Shikha's Story - Part II

[shikhacanfightit]

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.

- Shikha

[sumeet_shah Administrator]

Dear Shikha,

You are one strong lady and a role model! Your experience will definitely benefit and inspire many patients to fight this disease.

Also, thanks for an insight on mutations in breast cancer.

Your message in the last few paragraphs is very very important and I do hope, those reading your experience, share it with others and pass on the message.

[shikhacanfightit in reply to sumeet_shah]

Hello Dr. Sumeet,

I am glad that I can help you in someway. I have been very busy as its close to the end of second semester. But I will check in whenever possible. Glad to share my story and it'll be even better if my openness can help others.

Shikha

[rgci13]

Shika you are really a strong lady but in India I am not sure if the so much facility is availble in all Cancer Institutes and do not have any idea whether the doctors can devote so much time for each patient too. I am still to cross the first year hurdle. Keeping my fingers crossed for the first year Shikha.

[sumeet_shah Administrator in reply to rgci13]

rgci13, we are all with you; you will safely cross your first year hurdle and many years beyond that, just continue being strong and positive, like you already are.

And you ARE very correct, rgci13; I should not be saying this about my own fraternity, but then, not many doctors devote time to their patients. Not that they are too busy and they don't have time, they HAVE, but it's a matter of choice. Oncology is a lucrative field, and half the doctors in oncology are in it, more for the money part. But there will be quite a few of them, who have this field close to their hearts and genuinely want to hold their patient's hand and help them out in this time of stress for the patient and their families.

[shikhacanfightit in reply to rgci13]

Thanks rgci! I am sure you will be able to cross this hurdle. As Dr. Sumeet mentions, you are a strong and positive person. Just stay that way... life is really beautiful and you have lots of great things to see and experience. Having a doctor like Dr. Sumeet is a very big plus. You can ask him anything and he'll help you - Such a great doctor in India!! So, you have it - India has great doctors and you'll know when you see/meet/find them

[mintzz]

Dear shikha,hats off to u!your experience,i am sure will surely help many patients.you have a nice writing style which is very clear and precise.keep sharing your experience.tc,God bless u!

[shikhacanfightit in reply to mintzz]

Thanks mintzz. Friends like you inspire me to write and open my heart to the world

[rgci13]

Thank you both Shikha and Dr. Sumeet. I am extremely happy with him and I am hoping to meet personally him someday. Keep on writing Shikhha , but I only mentioned about doctors in general but my team of doctors in Rajiv Gandhi Institute, Rohini were simply super duper and I have a beautiful rapport with all of them fortunately. This is very important and helpful I feel. Thanks to all for their support and thanx to Dr. sumeet and you Shikha. Keep posting and let's make this w onderful site most wanted.

[shikhacanfightit in reply to rgci13]

Kudos to Rajiv Gandhi Institute, Rohini! I'm so glad you have a great team of doctors working with you!

[kontak TeamBCI]

Dear Shikha - its really tense to even read you had undergone so much difficulties. Its really great to have you, Dr Sumeet and other members who guide in every way as the doctors mostly do not answer all the questions we have in mind and avoid answering. May be they are so busy and cannot blame them.

[shikhacanfightit in reply to kontak]

Thanks kontak. feel free to ask any questions on this forum. I am proud of my fellow contributors and to be a part of this group!!

[shirdi]

hi Shikha.

today i can understand what u have gone through cause i also going through it. Initially i was having the feeling that why i. But now after reading ur story i think that u have suffered more and more than us. After reading ur story i have courage to face all this but initially and now also some times i think that i cannot face any thing and i really know how difficult it is to face. Suddenly life has taken such a big turn . pray to god to give u courage to come out this and help all of us in going towards positive side.

i never can believe that doctor like Dr. Summet devote their valuable time and help us to over come everything and also thankful to all on this site to give courage to me

[shikhacanfightit in reply to shirdi]

Hi Shirdi,

Thank you so much. I think you are a strong person yourself. You have the courage to share what you are going through on a forum - that is a sign of strength!!

I am glad that you are here and that you are inspired by others like me. I am inspired by you too!!

I pray to god to give you strength and good health!

Best

- Shikha

[laya]

hi shikha,

i think we are not even bothered to know it completely untill we start feeling the pain of the disease..first when i was diagnosed i cudnt stop crying... y me??? that too 6 months after a baby....but now after reading all in this forum i really feel too courageous and to fight out...yes now iam a breast cancer patient..but i keep telling myself that after six months i would be a breast cancer survivor...now i think i should play a important role in this society by creating awareness among people..