I am scared. Not just scared…I am terrified.
About a month ago, I noticed that my breasts were sore. Because I have fibromyalgia, I’m used to odd body parts being randomly sore, so I didn’t think much of it until I realized it had been a week and they were still hurting. I told my husband I was going to call the doctor, but then promptly forgot.
The third week, they were much more sore, but I still hadn’t called my doctor. I did, however, get a reminder call from the place where I go for my mammograms, as it was time for my yearly. My mother had breast cancer, although hers was found early enough that it was considered stage 0. Even so, it puts me at higher risk; add in my risk for melanoma from my father’s side and I’m pretty much screwed. I think I was avoiding calling my doctor because I didn’t want to hear the bad news. Typical reaction for women who find a lump or some other symptom of disease…we figure if we don’t get an official diagnosis, we don’t really have whatever it is.
By Saturday night, my breasts were in serious pain. I couldn’t feel any lumps anywhere, but I did notice that when I pressed around my areola, there was a distinct thickness to the underlying tissue. On Sunday, I started researching, which is something I am VERY good at. I began with the myth that if there is pain, it can’t be cancer. Not true. Pain is a sign of advanced cancer.
Next was the myth of the lump. It’s not cancer if you don’t have a lump. Not true. Some cancers are interstitial (between the tissues); this is when I found articles on inflammatory breast cancer. With IBC, there is no lump in the early stages, although there is usually thickening of the tissue. When a lump is found, it usually appears very quickly. It’s not there one day, and is there the next. Other symptoms of Inflammatory Breast Cancer are:
- Changes in the appearance of the nipple
- Itching of the nipple or breast
- Pain and soreness of the breast
- Tingling in the breast and nipple, much like the feeling of milk “letting down” during breastfeeding
- Swelling of the breast that does not go away with antibiotics
- Redness and warmth that does not go away with antibiotics
- A pink or red rash on or near the breast, or a dimpled appearance in the skin of the breast, resembling orange peel
- Swollen lymph nodes
- Discharge of fluid from the nipple, particularly fluid that looks like puss or has blood in it
IBC is the most aggressive, fastest spreading and deadliest form of breast cancer, with a five year survival rate of 40%. It is also extremely rare with an occurrence rate of 2% to 6% of all breast cancers. It is often misdiagnosed in the early stages as mastitis, as all the early symptoms mimic mastitis. It’s also very difficult to diagnose in early stages because it doesn’t show up in a mammogram, ultrasound, or MRI until later. The lack of early diagnosis is what leads to the high death rate. It is almost always considered Stage IIIB when found, or Stage IV if it has metastasized. Early diagnosis depends on needle biopsy, especially from different parts of the breast. Unfortunately, most doctors will not order a needle biopsy unless there is a lump, hence the death spiral.
Because IBC is rare, a radiologist may have never seen it anywhere other than a textbook. Doctors often see only one or two cases in their careers. This is why it is vital to get a second opinion, and even more vital that one finds a cancer research facility that specializes in breast cancer.
After all my research on Sunday, I began counting down the hours until I could call my ob-gyn. He’s been my doctor for almost 25 years, so I felt like I could trust him with my life. Since the mammogram place opens before my doctor’s office, I called them first. They asked if this was for just a yearly, and I said no, that I was having severe pain in both breasts. Normally, I don’t need a doctor’s order to get a mammogram, but they said I needed a diagnostic as well as an ultrasound, which do require doctor’s orders. They did, however, make an appointment for me for later that morning, assuming I could get the order faxed over. When I finished that phone call, the doctor’s office was open, so I called and explained my symptoms, and asked for the diagnostic orders. The office person said she’d have someone get back to me.
An hour later, I called back, explained that I had managed to get a same day appointment at the screening place, but still hadn’t heard from them regarding the orders. Again, she said she would have someone call me back. Finally, an hour before my appointment, she called to say that the orders would be faxed to the screening facility.
Of course, when I got there, they didn’t have any orders. Worse yet, they had no record of my having made an appointment. This particular screening facility kicks ass, though, as they called the doctor and had the orders in a matter of minutes. They were also able to work me in; I literally had to wait five minutes before I was seen.
