First of all, I’m pleased to say that I’ve gotten some wonderful emails from people who have shared their stories with me. One woman wrote that she had decided against reconstruction, and is happy with that decision. Every woman who wrote told me that they were glad and relieved that they decided on the mastectomies. One woman is on a mission to have every woman in her family have the surgery! I have learned a great deal and have been able to reflect upon all that they have shared. Thanks to all of you for your stories.
I’ve decided to have the implant reconstruction, and have scheduled the surgeries for a bit sooner than planned. So, on December 2nd, I will be making some changes for the better, or changes for the “breast” – get it?
The decision to have the implants was difficult. While I worried about having something unnatural in my body, I was equally concerned about other option’ s full day of surgery followed by two smaller surgeries, and a minumum 12 week recovery time. Through my reading and chatting, I have learned that many women have had implants with very little problems. The nightmare stories that we have all heard regarding implants seem to be more common among those who were increasing their existing breast size, not “bringing home a new pair.”
We decided to have the surgery early simply as a matter of scheduling. My doctors told me to expect a 6 week recovery time, and December and part of January are relatively slow for me at work. After that, I will have several other outpatient visits, but only one more surgery, most likely in April. That leaves me 3 months of solid training for the 60 mile walk on July 31. This is doable.
As with the oompherectomy I had last April, I am not scared, at least not yet. I’ve been given this gift of knowledge from God, chose to listen to my body, and am doing the right thing. I am healthy, and I have confidence in both of my doctors. I also have a prescription for Lorazapam that I can fill at any time! Not to mention the “Bye Bye Boobies” party we are having beforehand!
My story continues, as I am sure yours does, too. Feel free to write it here, or email me. I look forward to hearing from you!
I met with the doctor yesterday to discuss reconstruction. His office looked like something you would find in Beverly Hills, with a day spa and free specialty drinks, including anti-aging suplements you could add to the water. I was struck by two things. One, under normal circumstances, I would never find myself in a place like this, and two, man, would I love to have some of these services!
The women in the office were perfectly sculpted with beautiful skin. I wondered if he hired them because they were beautiful or because he thought they had good potential for before/after pictures. Note to self: if I am ever unemployed, I must remember to apply here.
The doctor was dressed in a very nice suit (navy, small pinstripes), and could have easily been selling Porsches instead of breasts. Once he started talking, though, the brilliant nerdy doctor that I needed to meet was channeled, and I felt more at ease. After a few minutes of chatting, he called in one of his goddesses/medical assistants to help take some measurements and photos. Then we talked for almost 50 minutes.
He told me that many women elect NOT to have reconstruction. After 10 years, a large majority of those women said they would do it the same way again if given the chance. In other words, they were pleased with their decisons. Am I considering the option of no reconstruction? (Not on your life, buck-o.) Some women elect to have the mastectomy right away, and delay reconstruction until they have had time to make an informed decision. Fortunately, I have time to gather the facts now, since I plan on waiting till 2010. One thing I do know: I want the “jiffy bube” plan: take out the old, bring in the new. In and out in under a day. (My paraphrasing, not his!)
There are several options available to me. Quick lesson…you can have either implants put in, or tissue from your body reassigned to create the area. Both have advantages and disadvantages. Both require several surgeries to complete. Both create beautiful results. Yet both can have nightmare results as well.
Implants take only a few hours in surgery and a two-three week recovery time. The tissue surgeries (Tram flap and DIEP flap, et al) have surgery times from 5-12 hours and 8 weeks recovery. Implants don’t come with a tummy tuck. The others do. Tram surgery takes from your stomach muscles, so you are left with less muscle there. DIEP takes from fatty tissue, but has a much more complicated microsurgery involved. There is also a surgery that takes from your tush, but has a massively painful recovery. So how do you choose?
Cheryl has been in her breast cancer support group for 5 months. She told me that the patients with the Tram flap are not really pleased with their results. The implant people seem happy. The DIEP flap stories are positive as well. I have some time. If I choose implants, I would consider having the surgery in January, during winter break at school. If I choose the other option (DIEP flap), I would definitely wait until April when work slows down so I could have the longer recovery time.
My decision? Heck, if I knew THAT, I wouldn’t need this blog.
