Hello everyone and welcome to my BRCA website for previvors and 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.

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 have our BRCA awareness day in October to coincide with Breast/Ovarian Cancer awareness.  We need to involve our communities. Educate & make people aware & sensitive to our cause.

Be well you all.
Wishing you all continued good health. Thanks for your support!
x0×0
Tobey

http://previvorsandsurvivors.com/forum/what-do-i-do-first/decisionsbrcabreast-or-ovarian-cancer/page-1/

So now you heard the words…you have cancer…you are BRCA positive…

Go on the internet & educate yourself as much as possible with the terms of your diagnosis. Find out the pros/cons of everything. ASK YOUR DOCTOR QUESTIONS!

Is your diagnosis:

•  
  1. Hormone receptor positive- (estrogen or progesterone or both) they have tamoxifen like drugs to block these hormones. They call this “targeted or hormone therapy.”
  2. Invasive or ductal carcinoma in situ- the cancer cells have broken out of the milk ducts. In situ means it is the earliest stage & the cells are confined.
  3. HER2 positive or negative-some breast cancers produce this proteins which spread & cause a more aggressive breast cancer- you will need more aggressive treatment.

You will need to have a consultation with a few doctors! Most important thing is to take someone along with you to the consultation. You will be receiving so much information- much of it shocking & overwhelming & you might not hear everything. It is also okay to call your doctors back & ask for more information or clarification at another time. You can ask your doctor’s to help you make appointments with other specialists also.

Ask your radiologist, medical doctors, clergy, or friends for doctor referrals. You will be surprised that time & again the same name will come up. You might want a certain hospital affiliation…you might want a one man doctor, or you might want a big cancer care facility.

You will need any or all of the following physicians- oncologist, breast surgeon, gynecological oncologist- perhaps a plastic surgeon for reconstruction…

So the day has come for your first consultation: Take all your test results with you.

Discuss the pros & cons of lumpectomy/mastectomy/radiation/chemotherapy/reconstruction options. BRCA positive people have an option of mastectomy or vigilance.

Chemotherapy is given as an insurance policy against recurrence of cancer. It is usually recommended unless your cancer diagnosis is very early stage estrogen positive breast cancer that has not spread to the lymph nodes. You can also be given a test called “Oncotype DX” which tests for a recurrence. The lower the score the more likely you don’t need chemotherapy.

Radiation therapy if needed is available in 2 forms. The newest kind is called “internal radiation therapy” where radioactive seeds are placed into the breast beside the cancer. The treatment is two times/day for 5 days. The more traditional radiation therapy is “external beam radiation” where the radiation is directed to the breast for 6 weeks/5days per week.

There is a lot of information available on the web. I also know that it can be quite confusing-that is why I started this site! On our home page are links that I trust for information—go to them—ask questions—YOU ARE NOT ALONE!

Please feel free to add any information here that you think could help someone else. Thank you.

http://previvorsandsurvivors.com/forum/what-do-i-do-first/insurance-companybills/page-1/

So you find out that you are BRCA positive or you just heard those words…you have breast cancer or ovarian cancer. You know that the medical bills will be substantial & you are worried about your coverage & out of pocket expense. What do you do? Do you want a second opinion? Will the insurance company pay? Do you even have medical insurance?

Call your insurance company & speak to a supervisor who will explain EVERYTHING to you. Take names & phone #’s & document the dates & times that you spoke with them. I personally had major problems with my insurance company. They told me one thing & then when it came time to pay they told me another story. I was fortunate that the unfortunate representative made the mistake of putting all the information in an email to me when I asked for clarification! Enlist your doctor’s office for help. I asked for the codes & cost for the procedures that I would need. I then asked my insurance company to explain how much of that they would pay & I did the math. YOU MUST GET THIS IN WRITING!  You can also ask your doctor’s office if they will help you with the out of pocket cost. Some will, some won’t!

