A Long Road Ahead
Fear of cancer has been the monster in the closet of my life for most of my life. In August 1979, my mother died due after losing a battle with an aggressive breast cancer that was diagnosed in July of 1974. I’d also lost a beloved grandfather to pancreatic cancer years before mother’s cancer was discovered. I knew what the disease could do, and I knew what treatment of the disease can do. So all of my life I’ve had a larger -than-the-average-person fear of cancer.
In October 2016, my fears became reality. I discovered a very large lump in my right breast. I’d recently taken a fall on a bicycle and the handlebars had caught me on my right breast. When the bruise wouldn’t go away, I started getting worried and realized that there was a large lump in the breast. I know that it must have been there a long time, without being noticed, but I did self exams on a regular basis, and it hadn’t been noticeable just a week earlier. So I made an appointment with a doctor, hoping that he would just tell me I was paranoid and send me home. Instead, on October 10, 2016, the doctor said he was concerned, and sent me for tests to be run the very next day.
October 11, 2016 – The Mammogram and Sonogram Results Are already In.
It is never good to be told “it looks like you might have a cancer, but we won’t know until the biopsy”. It is even worse to hear, at 4:15 PM, the day after you learn you have a suspicious lump, “The radiologist is really worried, it looks like a large tumor, it looks like it is in a lymph node, and we need to get you scheduled for surgery now! Go back to the radiologist, get him to give you a disc of his results, and take it to this address, that’s the surgeon who will take it out Monday. He’ll meet with you Friday to discuss it.”
Conflicting Medical Reports and Plans:
My doctor said the plan was for the surgeon to remove the lump, biopsy the lump, and then decide if they needed to take the whole breast. This would all take place on Monday, the 17th.
I was told it was 2 cm, based on the mammogram and sonogram.
I was told it wasn’t touching the chest wall.
I was told it wasn’t in the left breast.
I was told there was a “slightly” swollen lymph, but only one node.
I let my family and my employer know the plan for Monday. This was just a consult, so I told them not to take off work.
I requested prayers from friends and family.
My fear of cancer combines with my love of research. If anything about a cancer diagnosis is good, this was all actually good news. One lymph and a 2 cm tumor in this day and age is very, very beatable. It is low on the cancer rating scales.
I walked into the surgeon’s office confident it would all be fine.
Plan 1 was that this would be a surgical consultation to schedule surgery. It was a consult with a surgeon, but he had a better plan.
The surgeon looked at the reports, and did his own exam.
It is not 2 cm. It is 2 cm by 4 cm.
It might not be in the left breast also, but the original exams didn’t really explore those areas well enough to know.
It could be attached to the chest wall.
The lymph itself was 2 cm.
The only thing all the doctors agreed on was that it looked like a cancer, and that while no one can confirm cancer until they biopsy it, it met all the other criteria indicative of cancer: rough edges, mass not fluid, swollen lymph.
Given the new size report, and the possibility it had spread and they hadn’t picked that up, I was mildly worried. Okay, I was terrified. So I asked, “Are you thinking stage 4?” My wonderful surgeon said, “No, not 4. Possibly 3. Definitely at least 2, maybe a 3, but not 4. However, as certain as I am that it is cancer, until we get the biopsy, I cannot tell you if it really is cancer or not. I can only say it looks enough like cancer that I expect the biopsy will confirm what I already know.”
I admire his honesty, and I admire his optimism, and his insistence on waiting on official clinical news.
The surgeon wanted an MRI to confirm it hadn’t moved to the left breast or lung, and to perform a needle biopsy. Not exactly a calming suggestion, but he did tell me he didn’t expect to find that it had, he just didn’t want to miss something because it was not on the radar.
I notified family and friends, and set up an appointment.
Pothole in the Road – Can I actually have an MRI?
A few years ago I was diagnosed with eye problems and the eye-doctor had put shunts in to delay sight-loss caused by glaucoma. Those shunts came with a warning of, “if anyone starts talking MRI, hand them this card.” The office doing the MRI wasn’t sure if their equipment was safe for me or not, and had to do some research.
I was sent home with notes that I was definitely having a biopsy on Friday, but it was an Ultra/Sound Guided needle biopsy. If we could do the MRI they would scheduled it before Friday.
Sink Hole in the Road – MRI’s and Biopsies Cost Money
Many insurance companies try not to pay for diagnostic MRI’s related to cancer. They will only pay if a physician confirms the diagnosis officially, something they cannot confirm without a biopsy. The Affordable Care Act has caused some companies to pay for them in cases like mine, but the coding has to be done correctly. Ergo, whether I owed the full price of the MRI myself, or just the co-insurance of $100 plus 20% was the first of a long line of financial worries.
I have good insurance through my employer, but even good insurance has its pitfalls. At this point in time, I’ve already spent $100 in primary care physician and specialist co-payments. Even at just $40 each they add up fast when you see your own doctor several times, a radiologist, and a surgeon.
People hear that and think, “pfft, it is just $100.” However, on my budget, $100 is a lot of money. I’m single and have no outside source of income, but the $100 didn’t bother me as much as the fear of what was to come. On my insurance I would owe $100 plus 20% of the MRI, and then $100 plus 20% of the biopsy. I was still paying off eye surgery and dental surgery from the last 2 years.
So I asked what kind of money I was expected to have up front. This seems like a simple question. I shop all the time and when I ask the price, I get a number. ONE number. That is not how the medical profession works, apparently. I was told, “If your insurance will cover it, you only need your copay, and we bill $3,300, but if your insurance doesn’t cover it, we only charge $1,000, but you have to pay $500 up front.” So apparently it would be either $100 + 20% of $3,300, ($660) or it would “only” be $500.
Five calls back and forth between the facility doing the MRI and my insurance company, and some negotiating and I managed to come up with a figure of $279.00 due on Tuesday with the balance of the $660 to be paid out later.
What about Friday?
Friday, was the biopsy date. A this point in time I didn’t know if it would just be a biopsy or if the MRI results would lead them to do surgery on the tumor immediately. (That fear was based on my mother’s experience, and is unrealistic for modern cancer treatment, but was very real to me).
I wouldn’t have a plan until the results of the MRI being done on Tuesday, but I knew that at the minimum the biopsy would cost $100 plus 20% of whatever they decided to do on Friday.
It was all adding up, expense wise, very quickly, and my paycheck was not getting any bigger. I had no idea what it would all add up to, and no way of finding out until we had an official post MRI plan. There was no way of planning for the expense.
Panic set in. The doctor had already told me, flat out, I would do chemo. Whether it was before or after surgery had not been discussed, but chemo was absolutely in the future. Chemo medication averages anywhere from $1,000 to $6,500 a month per most of the information I could find.
So I made more phone calls to the insurance company. The news there was good. I had met most of my pharmaceutical deductible for the year. Insurance estimated I would only pay about $38 the first month of chemo, and then $10 a month until January. Insurance was drastically wrong, but I’m glad they were this time. That news eased my mind. If I had known the reality I don’t know how I would have taken it.
Conclusions at this point:
We need to advocate for simple, straight forward answers to simple straight forward questions.
And most of all, God’s got this.