Dj- thank you for sharing your journey. My name is Balee and i live in Louisville, KY. I am 37 yrs. old and have 3 kids ages 13, 6 and 5. My mom was diagnoised with ovarian cancer about 7 yrs. ago and it came out of the blue. We have always been on theball with mammograms and annual visits because my aunt dies in 1990 from breast cancer. My mom thought she was going through menopause and that wasn’t the case. My mom works at Metro Hosiptal in Cleveland so she knows her docs on a different level than a lot of people do going into something like this. he doc mentioned something about genetic testing for her so she could give her kids the option of getting gentically tested as well. I received a call adn she told me she had the BRCA1 gene and here are the names and numbers of genetic counslers in Louisville. At this time I was newly engaged and had no idea what to think. I knew I had to take care fo myself because I had a young child and I wanted to be around to see her grow into a woman bea grandma and so on. Anyway, after I decided to get tested and did researcha bout what options I had the results came in and I also was BRCA1+. The first thing I thoguth was – will my new husband be there with me through all this. I simple asked him if he still wanted to amrry me and go down this path that could be not so beautiful- he said yes. ( Lucky me!) So, we proceeded and we had 2 children 13.5 months apart. 3 Mnths after our youngest was born, I had a hysto/oopho and all the plumbing is gone. So, now I am 33yrs. old and entering menopuase with a 1 yr. old and a newborn as well as a 7 yr.old.
The following year in dec. 2005 I had a bilateral done and underwent reconstruction. I did all this as a preventative. My mom also had the bilateral but she had the transflap surgery where I just had implants. Now here we are a family of 5 – and i could not be happier about the choices I have made. My oldest who is 13 adn I go every year to speak to the 3rd yr. med students in my genetic Counslers class at the University and we share our story now these young people no it can affect everyone anyone. My daughter is aware that she amy also have to make these same choices one day but at least she knows what to expect and that her family is here for her. As for my yonger children, they know I have had surgery to help me stay healthy. As they grow older we will share with them the same information and hope that with the work a lot of us do in raising money for a cure they wont have to worryabout it and they can focus on finding a cure for something else. Since all this my mom has had another bout of ovarian cancer but she is healthy and strong and will be joining me at the 3 day walk in Cleveland 2010! I look at having knowledge of being positive withthe BRCA1 gene has having a treasure map to my life. I know what I need to do so I can be here for my family. Thanks for reading and i am always available for questions or just plain old support!
Last January, my sister Cheryl learned that she had breast cancer. I don’t want to share too much of her story since I am sure she’ll post it here, too. While she lived in Akron, and I was 6 hours away, we spoke to each other on the phone 2 or 3 times a day. I can remember a phone call in particular in February that changed my life. “DJ, I am so sorry to have to tell you this, but I have the BRCA gene. The doctor said you should get tested, too.” I wasn’t too sure what that meant, but I had the test two weeks later. Another call, this one on March 2 from my doctor. “DJ, your BRCA test came back positive.” He was so soft spoken, I almost felt bad for him. He suggested a genetic counselor and told me to visit Gilda’s Club, a website created in the memory of comedienne Gilda Radner. I thanked him, hung up the phone, and stood in the middle of the living room. My husband Jon figured out what was happening, and together we just sat on the couch, speechless.
I knew right away that I would have the total hysterectomy. No indecision there. Kids are grown, not planning on any new ones, so go ahead, do what you’ve got to do guys. April 28 came and went, and 6 weeks later I was back to work, thinking I was “all done.” I never really thought about “the girls.” Cheryl and I spoke about how I would get tested every 3 months and if we found something I would face the problem then. We figured that if the lump was caught early, I could have the surgery and avoid chemo. I thought I had a plan.
During the summer I had a breast MRI. Because of the nature of my summer, I didn’t get the chance to meet with my breast doctor until last Monday. It was at that meeting that things changed. He told me that the BRCA2 gene created cancers that were negative (which explains why my sister has a triple negative cancer), and that the treatment for this type, regardless of size, would include chemo. He also shared that since the hysterectomy did wonders in preventing hormone based cancers, the non-hormonal ones were still a high risk. My sister, grandmother and grandfather all had breast cancer before their 50th birthday. I am 46.
So now I have new planning to do. I need to gather information. I searched for support groups for people in my position, but didn’t find what I was looking for. I needed to hear both sides. I needed to know what people were going through. So, breastchoice.org was born. Maybe you know someone with a story, maybe it’s your own. Please share. I’ll keep you all posted.