Don’t take no for an answer! Your medical bills will be substantial—you need to know the out of pocket costs! I also had to enlist the help of the policy holder’s “human resources department.”

If it is all too much for you- ask a friend for help or an organization. I get asked for help about this issue the most- that is why I am finally putting it into writing!

There is a patient Advocate Foundation (copays.org) & Cancer Care (cancercare.org) that will also help you with financial issues.

I was also anonymously told about this link & privately assured that the application for Consumers external appeals & the Health Care Provider’s application were just about guarantees for reimbursement! If you are having trouble with your insurance company follow this link for New York.  http://ins.state/ny.us/  If you are in another state try putting in your state code where the NY code is! When you get to this site, hit the COMSUMERS link then hit the HEALTH link. Then scroll down to the EXTERNAL APPEALS link.

 BRCA NEWSWORTHY

Radiation, Risks Are Focus of Breast Screening Studies  By: Roni Caryn Rabin 8/24/10

From The New York Times.com  follow this link: http://www.nytimes.com/2010/08/24/science/24breast.html

I felt this article was too good not to share. .. Basically the most important information I got out of it was: “certain nuclear-based breast imaging exams that involve injecting radioactive material into patients expose women to far higher doses of radiation than regular mammography, increasing their risk of cancer in vulnerable organs beyond the breast, like the kidneys, bladder or ovaries.”

No one really knows how much radiation is too much, but they do know that it is cumulative. Different tests have different radiation exposure levels—PLEASE DISCUSS THE RISK/BENEFITS with your doctors.

Specifically this article makes us aware that the nuclear technologies breast specific gamma imaging (B.S.G.I.) and positive emission mammography (P.E.M.) are to be used in addition to traditional mammography & ultrasound screening if a suspicious lesion is found—-NOT FOR ROUTINE SCREENING!

My name is Sharlene Hesse‐Biber and I am a Sociologist and Professor at Boston College. I am conducting a study on women who have tested positive for the BRCA 1 and 2 genes and have stage IV breast cancer. I hope to address the issue of why women seek this genetic testing and how they respond to a positive result, as well as the roles that other people in their lives play throughout the pre‐ and post‐ testing process. I would like to set up a time to explore your experiences with genetic testing for the BRCA 1 and 2 genes. Such an

interview would take about a half hour. Your participation in this research is completely voluntary, and if you choose to participate, you may withdraw from the study at any point throughout the project. I can interview you over the phone or if you are in commuting distance I can interview you in person.

I would also like to take a moment to tell you a little more about the study. I aim to address a current lack of research on women’s experiences with genetic testing for the genes linked to breast cancer and their responses to a positive result. Some of the questions we will explore are:

• How do women seek genetic testing for breast cancer?

• What is the lived experience of women who have received a positive result? How is this affected if they have a family history of breast cancer?

• What decisions, if any, do they make once they have a positive result? Is there a difference between their immediate and long‐term decisions?

• What role do their immediate family network, close friends, and co‐workers play in their decision to get tested and in their post‐testing experience?

If you are interested in participating in this study, please email me at hesse@bc.edu. I am also happy to answer any questions or concerns you may have.

Thank you for your time and I look forward to hearing from you soon.

Sincerely,

Sharlene Hesse‐Biber

Professor, Department of Sociology, Boston College

Director, Women’s and Gender Studies Program, Boston College

BRCA NEWSWORTHY

ASCO Update: Emerging agents to change the landscape of ovarian cancer treatment

June 8, 2010 Analysis by: Jason Tse

ASCO or the American Society of Clinical Oncology has recently come out & said that they have had “encouraging” results with parp inhibitor drugs when combined with chemotherapy in the fight against breast & ovarian cancer. These drugs are Avastin, olaparib, AMG386, farletuzumab & voreloxin. Avastin is the frontrunner in these drugs & hopefully will be approved in 2011 to fight Ovarian Cancer.

Follow this link for this very interesting, promising news!

http://www.glgroup.com/News/ASCO-Update–Emerging-agents-to-change-the-landscape-of-ovarian-cancer-treatment-48853.html

Please follow this most important link:

http://www.doctoroz.com/videos/price-beauty?page=2#copy

As far as “lip gloss” goes… this is a direct quote from his show that aired 6/2/10

“What could be more harmless than a little shine on your rosy lips? Well, as it turns out, lots of things, because the shine in lip gloss comes from petroleum jelly. Petroleum jelly is a byproduct of oil drilling, and when you spread it on your lips, you end up eating it, which is essentially the same as drinking gasoline. Add up the amount of lip gloss the average woman uses (and consumes) over a decade, and it equals 7 pounds. The European Union has banned many petroleum jelly products, and experts are concerned they could be linked to cancer. Women with breast cancer have twice the levels of hydrocarbons (substances found in petroleum jelly) in their breasts than women who haven’t had breast cancer.”

My name is Sharlene Hesse-Biber and I am a Sociologist and Professor at Boston College.

I am conducting a study on women who have tested positive for the BRCA 1 and 2 genes. I hope to address the issue of why women seek this genetic testing and how they respond to a positive result, as well as the roles that other people in their lives play throughout the pre- and post- testing process.

I would like to set up a time to explore your experiences with genetic testing for the BRCA 1 and 2 genes. Such an interview would take about a half hour. Your participation in this research is completely voluntary, and if you choose to participate, you may withdraw from the study at any point throughout the project. I can interview you over the phone or if you are in commuting distance I can interview you in person.

I would also like to take a moment to tell you a little more about the study. I aim to address a current lack of research on women’s experiences with genetic testing for the genes linked to breast cancer and their responses to a positive result.  Some of the questions we will explore are:

1. How do women seek genetic testing for breast cancer?
2. What is the lived experience of women who have received a positive result? How is this affected if they have a family history of breast cancer?
3. What decisions, if any, do they make once they have a positive result? Is there a difference between their immediate and long-term decisions?
4. What role do their immediate family network, close friends, and co-workers play in their decision to get tested and in their post-testing experience?

If you are interested in participating in this study, please email me at hesse@bc.edu. I am also happy to answer any questions or concerns you may have.

Thank you for your time and I look forward to hearing from you soon.

Sincerely,

Sharlene Hesse-Biber

Professor, Department of Sociology, Boston College

Director, Women’s and Gender Studies Program, Boston College

BRCA NEWSWORTHY

It’s not over yet, but right now the courts have ruled for the people! My favorite article thus far is: click here to follow the link:

Invalidation of gene patents will benefit patients

The article was written 4/3/10 & comes from the website: http://www.news-medical.net/news/20100403/Invalidation-of-gene-patents-will-benefit-patients.aspx

If the ruling is upheld genetic testing & diagnosis will be open to more companies. Competition will put more players into the field & hopefully will be beneficial for patients.

Hello to my faithful followers…

After one of our members brought this question to our group, I felt that our investigation into the supplement should be shared…so here goes!

The question was: “Does Caltrate 600-D have soy in it?” and then…if so…

Is this a problem for women who have had breast cancer & does the soy act as estrogen does?

Please follow our link:

http://previvorsandsurvivors.com/forum/have-a-question/caltrate-600-d-supplement/page-1/post-304/#p304

After much investigation, I checked with a friend of mine who is a Pharmacist. As with all the information on this site…PLEASE CHECK ANY QUESTIONS YOU MAY HAVE WITH YOUR PHYSICIAN!

I just try here to bring us the BEST information!

With that said… the Pharmacist has informed me that CALTRATE does indeed have soy oil—although it is in a small amount—HE would NOT RECOMMEND it for anyone who has breast cancer issues.

He felt a wiser choice would be either Os-Cal or Citracal or the generic form of either. He stated that neither of these products has any soy.

AGAIN, PLEASE CHECK WITH YOUR PHYSICIAN TO SEE WHAT IS IN YOUR BEST INTEREST!