So there are times when I wonder why I am choosing to do this procedure. I envision pain, possible complications, etc. I have a very strong faith and God keeps putting people and messages in front of me that add to my certainty that I should proceed.
I have talked with breast cancer survivors and from Facebook watched the reality of one who passed away last month. I keep promoting the fact that I have insurance, I have the summer off, my husband is home from his duties at the Missouri capitol as a state representative, our daughter can drive, our son is turning 12 and quite self-sufficient. I hear stories of single moms with breast cancer traveling out of state and I am reminded, "this is a piece of cake!" I CAN do this, I SHOULD do this.
My niece-in-law who is a nurse reminded me it feels much better to handle cancer than let cancer handle you.
Will it slow me down? YES! and everybody I know thinks that is good. I run full force, from event to event. I love the thrill of "making it!" and this will truly teach me the true meaning of the word "patient." It is campaign season for Myron and we'll skip a family vacation this year, but I remind myself that in one year I'll be on our second Disney cruise this time with my parents, sister and her family. Surely by then I'll see this as a distant memory one year ago.....
We wrapped up the school year on May 23 and I have tried to pour a lot of summer into these few free days. We headed to my parents vacation home in Branson for dips in the pool, lake, and all the roller coaster rides at Silver Dollar City I could handle. We went to the Royals game and I have stocked up on household goods, a recliner, and plenty of cute button up the front shirts. I made a playlist for surgery and have taken note to how much I really do extend my arms - yikes!
My mom has been super supportive with her first-hand knowledge of the procedure, yet time and purpose will separate our experiences so I can't count on it all to be the same. We've decided it is much like childbirth, everybody has a different story.
I wanted to start this blog as I found few recent perspectives on the procedure. Mitchell has been so helpful to get this all set up for me and I have spent quite a bit of time on here recapping the last nine months. So I'll sign off for now so I can go due some things I won't be able to do temporarily.
Surgery is Tuesday at 11:30; say a little prayer for me, my surgeons and caregivers, including the ones who will have to put up with me at home. Aftercare sounds very busy, but we'll save that for next time.
Saturday, June 2, 2012
Meeting with the Surgeons
So you may be wondering what my husband has been saying about all this. He has been super supportive of me and practically insists that I have the surgery. He feels it is the best option and supports my decision to do some radical things to my body. We have joked a ton about the "boob" part of it and he is a bit excited to see the new ones-he he! He has attended all of my major appointments, which is so great to have another set of ears, as sometimes I may hear what I want to.
In November we met with the general surgeon who will do the procedure at North Kansas City Hospital. He is quiet, gentle and very precise in his manner of speaking, which I hope is the same for his surgical manner. He had just returned from an out-of-state breast cancer convention and enlightened us with some of the new information he learned. He too assured me the mastectomy was the state-of-the-art prescription for BRACA carriers. I wanted to make sure I was not just some kind of lab rat they could test, but I came to realize for the few of us that carry a family history and the fewer that will take the test and even fewer that do something about it...well, this IS what you do. It just seems so radical, I wanted to be sure.
We discussed nipple sparing, the procedure to preserve the nipple but that contributes to continued cancer risk, so I am opting out of that, they will take the entire breast. We talked about surgery in general, risks, scheduling time frames, plastic surgeons, etc. I was convinced he knew what he was doing and thankful that this is not something that involves any of my major organs.
Over my spring break in March, we met with the plastic surgeon and this was where the fun really began. He, too, convinced me this was such a wise choice and told me about how he would help me get the results I wanted. I was actually very excited about the chance to lessen the size of my breasts, as I am convinced they led to some of my recent back issues. His professional, yet down to earth nature, made this final portion more of a celebration. In addition, I love his nursing assistant and the can-do attitude they have about this process. I have been blessed to have such great care givers.
My mom did not have reconstruction, so this is a new territory for our family. There are three options for tissue replacement: back tissue if you are having radiation (I am not, of course), tram flap from your abdomen (risky when doing both breasts, as I am), or expanders with a later implant. BINGO! that will have to work for me.
The general surgeon will take about 2 hours to remove the breasts, then the plastic surgeon will place expanders in, which will later be replaced with implants. The entire surgery will take 3-4 hours to complete and they will send me home the next day with drainage tubes to maintain for a week to 4 weeks! No driving for 2-3 weeks. No lakes, etc. Just lots of relaxing and 10 minutes of walking an hour, no extreme bed rest because as the doctor reminded me, "You are not sick!"
