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Young Survival Coalition: Some stats on young women with breast cancer

I usually check the Young Survival Coalition message boards everyday. Even though I am five years out from my cancer diagnosis, this is a place I love to go to for support and also to help other young women who are newly diagnosed.

I hope that I can be helpful in some way, maybe by answering questions or just telling the girls that I did have a positive lymph node and I'm still here with no recurrence at this time. I know that when I was first diagnosed, one of the important things to me was finding someone with the same diagnosis that was years out from chemotherapy and doing fine.

There was a poll that was done by one of the board members. I found it to be interesting. The question put out to the women on the YSC message board was -- How old were you when diagnosed with breast cancer?

Continue reading Young Survival Coalition: Some stats on young women with breast cancer

Young Survival Coalition offers educational materials

The YSC produces a variety of educational materials which provide information on breast cancer in young women and the issues relevant to this population.

Brochures:

Changing the Face of Breast Cancer: Provides an overview of the YSC and its programs and outlines how, through Action, Advocacy and Awareness, the YSC works to change the face of breast cancer and increase the quality and quantity of life for all young women affected by breast cancer. Spanish version also available.

YSC Educational Brochure -- "What Every Young Woman Needs to Know about Breast Cancer": Offers important information on young women and breast cancer including statistics and what a young woman should do if she feels a lump. This brochure is a resource for all young women and the members of the medical community who serve them. Spanish version also available.

YSC ResourceLink Brochure -- Provides an overview of YSC's ResourceLink program, which provides peer support, information and resources to young women affected by breast cancer, their family and friends and health care professionals.

Fact Sheets:

YSC Fact Sheets provide basic and important information on young women and breast cancer and highlights some of the most critical issues affecting this population. The Fact Sheets give introductions to specific issues, answer the most common questions, and provide resources for further information.

Fact Sheet Topics:

  • Hereditary Breast Cancer
  • Inflammatory Breast Cancer
  • Young Women and Breast Cancer

DVDs/Videos:

YSC DVDs/videos are appropriate for young women at any stage of diagnosis, including those who are at increased risk but who have not been diagnosed with the disease, as well as their family members and caregivers. Medical professionals will find them informative and supportive and may want to use them as a resource for your patients and colleagues as well as place them in your medical center's resource libraries.

The Beautiful 8: Learning To Live with Advanced Breast Cancer

The YSC's newest educational DVD presents an intimate discussion among eight young women diagnosed with breast cancer. Join them on this journey filled with hope, fear, laughter, anxiety and determination to live life to the fullest. To order a copy, please send your full name and address to YWABC@youngsurvival.org or call 877-YSC-1011.

Fighting for Our Future

"Fighting for Our Future" is the only comprehensive survival guide for young women diagnosed with breast cancer, doctors, and caregivers. The Lifetime Television original documentary of the same name chronicles the lives of three young women with breast cancer and how they deal with issues such as dating and sexuality; fertility and pregnancy concerns; and mortality at a young age. It also chronicles the formation of the YSC and the movement behind young women and breast cancer.

This video also has a companion book entitled Fighting For Our Future.

You Are Not Alone

The YSC's educational video is an intimate conversation with six young women diagnosed with breast cancer at a young age. The companion resource guide, published in collaboration with the New York/Bronx division of the American Cancer Society, provides support, education, and hope for young women newly diagnosed with breast cancer. Please note: a limited number of VHS tapes are available; contact info@youngsurvival.org for information.


Breast Cancer Legacy

"Breast Cancer Legacy" focuses on the role that genetics and family history play in young women affected by breast cancer. The documentary tells the story of four young women and their families while illustrating the psychological, medical, ethical and interpersonal issues these women face as they confront their family histories of cancer and make life-altering decisions about their futures.

In addition to the film, the YSC has created a fact sheet on hereditary breast cancer in conjunction with FORCE: Facing Our Risk of Cancer Empowered,a non profit organization focused on education of risk and family history of breast cancer.


Publications

Fighting for Our Future

The companion book to the film "Fighting For Our Future" is available from the YSC and in bookstores. "Fighting for Our Future" is the only comprehensive survival guide for young women diagnosed with breast cancer, doctors, and caregivers. The Lifetime Television original documentary of the same name chronicles the lives of young women with breast cancer and how they deal with issues such as dating and sexuality; fertility and pregnancy concerns; and mortality at a young age.


Young Perspective Newsletter

Our informative newsletter contains updates on how the YSC is carrying out its mission of improving the quality and quantity of life for young women affected by breast cancer through action, advocacy and awareness.

Don't choose cancer, health care provider warns women

Health care provider Dr. Anthony Vendryes wrote Monday in the Jamaica Gleaner that he is distressed at the growing number of young women developing cancer -- especially breast cancer. He believes women are not working very hard at preventing the disease. He thinks we are just waiting for the problem to surface and then treating it with "painful and often ineffective" efforts.

