Category Archives: Breast Cancer
Survival can be summed up in three words – never give up. That’s the heart of it really. Just keep trying. -Bear Grylls
I will go before thee, and make the crooked places straight: I will break in pieces the gates of brass, and cut in sunder the bars of iron – Isaiah 45:2
Cancer Statistics Don’t Mean What You Think They Mean
(This is post 4 of my cancer journey)
If you are on the journey of cancer yourself, or you love someone who is on the journey you are bound to catch yourself looking at “survival prognosis statistics,” and they will scare you to death.
In 1974 my mother was told that the survival prognosis for her breast cancer was 5 years post diagnosis. She lived 4 years and 11 months. Today they still define the life prognosis of cancer patients in terms of 5 year survival rates. Nothing has changed in that area.
When they say, “You have a 90% five-year-survival rate,” it appears to mean that 90% of the people with your type of cancer only live 5 years.” That is not what it means.
It appears to say 90% of the people diagnosed with that type of cancer this year will need to have their estate in order within 5 years from the date they were diagnosed.
It appears to say that more people are making it to 5 years, but we still can’t seem to get past 5 years for most of them.
If that was what it meant, it would mean that despite 32 years of research, cancer treatment is not helping patients actually live any longer post diagnosis than it did 32 years ago.
If that was what it meant, I wouldn’t bother with cancer treatment at all. If I only have 5 years, I’m not wasting 3 of them in a doctor’s waiting room.
Fortunately that isn’t what it means. The phrasing of the statistic is misleading, and the news is better than that!
The Five Year Survival Rates means 90% live “at least” 5 years post diagnosis. It does not mean “only” five years. Repeat after me, “at least, not only”.
Even better news
The 10-year survival rate for all people diagnosed with breast cancer is only 6% lower than the 5 year survival rate for all people diagnosed with breast cancer.
Or in other words approximately 84% of all breast cancer patients will live at least 10 years post diagnosis.
The 15-year survival rate is only 5% lower than the 10-year rate.
At least 79% of all breast cancer patients will live at least 15 years post diagnosis.
79 out of every 100 breast cancer patients have made it at least 15 years.
I have friends who have made it a lot longer than that, they were diagnosed at stage 3.
I plan to follow in their footsteps.
Other Things to Consider That May Ease Your Mind
The people who don’t make it often have other health issues that complicate the situation. Those who are elderly and/or already in fragile health in general always have a harder fight than the otherwise healthy do. That is a very sad reality of the world. Some are the people fall into those categories where it was already in an advanced stage and in distant parts of the body before it was discovered, some suspected or feared it was there and tried to ignore it and hoped it would go away, and by the time they officially diagnosed it, it was in major organs. So, don’t avoid it, meet it head on and deal with it .
Don’t Give Up –
Even if you are one of the people whose breast cancer was not discovered until it was at a highly advanced stage, and had already spread to other parts of your body and invaded major organs of your body, don’t give up . Approximately 26% of people in that situation live “at least” five years. Not “only”.
Over 1/4th of people diagnosed with the most depressing ratings in regards to cancer still beat it. Never think of it as five year as “only”. Think of it as “at least.” If you can beat that 5 year mark, maybe you can beat that 10 year mark, and maybe that 15 year mark.
Every day, month, year you make it, is a day, month, year the research has improved.
Never Give Up!
Never Forget They Mean “at Least” not “Only”!
(This is post 3 in my cancer journey).
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, had mammograms, sonograms, MRI’s, a biopsy, 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 medications am I on, what am I allergic to, what surgeries have I had, who am I related to that has had cancer, do I have a DNR in place, etc.
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 from her home in a small town that is an hour away 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 – Insitu (DCIS) (Not great news, but expected)
- It is Estrogen Receptor (ER) positive (Good news)
- It is Progesterone Receptor (PR) positive (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, they can overpower the good cells, and sometimes they go where they don’t belong,
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 your body. It means that some cancer cells made their way outside of the milk duct into nearby 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 or send them where they can’t disturb the other children.
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. The receptors grab the estrogen before a cancer cell can feed on it. If your cancer is estrogen based, as mine is, you want a lot of ER receptors to gobble up the estrogen first.
- ER positive cancers have a 10% higher survival rate than ER negative cancers.
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
- ER & PR positive patients are less likely to have their cancer spread
- 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.
- A tumor that is HER2 positive tends grow faster. HER2 negative does not.
- HER2 positive tumors are more likely to return than HER2 negative tumors.
- 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.
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.
They also said they found some nodes in my lung.
IF… they had asked, I could point out that I had Rheumatic fever in college, and have had pneumonia four times.
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.
The Oncologist walked into the office and told my daughter and I, “It is a stage 4 that has moved to your liver and your lungs. I cannot cure you, but I might be able to give you a few more years.”
If I had believed him, I would have walked out of the room and sold my home.
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-payments 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.
This is post 2 regarding my journey with breast cancer. The first post is dated October 6, 2016. I am hope that my journey will help others as new to this experience as I am now answer some of the questions they have during this journey, and that they will find hope in my story.
Cancer is a lot of hurry up to wait.
I found a lump the weekend of October 8th.
My PCP confirmed a lump on October 10th.
The mammogram and sonogram of October 10th said probably cancer.
October 11th the surgeon had my reports, and a consultation date set.
October 17th I met the surgeon, and an MRI and a biopsy were scheduled.