A month after surgery, they will begin to fill the expanders to stretch the skin into breast mounds. When I reach a size we are all comfortable with, I'll have an outpatient surgery to put in the permanent implants. There will also be nipple reconstruction and later tattooing to replace the areola; so I'll have tattoos!! That is a first for me - ha!
At the end of spring break, Myron and I took a trip to Vegas, just the two of us. We had a ton of fun and lived it up for a few days. On the way home, we picked up the mail and received news my surgery had been approved by my insurance. A bittersweet moment: so happy to have it covered but now it was real and going to happen!
During April, the surgery date was set for June 5th allowing me some time to do a few summer things after school was out.
Next post: final preparations and convictions
In November we met with the general surgeon who will do the procedure at North Kansas City Hospital. He is quiet, gentle and very precise in his manner of speaking, which I hope is the same for his surgical manner. He had just returned from an out-of-state breast cancer convention and enlightened us with some of the new information he learned. He too assured me the mastectomy was the state-of-the-art prescription for BRACA carriers. I wanted to make sure I was not just some kind of lab rat they could test, but I came to realize for the few of us that carry a family history and the fewer that will take the test and even fewer that do something about it...well, this IS what you do. It just seems so radical, I wanted to be sure.
We discussed nipple sparing, the procedure to preserve the nipple but that contributes to continued cancer risk, so I am opting out of that, they will take the entire breast. We talked about surgery in general, risks, scheduling time frames, plastic surgeons, etc. I was convinced he knew what he was doing and thankful that this is not something that involves any of my major organs.
Over my spring break in March, we met with the plastic surgeon and this was where the fun really began. He, too, convinced me this was such a wise choice and told me about how he would help me get the results I wanted. I was actually very excited about the chance to lessen the size of my breasts, as I am convinced they led to some of my recent back issues. His professional, yet down to earth nature, made this final portion more of a celebration. In addition, I love his nursing assistant and the can-do attitude they have about this process. I have been blessed to have such great care givers.
My mom did not have reconstruction, so this is a new territory for our family. There are three options for tissue replacement: back tissue if you are having radiation (I am not, of course), tram flap from your abdomen (risky when doing both breasts, as I am), or expanders with a later implant. BINGO! that will have to work for me.
The general surgeon will take about 2 hours to remove the breasts, then the plastic surgeon will place expanders in, which will later be replaced with implants. The entire surgery will take 3-4 hours to complete and they will send me home the next day with drainage tubes to maintain for a week to 4 weeks! No driving for 2-3 weeks. No lakes, etc. Just lots of relaxing and 10 minutes of walking an hour, no extreme bed rest because as the doctor reminded me, "You are not sick!"
A month after surgery, they will begin to fill the expanders to stretch the skin into breast mounds. When I reach a size we are all comfortable with, I'll have an outpatient surgery to put in the permanent implants. There will also be nipple reconstruction and later tattooing to replace the areola; so I'll have tattoos!! That is a first for me - ha!
At the end of spring break, Myron and I took a trip to Vegas, just the two of us. We had a ton of fun and lived it up for a few days. On the way home, we picked up the mail and received news my surgery had been approved by my insurance. A bittersweet moment: so happy to have it covered but now it was real and going to happen!
During April, the surgery date was set for June 5th allowing me some time to do a few summer things after school was out.
Next post: final preparations and convictions
Treatment Options for BRACA Gene Carriers
So I chewed on the fact that I had the gene for breast and ovarian cancer. Being a teacher, my principal was the first person I saw when I returned to school from the results meeting. From his office, he motioned a questioning thumbs up-thumbs down sign, which has symbolized my results all along: thumbs down that I carry it, but thumbs up that I know and can do something about it. How many other women would love to be able to find out their potential risk? MANY, based on the conversations I have had the past nine months.
My mom felt bad, but I told her I had inherited many great genes too. :) I knew just how she felt, having a daughter myself - and a son, because breast cancer does affect males too! Currently, my sister and female cousin have not taken the gene test but they are younger and can watch my progress.