According to Vendryes, research indicates a woman's risk of developing breast cancer is under her own control. If we live a lifestyle that promotes cancer, we are apparently likely to get the disease. Such a lifestyle would include gaining more than 11 pounds after the age of 18, exercising less than one time per week, eating less than five servings of fruits and vegetables per day, eating more than three ounces of red meat per day, ingesting too much fat and salt, consuming more than one alcoholic drink per day, and smoking cigarettes.

I am all for healthy living. And I believe achieving good health is under our control. I would personally recommend every woman take charge of her life in a healthful manner. But I do not believe as Vendryes states, "most women actually give themselves cancer by making poor choices in life." I think it's the word most that bothers me.

Obviously, there is a connection between lifestyle choices and chronic disease. And of course our level of health is under our control -- to some extent. But I don't believe it's fair to claim most women ask for breast cancer. I know I didn't.

I did not choose cancer. It chose me. Vendryes might say I am one of the disillusioned people who think cancer is entirely a matter of chance or entirely a matter of genetics. Actually, I suspect it's a combination of all factors. All I know for sure, however, is that my own lifestyle choices were pretty darn healthy prior to my diagnosis.

My weight has always been in a normal range -- and while I did gain more than 11 pounds twice in my life, it was due both times to the more-than-ten-pound babies I delivered into the world. I have always eaten a fairly healthy diet. I consume sweets, salt, and fats in moderation. I have never smoked and have consumed alcohol only minimally. And I have always consistently exercised.

I admit I have eaten red meat, although never daily. And I'm sure I fall short on the recommended intake of fruits and vegetables. But really, I cannot even begin to imagine that my lifestyle was an invitation for cancer. And it makes me sad that most other young women, shocked by a diagnosis of breast cancer like me, might think they asked for such a horrible disease.

It's been two years since my breast cancer diagnosis and subsequent "painful and often ineffective" treatments. And although I have made some lifestyle changes -- I never drink alcohol now, I exercise a little more, and I don't choose to eat red meat if other options are available -- my life is much the same as it was prior to cancer. And I am certain that if cancer makes a return visit to my body, it will not be because I asked for it.

Check out my breasts

Checkoutmybreasts.com is a webpage that shows how to do a self breast exam. It shows a woman examining her breasts so other women can learn what to look for when performing a breast exam on herself. I was shocked a bit when I saw this website, as I have not seen anything like it before. The website also tells about an organization called Rethink Breast Cancer.

Rethink Breast Cancer is an organization that was established to help young people who are concerned about and effected by breast cancer through innovative breast cancer education, research and support programs. They do this by educating young women about the importance of breast health awareness, providing a community for young people to make a difference in the fight for the cause, raising funds to advance breast cancer research and raising awareness about the unique needs of young women who are battling breast cancer.

Rethink Breast Cancer fills a unique niche in the world of breast cancer organizations in Canada by hosting dynamic fashion, music and fitness events to attract the attention of people under 40, spreading the important messages of breast cancer to a new audience.

(Thanks to Deb Kirkland for the tip)

Naked Rugby players breast cancer and ill-gotten gains

In the land down under tongues are wagging over the new Naked Rugby League calendar being sold to raise money for breast cancer charity. Seems the boys are baring it all and one of the players left little to the imagination in the position of hand to -- well -- private parts.

The NRL has gone very public over the fact they do not want to be associated with the nude shenanigans of players Johnathan Thurston, Justin Hodges, Paul Whatuira, Brent Webb, Ben Ross, Amos Roberts, Ashley Harrison, Riley Brown, Stuart Webb, Greg Bird, Michael Witt, Liam Fulton and Nick Youngquest.

Although all the players are nude, Youngquest has stirred the pot and is taking most of the heat, as he draped his hand in such a way as to reveal more than some consider good taste in nudity. The calendar's photographer Pedro Virgil insists the shots are provocative but tastefully done.

The Naked Rugby League calendar went on sale yesterday. The spokeswoman for the breast cancer foundation that the calendar will benefit has said they had nothing to do with the making of the calendar. I visited the online store, where many pink products are featured, and the Naked Rugby League calendar is not one of the featured items. If the charity does include the calendar in its online store, I will retract and update that last observation. In my opinion, seems they could have come out a wee bit stronger in their support for the calendar if they are the primary -- and only -- benefactors.

This story almost reminds me of another story earlier this year, when a woman died from breast cancer and her coworkers got together to honor her memory by raising money for breast cancer charity. Because they worked as exotic dancers, the first year they held a fundraiser they could not find a breast cancer charity who would accept the donation unless the dancers agreed to donate anonymously. The women had enough self-respect to decline the conditions for donation. The second year, a national breast cancer organization told the dancers they would proudly accept the donation from the fundraiser, and publicly announce affiliation with this group of women wanting to help with breast cancer research.

