(I could not find a way to send this e-mail to Giuliana directly, so I am posting it publicly and linking to it on Twitter, in hopes that she will see it.)
Dear Giuliana (and Bill, since this affects him as well),
I had a bilateral mastectomy in February at the age of 33. I know this is an incredibly busy and emotional time for you, but I am asking you to please read and consider the entire contents of this e-mail before you move forward with your surgery. I will try to keep it as short as possible (though I could go on for several pages on this topic).
It took 2 years to get my breast cancer diagnosed as the first 3 doctors I went to did not take my concerns seriously because of my age and lack of risk factors. By the time I got to a doctor who did, the tumor was 8 cm by 7 cm (the size of a bar of soap). It had spread to my lymph nodes and there was a good chance it had spread beyond that. The surgeon who diagnosed me decided that chemotherapy BEFORE surgery would be best in my case, to hopefully head off any metastasis.
During these months, I had the opportunity to speak with many women who had various typs of breast reconstruction. Of the women I talked to, EVERY SINGLE ONE made a comment to me that they wish they had known what was really involved in reconstruction before they did it. ALL of them said the recovery was harder than what the doctor said it would be, and ALL of them had some sort of "rare complication" that required additional surgery. MANY of them said they only went with reconstructive surgery because the plastic surgeon said it was emotionally important to do it right away. SEVERAL of the women told me they regretted the decision and if they had the option of doing it again, they would NOT have reconstruction done. NONE of the women felt that having fake boobs helped them heal emotionally (though I can see why plastic surgeons view it this way, since the patients they deal with come to them because they are not happy with themselves and feel that surgery will fix their unhappiness).
After talking it over extensively with my husband (who was the only one whose opinion really mattered), I decided that fake boobs were just not that important to me. I had to really fight the medical system to NOT have reconstruction - meeting with a support group, meeting with the plastic surgeon, and meeting with the mastectomy surgeon again just days before the surgery. And I have to tell you -- IT WAS THE BEST DECISION I HAVE EVER MADE! I do not have to worry that the implants are hiding any tumor growths (in case I am in the 1% who does have cancer again after mastectomy), I do not have to deal with the pain and discomfort of the procedures to adjust the reconstruction, I only had to have ONE surgery, and the recovery time was LITERALLY only hours. I was released from the hospital the morning after my surgery and went out to dinner that same day. I was even at the beach less than a week later. It was over and done with, and I was able to move on with my life.
Life without boobs is so freeing -- no bras, no bouncing while running, no pressure from the seatbelt, it is comfortable to sleep on my stomach, and there are so many more benefits I hadn't even considered. If I do decide I want boobs, I can wear whatever cup size I want to be that day. I only have one scar that runs along where the bottom bra line was, just under where my breasts were. It can not be seen even in a bikini or low cut dress. I am willing to show you a picture of how my chest looks, it is NOT scary, and NOT embarrassing.
Even though the results of reconstructive surgery are amazingly close to real looking, they do not move like real breasts. As my husband pointed out -- they wouldn't have felt like mine did to him (and I would not have any feeling in them anyway). There ARE possible health implications from the implants themselves, not to mention the long term upkeep on them. Everyone who matters to me would know they were fake, and it didn't seem fair that I should have to go through multiple surgeries, months of recovery, a lifetime of worry that they could be covering something up... all just to make strangers more comfortable when they look at me.
I am sharing my situation with you because I want you to fully think about ALL of the ramifications of reconstructive surgery, rather than just the cosmetic side of it. In your line of work I know that good boobs are important, but THEY DO NOT DEFINE YOU. You mentioned on Today that you are privileged to have a platform to share your journey, and to offer hope to millions of women. Imagine the message you could send by NOT having reconstruction. To me, this issue goes beyond breast cancer, it is about how women view their breasts for their entire life. Women have been fed this idea that larger breasts are sexy, and some women are even willing to risk their health to undergo surgery to get them. You have the opportunity to make women AND MEN question this idea that has persisted for generations. You are beautiful, you are healthy, you are sexy... and NOT because of your boobs, because you are YOU. This is such a powerful message that women need to hear, and I think that it would mean so much more coming from someone like you -- someone who is universally accepted as beautiful, healthy, and sexy.
There is so much more I could share. I know you are surrounded by experts and people with opinions, but if you want to talk to someone who has been through it recently, please feel free to call me at (deleted). That is my cell phone number, and I am willing to sign something to ensure confidentiality. All I am asking is that you FULLY consider all of your options.
I wish you all the best no matter what you decide to do. This is YOUR body, and YOUR future, and YOUR happiness, and YOUR health, and it needs to be YOUR decision (not that of doctors or public opinion!).
HUGS,
Colleen
Tuesday, December 6, 2011
Changing the focus of my blog...
So it turns out that talking about my breast cancer journey is harder than I thought it would be. Every time I try to post something, the anger that I feel towards the first 3 doctors I saw (you know... the ones who told me that there was no way I had breast cancer) would resurface, and the post ended up turning into "I hate these doctors" which doesn't really help anyone. I am in the process of filing formal complaints with the hospital all three are affiliated with, with their accrediting agencies, and with the medical board. And that is all I want to say about them at this point.
I just discovered that when I set up the blog originally, it only allowed people with registered accounts to leave comments. Sorry about that! :) I have changed that setting now, so feel free to comment away (though I do still have it set for me to approve them first, there are some wacky people out there LOL).
I am going to take my blog in a new direction now -- one that will hopefully HELP people. So stay tuned. :)
I just discovered that when I set up the blog originally, it only allowed people with registered accounts to leave comments. Sorry about that! :) I have changed that setting now, so feel free to comment away (though I do still have it set for me to approve them first, there are some wacky people out there LOL).
