previvors&survivors.com

Tobey RDH

OCEANSIDE, NEW YORK

June 2008

I never thought that I would be writing this, but since my experience, I’ve been told about my amazing spirit, & how I should share my experience to help others.

Okay… I’m going to say it…I’m a PREVIVOR! How liberating it is to say it! I didn’t even know they had names for people like me!

My story started 18 years ago when I watched my mom die from breast cancer. By the time her cancer was diagnosed, it was too late. I cannot urge you women enough to go for a mammography, a sonogram, or an MRI. Prevention is key to survival. Today, women don’t have to die, just because they hear those words…YOU HAVE BREAST CANCER!

Last year, another maternal relative was diagnosed with breast cancer. They now have genetic testing for the breast cancer gene, and because of the family history she had it done. She had a positive BRCA gene meaning there is a genetic predisposition for breast & ovarian cancer. It’s….coming for me!

I went for BRCA (genetic testing) & I too found out I had the gene. Along with my genetic counselors, and breast surgeon I made the incredibly difficult decision to have a prophylactic double mastectomy. Hence…PREVIVOR…a person who as of yet has no cancer, but is predisposed to it, and in my case removes her breasts to remove the risk of dying from breast cancer. If that wasn’t enough, it was also recommended that I lose my ovaries & Fallopian tubes. Talk about feeling neutered!

THIS WAS AN AGONIZING DECISION. I was lucky in one respect…I was a patient of Dr. Karen Kostroff’s for many years, and valued her opinion unquestionably. Her reputation as a breast surgeon is renowned. I was blessed to have her as my doctor & leader. I was in denial for about 20 minutes. I argued with my incredibly human & kind breast surgeon Karen Kostroff and then I smacked myself in the head and said… female parts or my life? I was in denial like everyone else. Why should I do this? I don’t have cancer! I’ll remove my ovaries & tubes…it will lower my risk! I’ll be vigilant…I’ll go for testing every 3 months…I will!

And…Karen bless her soul said very quietly…TOBEY, YOU ARE AN INTELLIGENT WOMAN…WHAT HAPPENS IF ONE CELL REMAINS? I screamed…I guess I die!

And there my decision was made…I was not yet ready to die!

Dr. Kostroff put me in touch with a very kind, knowledgeable & compassionate gynecologist by the name of Dr. Michael Nimaroff a doctor in the forefront of BRCA women needing an oophorectomy. I never had a second of pain from this procedure. The only way I know that anything was done is that I have tiny laparoscopic bikini scars from him.

The next Doctor I had to choose was my plastic surgeon. This was the hardest doctor to choose! I obviously wanted someone skilled & whom I could be comfortable talking to and expressing my needs. I had the “very best plastic surgeon in the world ladies!” I hope you all can say the same about yours when you are done!

I now had my first candidate to convince that a mastectomy was a necessary decision. My newly diagnosed family member! She of course like any reasonably thinking person wanted a lumpectomy & radiation. But, in my opinion, this was just not enough. Trust me, she is stubborn, but I already lost my mother to this horrible disease, I was not going to lose another family member.

I will ask all you out here in cyber land the same thing I asked her. DO YOU WANT TO LIVE OR DIE? That is the number one question. After all, if one…one cancer cell gets loose and goes undetected you are in for much more grief and decision making than merely a mastectomy. After you get past the fact that you are going to lose your breasts…don’t look back! Only look forward. It’s not an easy road…but a road worth going down.

In our case, being BRCA positive put us both in a high category for getting breast cancer, and certainly a chance of recurrence. I look back now, & say why was this such a hard decision? Once you move forward, only focus on the positive. I had sticky post-it notes everywhere…on my night table, on the bathroom mirror, the kitchen cabinets. They all said the same thing!

1. I am saving my life!
2. I will never need a mammography again!
3. I will have beautiful perfect breasts!
4. I will never have to wear a bra again!

Ladies, if you can think of any more…just add them to the list!

I’ve counseled a few women & mostly I hear the same thing…so, I will share. It’s really all excuses, & fear. I’m hoping this website will grow, & more women will find their support system here, and we can have a sisterhood.

Fear? I was more afraid of breast cancer than removing my breasts. NEXT!

Recuperation & Pain? Wasn’t so bad…they have great drugs on the market today. I was out of work for 5 weeks after my mastectomy. I would have been back to work sooner, but I’m a health care provider, and some of the equipment was hard to push! NEXT!

I’ll look like a freak? Good one…Okay, I’m not going to mince words here…You’ll look different at the beginning, but my relative and I chose plastic surgery, and we now look better than G-d made us! Thank you from the bottom of my new big beautiful chest… Dr. Lyle Leipziger!

Get a good plastic surgeon consultation—and don’t be shy! If you don’t like the first one, go look for another one! This is the time to have a skilled & compassionate Doctor that you can relate to. (One that understands tears & fear!) NEXT!

What about sex? Well, was it good before? If you have the right compassionate partner… hello!!! Forget about breast sensations… they are gone…but use your imagination…nothing else has changed! NEXT!

How long before I feel good again? I started this ordeal September 2007, & finished my reconstruction March 2008. April…I felt great! Exercise is important too! Attitude is everything! I feel great, I look great! I’m back to work on a full schedule! I’m alive & here to tell my story!

Please join me in telling yours. I look forward to chatting with you all.

Love, strength, hope & health to you all.

Tobey RDH