The form of breast cancer that I have is not invasive but the treatment for it is.
The problem is doctors don't know when DCIS will become invasive so they're incredibly aggressive in their treatment of it. There is actually little difference between the treatment I'd receive if I did have invasive breast cancer and the one for my current diagnosis; there is so much they don't know that the answer seems to be "we know that if we remove the breast entirely, the chances of developing cancer are dramatically reduced, so let's go with that". It feels a little like discovering a broken window and deciding to demolish the entire house.
My options are:
1) Remove my entire breast and hope that I don't spend the rest of my life feeling like I underwent a traumatic surgery that was ultimately unnecessary
2) Do nothing and hope I don't develop invasive breast cancer
A lot of people have sent me links to alternative treatments. I appreciate their intent and I know its done out of love. I share so many of their concerns. A lot of people are distrustful of the medical industry because it does seem that medical professionals are operating with only 1/10 of the information they need and are so unwilling to even consider an integrative approach to medicine. I personally trust that my doctors are doing the best with what they know -- and that they know a lot more than me. However, I am also incredibly frustrated that more time, energy and money is not going into developing an alternative treatment for DCIS than mastectomies. I do not see this treatment as a cure for the diagnosis; it seems, instead, like a surrender, an admittance that no matter how much we progress, there is so much about the body we do not understand.
I am still more inclined to chop my breast off than I am to entertain an alternative treatment though. Why? Fear.
There is no room for fear in an ordinary life and yet it is present in every ordinary life. We're all operating with some degree of fear, some of it named and some of it not, and we do the best we can to live in spite of that fear. We have to because there are bills to pay, shifts to work, and people to care for. No one has the luxury to be paralyzed by fear. When you are given a diagnosis, your fear of the unknown multiplies by about a million. You do not want to die and you want to close down as many avenues to death as possible. Even when the diagnosis is not fatal, the threat that it might become fatal is enough to send you into survival mode. Tell me that if someone said to you "There is something in your breast that could kill you", you would say "Okay, maybe I'll go on a juice fast" or "Maybe I'll smoke more weed" and not "Chop it off immediately". Yes, I could experiment with the latter options before opting for the first one, but that assumes that I can do so and continue to live my life without allowing fear to rob me of my joy. I don't think I could.
Unless you yourself have been cured through an alternative treatment -- you didn't watch a documentary, you didn't hear about it from a friend of a friend, you didn't read a blog -- then it is not helpful to suggest one to someone who is doing their best to not be overwhelmed by fear. It is the same as telling a non believer -- which I am -- that God will heal me. It requires a faith I do not have. I have read everything. I have googled the phrase "alternative treatments for DCIS" a hundred different times and all I find are more unknowns. Is having a mastectomy the best way to treat DCIS? No. It's fucking awful. But I also know with 100% certainty that it won't kill me and that certainty matters.
I learned that the lump in my breast was not benign and that I would have to have a mastectomy in the same appointment. They also used words like "non-invasive" and "pre-cancerous" though; words so completely at odds with the reality of removing my entire breast that it was hard to grasp the enormity of that treatment. Weeks and many appointments later, I understand the enormity now.
I begun to understand when my doctors looked me over in all my appointments, while I was fully clothed, and said, "It doesn't look like you have enough fat for the autologous reconstruction"; it hit me fully when the plastic surgeon was pinching various parts of my naked body and said "oh dear, there's not enough fat here" -- the first time I've ever heard that said like it's a bad thing. I learned in that appointment that breast reconstruction after mastectomy is nothing like getting an elective cosmetic breast surgery (a thought I'd be comforting myself with) and that if you have to have one, the autologous is what you want. Then, at least, you have a breast made up of fat tissues from your body that will behave in a similar way to your other breast. With an implant surgery, I will have a right breast that will look nothing like my left. Oh, and I won't have a nipple. You really don't realize how attached you are to your nipples until you're not allowed to keep them because they might kill you. Also, if I'd had the choice, I'd would have like to keep my right over my left breast because at least the right doesn't have my ex boyfriend's initial tattooed on it.
But I don't have that choice. I have very few choices. In fact, my biggest choice now is dependent on getting my genetic test results back, where I'll then get to decide whether I want to have a bilateral mastectomy or just have one breast removed. I'm at the point where getting BOTH breasts removed seems like good news because at least my fake boobs will look the same. All of this is happening while the phrase "you don't even have real cancer" loops constantly in my head. It seems absurd that I even have to make these choices. And yet, here I am.
I have to face the reality that I'm replacing a breast that might kill me for a noticeably fake breast that I might hate. I am doing the best I can with what I know. I have to make decisions now at 25 that 35 year old, 45 year old, 65 year old me will have to live with and I feel the weight of that. But I'm also trying to make the choice that lets 35 year old, 45 year old, 65 year old me live. I've tried to simplify it down to one question and when I ask, "Do you want to keep your breast or do you want to live?" there really is only one choice.