A Long Road Ahead
In August 1979 I lost my mother to a highly aggressive breast cancer. She had been diagnosed in July 1974, with many promises, over and over, that they had it all. I’d also lost a grandparent to pancreatic cancer. I saw what the disease and the 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, I discovered a very large lump in my right breast. I know that the reality is that it was there and I didn’t notice, but I check often, and it certainly wasn’t noticeable just a week earlier. I’d recently fallen while riding my bike, and the handle bar had caught me in the same general area, so I assumed I had some under-the-skin bruising and swelling going on. When it didn’t go away, I decided to look into. On October 10, 2016, the doctor said he was concerned, and sent me for tests to be run the very next day.
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, “Your radiologist is really worried, it looks like a large tumor, 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:
I was told by my doctor that 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.
I was told that according to the mammogram and sonogram it was 2 cm.
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 swollen lymph, but only one node.
I let my family and my employer know what was going on so everyone could take off Monday.
I started some prayer chains.
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, 2 cm tumor, today 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.
The surgeon looked at their 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, but they didn’t exam the left well enough to know if it is or isn’t.
It could be attached to the chest wall.
The lymph itself is 2 cm now.
The only thing they all agree on is, it looks like a cancer, and while no one can confirm cancer until they biopsy it, they can confirm it meets all the other criteria. 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?” He said, “No, not 4. Possible 3. Definitely higher level 2 at least, 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.”
The surgeon wanted an MRI to confirm it hadn’t moved to the left breast or lung.
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.
First Pot Hole in the Road
I learned from him that many insurance companies will not 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.
We also weren’t sure I could have one. I had shunts put into my eyes to release pressure as part of treatment for an eye disease a few years ago. It comes with, “if anyone starts talking MRI, hand them this card,” warning.
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 can do the MRI they would scheduled it before Friday.
Sink Hole in the Road – Paying for all of it
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 co-payments. They add up fast when you see your own doctor twice, a radiologist once and a surgeon once.
People hear that and think, “pfft, it is just $100.” However, on my budget, $100 is a lot of money. I’m sure it is for many people. I had a lot of surgery on my eyes the previous year and was still paying off those.
So I asked about what kind of money I was expected to have up front, and was told, “Oh, just the copay.” Well, the copay for an MRi is $100, plus 20% of the cost of the MRI. So when they called to say, yes, I could have the MRI with my eye shunts, I asked, “what is the cost?”
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. If your insurance doesn’t cover it, we only charge $1,000, but you have to pay $500 up front.”
Five calls back and forth between them and my insurance company and I managed to come up with a figure of $279.00 due on Tuesday afternoon.
What about Friday?
Friday, I have the biopsy.
I might have a lumpectomy on Friday or a radical on Friday as well. I don’t know.
I won’t even have a “probably” plan until the MRI on Tuesday.
But the procedure there is also $100 plus 20% of whatever.
I have no idea what that might add to up, and no way of finding out, so no way of planning for it.
The doctor has told me, flat out, I will do chemo. Chemo medication averages anywhere from $1,000 to $6,500 a month. So, more phone calls to the insurance company. The news there, for me, is good. I’ve met most of my pharmaceutical deductible, so I’ll have to pay about $38 for the first month, then $10 a month until January. In January, the new insurance year starts, and I’ll be paying $50 a month. I have a few months to plan for that though.
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.