“The road goes ever on and on” ― J.R.R. Tolkien, The Hobbit
Good things are coming down the road. Just don’t stop walking.” –
Robert Warren Painter, Jr.
Whoever said patience is a virtue never had cancer:
I am a person that likes to take life challenges head on with a plan in place. I don’t do the unknown future thing very well. So one of the hardest parts of this journey for me has been not being able to see around the next bend in the road.
Deep down, I know that my doctors are doing the best thing by doing things one step at a time. However, a huge part of me is screaming, “I’ve been to the doctor eight times, spent a lot of money in co-payments, have had mammograms, sonograms, MRI’s, and consultation after consultation, after consultation, and have known about this cancer for almost a whole month, and I still don’t know anything!
So far I have seen my general practitioner (numerous times), a radiologist, a surgeon, an MRI specialist, and an oncologist. Every single one of them has handed me a larger stack of paperwork to fill out than the one before. They all start with the same questions about name, age, date of birth, address, contact numbers, contact emails, emergency contacts, have I been given the privacy notices, will I pay for what insurance doesn’t pay, what meds am I on, what am I allergic to, what surgeries have I had, who am I related to that has had cancer.
OVER and OVER and OVER.
I keep wondering why they don’t just share the information!
When I arrived at the Joe Arrington Cancer Center (JACC if you want to be cool), I got more paperwork to fill out than I’ve ever received before. Page after page after page after page after page of paperwork. I was still doing it when a nice woman in pink showed up and told me she was my “breast health navigator.”
The Breast Health Navigator
God has a sense of humor. I chose to compare cancer to a road, and the first person they send me at the cancer center identifies herself as my navigator. It is a nice reminder that God is still with me in this journey.
My navigator’s name is Tiffany, (I admit, I got a giggle out of a pink clad Tiffany too), and she was my favorite person today, outside of my daughter who arranged a baby sitter and drove the hour from her home in a small town near me to stay with me through this.
Tiffany had looked at the reports from all the doctors, and came in to explain to me a lot of the details that she suspected doctors and nurses might not explain clearly when they spoke to me. She did an amazing job of explaining things, and I learned the details of my diagnosis from her. Though the doctor was amazing at explaining everything, Tiffany was equally as amazing.
My cancer is:
- An Invasive Ductal Cancer (not great news)
- It is Estrogen Receptor (ER) positive (actually good news)
- It is Progesterone Receptor (PR) positive (actually good news)
- It is HER2 negative (really good news)
Keep in mind, what follows is my interpretation of what I’ve learned in this journey, and I’m not a doctor. I am an informed patient who knows medical terminology, and I read science journals for fun, and I drive my friends who are doctors and nurses and research scientists insane with questions, but I am not a doctor or a nurse.
This is my understanding of things, without all the scientific jargon.
Cancer cells are, in the words of Mel Brooke’s Igor, “Abby Normal,” cells. Normal cells are like well behaved children. They stay where they belong most of the time, they generally only grow and reproduce when the body needs them to do so, and they listen to the signals from the body, and when they grow up they have a specialization. Cancer cells are the brats of the cell world. They have a will of their own. They reproduce without any concern for others, and they push around the normal cells, and they ignore the orders to stop what they are doing.
Ductal means it started in the milk duct. Apparently 80% of all breast cancer is ductal.
Invasive does not mean my cancer is running a blitzkrieg on my body. It means that some cancer cells made their way outside of the milk duct into the normal breast tissue. I imagine an over-energetic toddler who climbed out of the playpen when you weren’t looking and woke up all the other kids. They might not do any serious damage if you get to them quickly enough, but you better grab them fast, and get a better playpen.
Estrogen (or oestrogen for your Brits who read this) and Progesterone are common female hormones. They send signals to certain normal cell protein receptors and basically turn the cells on and off like a chemical light switch. They tend to be buddies who like to hang out together. In regards to cancer, ER and PR are buddies that keep each other out of trouble they would get into if they were alone.
ER Positive Facts
- Approximately 2 out of every 3 breast cancers are ER positive.
- ER Positive cancers respond well to hormone therapy. Tiffany described hormone therapy as starving the cancer cells.
- ER positive cancers have a 10% higher survival rate than ER negative cancers.
How I think of Estrogen Receptors
They are brats that use estrogen to flip a computer switch they shouldn’t be messing with. This tells the cancer cells to come on, reproduce, divide, etc., and not to stop. I like think of it as telling a computer to find pi to the very last number. You don’t want to do that if you need the computer any time in the near future.
PR Positive Facts
- 65% of ER positive cancers are also PR positive.
- Approximately 2 out of every 3 breast cancers are PR positive.
ER Positive and PR Positive Facts (I am double positive)
- These cancers usually grow more slowly than other breast cancers
- They respond very well to hormone therapy
- Per a British study, these people have the highest survival chances.
HER2 (I am negative and that is good)
- This is the human epidermal growth factor receptor 2 gene.
