid sun exposure soon after completing treatment for breast cancer.

In the Ask the Experts section of OncoLink.org, Lawrence J. Solin, MD, FACR, Professor of Radiation Oncology at the University of Pennsylvania, responded to a question from a woman who had recently completed radiation for breast cancer saying, Patients who have undergone radiation treatment for breast cancer should be careful about sun exposure in the radiated areas, especially for the first few years after treatment. Areas of skin in the radiated fields will react more easily to sun exposure than areas of non-radiated skin. Patients who have undergone chest wall radiation are even more likely to react to sun exposure.

Significant sun exposure can cause a “recall” of the radiation skin reaction, even after the acute skin reaction has resolved. If a patient is going to be outside and exposed to the sun, then the radiated skin should be covered with clothing or covered with sun block of SPF 15 or higher. Although sun protection is especially important if the patient is currently undergoing a course of radiation treatment, sun protection is also prudent for the first few years.

Dr. Maria Theodoulou responds to a patient about avoiding sun exposure following chemo in Breast Cancer.org saying, ” Many of the chemotherapy agents that we use are also radio-sensitizers, which means they can make the sun’s rays work a lot stronger than they would if one were not exposed to any chemotherapy drugs. Certainly during treatment, we always ask that the patient avoid direct exposure to the sun as much as they can to avoid burning of the skin. If it’s a summer day, it doesn’t mean you have to stay in the house or avoid the outdoors, but a sunscreen with a SPF of 30 or higher, a floppy hat in the summer, or a cover-up if walking on the beach.

The effects of chemotherapy drugs can last for 1 to 2 months after the chemotherapy has been completed. By that time, most of the drug has been used by the body and is out of the system, so it should be safe to go in the sun. Of course, if the patient is going to have radiation after the chemotherapy, the patient should also protect the radiated area as there can be a phenomenon called “radiation recall.” Not only can the affected skin burn, but skin on other parts of the body can become more sensitive as well.

One of the most important things a patient can do is not only protect themselves from the sun’s rays during treatment and at least a month afterwards, but importantly in hot weather, one also has to be careful about becoming dehydrated. It’s important to keep fluid intake optimal, making sure that not only is water being taken in, but also fluids with different salts in them too.”

If you are taking Tamoxifen or Femara or Arimidex, oncologists suggest avoiding sun exposure, wear an SPF 15 or above and protective clothing. Given the side effects of hot flashes and feeling warm all the time that most of us experience when taking these drugs, I can’t imagine wanting to sit in the hot sun while on these medications.

Some of the ways to still enjoy summer is to go out before and after the hottest part of the day; wear a big floppy hat and comfortable protective clothing.

As for me…I get a walk in in the early am and again at sunset and spend the rest of my day in air conditioning.

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