One of the technicians came out to get me, then took me into a little locker room and told me to put on the robe with the opening to the front. I kid you not, I could not for the life of me figure out how to get it on so that it opened to the front! No matter which hole I started with, nor which arm, I still ended up with the opening on the side. I finally gave up and just went to sit in the second waiting area.
The technician called me back to the mammogram room, and told me to take off the right side of the gown. I realized it didn’t matter where the opening was, as I had to remove the damn thing anyway. She apologized for how cold the machine would be and explained the procedure, which I already knew, but it was nice to know that she also understood how it worked. Once she took all the different angles, she sent me back to the inner waiting room while the radiologist read the scans.
As I sat there, I looked around at all the other women in their blue robes. One by one, they were called away for their procedures until it was just me and a 70 year old woman. I asked her if this ever gets easier, and she said no. She was there for her routine screening, and I explained that I was not; that I was sure something was wrong. We chatted for a few minutes until the technician came back to say the radiologist wanted a few more scans.
We went back into the mammogram room and she took the second set of scans, then was really nice and showed me the difference between last year’s and this year’s. There was a very obvious, large white mass in my right breast. She said that the radiologist wasn’t too concerned, as at my age, there is often a natural thickening of the tissue, but that they definitely wanted an ultrasound, just to be sure.
I somehow found my way back to the inner waiting area, feeling stunned and sick to my stomach. I only had to wait a couple of minutes before they took me to the ultrasound room. Honestly, that was more painful than the mammogram, because she had to put so much pressure on my extremely sore breasts. She took at least 20 pictures of each breast, while I watched to see what she thought was important enough to snap and measure. Even I could tell there were no cysts, and the white mass was diffusing to the surrounding tissue.
When she was done, she gave me half a roll of paper towels to wipe off the sonogram goop, and told me to wait (again) for the radiologist to read the scans. Less than ten minutes later, the first technician came to get me, and explained the results as she walked me back to my locker area. She said the radiologist wasn’t too concerned, but that I should come back in six months. I told her that if I have IBC, I could be dead in six months. To her credit, she did not roll her eyes, but said the radiologist suggested I have a breast MRI just to make sure.
I called my doctor when I was done, relayed the message that the radiologist suggested a breast MRI, and asked if my doctor would order it. The office woman said she’d have someone call me back. Sigh. She did call back rather quickly, and said the doctor was willing to talk to me if I wanted. When he came on the line, he said he’d order the MRI, but he didn’t think I needed it. I agreed and said I needed a needle biopsy. After a few moments of explanation, he agreed to the biopsy, but told me there was no need for me to go in to see him, as there was nothing he could do for me. Seriously! What if I have some kind of infection, or reaction to something? How could he dare to roll his eyes at me when he had neither seen nor examined my breasts? In the 25 years that he’s been my doctor, I’ve never gone all hypochondriac on him, so I felt I deserved to be taken seriously. I was frustrated and irritated, and reminded of what it was like when I was trying to convince my old GP that I had interstitial cystitis and fibromyalgia. He insisted that I didn’t, and that I just had depression (i.e. it was all in my head). Of course, I did have IC, I did have fibro, and I did change doctors. Fortunately, that whole experience taught me to be my own advocate and always get a second (or third!) opinion.
When I got home, I started looking for a doctor here who specializes in IBC. It turns out that one of the top research facilities in the country is about ten minutes from my house. I called them and explained my situation and my fear that it was IBC. The receptionist listened to my symptoms and my description of my scans, and said, “You need to be seen immediately. We’ll order your scans to be sent here, and someone will call you back with an appointment time either this afternoon or tomorrow morning at the latest.” That’s when I lost it. I started crying and blubbering, “Thank you! Thank you so much!” while she made comforting murmuring noises at me.
She was as good as her word, as I got a call just a few hours later with an appointment for Monday the 24th. That’s also my daughter’s birthday. Not exactly how we planned to spend it, but at least I’ll know something by the time we go out Monday evening.