- High levels of HER2 tend to appear with faster growing tumors
- High levels of HER2 tend to appear with tumors that come back.
- Being negative for HER2 is a good thing.
Then came the doctor and the reports
I do like the oncologist.
I like most things about the Joe Arrington Cancer Center.
They do some things very, very well, like Tiffany, and free valet parking for patients, and volunteers who walk you to the doctor’s office.
What I didn’t like about the medical part of this journey
Constantly Changing Opinions
Remember- I started out this whole journey with a mammogram that resulted in the official reports that it was a “2 cm tumor in the right breast, one lymph node affected, not in the left breast, not on the chest wall, stage 2.”I loved those results. I was very happy with those results. I wanted to keep those results.
Then I was sent to a surgeon who said they didn’t test enough to know what the left is like, and they can’t guarantee it isn’t on the chest wall, it is not 2 cm it is 2 cm by 4 cm, but still probably still a stage 2, possibly a 3 though, we need more tests.” I wasn’t as crazy about that news, but it was still okay. So off to the MRI I went.
Then I was told, “MRI says you have a busy left breast, we need another sonogram, and a biopsy.” I wasn’t happy to hear about a “busy left breast,” that needed more investigation.
Then I was told the MRI and second sonogram cleared the chest wall, cleared the left breast, looked like it was still just in the one lymph and right breast, but there was something that might be a benign cyst in the liver, they’d look at that later. Later, to me, said, “don’t worry about it.”
Then the Biopsy was done. That was the least traumatic experience I’ve had so far.
Then I got the biopsy results via a phone call. Left is good. Wall is good. An aggressive malignant cancer, but still a stage 2 and it looks like it was caught early enough to be treatable. Off to the oncologist. This was both bad and good news. It was good in that I expected it to be worse news. It was bad in that it confirmed it definitely is a malignant cancer.
TODAY IT CHANGED AGAIN
Today Tiffany said “5 cm”, not 2, not 3, not 4. She said 5. Five is that line they draw between “be optimistic with good reason,” and “okay, this is very bad news, but don’t give up hope.” If you cross that line to anything over 5 your doctors stop talking “when” you beat it to “if” we beat it. They stop talking about “some people” making it past 5 years.
Today the Oncologist said “2 cm by 3 cm by 4.5 or 5 cm”. I liked 4, because 4 was 1 cm away from that nasty “do not cross” line down the middle of 5.
They are reading the same report all the others have read, and coming up with a larger tumor size. By all the others, I mean the General Practitioner, the surgeon, and several pathologists who read such things as MRI’s and sonograms and biopsies. They didn’t get some “new test results”. They aren’t reading different results. They are all just reading it differently. Frankly, this shakes my confidence in their reading comprehension skills. Maybe they are like those teachers we all have who have to change at least one thing on every paper they touch, just so they can say they changed one thing on every paper they touch.
Fortunately, they gave me a copy of the final biopsy report. It says the left breast and wall really are clear. It took a very round about way of saying it, but I used to work at the Health Science Center, and I know that doctors love that round about way of speaking so I stayed calm as I wandered through it all, and the bottom line is they said the left looks good and the wall looks good.
ALL of that is good news – but….. Ah yes, but … but I have a “hypointense lesion” on the liver and so they want to do a PET Scan.
IF.. they had asked, I could tell them that for awhile I was taking too much aspirin, because I didn’t know aspirin was dangerous like Tylenol is.
IF… they had asked, I could point out that I had Rheumatic fever in college. A very serious case of it in fact.
Nothing on any of that huge stack of paperwork asked about things like that though!
They would still do a PET Scan, but I wouldn’t be scared to death by their attention to the liver. Now, I get to spend something like 7 to 10 days wondering if this cancer has spread already. That is 7 to 10 days thinking, “They’ve had an ENTIRE month to look at it and STILL HAVEN’T started a treatment!” They have given cancer an extra month to plan its attack. They are saying, “it probably hasn’t,” and “we expect to find nothing,” but “we really need to look at this.”
The Oncologist also marked the report as “at least a stage 2,” not “a stage 2,” but “at least” a stage 2. The difference is percentages of 5 year survival rates. I want my stage 2 to be a firm stage 2. Right now, statistics show that 93% of women with a stage 2 breast cancer live “at least” 5 years after the diagnosis. Statistics show that 72% of women with a stage 3 breast cancer live “at least” 5 years after the diagnosis. I want my extra 21%. I want my low A, not a low C. FORTUNATELY, I know that the “5 year survival rate,” doesn’t mean “you are going to die in 5 years.” A lot of people do NOT know that. A lot of people are walking out of doctors offices today and doing just like my grandfather did when he was told he had cancer. He went from the doctor to the funeral home and planned his own funeral because he thought he had 6 months to live. See my next blog post about statistics.
