Basically, after my official diagnosis, I experienced utter confusion, anxiety, distress, overwhelming anticipation and fear until I met with a breast surgeon for my first consultation. Up until that point, I had just been dealing with the doctors at the radiology place where I was receiving my biopsies, MRI, mammograms, etc. At the time, I was looking to them for guidance and to interpret my biopsy, pathology report, MRI results etc. Based on my experience, the radiologist can look at a scan and come up with what that means in terms of basic characteristics and stats, but they were unable to put those findings into the broader context and interpret them in a way that was necessary to provide perspective and any type of reassurance.
So basically, I was pushing these doctors for answers, because at the time, they were the only people I knew to go to, but the answers they gave me really only contributed to my fears, because they weren’t put into the proper context. They kept saying to me, wait until this nex scan and then later, wait until you meet with your surgeon, see what they say. I don't think they were doing anything wrong, but to me, as a patient with a distressful and scary diagnosis, this was extremely frustrating to me at the time, and, I think it's a flaw in the system.
Once I met with my first surgeon (I keep saying “first” because I met with three) I felt soooooooo much more relieved. Even though after meeting with them I was facing major decisions including, mastectomy or lumpectomy + radiation, I felt so much better because the surgeon was pretty much like, you’re not going to die and you will be just fine. Your cancer is 100% treatable.
Just hearing that made me feel immeasurably better. Because really, up until that point, you’re diagnosed with cancer and you’re like..okay how serious is this? Will I die? What’s going on? At one point, one of my radiologists told me they wouldn’t be able to ascertain the stage of my cancer until after surgery (which is technically true) but when you meet with a surgeon, they can make a pretty good guess as to what ballpark you’re in and that is so helpful in terms of understanding what you’re dealing with.
So, based on my experience, I would advise people to get in with a breast surgeon as soon as possible after your diagnosis. Once you get in with a surgeon, they will outline your treatment options, will (or should) recommend plastic surgeons they work with, who you’ll also meet with, recommend additional testing, and you’ll begin to determine which surgery and/or treatment option will be best for you.
The utter confusion at this stage will end, and you’ll be able to go on and focus on your treatment options. At this point, once I started meeting with surgeons, I felt much more in control of my situation.