I feel like a lot of what I say on this blog is about Parker and Kate. And I like it that way. They take up the majority of my thoughts and my day to day life revolves around them. This post, however, is not about Parker and Kate. It's about me. And my boobs. If this gives you the squeamies, then you really should stop reading right now.
I guess you could say I have a history of breast cancer in my family. My mom was diagnosed at the age of 25 and lost her battle with breast cancer was she was 27. Her mom (Grammy) was diagnosed at 66 and is currently cancer free! Grammy's mom was diagnosed when she was 44 and died when she was 45. Her mom (my great-great grandma) died at 56 of "pernicious anemia," which apparently is a catch all diagnosis and there has been some suspicion that she may have actually had some form of leukemia.
I think I was around 21 when I got my first breast ultrasound and I've had several since then. It started getting a little tricky when I got pregnant with Parker because you can't have any screenings when you're pregnant and you have to wait six months after you stop breastfeeding before you can get screened again. So, the window between when I stop breastfeeding and when I want to get pregnant again is rather short. I knew that I'd have a lot of initial appointments with various doctors because I'm new to Kaiser (my healthcare/insurance provider). Well, kind of new. Actually, I'm a returning patient after a several year hiatus. Anyway, I knew I'd have a lot of appointments, but sheesh, I feel like we're starting to verge on ridiculous here. So far, these are the appointments I've had:
Appointment #1: Met with my primary care doctor for an ultrasound referral. She also referred me to see a genetic counselor to discuss genetic testing. This is the one and only appointment I took Parker and Kate to. They were less than angelic.
Appointment #2: Went in to get an ultrasound, but was turned away. Apparently they no longer perform ultrasounds as an initial general screening. They weren't sure how I slipped through the cracks and the appointment got scheduled, but the radiologist told me that they only do targeted ultrasounds if, after getting an MRI, something suspicious is found and they need to follow up with an ultrasound to get a better overall picture.
Appointment #3: Meeting with a genetic counselor. I filled out a questionnaire prior to the meeting and during the appointment she asked me for further details and recommended that I be on Kaiser's high risk breast cancer screening regimen.
Grammy has gotten genetic testing for the major breast cancer genes (BRCA1 and BRCA2). She does not have a mutation of these genes and so it's assumed that I don't either. In the next month or so she'll get tested for a host of other breast cancer genes. If she does not have a mutation at these gene sites, it will be assumed that I don't either, but if she does, then I'll also get genetic testing done. The genetic counselor said that based on the early onset breast cancer of both my mom and great grandma, she strongly feels that the breast cancer is familial and due to a heritable gene mutation. Purely based on my family history, she said that I have a 34.1% chance of developing breast cancer in my lifetime.
I am happy to get the genetic testing done, although I'm not sure how much that information will change my approach to managing my risk. She did mention that if they do find a mutation, insurance is more likely to cover the cost of a double mastectomy, but she also said that based on my family history alone, I could fight for coverage of the procedure. Maybe if I knew I had a mutation I'd be more apt to do it sooner rather than later. I don't know. I want to be able to breastfeed my babies. Paul is all for a double mastectomy. He calls my boobs the ticking time bombs. I know they cause him stress. He has recently lost sleep over all of this and told me that he has a plan for what he'll do if I die. Ugh. So morbid. This may all be harder for him than for me. I have had an entire life time (well, since I was four) to consider the possibility of getting breast cancer. It's kind of a new thing for him. For the most part, I feel like if I'm going to get breast cancer, let's just shoot for early detection and deal with it from there.
Because there is so much research being done on breast cancer, she said that I should check back with her every two years to see if there have been any new gene discoveries that I could potentially get tested for.
The genetic counselor said that I should definitely get an MRI. However, the official referral had to come from a "breast care specialist," so the genetic counselor gave me my next a referral.