BE CAREFUL WHO YOU TALK TO
I paid over $112 today to have a woman talk me into taking a test I didn’t want to take.
Note: that is not the price of the test. That is what they charged me to listen to someone talk me into taking a test I did not want to take. The actual test might run as high as $475 out of pocket.
The doctor suggested I consider genetic testing because it would help him know how aggressively he should approach my treatment. I don’t like the idea of genetic testing. I am well aware of my family history, but if the doctor thought it would help I would consider it. He told his nurse to page the genetic counselor. I assumed to explain the process to us.
I had no idea that this was an official, billable consultation, until she walked me up to a desk afterwards and told them to bill me. Until that moment I had no idea I owed her a dime. As it turned out, I owed her $112 worth of dimes.
As I said earlier, the actual test could end up costing up to $475 out of my pocket. I know this because during the consultation the woman told us that “if the company calls you and says you owe more than $475 after insurance, tell them not to do the test, and to call me, because I know I can get it for you for just $475.00.” You would think she might have mentioned, “Oh, and talking to me right now is costing you $112.”
She spent a great deal of time trying to talk me and my daughter into genetic testing. I don’t like the idea at all. I am not trying to talk anyone out of it. I am only stating my own personal feelings in relation to myself. I know all the things they say, I’ve heard them a thousand times, but the fact is, knowing I probably have some kind of genetic predisposition to cancer is not news to me. I figured that one out on my own long ago.
I always said until they can tell me how knowing that I have that gene improves my survival rate I’m not doing it. She spent a long time trying to convince us it will improve survival rates (and by the way, never did convince me, but I do want my doctor to know whatever HE thinks he needs to know).
She told us that this will cause them to be more proactive in following me or my children if we do test positive for the gene. Well, I heard that all of my life, and I followed that most of my life. I have had a lot of false alarms, based, largely, on the fact that my mother had cancer. Anything even remotely not like 99% of the people in the world that showed up on some medical exam instantly resulted in “you probably have cancer,” and “we need these very expensive tests,” and “we don’t want to scare you, but you need to be terrified,” conversations.
The bottom line of that is that the panic over my mother’s death by breast cancer that doctors had resulted in a negative affect behavior on my part. The medical overreaction started when I was in my 20’s, and I got sick enough of the overreaction that I started avoiding all medical testing. Period. I don’t recommend that. It was childish on my part, but I was so tired of being scared to death needlessly and it was affecting my ability to trust doctors.
I used to faithfully do mammograms, pap-smears, full blood workups, all the proper testing, every year, just like they wanted. But time after time after time I had some doctor or pathologist go into a panic over something minor on some test, demand lots of other tests, and just generally stress me out after costing me and my insurance company thousands I didn’t have, and then going, “Oh, heh, heh, there was nothing wrong after all. Our mistake. Go home, be happy.” Eventually I decided the stress from the tests and from the cost of the tests had to be worse than cancer itself. I did my self-exams, but I was sick and tired of the panic because my mother had cancer.
Today, after the $112 consult just to tell me, “we like genetic testing” I’m less trustful of talking to anyone at the cancer center if I haven’t expected to be asked to talk to them. advance. I am actually wondering if I’ll get some kind of bill for my “navigator” now. I may start greeting people with, “Hello, my name is Sharon, what is talking to you going to cost me? Do you bill by the hour or visit?”
WHAT IS A LIFE REALLY WORTH?
The bill to see my oncologist was the mere $40 co-pay my insurance requests. I find it ironic that I paid $40 to the man who will be responsible for saving my life, and $112 to the woman who talked me into a test I didn’t want.
THE VAMPIRES ARE BACK
Next on the agenda was the blood draw. They are running the usual complete blood tests that you generally get at any annual physical exam, plus a blood test that tends to help detect liver cancer, and one that tends to help detect lung cancer, and the genetic test is a blood test. She said they can do a saliva test, but it is less accurate. The doctor was careful to tell me he doesn’t expect me to have either liver or lung cancer. He is just covering the bases. All in all, they took 5 vials of blood today.
NO WONDER THEY GAVE ME AN ADMISSION TAG
When I first checked in at the desk today, they gave me an admission bracelet like hospitals do when you are an in-patient. In fact, it says, “date admitted” on it. I wondered why they did that since as far as I knew, they hadn’t planned any procedures for the day.
I walked into the center at approximately 9:30 a.m. My daughter and I walked out at approximately 2:45. I understand the admission tag.
Total I paid in co-pay today: $152.00
Total information I learned today? It is invasive (knew that) ductal (didn’t know that) cancer (knew that) , and it is ER/PR positive, and HR2 negative (didn’t know that). They want to do a PET/Scan “sometime” (knew that).
Appointment scheduled for PET Scan – Not yet. They’ll call me.
Plan of action for treatment – They’ll let me know after the PET Scan.
Frustration level – High.
Level of gratitude that God, my family and my friends are still with me – Higher than the highest mountain.