It has occurred to me that I’ve left out some pretty big details. It occurred to me because I’m answering many of the same questions over and over. So, here is a synopsis of my personal breast cancer. It’s really important to remember that your cancer, or your mom’s, aunt’s, friend’s, sister’s, or third cousin four times removed’s cancer is almost definitely not exactly like mine, her experiences are different, her circumstances are different, her physiology is different, her psychology is different; in short, there’s only one Lextastic cancer. And it belongs to moi. Those experiences are no less valid, they just aren’t mine. And this is my story.
I didn’t know that there were so many different kinds of breast cancer. It makes sense, now that I think about it, since there are so many kinds of breasts, women, genes, etc. There are over 15 distinct types of currently identified breast cancer. I know, right?! Crazy! There are BRCA cancers (think Angelina Jolie) and other genetic cancers (mine is common with a cancer gene that is commonly known as Lynch Syndrome, but is technically MSH2. I find out soon if I have it). Sometimes it’s just because the sky is blue or you didn’t accidentally step in front of that Mack truck or because of the butterfly effect. What I’m saying is that some of us get this because of genetics, and some are just unlucky. Either way, the simple fact of cancer remains. Some women try to mitigate their chances of cancer with prophylactic (preventative) mastectomies (and sometimes hysterectomies, depending on their family history, doctor, and emotional needs), others don’t. It is a completely personal choice. One of my dear friends had a prophylactic mastectomy. More may have and simply not shared that info. That is their choice, and I say do what is best, smartest for yourself. You do you, sister. I got’cha. I used to have an opinion. I’m also, quite admittedly, sometimes a giant jackass. Here’s a bit of blunt honesty for you:
Nobody else’s opinion matters when it comes to your health, your situation, or your life. Not a damn bit. Those opinions don’t belong in the Land Of Your Business. Nope. I am not in the game of apologizing for my own decisions any more and you shouldn’t either.
Capiche? Good. Anyway, now that you understand why your (really lovely) advice about the specific treatment and surgical decision of person you know isn’t necessarily applicable, I would like to say with no hesitation how very, very humbled and grateful I am for all of you who have shared your stories with me. I am. Specifically those who’ve been personally touched by this diagnostic hydra. Who’ve had to bring this stupid (twatastic) beast home to roost. The experiences shared with me have been impactful, insightful, beautiful, and all too human. I love you all. From the bottom of my soul, thank you. You rock.
Now, back to me.
One thing I learned pretty quickly is that the cancerous cells are tested to see if they react to 3 hormones. This is super important, it turns out. These are Estrogen, Progesterone, and something called HERS2. Yeah, I’d never heard of the last one till this, either. If your cancer reacts to any combination of these, it affects your treatment. If it reacts to HERS2, though, it is a much more aggressive cancer.
My diagnosis is Invasive Ductile Carcinoma, estrogen & progesterone positive, Hers2 negative. The mass is over 3.2 (but less than 4) centimeters, with a benign 5 mm mass in a second quadrant. It is at least Stage 2
That means that it started in a milk duct (so much for the wive’s tale about nursing babies!), and has spread from there. It responds to estrogen & progesterone, but not the HERS2 hormone That is a bit of great news, btw. That particular hormone determines how aggressive it is. Mine isn’t aggressive. The bad part (aside from, you know, cancer) is that it responds to estrogen and progesterone, which are present because I’m not menopausal. It also means my atomic ovaries, the ones that laughed in the face of every form of birth control for a goddamn decade resulting in 4 bonus children, need to be turned off. Immediate menopause, no going back. This makes me as sad as the idea of losing my breasts. Actually, the fact that it’s simultaneous is what is so tough. I’m not some hippy dippy whack job who goes out and does moon dances every month, but I have a profound appreciation for just how delicately balanced my hormones are and how much they impact my mental and physical state. I won’t know the final stage until after my mastectomy, because part of the classification (and there are degrees within the stages) is dependent upon how many lymph nodes are draining what is essentially cancer juice. Look, I’m not going to get into the medical terminology, but you can look it up. Anyway, the other determining factor is if the cancer has already traveled, which would automatically make it Stage 4. I never knew that there was more than just the size of a tumor that determined stage. And I always thought that the stage was more a classification of how close someone was to death than anything else. Nope. Who knew?! Now we all know.
Essentially, I have a Golf Ball Of Doom inside my breast, and it’s living off of my hormones, growing, doing its thing. Not killing me, but it is usually found in much older women and is usually much smaller when it is HERS2 negative. I’m an outlier, a unique, sparkly bit of special. As usual.
