When I was in my early twenties, my lung collapsed four times before it was properly diagnosed. When it was, I was told that a spontaneous pneumothorax was a rare thing, and I turned up in the minority. Two major lung surgeries later (both before I turned 25) and I was cured. I had a suspicion I wasn't done with being weird medically though.
Here's a brief rundown of my fight with breast cancer:
- February: I had my routine mammogram.
- Soon after the center called to request I have it re-done.
- March: Re-take of the mammogram and an ultrasound.
- The attending radiologist said I should have a biopsy.
- Next came a phone call from my doctor, he said they found pre-cancerous cells. I fell apart.
- I met with a surgeon. He reassured me that the lab results from the biopsy showed I had something called an intraductal papilloma. Basically, there was a blockage in one of my milk ducts. Common, and in 95% of the cases it's benign. I breathed a sigh of relief.
- May: I had a lumpectomy, which is now classified as a partial mastectomy.
- The surgeon reported, when I went for the results, that I had something called encapsulated papillary carcinoma. It's very rare. So rare neither he nor the pathologist had ever seen a case of it. There were surgical margins, which meant there was still some of it left inside my breast. He presented 2 options, either go in for another lumpectomy, or have a full mastectomy. He said I could wait a few weeks, and during that time he'd consult with colleagues.
- I went to see an oncologist. The oncologist confirmed the cursory Internet research I'd done, encapsulated papillary carcinoma occurs in .5 to 1% of breast cancer cases. He had also never seen a case of it. He recommended full mastectomy. He also said because it was encapsulated I wouldn't need chemotherapy.
- June: I went back to the surgeon. He had spent ten days meeting with colleagues and the chief pathologist at the hospital. The pathologist said he wanted to review both results (from the biopsy and the lumpectomy) because he, the surgeon, and all the colleagues agreed that it seemed implausible that the diagnosis went from something benign to a really rare form of cancer. In the mean time, he said mastectomy was the way to go.
- I went to see the plastic surgeon. He gave me the rundown on what to expect for reconstruction.
- July: surgery scheduled for the 17th. On the morning of surgery, the surgeon came to see me in pre-op. He said that the pathologist had reviewed everything, and the diagnosis was changed. It was now considered common ductal carcinoma in situ (dcis). It was still a good prognosis though, because in situ means it is contained in the ducts. He expected they'd get all of it out, and that I'd be done.
- I stayed in the hospital two nights because the plastic surgeon (the most compassionate doctor I have in this whole nightmare) felt I needed more time to heal.
- Two weeks after surgery I went to see the surgeon, and the diagnosis changed again. They did remove an expansive dcis tumor. The surgeon quipped it was a "football field" (7.5 cm. According to a book the oncologist gave me, that's the size of a lime). There were no margins, so this time they did get it all. But...there was also a micro-invasive form of cancer both at the site of the dcis, and also in one of the four lymph nodes they removed. Prior to surgery they injected a radio-active isotope in my breast. During surgery they use a "Geiger counter" type thing to find what they call the sentinel node (the first lymph node in the chain). He removed two lymph nodes, and they were evaluated while the surgery continued. They looked "weird" so he went and got two more. This micro-invasive cancer (the cells were 1 mm in size) was only found in one of the four lymph nodes.
- I went back to see the oncologist. He had a hasty phone call with the pathologist right before seeing me (I heard him in the hallway). Bottom line, no matter how weird this is (the pathologist says in the report that it's "unusual to find micro invasive cancer with dcis, and that it raises questions") there was cancer outside of the breast, so the best course of action is an estrogen blocking medication, and chemotherapy. There's a website he used to show the odds, and the best odds for the cancer not coming back is a 6 month round of chemotherapy, and then the estrogen blocking drug for 5 years.
- I had a CT scan. Fortunately I finally caught a break in all this trauma, the CT scan was clean, no other cancer was found. This means that the surgery got it all. But, the chemo and the estrogen blockers are to help ensure it doesn't come back. Since I still have my right breast, this is the way to go.
I'm kind of a strange person. I tell people I'm not very curious. In other words, there are a lot of people who have wanted to take me under their wing and tell me exactly what they think will happen to me during chemo. I don't want to know. I want to find out as it happens. It might be different for me. Prime example of this is the tissue expansion process I'm going through. Countless people told me how much it would hurt, and that it's "worse than the surgery." I've found that it's not. Yes, it hurts, but it's not that bad. Believe me, so far nothing I've experienced has been worse than lung surgery...not even giving birth to a ten pound baby naturally!
What I recommend to all women is to get your annual checkup. I've had yearly mammograms since I turned 45. Even though this mass they removed was "the size of a lime"...I didn't feel it. The ob/gyn didn't feel it during my annual check up. I'm going to make it through this nightmare, and I'll be the one in five years saying "I made it."