Starting from where I left....
I started chemotherapy first week of April, 2008. My hair was shorter by choice to avoid the shock of losing it all at once.
I have no idea of the emotions that my mom would have gone through, those of my husband, my 2 year old. The focus is at me. We read and read and read and went through books about everything that could be breast and that could be cancer.
Doctors, appointments.... that is another book.
I chose Cancer Institute of New Jersey and never ever regretted that.
There I met Linda. My social worker and now a great friend. This was another great thing about my treatment at the CINJ - they never let me feel that I was alone in my fight. They gave me medicine and social support!
I started chemo and I was pathetic. We did everything to make sure a healthy and safe environment at home.
Nausea, ill feelings, hallucinations...... yet another book. Lost all my hair...... not as bad a feeling as people may think. I have always had confidence in my appearance. But like most girls, I may lose it at times though.
So, chemo is over. 2 days into radiation and the doctors at the radiology department tell me that they have to stop radiation as my team of doctors have to see me and it will help if I had my husband accompany me to the office of my oncologist, Dr. Deborah Toppmeyer. Thank you doctor.
"You are tested positive for a BRCA1 mutation"
Followed by..... information overload.... a 3 hour session with so many doctors and the decision making...... phew! I went through it alone because I was unable to establish contact with my husband whose work had been very busy at the time. He still regrets that.
Breast cancer is a leading cancer diagnosis in women, and ovarian cancer is the deadliest cancer in women. For now, I have reduced my risk of breast cancer to 2-3% as compared to that earlier risk of 87%. Yes, I have had a bilateral mastectomy followed by reconstructive surgery of both breasts. All this was done last year in July. Mom helped. God bless her.
I am still deciding on my Opherectomy... the surgery that will remove my ovaries. I have upto a 54% lifetime risk of developing ovarian cancer.
A woman with a BRCA mutation is about five times more likely to develop breast cancer and 10 to 30 times more likely to develop ovarian cancer than women who don't have a mutation, according to the National Cancer Institute.
When you are a woman and have family members who have had breast or ovarian cancer, your risk is higher. And I want that all young girls should be aware of this. This is a fact that my daughter Sasha will face when she is growing up to be a young woman. She has a 50% chance of having the mutation when she grows up and gets tested for the genetic mutation. She has the opportunity of being a previvor.
I hope that I am able to raise this kind of awareness with young girls of every community, specially the South Asian Community. None of my relatives ever heard of the term BRCA. I had never heard of real people getting genetic testing. I thought that is something only scientists or doctors practice on hamsters/mice/monkeys...animals.
A gene mutation means higher cancer risk. Now, how would you know that you have the mutation..... knowledge of family medical history.
There are certain warnings signs that should prompt you to discuss your family history with your doctor:
One relative with:
•bilateral breast cancer
•breast and ovarian cancer
•or male breast cancer
Two relatives with:
•breast cancer (one before age 50),
•ovarian cancer (at any age),
•or one with breast cancer and one with ovarian cancer
Three relatives with breast cancer (at any age)
Any relative with a BRCA mutation.
I have shared my mutation with all my cousins and immediate family. Unfortunately, they have not heard of genetic testing. They have either not heard, or they do not want to know, or this information is too much information. It is really sad that I can only help them by sharing the fact that I have a cancerous mutation and telling them that they should get tested. I want to do more. I think if more awareness is created, there will be more research and more institutions that will support genetic testing in high risk women across the world.
So, I need your help. I want more and more people to be aware of their health and get in tune with their body. Spread the word so we have more who learn from each other and from blogs like these. Help yourself or help them in helping you or other people like you, me or Sasha (my daughter) and her friends.
For all my female friends, I want you to:
•Do self breast exams every month to know any changes in their breasts
•have a doctor do a breast/pelvic exam every year beginning at age 20.
•beginning at the age 40, you should have an annual mammogram.
Just stay healthy and always in tune with your body because any abnormality is alarming and calls for help from a doctor, friend or from support groups.
When I was feeling silly, loopy, over-weight, I checked with my doctor and found out that I had hypothyroidism. Your body knows and gives you signs of ill functioning. You be the best judge of your health.