Ok, so that is a synopsis of the medical stuff. Obviously there is a ton more, but you have a vague idea now. The rest of this nonsense involves things like surgery, chemotherapy, and radiation therapy. I’m opting, for numerous reasons that are all related to vanity, for what is known as a skin-sparing, nipple-sparing double mastectomy. They will essentially take out all of the breast tissue and leave the skin. It’s a gross as it sounds. I’m (at this point, since there’s no gun at my temple) opting out of radiation. Period. If I have a lumpectomy to remove the Golf ball Of Doom and a “clear margin of healthy tissue”, I will lose over half of the tissue in my left breast, the scar will be across the front, and there’s a 100% chance I’ll have to go through radiation. That will significantly change the skin (it sometimes kills it, but it always makes it tough, non-elastic, different) and will be focused directly over my heart. It would also be daily for anywhere from 1-3 months and any possible reconstruction couldn’t take place for a minimum of 6 months after it’s completion. It’s a ball of good times. I’ve done my research, and have assessed this for myself and my situation, and that is my choice. No further questions will be entertained about this portion of the test, kids. Remember the bit about opinions not being important? That.
The best option for me to have any type of anything even remotely close to symmetry is to remove breast tissue on both sides and build it back up, first with implants, then with possible fat transfers. Sounds more and more fun, doesn’t it? Hells Yeah!
As I said earlier, there is way more to this that I ever thought possible.
I’d like to try to have immediate reconstruction. It means implants will be immediately placed after the tissue is removed. There is an option to have a temporary implant, known as a tissue expander, put in, but I don’t want to do that at all. It requires me going in to the plastic surgeon’s office weekly to have saline injected into them to determine how much pressure my skin can handle, since many of the blood vessels will be removed along with the tissue, until everyone is happy. It not only guarantees more surgery, more discomfort, more pain, and more time, but just as importantly, surgery is not possible if you are on chemotherapy. It sounds terrible, doesn’t it? Exactly. Look, normally I am very amenable to the suggestions of medical professionals (who aren’t complete twats) but on this, I find myself being extremely defiant.
Sometimes you have to just go with your gut. My gut says to not do anything, so in this case, I’m going with something else. Enough is enough. I may have a million complications, or I may have none. I need to take that chance for myself, to have some say so in this process. It doesn’t seem very unreasonable to me. The benefit of this besides (hopefully) a single surgery is that it allows for the most symmetry and if things go well it will let me heal the fastest. But this is me, let’s be realistic. I feel like this is the right option, though. Partly because there has to be room for what I want in this. There has to.
The day of my biopsy, as most of you know, I wore my prettiest bra and my feeling was that it was just another inconvenience. When I found out I had cancer, I went straight to my nail salon and got a mani-pedi. I tried to not cry the whole time. I was stunned, sad, and angry. I should’ve expected it, though, because I have this kind of luck. It gave me a chance to sit back, trapped in a pedicure chair, surrounded by women who had no idea, who were just there to get pretty. I’m so glad I did that instead of going home and dissolving into a heaping mess. Really, I am.
I have a great local doctor named Dr. Rock (obviously! It’s kismet) but I’m not an idiot. When a world-class cancer center is within driving distance, you’re a complete idiot to not go for a second opinion. So I did.
I put the wrong address into the GPS the morning of my appointment, which was squeezed in at 7:50, and after a fairly good freak out and being in rush hour traffic heading downtown in Tampa on I275, I got there an hour late. Then I discovered that all of the parking is valet, which is great except it threw me off even more & I felt completely off-kilter.
I was seen fairly quickly, though, which says a lot about how this place runs.
I saw Dr. Catherine Lee, and I really liked her. She was personable, witty, and laughed at my jokes. She also didn’t pull any punches and knows her stuff. The problem really lies in the reconstruction and the fact that this place is between 2 1/2 and 3 hours away from my home, depending in traffic. The idea of that drive right after a double mastectomy and returning every week for fill-ups to the expanders because the plastic surgeons there *only* do expanders, and for follow-ups, though was a major turn off. And, like the doctors here, everyone seems to take the summer off, to a certain extent, and it was going to be a couple of weeks before I could see a plastic surgeon. Add it all up and it is the universe screaming at me that this lovely place was not going to be my Mecca.
So I went home.
And I got my surgery scheduled.
Because I have a life to lead.
Whether this is a threat or a promise depends on you.
Edited to add the following links: