Pancreatic Cancer & the BRCA gene

BRCA NEWSWORTHY

The BRCA Connection-Are Jews more vulnerable to pancreatic cancer?

Written by: Fredda Sacharow from the jewishexponent.com  follow this link for the entire article: http://www.jewishexponent.com/article/22092/

According to the Chicago Center for Jewish Genetic Disorders, people who test positive for the BRCA2 gene are also at a higher risk of developing pancreatic cancer.

Also noteworthy was the information that Ashkenazic (Eastern European Jewish Descent) families who have 2 first degree relatives who have had pancreatic cancer were also at a higher risk of having the BRCA2 mutation.

It is being recommended that if you are Askenazic & have a family history of OVARIAN, BREAST or PANCREATIC CANCER you get genetic testing.

Pancreatic cancer is difficult to diagnose early. Symptoms could include: backaches, weight loss, appetite loss, jaundice or yellowing of skin & nausea, & stool changes. If you have symptoms–see your doctor

Menopause pills & kidney stones

BRCA NEWSWORTHY

Postmenopause hormone pills linked to kidney stones

Originally published: October 11, 2010 7:31 PM
Updated: October 11, 2010 11:35 PM
By LINDSEY TANNER. The Associated Press  

Please follow this link for this very important information:  http://www.newsday.com/news/postmenopause-hormone-pills-linked-to-kidney-stones-1.2351965?p=

At risk alarms are ringing yet again for post menopausal women taking “hormone pills, Pempro, pills containing estrogen plus progestin, or Premarin, estrogen-only pills.” These alarms are warning these women they are at risk for developing kidney stones.

As always discuss the risk vs. benefit with your physician. We already know that hormone replacement medication has been linked with heart attacks, breast cancer & strokes.  It is further recommended that if you must take these medications take them for as short a period of time as possible to limit your health risks.

 Be well you all…

BRCA – PREVIVORS – BREAST CANCER – HBOC

Set your video recorders… Previvors to be featured on CNN this Sunday (tomorrow) at 4:40pm EST. CNN to be covering cancer and genetics at this time slot on every Sunday in the month of October. Tune in!!!

BRCA & PREVIVOR & SURVIVOR AWARENESS

PLEASE JOIN–AWARENESS CAMPAIGN: This week is the start of the very first Hereditary Breast & Ovarian Cancer Awareness week as well as Wednesday 9/29/10 is the very first National Previvor Day. This is what our group is about!
http://www.previvorsandsurvivors.com   & facebook:  http://www.facebook.com/group.php?gid=295172335565
Help us spread the word by sharing this message to spread awareness.

How did your representative vote?

If you want to know how your local Congressional Representative voted on the H.Res 1522

please follow this link: http://www.govtrack.us/congress/vote.xpd?vote=h2010-523

Resolution:H.RES.1522 National Previvor Day & National HBOC Week

National Hereditary Breast & Ovarian Cancer Week is now officially the last week of September & the last Wednesday of September is National Previvor Day. Please follow this link:

Could it happen?

Hello Everyone,

What does a National Hereditary Breast & Ovarian Cancer Week & a National Previvor Day mean to me?

My group http://www.previvorsandsurvivors.com  was started because as “previvors” we are welcome at every breast cancer support group- but not really! Some survivors resent us because we haven’t survived cancer but we have survived something. After I went to my first breast cancer event & had a “rude” experience, I vowed that I would start my previvor & survivor group & help all who needed help as well as educate people as much as I could along my journey.

Together with you all, I would like to bring BRCA AWARENESS to all. We are survivors of a different kind—so again, let’s celebrate & unite & offer hope to all. Please join us by passing this message along & writing to your local Congressonal Representatives.  Follow this link: https://writerep.house.gov/writerep/welcome.shtml  to help pass this resolution: H.RES.1522

Be well!

BRCA PREVIVOR AWARENESS

9/10/10 Shana Tova to all…after 2 days of reflection, I am ready & determined to start my New Year off by bettering my BRCA “PREVIVOR” world. I have a renewed energy to educate & get the word out about “prevention & the need for regular doctor visits & vigilant testing.” Together with you all, I would like to bring BRCA AWARENESS to all. We are survivors of a different kind—so let’s celebrate & unite & offer hope to all. Please join me by passing this message along- copy & paste this message & put it into an email. My journey is just beginiing–thank you for your support. xoxo http://www.previvorsandsurvivors.com

BRCA/Breast/Ovarian Cancer decisions…

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.

BRCA, Breast or Ovarian Cancer… problems with-Insurance company/Bills…

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.