I am going to take my blog in a new direction now -- one that will hopefully HELP people. So stay tuned. :)
Tuesday, July 19, 2011
Today is one of my anniversaries!
I am not sure if anyone is still checking in here (besides Aunt Fizz and Kalanamak, who have been sending very polite reminders), but today seems like a good day for an update.
One year ago today, I found out I had breast cancer. Although, that isn't entirely correct because there were several different days in which I found out I had breast cancer.
Do I count from October 2008, just a few days after the birth of my youngest son, when the very first symptoms started, when I had the first shadow of concern, but before anyone (including a doctor who considers himself a "breast cancer doctor") recognized the symptoms as breast cancer?
Do I count from September 2009 when the symptoms started that WERE indicative of breast cancer, when I did my online research, and in the middle of the night I had the horrible realization that I could have breast cancer, but my doctors dismissed my concerns because they didn't feel I had any risk factors?
Do I count from June 2010 when I went to the FIFTH doctor (after the first 4 told me it could not be breast cancer) who finally said to me "I'm worried about this lump, and I think it needs to be looked at?"
Do I count from July 14, when the breast cancer specialist who that doctor referred me to looked at my breast and said she agreed with my concerns and wanted to take action right away (this was the FIRST time a doctor was willing to DO SOMETHING about my symptoms)?
Do I count from July 16, the day she performed a biopsy in her office and said "I'm worried it's cancer?" At this visit, I had to go into the waiting room and tell my husband that what we feared was a very real possibility. He and I then went into the conference room where several different people came in and laid out my whole treatment plan, because the doctor was so sure that it was in fact cancer. My husband and I left THAT meeting and drove to a different meeting where we found out that we would be losing our insurance 15 days later. We then went to pick up our boys from my friend Andrea's house, and I had to say the words "I have breast cancer" out loud for the very first time (and received the first of many hugs). This was also the day I had to tell my mother that her only child had cancer. That was one of the longest days of my life, and one that I hope none of you can ever relate to.
Or do I count July 19, when the results of the biopsy came back and I got a 30 second phone call at 6:30 PM in which the doctor simply stated "It is what we thought it was." This is considered the date I was officially diagnosed with cancer, though when my other doctors ask "When did you find out you had cancer?" I never really know what date to give them.
So I have decided that ALL of them are days that I will celebrate as anniversaries (because there were many days out of the last 365 that I did not believe I would still be here a year later).
I think I am finally ready to talk about what I have been through, though I admit I just wasn't ready to talk about it at the time. I did try to post an update on several occasions but could not deal with the emotion of it. Over the next few days I will try to update you on how I am doing physically, mentally , emotionally, and spiritually.
Thank you all so much for your prayers, and cards, and meals, and gifts over the last year. I still have not sent out thank you notes (though I did buy some VERY pretty ones, lost them, bought another set, found the original ones, and still haven't opened any of them), but there is NO WAY I could have made it through the last year without the support of my family and friends.
One year ago today, I found out I had breast cancer. Although, that isn't entirely correct because there were several different days in which I found out I had breast cancer.
Do I count from October 2008, just a few days after the birth of my youngest son, when the very first symptoms started, when I had the first shadow of concern, but before anyone (including a doctor who considers himself a "breast cancer doctor") recognized the symptoms as breast cancer?
Do I count from September 2009 when the symptoms started that WERE indicative of breast cancer, when I did my online research, and in the middle of the night I had the horrible realization that I could have breast cancer, but my doctors dismissed my concerns because they didn't feel I had any risk factors?
Do I count from June 2010 when I went to the FIFTH doctor (after the first 4 told me it could not be breast cancer) who finally said to me "I'm worried about this lump, and I think it needs to be looked at?"
Do I count from July 14, when the breast cancer specialist who that doctor referred me to looked at my breast and said she agreed with my concerns and wanted to take action right away (this was the FIRST time a doctor was willing to DO SOMETHING about my symptoms)?
Do I count from July 16, the day she performed a biopsy in her office and said "I'm worried it's cancer?" At this visit, I had to go into the waiting room and tell my husband that what we feared was a very real possibility. He and I then went into the conference room where several different people came in and laid out my whole treatment plan, because the doctor was so sure that it was in fact cancer. My husband and I left THAT meeting and drove to a different meeting where we found out that we would be losing our insurance 15 days later. We then went to pick up our boys from my friend Andrea's house, and I had to say the words "I have breast cancer" out loud for the very first time (and received the first of many hugs). This was also the day I had to tell my mother that her only child had cancer. That was one of the longest days of my life, and one that I hope none of you can ever relate to.
Or do I count July 19, when the results of the biopsy came back and I got a 30 second phone call at 6:30 PM in which the doctor simply stated "It is what we thought it was." This is considered the date I was officially diagnosed with cancer, though when my other doctors ask "When did you find out you had cancer?" I never really know what date to give them.
So I have decided that ALL of them are days that I will celebrate as anniversaries (because there were many days out of the last 365 that I did not believe I would still be here a year later).
I think I am finally ready to talk about what I have been through, though I admit I just wasn't ready to talk about it at the time. I did try to post an update on several occasions but could not deal with the emotion of it. Over the next few days I will try to update you on how I am doing physically, mentally , emotionally, and spiritually.
Thank you all so much for your prayers, and cards, and meals, and gifts over the last year. I still have not sent out thank you notes (though I did buy some VERY pretty ones, lost them, bought another set, found the original ones, and still haven't opened any of them), but there is NO WAY I could have made it through the last year without the support of my family and friends.
Subscribe to:
Posts (Atom)