Hungry To Be Heard: older hospitalized patients going hungry

Some campaigns just make me sad. UK's Age Concern, a charity that works to promote the health and welfare of older citizens, has launched a campaign called Hungry To Be Heard because it seems nine of of ten nurses do not have time to make sure elderly patients are getting enough to eat during their stay in the hospital. As a result, over half of the elderly patients are at risk for malnutrition. As hospital patients, if the elderly are malnourished, they simply are not going to recover or heal as quickly; they are at greater risk for post-surgical complications and they suffer a higher rate of death.

Continue reading Hungry To Be Heard: older hospitalized patients going hungry

Hydroquinone: skin bleaching product proposed ban

Yesterday, the Food and Drug Administration (FDA) proposed a ban on over-the-counter (OTC) sales of skin-lightening products containing hydroquinone. Hydroquinone is found in skin bleaching products used primarily for lightening age spots, skin discoloration from years of excess tanning or dark under-eye circles. Research has indicated a possible link to increased cancers.

In the US, there are over 65 companies selling more than 200 skin-bleaching products that contain hydroquinone. Hydroquinone has been banned in Japan, the European Union and Australia. The FDA now wants all OTC and prescription skin-lightening products containing hydroquinone to be classified as new drugs and companies making the skin-bleaching products would need to seek FDA approval to sell them. Likely, the products would stop being available as an OTC product. The proposed ban means that the FDA will take public comments until the end of this year before making any final action.

Fighting for Our Future: Young women and breast cancer

Fighting for Our Future:How Young Women Find Strength, Hope, and Courage While Taking Control of Breast Cancer. Beth Murphy spent two years studing young women with breast cancer and her book gives young women a valuable resource.

Fighting for Our Future talks about many issues related specifically to women under forty diagnosed with breast cancer. Some of this issues are fertility, pregnancy, negotiating treatment, living with the illness, sexuality and dating. It reaches out to the newly diagnosed and those living with metastatic disease to all in between.

Breast Cancer patients tell their own stories throughout sections of the book. They decribe treatment and procedures and give the real information that the young women need to know.

Insurance companies test implant ID chip for chronic disease patients

Horizon Blue Cross and Blue Shield of New Jersey announced plans to launch a test program where they will be implanting an ID microchip in people who suffer from chronic diseases. The radio frequency identification device (RFID) microchip will include family contact information and medical history. The purpose is to give emergency room medical staff the ability to access a patient's information if they are brought to the emergency room and are unable to speak on their own.

According to the test program team, Horizon will start sending letters to patients with chronic diseases explaining the new program and inviting them to participate. The program will be cost-free and voluntary for those who wish to participate.

RFID implanted microchips in surgical sponges is one thing -- in people? I don't know.

I am taking an informal poll. Would you consent to having a microchip implanted in your right arm for the purpose of information retrieval?

Port saves veins, eases discomfort of chemotherapy

This is my port. It looks to me like a bottle cap sewn under the skin on my chest. My son Joey -- he is five years old --  calls it my stone and his brother Danny -- he just turned three -- at one time thought everyone must have this same boo-boo. He would look for it, feel for it, hunt for it. But mine is the only port he could actually locate and now that he's getting older, he is not so concerned with it anymore.

My concern about the port is that everyone who needs chemotherapy should have one. It's the alternative to receiving IV sticks in the arms and hands and except for one quick stick that can sting -- I use a 5% lidocaine numbing cream prior to my infusion and with this miracle lotion, I don't feel a thing -- it is quick and painless. My port is a one-stop shop. Once accessed, blood can be drawn, drugs and fluids can be infused, shots can be injected, and at the end of treatment, an injection of blood thinner keeps the line clear and clean. The line attached to the port underneath my skin travels into large veins in a direct and efficient manner. While hospitalized for chemo-induced fever and low blood counts, I received antibiotics and a blood transfusion through this method. There was one stick when I was admitted and for my five-day stay, I never had to be poked again.

My port, called Infuse-a-Port®, was implanted during a minor outpatient surgery with use of a local anesthesia and it was ready for use immediately after the procedure.

My port has been used for 16 months now and will no longer be necessary at the end of July -- this is when the last drops of Herceptin will sail through my veins. Then I get to decide whether to keep my port or have it removed. It can stay for many years as long as it is flushed once each month. The superstitious part of me thinks I should keep it for future use -- if necessary -- and the rational part of me thinks I need to get rid of this bottle cap because I may never need it again. Regardless, I love my port. It has eased the discomfort of chemotherapy and for that, I am grateful.

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