F.O.R.C.E.

FORCE: Facing Our Risk of Cancer Empowered is an organization that I have utilized since I received my BRCA1+ results. I am pretty sure that I have read every last word on the website. Needless to say, FORCE has been an invaluable resource in my life for the last four years and I know that it will remain so. The organization is based in Florida but there are local chapters around the United States. San Diego had previously had a chapter but then it ceased to exist due to a lack of people being able to allot enough time and whatnot. 

I will rewind a bit. I initially learned about FORCE at the genetic counseling appointment with Kris Kalla where I found out my BRCA1+ results four years ago. She suggested that I check out the organization and further educate myself. I did just that. I read all of the latest research available on the website, statistics, I learned what it meant to be a previvor, and I read other peoples' stories. I was overwhelmed. But the knowledge that I gained from FORCE has been a blessing and the women I met through the website have been so helpful. 

Now we'll fast forward to a week ago. I received an envelope with the FORCE emblem on it. I ripped it open and found a single sheet of paper. There was an upcoming meeting/dinner on January 26th to meet with other FORCE members and the woman who created the organization, Sue Friedman, was also going to be there. I immediately RSVP'd to the event and asked my parents to attend with me.

Thursday, January 26th came quickly. I spent my morning meeting with my surgeon and spent the rest of the day feeling quite emotional about all of the decisions that I am making. We arrived at the restaurant where the meeting was being held and sat at a table with about 20 other people. I immediately felt at ease. We all shared our stories and it was absolutely wonderful. Then something very emotional happened. I could not stop staring at the woman sitting almost directly across from me. She looked extremely familiar and her voice was one that I remembered distinctly. I turned to my mom and asked if she recognized her and she said she did but that she could not figure out from where. And then it clicked. It was Kris, the genetic counselor who delivered my BRCA1+ results to me. After seeing her a few times in 2008, she left Kaiser and I began seeing a new genetic counselor, but I always had a special attachment to Kris. Back to the dinner. When I had the chance, I reintroduced myself and attempted to remind her of who I was. She remembered! It brought tears to my eyes. She had the job of giving me unpleasant test results and she was absolutely amazing when she did. We caught up and I really look forward to keeping in contact with her. Without her, I do not know if I would be in the place that I am now. When she went through my family history with me (13 women, 9 are BRCA1+, and 7 of the 9 have had cancer), she did her best make me feel as though this did not have to be my future; that I would be taken care of. I will always be grateful to her.

Anyway, the dinner lasted about 3 hours. A few of the women that I was talking to were older and were breast cancer survivors. They were amazing. As BRCA+ women, they assured me that if they had the knowledge that I did, they'd make the same decision that I have made. They assured me that the physical pain after the surgery would subside, that I would still look great, and that my emotional health would actually improve because I would no longer be worrying about cancer constantly. There was another young woman there, she was 25, she had already had her mastectomy and had her tissue expanders in still. It was so helpful to speak to someone my age, who was in the same situation as I, and made the same decision. After I expressed my fears to her, which consist mostly of the physical, end result, she offered to show me hers. Her process was not even over, she still had her expanders in, and she looked amazing. The only difference is that her surgeon did a NSM (nipple-sparing mastectomy), so she did not have the incision scars across the face of the breast like I will. Honestly, part of me wishes that I could have a NSM after seeing her results, but then I remember why I am going through all of this; to cut out as much risk as possible. In addition to that, I do not have a choice. The surgeons at Kaiser will not do a NSM. Regardless, seeing that the shape can look natural and the fact that I have seen nipple reconstruction look extremely natural, I feel really good about the reconstruction process as a whole. The scars that I will have will be prominent when I do not have anything covering my chest but luckily my skin scars well, so I can only hope that they will be light.  Also, I will still be able to wear things that I wear now, small bathing suits, low cut tops, etc. I am finally accepting that the discomfort I will face is such a small price to pay for the gift of life. 

Several of the women spoke of losing their mothers, their sisters, close friends and as I sat there with my mom, who is a survivor, I could not help but feel extremely blessed. On January 31, 2008, exactly four years ago today, my mom underwent her bilateral mastectomy. I will never forget the strength and grace that she showed through her battle with this ugly disease. Every day I am reminded how lucky I am to have my mommy with me today. The fact that she is still here to watch me grow into a woman and to see me achieve my dreams, is something that a lot of people do not have because breast cancer took that opportunity away from them. I am so incredibly proud to be a survivor's daughter and I am so lucky to have such a strong role model. 