My gynecologist referred me to the University of Kansas Cancer Center, which has locations all across the Kansas City metro area. I was assigned a female oncologist that specializes in hereditary cancers. I've never had a doctor spend so much time with me, of course I have always been very healthy too. With my husband there, we talked about the potential risks of both ovarian and breast cancer and my options to reduce the risk.
I have to say, just one visit to the Kansas City Cancer Center KCCancerCenter.com helped me make my mind up that I was going to follow through on whatever it took to reduce my chances of developing cancer. A waiting room full of people ready for chemo is just the trick to make you think about your own path. I felt safe back at my gynecologist's office where I took the test and received the results; now I was looking cancer in the face - literally. I tossed my shoulder length hair around as they placed a hospital-style bracelet on my arm. I wanted to declare "I don't have cancer, this is my real hair and I intend to keep it!"
During that October visit, the oncologist mapped out my family tree and talked about the importance of my sister and our children being tested for the gene. The good thing is they can specifically look for the genetic marker they found in me, rather than doing the extensive review that was done on my blood sample. That reduces the cost to about $300 per test. They would like to test my daughter when she is 18. My sister and my children have a 50% chance of having the gene since their parent does, but like me they will have to decide if they want to know if they are carriers.
The best way to lower my risk of breast cancer is to have a mastectomy; lowering my risk more than 90%! In addition to the gene, I have plenty of dense, breast tissue which makes routine screening even more difficult. I decided to have the surgery early in summer break, so I would have several weeks to recooperate.
To reduce ovarian cancer, the best option is to have a hysterectomy, however for a pre-menopausal woman like myself, you must have the mastectomy first due to hormones. Darn! I was really ready to do that less invasive one first at my local hospital with a physician I knew well, but that was not to be.
In the meantime, my doctor set me up with a screening plan that would be similar for a gene carrier who is wanting to still have children or for whatever reason is waiting to do surgery, etc. Monthly self exams, quarterly office visits for breast exams by a physician, yearly mammograms, and yearly MRIs- six months after the mammogram. For ovarian risks, pelvic ultra sounds and the CA125 blood test are given every six months. These roll around faster than you think and for someone who is not used to doctor visits, I could not see myself continuing this pattern the rest of my life if I had a choice.
My oncologist referred me to a surgeon and plastic surgeon, as I was interested in having reconstructive surgery. She set up a plan to see me again in three months and gave me plenty of information to share with the rest of my family. More than anything she assured me this was the BEST option for addressing my risk, especially since we were done having children. This was so reassuring because my regular MD had been so critical, but it would be the endorsements of the surgeons that would convince me this was so doable for me.
Next post: visits with the general and plastic surgeon
Family History and Testing
How did I know I carry the breast/ovarian cancer gene? A genetic test, done through a blood sample in September 2011, started the ball rolling for me. The reason why I was tested began many years ago.
My maternal grandmother was diagnosed with stage 4 ovarian cancer in 1989 at the age 61, my freshman year of college. An amazing fighter, she lived an unheard of 11 years with the disease and was able to see three granddaughters marry and meet both of my children. She never had breast cancer, but she was a cheerful advocate for the power of prayer and positive thinking when it came to ovarian cancer treatment.
Breast cancer hit closer to home when a mammogram found spots in both of my mother's breasts in the fall of 2008. She had a double mastectomy, followed by chemotherapy and I am thrilled to say she is doing great now! She took the genetic test following her diagnosis to see if she carried the BRACA gene and since it was positive she elected to also have a hysterectomy. She did not opt for breast reconstruction since she was going through so many other treatments.
When my gynecologist learned of my mother's history, she encouraged me to have the genetic test myself to see if I was at a higher risk for having breast or ovarian cancer. I knew I wanted to do it, but working full time and being in graduate school and with my husband on the campaign trail for state representative I knew there was no way I was going to take any surgical precautionary efforts at that busy time even if my results came back positive. I did however start yearly mammograms at that time (age 37).
This fall when I was in for my yearly exam, the testing topic came up again. Knowing I was not getting any younger (40), I decided to go ahead and have it. It is a simple blood test, but it can cost over $3000; thankfully my insurance covered it.