Appointment #4: Appointment with Breast Care Specialist. This woman was awesome. She's a nurse practitioner and will be my "go to" from here on out with regards to all things breast cancer. She explained that I should meet with her every six months unless I'm pregnant or breastfeeding. She gave me a referral for an MRI and said that I should plan on getting one every year (unless pregnant or breastfeeding) and that once I'm 30 years old, I should get a mammogram yearly as well. Mammograms aren't a good diagnostic tool for dense breast tissue so they aren't generally recommended for women younger than 30.
Since women at risk for breast cancer are also at risk for ovarian cancer, she also put in a referral to see an OBGYN to discuss a hysterectomy. After, of course, I'm done having children.
She gave me a referral for an MRI and explained that I would need to get a blood test done prior to the MRI appointment. They inject you with a contrast dye during the MRI and your kidneys need to be working properly to flush the dye out of your system.
UCSD does the MRI because Kaiser does not have an MRI machine for breast screenings. She said that if the MRI found anything, I'd know within a few days, otherwise it might take several weeks before I heard from her.
Appointment #5: Blood Test. (My kidneys work!)
Appointment #6: MRI. I have to say this was not the most fun thing I've ever done. You lay face down on a table with holes cut out of it where your boobs go. You are instructed to not move for about 40 minutes and then they push the table back into this cave thing. Even with earplugs in, it was very loud and the machine shook at times. I kept thinking that if there was an earthquake I'd never know. At around minute 30 my face really started to hurt and I was wishing I could just adjust myself to get a little more comfortable.
Appointments #7 and 8: A few days after my MRI I got a call from a Kaiser scheduler saying that I needed to schedule a follow-up ultrasound for both breasts. I scheduled the ultrasound and then called my Breast Care Specialist to get more information on what the MRI results were. She only works part time and I wasn't able to get in touch with her before my ultrasound. Those few days before the ultrasound were a bit nerve wracking. It's like when you first find out you're pregnant- you just can't stop thinking about it. I kept going over different scenarios in my mind. I knew that MRIs are very sensitive- they pick up any lump and bump in the breast that are not necessarily cancerous, and are known to give false positives. So I knew that a follow up ultrasound was not necessarily a bad thing, but it also wasn't a good thing.
UCSD had ordered the ultrasound for 10:00 on my right breast and 12:00 on my left breast (i.e. location, not time). A technician did an initial examination, printed off some pictures, then went and showed them to the radiologist and he came in and did the exam himself. He explained that USCD wanted a biopsy done of what they found through the MRI. There are two choices when doing a biopsy: you can either do an MRI-guided biopsy, or an ultrasound-guided biopsy. The MRI one is more difficult and less comfortable for the patient and the ultrasound one is relatively simple and not uncomfortable, so the hope was that whatever it was that they saw would be visible on the ultrasound. He said that he couldn't see anything.
He then recommended that I get a mammogram done. It would help him to have an overall picture of my breasts. A mammogram is more discerning than an MRI, but often doesn't pick up on very small tumors. Even though I'm relatively young (dense breast tissue), he still thought it would be a good choice. So I said, yes, Doctor, I'm ready to get my boobs squished! and I got the mammogram done right then and there.
Surprisingly, the mammogram didn't hurt at all. Once the radiologist looked at the x-ray, he came in to discuss it with me. The first thing he said was, "Your breast tissue actually is not dense, so the mammogram worked really well." Now, I have to say that whenever doctors would talk to me about younger women having dense breast tissue I would think to myself, "Man, if what
I have is dense, then old lady boobs must feel like a bag of applesauce." So when the radiologist said that to me I thought, "Yes, my bra that's working overtime to keep these ladies off the floor could have told you that." Truly, breastfeeding has not been kind to my physique. Anyway, he said that he couldn't see anything on the mammogram either, which I guess is a good thing.
The next step is to schedule an MRI-guided biopsy and then hopefully that will be the end of things for awhile. Yes, it's been a lot of appointments, but I'm really grateful that the doctors are being so thorough. What's really great about Kaiser is that they as a healthcare system are the providers of their own insurance, so it's beneficial for them to keep you healthy. I've hardly had to pay anything out of pocket and I have had a positive experience with all the people I've met with.