All in all, the experience at that FORCE dinner was exactly what I needed. So many things happened, I heard so many stories, and it felt wonderful to know that I had the support of women who have been through it. I was reminded exactly why I am on this journey.  

Like I have said before, if you or someone you know seems to have a family history of breast and/or ovarian cancer, check out www.facingourrisk.org to read more and address any concerns you may have with your doctor. This organization has done wonderful things for myself as well as many other families that I know.

“Believe in yourself and all that you are. Know that there is something inside you that is greater than any obstacle.” – Christian D. Larson

Kudva.

It is not an elective surgery when the alternative is cancer. -Unknown

Dr. Kudva. What an incredible woman. As I had previously shared, I was not comfortable with the first general surgeon that I met with. I expressed that to my plastic surgeon who then referred me to a new general surgeon who he said I would absolutely love. I attempted to make an appointment but she was completely booked. I was told that I would be placed on a waiting list, but the very next day I received a phone call, she had an opening two days later, January 26th. So, I took the appointment despite having to miss class.

Honestly, I was extremely nervous going into this appointment. I knew very little about Dr. Kudva. All I knew is that my plastic surgeon highly recommended her and that she could potentially say no. I have heard of doctors that did not feel comfortable doing a prophylactic mastectomy on younger women, so naturally, I feared the worst. I was early to my appointment (despite missing my exit in Otay Mesa and having to turn around at the Mexican border, oops). Dr. Kudva was running late. I sat in the exam room for about 45 minutes before she finally knocked on the door and entered. What a surprise! She was immediately warm and comforting. She did not sugar coat anything but made me feel at ease and ultimately agreed with my decision; I made a wise decision. My nerves subsided almost immediately. We talked about the process and I expressed my fears. She assured me that she would do her best to keep my incisions as small as possible and that she could actually leave a little more tissue than I had previously thought. All good news.

Then we talked about the reconstruction. I learned a lot more about the process and I had a change of heart.  Assuming that my plastic surgeon will agree to it, and I am sure he will, I am going to have immediate reconstruction. That means I will have the mastectomy and in the same surgery, my plastic surgeon will insert my tissue expanders. The risk of infection and tissue death is higher, but it must be noted that a lot of the statistics are with regard to patients who have cancer and are not in good health. Dr. Kudva assured me that I would be more than okay as far as pain is concerned and that most of my troubles would potentially be emotional ones. Having the tissue expanders already in place when I wake up from the mastectomy will make the process a bit easier to handle. She then went on to ask me about my medical history, my lifestyle, and my relationship status among other things. It felt good to finally speak to a female doctor about this. I felt as though Dr. Sinow understood why good results are so important to me, but unless you are a woman, I don't think you could ever fully understand. I expressed to Dr. Kudva that yes, losing my breasts will be difficult because I have always felt that they make me a woman and honestly I love mine, but they are just not worth the risk. And then she said something that really resonated with me. She stopped me and said "your breasts do not make you a woman, they do not define you" and then she pointed to her heart and said "this is what makes you a woman and that is all you need". Now typically I am not very outwardly emotional, at least not with people I am unfamiliar with, but I could not help but tear up. She was right. And I needed to hear that. I will carry those words with me throughout this process and on into the future.

We ended the appointment after about 30-45 minutes and I left feeling extremely positive and far more comfortable than before. She ultimately agreed to do my surgery, she agreed to work with my plastic surgeon in scheduling a date that works with their schedules but also with mine so that I will not have to miss school, and she assured me that I am making a wise decision, especially with my family history.

So what's the next step? I will be getting a breast MRI shortly and assuming that the scans are clear, a final surgery date will be set and I will proceed with the rest of my pre-op appointments. I am really looking forward to seeing my plastic surgeon and discussing more specifics regarding my reconstruction: size, type, etc. I could not be more grateful for the team of amazing doctors that Kaiser Permanente has provided me with. Everything is falling into place and as each day passes, this decision becomes more real and I find myself feeling upbeat and positive about it.

Plastic.

January 12th was a big day. I met my plastic surgeon, Dr. Sinow, who will be doing my reconstruction. My first impression of him was a good one and after sitting in his office for over two hours, I felt completely at ease with both him and my decision.

We spent a short amount of time discussing personal topics such as law school, my relationship status, why I wanted to go through with the surgery, etc. He informed me that a large portion of the surgeries he performs are for mastectomy patients and that given my genetic mutation he would advocate that I make the decision I have made. The rest of the appointment was spent talking about my options for reconstruction and the process itself.

The reconstruction may be done in one of three ways: implants, TRAM flap, or back flap. I do not have any fat or excess tissue in my lower abdomen therefore I am not a candidate for the TRAM flap reconstruction and doctors typically won't perform a back flap reconstruction unless the patient has gone through radiation and it tends to be more of a last resort. So, it was quickly established that I will be undergoing implant reconstruction. He went through great care to explain, very thoroughly, the process of the reconstruction, what I should expect, and any potential risks. I've come to realize that this is going to be an extremely long process but I suppose that what I will endure in the coming months will be nothing compared to what I would have to endure if I were to get sick in the future.

Obviously the first step will be to undergo the mastectomy. I have not yet chosen my surgeon for that surgery, as the first one I saw did not leave me feeling comfortable. My plastic surgeon suggested a different surgeon and I will be meeting her at the beginning of February. Once I have the mastectomy I will heal for two weeks. Some people do opt for immediate reconstruction while in the operating room for their mastectomy, however the risk of tissue death and infection is anywhere from 30-50% and would delay the healing process. Dr. Sinow said that I am a great candidate for immediate reconstruction due to my health and weight, however, I do not want to take on that high of a risk. So, once I heal from the initial surgery, the reconstruction will be begin. My first surgery will be to insert small, saline-filled tissue expanders, under the chest muscle. The expanders will be injected with saline fluid every few weeks for about three months. This is to create a breast mound and create more tissue to work with once the permanent implants are inserted. After the three months pass, I will then undergo surgery to have my permanent implants put in. I have yet to decide between saline, silicone, or silicone gel. Each have their benefits and each have their downsides. I'm leaning toward silicone, but fortunately I have time to research my options and make an informed decision. After I heal, another two weeks or so, I will undergo a final surgery to make any necessary adjustments and to have the finishing touches added to my new ladies.

Most of my concerns have been superficial, that I would not be able to wear bikinis like I do now, or low cut tops, or that my scars would show in a wedding dress, however that won't be the case. Dr. Sinow assured me that I will be able to do all of those things without a problem. Because I am a smaller woman, the incisions and the subsequent scars will be small and limited to the breast itself, not extending across my chest at all. Big positive! Another positive is that by breaking the reconstruction up into several surgeries, the recovery time is much shorter. Dr. Sinow told me that I will be able to run after each surgery by week two, which is very important to me.

I've been trying my damnedest to find the silver lining in this whole process; aside from the obvious health benefits. Many people have asked questions regarding "why" I would do something so radical at such a young age, honestly, I see no other option. Sure, I will never be the same physically, but I am secure enough with myself to know that I am more than a pair of breasts. I feel very confident in my doctor and his ability to give me the best results possible. I've seen photos and aside from prominent scarring, most reconstructions very closely resemble real breasts. I have also been asked several times about dating. It is not a secret that after 4 1/2 years, I am now single. People have asked, what if a man can't understand why you aren't "normal". The way I see it is that, if I am dating someone, not only will I be very upfront about my body when the time is right, but that if a man cannot accept that part of me and embrace it, not only is he not a man, he is also not deserving. I am going forward with this surgery to make sure that I am around for a very long time. I do not want to live in fear and I do not want my loved ones to live in fear. If I did get sick in the future, not only would I not want to go through that, but I would be heartbroken having to put my family through that. What about law school? Well, a majority of the process will occur during my summer break, so long as everything goes as planned. I have an amazing job opportunity with a retired judge who will be helping me by providing me with a job that will be easy on me while I am recovering. A portion of the process will interfere with the Fall 2012 semester, however I am very fortunate to have amazing friends and family who have offered to help me carry books, drive me to school, etc.

So what's next? I am scheduled to have a breast MRI at UCSD medical center this month. This is to make sure that I am healthy prior to surgery. When you undergo a prophylactic mastectomy, so long as the breast is healthy, they are able to leave a little more tissue than they would on a cancerous breast. After that, I will be meeting a new general surgeon for a second opinion. I've heard nothing but wonderful things about her and I hope that she will take my case. Then I will be meeting with my plastic surgeon again to make final decisions regarding the reconstruction process. Once that is done, the surgeons will coordinate their schedules and we will set a date!

Thank you again for all of the loving messages, phone calls, and support. I would not be able to do this without all of you. This has been an extremely taxing decision to make but with each day that passes, I realize that this will only bring positive results. Sure, it's going to hurt, but I can handle that. What I cannot handle is living with cancer on my mind. I want to deal with this on my own terms, not breast cancer's terms.

Positive.

December 24, 2007 is a day that I will never forget. That was the day that my sweet mom informed our family that she had been diagnosed with breast cancer. After speaking with her physician and examining our family's history of female cancers, as we have lost many women in our family to both breast and ovarian cancer, my mom was tested for a genetic mutation (of which we were previously unaware) that as early as 1990 was being linked to cases of breast cancer where there was a strong family history of female cancers. The proteins that suffer from the mutations are referred to as BRCA 1 or BRCA 2. So, shortly after her diagnosis, my mom's genetic test came back as positive for a BRCA 1 mutation.

April 15, 2008. My mom was in the midst of her battle with breast cancer. She was fully recovered from her bilateral mastectomy and enduring the harshness of chemotherapy treatments. The next step was to meet with a genetic counselor to discuss my risk of developing breast cancer and to be tested for the BRCA mutation. That day I had one tube of blood drawn and went home to sit and wait.

April 30, 2008. After 15 days I found myself, 19 years old, sitting in a room at Kaiser Permanente with my mom and our fabulous genetic counselor (more about her in another post) awaiting the verdict. During the two weeks I was waiting for results I had begun to research what it would mean for my future should I test positive. I knew that I had a 50% chance of having the mutation and I knew that should I test positive, I would have to make big decisions regarding my future. I remember sitting in the room with my mom, she kept telling me "well, maybe you'll be negative", but I had a feeling I would not be receiving such news. Our genetic counselor entered the room, opened up a purple folder that contained the test results, and informed me that I was BRCA 1 positive. She gave me numerous pieces of literature and discussed steps that I could take to reduce my risk. I really cannot remember anything she said in the moments immediately following the news, other than agreeing that I would receive special breast MRIs and regular clinical breast exams to make sure that if any cancer did develop, it would be caught at an early stage. I also began seeing a gynecological oncologist to discuss my increased risk for ovarian cancer. After many appointments with many doctors, I felt confident that we had implemented the best surveillance plan for me.

As a BRCA 1 carrier, I face an 87% chance of developing breast cancer in my lifetime. The general population faces a 7% risk. I also face a 44% chance of developing ovarian cancer, while the general population faces a <2% chance. (These statistics vary based on what source is referenced, however these are representative of what I have consistently heard).

January 9, 2012. Today I sit here, about four years from the day that my mom tested positive for the BRCA 1 mutation. In the last four years I have spent days on end researching the risks that I face, networking with many organizations, and speaking with other young women who also face the same risk. After four long years of deliberation, I have made a very big decision. This year, assuming all goes as planned, I will undergo a prophylactic bilateral mastectomy and complete reconstruction. With this surgery I will reduce my cancer risk by 90%. I can live a normal life without having to worry excessively.

I have struggled with whether or not I wanted to broadcast my decision to the masses and after a lot of deliberation and with the support of family and close friends, I have decided that openly discussing my journey may help others. I know that this decision is not for everybody and I know that not every one can understand why someone would make such a radical choice, but I truly feel as though this is the right thing for me and if only one person learns something from reading this, I have done my part in raising awareness.

I will not let an increased risk of cancer define who I am. I am a previvor.

If you or someone you know has a family history of breast and/or ovarian cancer there are several resources available and they are resources that I utilize actively.
www.facingourrisk.org
www.bebrightpink.org
www.youngsurvival.org