Previvors and Survivors
Hello everyone and welcome to my BRCA website for previvors ad survivors. I’m hoping that together we can create a BRCA home where we can form a sisterhood and help each other. I’m going to try my hardest to get us the most factual and current information that is out there, where we can all stay informed, and make the best decisions about our health, and try to deliver it in a simple and easy to understand way. I welcome all feedback and any recommendations! IF YOU HAVE ANY TROUBLE NAVIGATING THE SITE…JUST EMAIL ME. LOST PASSWORD? EMAIL ME! If you are a previvor or survivor, please feel free to tell your story in the forum, start a discussion, ask a question, or send me an email. If you have an event that you would like to publish, just let me know!
Please register and introduce yourself in your home state whether or not you are a previvor or survivor. If you belong to a support group–please list it for new members -also in your home state. I would like a woman or her family to be able to find support in her own community. It’s easy, just register (bottom right-under META) then after you get your password, go to the forum, click on your home state and hit-add a new topic.
Please show your support for all the women in your life - your mothers, sisters, daughters and friends.
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6/14/09
Congratulations to you all!
We’ve just had our one year anniversary on May 23rd & look how amazing the website has become! We’ve done it together!
We are international & domestic now!
We have raised lots of money for our cause & helped many people. I hope to continue to grow with your help. If any of you would like to see a special forum, just let me know. Let me know how you are doing as well!
The best part of this site is that you may remain anonymous! All you have to do is let me know you’d like to participate & I will post anonymously for you. I believe that is why this site has become so popular so fast. You don’t have to join to participate, although if I have your email address I can send you regular private updates.
The website is basically running by itself now. As new info becomes available, it will be posted. If you readers hear of anything important to share—please do!
This coming year my goal is to continue helping women & their families. When you hear of a family needing help, be there to shop, carpool, donate meals, get gift certificates for salons, entertainment, dining, etc. Let’s stay educated about nutrition, yoga, exercise…you think of it—let’s make it happen!
I would also like to start a BRCA awareness day in October to coincide with Breast Cancer awareness. I pick October 4th to mark my anniversary!
We need to involve our communities. Make people aware & sensitive to our cause. Therefore, my goal is to bring awareness…educate…& declare 10/4/09 the first BRCA awareness day.
Be well you all.
Wishing you all continued good health. Thanks for your support!
x0×0
Tobey
BRCA NEWSWORTHY
Melbourne Trial of Breast Regrowth Surgery Neopec
11/11/09 reported by: Grant McArthurfrom perthnow
There’s a STEM CELL BREAKTHRU STUDY going on in Australia to help breast
Cancer patients, BRCA patients GROW BACK THEIR OWN BREAST TISSUE.
If this study is successful it could replace implants & breast reconstructions going on today.
The procedure uses the stem cells of our own fat to regenerate the growth of new breast tissue.
Follow this link for the entire story & video: http://www.news.com.au/perthnow/story/0,21598,26338552-5017320,00.html
BRCA NEWSWORTHY
10/27/09 news release: from St. Mary’s Hospital -NJ
DVS (developed by Sicel Technologies, Inc.) stands for dose verification system & it is being used only at St. Mary’s Hospital in Passaic, NJ. It is an implantable device & approved by the FDA. It lets the doctor know how much radiation is being absorbed instead of just guessing, therefore giving the patient a more exact dose of radiation therapy to their tumor.
Please follow this link for more information:
BRCA NEWSWORTHY
Found this article: BRCA1 AND DEPLETION OF OOCYTE RESERVE
This seems to be where the info came from: American Society for Reproductive Medicine (ASRM) 65th Annual Meeting: Abstract O-103. Presented October 21, 2009.
http://cancerology.blogspot.com/2009/10/brca1-and-depletion-of-oocyte-reserve.html
Apparently researchers are studying the fact that BRCA positive women have lowered oocyte reserves & infertility issues.
These findings were presented by Dr. Oktay from the Dept. of OBGYN at the Westchester Medical Center-NY Medical College in Valhalla.
Dr. Keefe Chair of the Dept. of OBGYN at the NYU Langone Medical Center in NYC says that based on this info women who are BRCA+ should be advised that they may lose their eggs earlier than women not affected with the BRCA gene mutation.
Please place any comments here: http://previvorsandsurvivors.com/forum/general-discussion/brca-mutation-infertility/page-1/post-215/#p215
BRCA NEWSWORTHY
New Blood Test for Detecting Breast Cancer Comes Soon
reported by Cindie Leonard from Naturalnews.com
Please follow this link: http://www.naturalnews.com/z027324_cancer_brst_blood.html
Doctors & researchers are studying the risk of early breast x’ray vigilance for BRCA positive people & the risk of it causing radiation- induced breast cancer in this high risk group. Right now mammography is the standard tool that doctors use to screen for breast cancer lesions. A new blood test called BC-SERAPRO (it measures certain proteins in blood) is being developed to replace the mammography!
