Men and bc. Anyone willing to help?

Binney4

Hello, all,

As some of you will already know, I'm a long-standing member here with a special interest in making sure all of us with breast cancer know how to reduce our risk of lymphedema, and how to manage it effectively if it ever develops. As part of that interest I've gotten to know the lymphedema research field and a lot of the researchers in it. One of my research heroes is Dr. Jane Armer from the University of Missouri, who like all of us is a bc veteran. Because she has lymphedema herself, she has conducted important research about lymphedema, and she now heads the American Lymphedema Framework Project, which is developing standards for lymphedema diagnosis, treatment, and long-term management.

All that just to say, one of Dr. Armer's (male) student researchers is conducting a survey to assess the effects of bc treatment (including lymphedema) on men with bc and their families. The results of this research will actually be used to improve treatment for men with bc, whose experiences are so little studied or acknowledged.

So I'm asking you, if you are a male over the age of 18 who has had breast cancer, if you would please take the time to respond to the survey. Your participation will be confidential, and you'll be helping to improve the quality of care that men with bc receive.

Here's the study details and contact information. THANKS to all who will help!

Be well!
Binney

VOLUNTEERS NEEDED
For a research study on Male Breast Cancer, Secondary Lymphedema, Patient Support, and Family Quality of Life.

Purpose of Study:
The intent of the study is to assess and begin to evaluate different aspects of Male Breast Cancer. First, what are the difficulties of self-care surrounding male breast cancer? Second, what are the difficulties of self-care surrounding male breast cancer patients who suffer from secondary lymphedema? Third, to what degree was the patient able to obtain support from others with the illness, and was the support adequate? Fourth, to what degree did the family support system change for not only the patient, but also other members of the family?

Participants must be
• Male & over the age of 18
• A current or recovering Breast Cancer patient

Participants will:
• Be sent an electronic or hard-copy nine page questionnaire, about their experiences with breast cancer, secondary lymphedema (if, applicable), their families’ quality of care, and their ability to find/receive support.
• If any clarifications in data are needed the participant will be contacted to set up a time in which a phone interview would be convenient.

All personal information is strictly confidential, and will not be attached to the study in any way. The final report will utilize pseudonyms in order to protect the privacy of the participants.

Participants will be not reimbursed for their time, but will receive a copy of the findings.

If interested, please contact us for more information at mrmpp9@mail.missouri.edu

 

lbrewer

you might contact http://www.tftptf.com/

The Few the Proud, The Forgotten.

Deirdre1

Wow it's so interesting!  When my Dad was interested in doing just this there wasn't any research around that included men or better yet focussed on men.  I'd be happy to help out as a member of the family (my father passed away from bc 10 years ago)....  let me know.. Good luck perhaps this can help other's in the family that might eventually develop cancer..  Best!