It came back two weeks later; positive for a deleterious mutation BRACA 2, the kind that does not hit women as early in life and is not as fast growing. That was the good part. Not all gene carriers will develop cancer and vice-versa not all cancer patients carry the gene. Carrying the gene means I have a 45-84% chance of developing breast cancer by age 70, as compared to the general popultaions risk of 8% and a 27% risk of ovarian cancer compared to a less than 1% chance for the general population.
So that makes you stop and think...
Before you take the test they counsel you and ask if you know what you might do depending on the results. In some ways they encourage you not to take it if you are not going to do anything about it. I knew my Nanny would tell me, "Cam, if there is some thing you can do to change your path -do it!" She did not have that luxury 20 years ago, I could not let the opportunity pass me by.
A note about insurance and genetic discrimination: My regular family physician had a fit about my taking of the test when I was in to see her for back problems last fall. This totally surprised me as she harshly informed me I would never get insurance again (FALSE), etc. It was the first time I ever talked back to a physician as she critically asked me why I would ever do such a thing, telling her because I had seen family members fight their way through cancer. It made me really question my choice for testing, but using her logic did I want to have insurance to eventually cover my cancer or reduce the risk of it in the first place? In truth, the federal law HIPAA protects your results from determining your insurance eligibility & rates and most states have genetic discrimination laws. Really, wouldn't an insurance company rather reduce your risk up front than paying to spend years in treatment and surgery. I don't think I can return to her as I trust my physicians to be up to date on the most current practices and laws.
My next post will talk about state-of-the-art treatment for BRACA gene carriers.
My maternal grandmother was diagnosed with stage 4 ovarian cancer in 1989 at the age 61, my freshman year of college. An amazing fighter, she lived an unheard of 11 years with the disease and was able to see three granddaughters marry and meet both of my children. She never had breast cancer, but she was a cheerful advocate for the power of prayer and positive thinking when it came to ovarian cancer treatment.
Breast cancer hit closer to home when a mammogram found spots in both of my mother's breasts in the fall of 2008. She had a double mastectomy, followed by chemotherapy and I am thrilled to say she is doing great now! She took the genetic test following her diagnosis to see if she carried the BRACA gene and since it was positive she elected to also have a hysterectomy. She did not opt for breast reconstruction since she was going through so many other treatments.
When my gynecologist learned of my mother's history, she encouraged me to have the genetic test myself to see if I was at a higher risk for having breast or ovarian cancer. I knew I wanted to do it, but working full time and being in graduate school and with my husband on the campaign trail for state representative I knew there was no way I was going to take any surgical precautionary efforts at that busy time even if my results came back positive. I did however start yearly mammograms at that time (age 37).
This fall when I was in for my yearly exam, the testing topic came up again. Knowing I was not getting any younger (40), I decided to go ahead and have it. It is a simple blood test, but it can cost over $3000; thankfully my insurance covered it.
It came back two weeks later; positive for a deleterious mutation BRACA 2, the kind that does not hit women as early in life and is not as fast growing. That was the good part. Not all gene carriers will develop cancer and vice-versa not all cancer patients carry the gene. Carrying the gene means I have a 45-84% chance of developing breast cancer by age 70, as compared to the general popultaions risk of 8% and a 27% risk of ovarian cancer compared to a less than 1% chance for the general population.
So that makes you stop and think...
Before you take the test they counsel you and ask if you know what you might do depending on the results. In some ways they encourage you not to take it if you are not going to do anything about it. I knew my Nanny would tell me, "Cam, if there is some thing you can do to change your path -do it!" She did not have that luxury 20 years ago, I could not let the opportunity pass me by.
A note about insurance and genetic discrimination: My regular family physician had a fit about my taking of the test when I was in to see her for back problems last fall. This totally surprised me as she harshly informed me I would never get insurance again (FALSE), etc. It was the first time I ever talked back to a physician as she critically asked me why I would ever do such a thing, telling her because I had seen family members fight their way through cancer. It made me really question my choice for testing, but using her logic did I want to have insurance to eventually cover my cancer or reduce the risk of it in the first place? In truth, the federal law HIPAA protects your results from determining your insurance eligibility & rates and most states have genetic discrimination laws. Really, wouldn't an insurance company rather reduce your risk up front than paying to spend years in treatment and surgery. I don't think I can return to her as I trust my physicians to be up to date on the most current practices and laws.
My next post will talk about state-of-the-art treatment for BRACA gene carriers.
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