Myself pre-mastectomy
My name is Claudia Gilmore, I am 23 years old, and I plan to have a preventative double mastectomy with reconstruction by the end of the year. This blog is a personal account of my experiences, feelings and decisions leading up to my surgery and proceeding through my recovery and reconstruction. I am eager to share my story with family, friends and the world in an effort to support any other woman at a hereditary risk of breast/ovarian cancer and trying to offset her risk in whatever way she feels comfortable. We are all in this together. And it is also for that reason that I lend my story up to the general public so that they, too, may understand and have compassion for the struggles, sorrows and joys that accompany life with a BRCA1 or BRCA2 mutation.
I also dedicate this blog to my father and my grandmother. If it weren’t for their courage, I would never have been given a new lease on life. I am forever indebted to these two inspirational people. I love you both with all my heart.
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May 12, 2010 at 10:34 pm
diana
You are awesome and brave!!! Great article- story.
My daughter was 20 when she found out BRCA2+ no surgery yet, preventative appointments.. it’s been a long struggle. she almost had surgery last summer, then back out. I support her either way but I pray she has her surgery soon!
May 17, 2010 at 2:31 am
claudiagilmore
Thank you so much, Diana!! When I finally decided to go through with the surgery, I think my mother may have been more relieved than myself! I never realized the relief that other like my family would feel once surgery had significantly decreased my risk – I would not be the only one breathing a huge sigh of relief! Thank you again for your kind words and support – I’ll be praying for your daughter and your family as she decides how to best tackle her mutation. xoxoxo, Claudia
May 19, 2010 at 4:59 am
Carolyn
I am 58, BRCA1 positive, and had preventative mastectomies with tram flap reconstruction last summer (ovaries and fallopian tubes removed in 2007). My plastic surgeon created nipples and added a bit of fat to one area to make the shape of the breasts more identical in December and I just got the areola tattoos done this month.
I do not regret this decision: two of my three sisters are also BRCA1 positive. One died of ovarian cancer 23 years ago and the other one is currently undergoing chemotherapy for it. Having preventative mastectomies is a hard decision, but I feel it is the best we can do. This cancer – breast or ovarian – is deadly. I am so glad you are brave enough to make this choice. I know that my family and friends are glad I had these operations, too.
My advice for you and any woman undergoing mastectomies is to have some important conversations with your doctors before the operation about how your breasts will look – how YOU want your breasts to look.
My plastic surgeon was great: the shape of the breasts are what I was expecting. He showed me pictures before the surgery and we talked about how my breasts would look. They are very similar to the size I had before and the shape is nice.
Your surgeon will perform the mastectomies: the incisions your surgeon makes will determine the size and shape of your new areolas/nipples. Make sure s/he will be careful! I am unhappy with how my left breast looks because of what my mastectomy surgeon did.
My surgeon decided to use two different types of mastectomy surgeries on my breasts. I think he was experimenting but he said that his hand got a cramp and he switched to a different procedure on the left breast. It is not like I was huge: I was only a size B. If his hand got a cramp he should have had his assistant take over. My original breasts were identical: I think they presented perfect specimens for the surgeon to compare two types of procedures. I did not agree to this or even know that there were two types of surgeries possible! My plastic surgeon did not know that the surgeon was going to use two types of surgery on me, either.
Make sure your surgeon knows how important it is that s/he is careful with the shape of the incision to remove the breast tissue, and that the skin is spared as much as possible when the breast tissue is being removed! The skin is very delicate.
The type of surgery used to perform the mastectomy on my left breast damaged the skin so much that my plastic surgeon had to cut a lot of it away. The patch (the skin was taken from my stomach area) is a large football shape. With the added tattoo that breast now looks like an eye.
I hate the way it looks and I am VERY upset with the surgeon. The skin of the patch is a different color from the surrounding breast skin, and there is a thick scar around it. That scar would have been hidden by the tattoo if the skin had not been damaged and cut away.
My right breast is almost OK though the patch has a bit of a teardrop shape. I just got the tattoos done and that breast is not too bad – a triangular scar sticks out from one side of the tattooed areola because of the teardrop shape patch.
I hope you and other women can avoid this heartache. I guess one of the big reasons I had reconstruction was that I did not want to think of cancer or mastectomies when I looked in the mirror. I wanted to look and feel normal. Now I see the ugly results on my left breast and these experiences are on my mind a lot. I also know that I was not a very important person or my surgeon would not have done such a thing.
I assumed that my surgeons and I were all on the same page: I chose to undergo 10 extra hours of surgery because I was concerned about how I looked. I did not think to tell the surgeon that I wanted the results to be as perfect as possible – I just assumed that this was what everyone was striving for.
Perhaps my experience is unique. I hope so. But I would feel better if all women undergoing this surgery would make sure that their surgeons are careful, concerned and competent. If you have doubts please interview other surgeons to find the best one in your area. I hope this long message does not upset you. I just want to help you avoid the problems I had.
I look forward to hearing how you are doing!
Take care!
Carolyn
June 12, 2010 at 3:01 pm
Elizabeth Vivenzio
I applaud your courage and ask you to read my site: EmbracingMastectomy.com, where you will find uplifting information about preparation to make your journey easier. Your proactive energy will get you through this difficult time. Then, you will be able to live each day without the ominous clouds of BC hanging over your head. It is such a relief; I have not thought about getting BC since my surgery. Yes, it is a long journey from mastectomy through reconstruction (and revision in my case), but it is well worth the trip!!! Elizabeth
June 21, 2010 at 9:41 pm
Elizabeth Vivenzio
I just read your entire blog and am so impressed with your courage and focused determination! You are going to be a true inspiration to other young women, including your younger sisters. After my mastectomy I harnessed the power of what I learned into an informational site to help ease the journey for others. I would like to place a link to your site from my own, which is embracingmastectomy.com. I have so much more helpful information that I am developing and adding to my site. I just accompanied a friend to her nipple reconstruction and photographed her procedure. I will be uploading those photos in the coming weeks, and she will be a quest author on my site. It was amazing! Please contact me directly via my site. I have so much to share, and I would also like to send you a mastectomy self-care kit.