BRCA NEWSWORTHY
Anticancer Power of Supermarket Mushrooms by Ralph W. Moss, Ph.D
Please follow this link: http://www.cancerdecisions.com/content/view/280/2/lang,english/
According to: Dr. Shiuan Chen, director of the Division of Tumor Cell Biology at the Beckman Research Institute of the City of Hope in Duarte, California eating 100 grams or even less of mushrooms per day could prevent new breast cancers. Apparently mushroom extracts are aromatase inhibitors. Aromatase is an enzyme in our bodies that help us make estrogen. Estrogen feeds breast tumors so women with estrogen positive tumors take aromatase inhibiting drugs after their breast cancer diagnosis. It would be wonderful to see women eating mushrooms to inhibit aromatase production instead of taking anastrazole or Arimidex.
COME ON RESEARCHERS—-THIS LOOKS AWESOME!
BRCA NEWSWORTHY
As a dental hygienist, I’ve been meaning to put this article together for some time. Since it’s breast cancer awareness month—now is the time!
Your breast implants & premedication - or the necessity to take antibiotic one hour before your dental appointment:
Some Doctors feel this is necessary & some do not. Your mouth is full of bacteria (some good-some bad) & when you have dental work that causes bleeding the bacteria in your mouth travel through your blood & can cause an infection to your breast implant. ASK YOUR SURGEON IF YOU NEED TO “PREMEDICATE” BEFORE DENTAL TREATMENT!
See your dentist BEFORE chemotherapy treatment. If you need dental work during chemotherapy treatment your oncologist & your dentist need to speak prior to treatment. Chemotherapy lowers your white blood cells (which protect you against infection) & again, some dental procedures stir up bacteria which can stir an infection in your bloodstream. If your immune system is lowered because of lowered white blood cell counts your dentist needs to know! ALWAYS CHECK WITH YOUR ONCOLOGIST WHEN YOU ARE UNDER TREATMENT BEFORE YOU DO DENTAL WORK!
Sometimes chemotherapy can also cause mouth sores & inflammation. When the mouth is dry bacteria act up & can cause gum & teeth problems. It is very important to practice good oral hygiene (brush, floss, rinse) so you can keep your bacteria levels as low as possible in your mouth. Advise your dental professional if you have any problems. Sometimes a fluoride treatment or dry mouth therapy can be recommended or applied during your visit. Biotene or alcohol free mouthwashes may help.
Lastly—bisphosphonates (drugs used to fight bone loss!) All I can say about this is again…let your dental professional know if you are taking any. If you notice any changes in your mouth while taking bisphosphonates let your medical professionals know.
Be well you all!
BRCA NEWSWORTHY
Go to our forum. Click on reader recommended links. Click on awesome breast cancer breaking news & follow the link for the story & the video. Canadian reasearchers decode breast cancer tumor DNA. This story was brought to my attention through: CTV.CA News.
The researchers decoded the patient’s metastic breast cancer & found all the mutations. If they can understand the mutations that cause cancer…they can cure it!
Another article also can be found in our same forum: More news out of Canada.
This article is titled: Tiny Chip Can Measure Estrogen in Breast Tissue. This story was brought to my attention by news.yahoo.com & the writer is: Julie Steenhuyser.
It’s a microchip device that can screen or see if breast cancer treatments are working by measuring estrogen levels. This research is still in experimental stages…but it gives us all a lot of hope.
BRCA NEWSWORTHY
We have declared 10/4/09 our first BRCA AWARENESS DAY!
We have decided to educate people about BRCA PREVIVORS! Help us spread the “previvor” word! The more we educate, the more we take the stigma away…the more lives we save!
PLEASE MAKE A CHARITABLE DONATION TO A BREAST CANCER ORGANIZATION IN HONOR OF PREVIVORS&SURVIVORS!
Please show your support for all the women in your life - your mothers, sisters, daughters and friends!
DO IT NOW…DO IT TODAY!
BRCA NEWSWORTHY
Aberrant luminal progenitors as the candidate target population for basal tumor development in BRCA1 mutation carriers. By the following:
Lim E, Vaillant F, Wu D, Forrest NC, Pal B, Hart AH, Asselin-Labat ML, Gyorki DE, Ward T, Partanen A, Feleppa F, Huschtscha LI, Thorne HJ; kConFab, Fox SB, Yan M, French JD, Brown MA, Smyth GK, Visvader JE, Lindeman GJ.
The Walter and Eliza Hall Institute of Medical Research, Parkville, Victoria, Australia.
Nat Med. 2009 Aug;15(8):907-13. Epub 2009 Aug 2. PMID: 19648928 [PubMed - in process]
Follow this link please: http://www.ncbi.nlm.nih.gov/pubmed/19648928
Researchers have found that breast tissue from BRCA1 positive women have large “luminal progenitor cells.” Originally it was thought that basal like breast cancers in BRCA1 positive women originated from the mammary stem cell, now it is being suggested that these cancers are from abnormal luminal progenitor cells.
When researchers find the reasons for cell changes causing breast cancer they will be able to target therapy cures to them.