Destination unknown

 

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Who the fuck would have thought getting cancer was going to be such a world wind of events? Not me! Not to the point of going from one doctors appointment to another.  There’s the breast surgeon.  The asshole who was very nonchalant with his mannerisms and behavior. You’d think that I came in with a fucking pimple on my ass.  My firs breast surgeon apparently performs needle core biopsies in the office without anesthesia.  Lucky for me that he was unable to do my biopsy because my DCIS was so tiny.  I might have died of a heart attack in the office if he tried to give me one. Well than there was Dr K.  He was the one who performed a biopsy on me.  luckily he used anesthetic on me and plenty of it.  With all that said, that biopsy was less than pleasant to say the least. My Dr was compassionate and patient unlike the breast surgeon. I am terribly needle phobic and came in on 10 mg of Valium.  I was fucking stoned as hell.  I don’t even drink and it was like wo, holy shit girl you can’t even walk straight. Waiting for results are pure hell.  For those of you who have had any kind of biopsies or cancer related tests, know exactly what I mean. What the hell do I do now that I have been diagnosed with breast cancer?  Ah go and see an oncologist why don’t I?  Yes that’s what I was told I needed to do.  So, here I come.  I brought my neighbor with me because I didn’t have the mental strength to go alone.  The oncologist told me at my initial appointment that I didn’t need chemo.  Haha Boy that was going to be a fucking joke in the long run.  He advised me that he was going to run a oncotype dx test on my tumor. Who ever thought my test was going to come back as 25?  Not my Dr! He was shocked as fuck.  Same look on his face as when I told him I was BRCA2 positive.  He didn’t think that was going to happen wither.  Jokes on me. Well what this mean is that I had a low to intermediate chance of getting my cancer back.  I had a 17% chance of reoccurrence. Chemo was going to cut that number is half. So what’s the big deal about that figure? Well that and my BRCA Kaka mutation is what the big deal was.  That and the fact that I was 41 years young. My tumor was 1 mm over.  Yes one shitty mm did me in and was sending me off to chemo land.  Countless appointments later, with another oncologist at Sloan Kettering, the breast surgeon, plastic surgeon. Another PS appointment at Maimonides breast cancer center with a breast surgeon, and plastic surgeon. They all told me what they recommended and what they would do to me.  It’s always nice when you have absolutely no control of what is going to happen to you next. You feel like a small little aunt in a huge world as if someone is going to stomp on you, yikes! I remember clearly crying on my way back home on the train. I was petrified of doing chemo.  Knowing  I had no choice really sucked.  Would I chance not doing chemo over one lousy mm? Just one mm! sigh, no I wasn’t. Anyone who knows me knows that I am no push over.  I feel very confident that I did all my research and that I didn’t just do what my initial breast surgeon told me to do. My persistence has saved my life and brought me to this journey.  Remember, always go with your gut. Know that you are not alone.  There is always that second and like in my case third opinion.  Reach out to other support groups and people who have gone through a similar journey as you did.  Know that nothing is permanent.  You are strong, tenacious and you can do this.  Your destination unknown will be no more.

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BRCA Kaka

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It was sometime in the end of January or early February,  when I got the dreaded phone call that I needed to go for a biopsy. My mammogram showed calcification. My Dr. said that with nine out of ten women it is benign. I made my appointment and I had that dreadful biopsy February 13, 2013. I took a Valium right as I got there and boy did that hit me hard within minutes.

My breast surgeon was on vacation that week so I called the Dr who did my biopsy. He was very kind to me and gave me the dreaded news on February 18th, that I had BC.  The first thing that I remember him saying was, “you are not going to die from this”. My husband was beside me when I got the news and I just couldn’t hold back my tears.

My gynecologist happens to be an Ashkenazi Jewish. She urged me to go and get tested for the BRCA mutation. I spoke to my breast surgeon and he tried to do everything to discourage me from getting tested. Well anyone who knows me knows that I am no push over, so I called Maimonides hospital because the other hospital didn’t have an appointment soon enough for me. It was “Bashert,” which means destiny in Hebrew. I met with Flora my genetic counselor, she was tall and thin with red hair.  She was extremely pleasant and very caring.  She explained to me how the test works and told me that it takes around five weeks to get my results. The protocol stated I then had to see a physician before I left. The physician on staff was absolutely shocked.  Not only did this Dr not want to test me, but he never even sent me for an MRI as advised by my Dr who did the biopsy. Eventually I fired my first breast surgeon and got myself a new team at Memorial Sloan Kettering cancer center. Two weeks later I got a phone call from Flora. At that moment I knew for sure that I was a carrier of the BRCA mutation. I always knew as a young woman that I was going to get breast cancer.  This was before I even knew what BRCA was or that it even existed. I know that it sounds crazy, but I just always knew. My paternal grandmother had BC twice and succumbed to the disease around the age of 63.

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It has been a very difficult three years for me. I have had a lumpectomy, CMF chemo for six months, and a double mastectomy with immediate expanders reconstruction.  An exchange with a BSO, because BRCA mutants not only have a high risk of getting BC, but also a very high risk of getting ovarian cancer.  It is also known as the silent killer because of its difficulty in getting diagnosed.  Symptoms appear when one is stage three or four. At that point the prognosis is very bleak. I also had a right foob revision twice along with fat grafting.  So when people say that we are getting a free boob job, it is beyond crazy and offensive.

I never thought that this was going to be my life. I lost my breasts to this damn mutation and disease. Now I have silicone implants in me.  Don’t get me wrong, my plastic surgeon did a great job with my reconstruction. There is a new norm for us after having a bilateral mastectomy. Although I no longer have my real breasts, I still feel very feminine and sexy.  Reconstruction can be really beautiful.

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I have chosen to have a BSO at 42 because I wasn’t going to take a chance in getting ovarian cancer.  Menopause is manageable.  I am 45 years old now and am doing much better. I am on a 5 year regimen with taking cancer meds. I still have a couple of more years to go.  I had to switch the meds three times because of the side effects.

I would like to stress the importance of getting genetic testing. Also, I would like to tell every woman out there to go with their gut.  I went with mine and it saved my life. I would also like to stress the importance of seeing a genetic counselor. Genetic counselors take the time to explain your risks and evaluate your family history.  I spent about an hour and a half with Flora. I also called her back several times after that and asked her more questions.  I have a great team of doctors that I now go to at Sloan Kettering.  My team of Dr’s is amazing. My oncologist, is not at Sloan, but is beyond thorough. He watches over me like a hawk.

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I feel very blessed and lucky that my story has taken a turn for the better because not everyone is that lucky. I believe that we have progressed but still have a long way to go as far as cancer is concerned.

I am now in 2016.  A lot has happened.  I had another revision for my right foob.  I am now a bit older and a little wiser.  I have decided to create my own BRCA HBOC group on Facebook for women who carry a mutation.  We are growing slowly but surely.  I cannot express enough gratitude in the support that these amazing women give me. It has not been an easy journey to say the least but together we are stronger than alone. It is wonderful to be able to share our experiences with one another. Unfortunately we are getting bullied by Facebook still.  Our mastectomy picks are constantly getting reported in private groups.  Having a mastectomy is scary. By us sharing our pictures, it gives women hope and an idea of what to expect as far as reconstruction goes. It is imperative that women feel safe and are able to network. I will continue to support women and continue to bring awareness to the community.