I was dizzy from running from one doctor’s office to another, and still in shock that I have cancer.
The MRI was scheduled for Tuesday, Oct. 18th
The biopsy was scheduled for Friday, Oct. 21st.
No one could tell me exactly what to expect on Friday, medically or financially.
So I waited and I prayed.
I was sent to a wonderful center for women that was set up by an amazing Radiology Oncologist who is also a former breast cancer patient. The center founder went out of her way to make the experience as non-traumatic for patients as she could and I am grateful. The technician was sweet and carefully explained the whole process, though it wasn’t my first MRI.
For those who may be reading this who have never had an MRI and are afraid of it. Please don’t be afraid. There is nothing painful about it.
It involves the use of magnetic power, so remove anything metal, and if you have pacemakers or anything metal on or in your body be sure the MRI tech knows. The machine I was placed on was built especially for breast exams. You lay on your stomach, your breasts hang down into little cups built into a table, your legs are positioned slightly up behind you, you’re given ear plugs and ear phones (with music if you want), and told not to move. It is open on both ends, to ease that closed in feeling. I am claustrophobic, but this didn’t bother me at all. They didn’t strap me down. I was only warned that moving would mean having to start over.
The machine makes a lot of funny noises, and they vary in volume and type. Some of it sounds like loud church bells, some of it sounds like a jack hammer, some of it just sounds like a motor running. The music didn’t drown it out totally, but it did help a lot.
Some older places may still use the lay-on-your-back-and-get-moved-into-a-tube form of an MRI, but again, nothing painful to them at all.
MRI RESULTS – Going into the biopsy I had no clue what the MRI results were.
The MRI was late in the afternoon on Tuesday the 18th. It was meant to provide more info for my surgeon before my biopsy. The biopsy scheduled for the first thing Friday morning. When I asked for results I was told the MRI results would probably arrive on Thursday or Friday afternoon. I reminded them that the doctor wanted them before he did the biopsy, and they thanked me and said they would rush the reading.
My breast is very busy
On Thursday they called to tell me they had not received the official, full MRI results yet, but that from what they had seen my left breast looked “very busy,” and that they were concerned it looked “very busy,” and that they were going to need to do an ultrasound on the left side the same day as the biopsy. My lump is in the right breast.
I didn’t think anything could be more frightening than hearing my lump was probably cancer, until I heard that they were worried about both breasts. I asked, “Are you telling me the cancer is in the left?” They replied, “Well, we can’t say that of course, but it looks very busy, there is a lot of activity in there, it doesn’t look like what we would expect a normal breast to look like, so we want to do an ultrasound on the left breast on Friday, just to make sure.” Make sure of what?! What does “busy” mean? I never got an answer to either question.
Cancer is a lot of hurry up and wait.
I was asked if I had taken any aspirin. I responded that I hadn’t. Remember that. It matters later.
Plan of Action for Friday – Arrive at 8 AM, do a biopsy of the right breast, wait while they took in another patient, do a sonogram of the left breast. At this point, I wasn’t sure if meant to do a biopsy and lumpectomy or just a needle biopsy . I am sure they had told me, but when you are in shock, it doesn’t always stick.
Financial Plan for Friday –
I asked again how much money I needed for Friday and just as I had been told with the MRI, I was told, “We don’t know.” That was the official answer, though a little more wordy. “We don’t know what the biopsy will cost up front, but you’ll have to pay $100 + 20% for the sonogram.” To which I replied, “Well, how much is that?” To which they replied, “We don’t know.”
That “we don’t know,” is fairly standard procedure for the entire cancer journey when it comes to money. They need to know what your insurance will or won’t pay before they know what they expect up front. This makes planning for the finances incredibly difficult.
My daughter had set up a GoFund me campaign, and my sister and other family members had helped me out with some of the expenses already incurred. The money was coming into the GoFund Me account, but it requires transfers and those take time. So our family plan of action was that if they demanded more up front on Friday than I we would simply reply, “You should have told us what to plan for when we asked the first four times.” I still like that plan actually.
Son, daughter and son-in-law meet me in the lobby, and so does the technician who is going to do the ultrasound. She says we have a new plan. We’ll do the left sonogram that very morning, and good news, the full MRI report is in, but no one has had time to read it yet.
She does the sonogram, marks a ‘cyst’ that concerns her in the left, and says it is “just a cyst, though it looks suspicious”. I’m not sure how to take that, but decide the surgeon will know. I pray it is nothing.
The Biopsy Itself
My surgeon is very professional, and also very charming. He carefully explained every step of the process as he prepared for each step of the biopsy, from the first rubbing of alcohol on the area where the local anesthetic would be applied, to the last moment.
He asked me again if I had taken any aspirin, and I told him, “No,” because I hadn’t taken any for several days.
I was prepared for incredible pain from the insertion of the needle to administer the local anesthetic, and was joyfully surprised. I’ve had shots, cat scratches, iv’s, and blood draws that really sting. I cannot bear a pain killing shot at the dentist office, but this felt like a very light, pinch. Nothing more.
He warned me there might be a feeling of pressure. There was, but no pain. None.
An aspirin a day might not keep the doctor away.
I was not in pain, but I was bleeding more than my doctor expected so he asked me about aspirin again, and I told him that I hadn’t taken any since Monday. He chuckled and looked at his technician with a brow lifted and she said, “I asked if she had taken any. I didn’t ask if she had taken any this week.” I had no idea that aspirin has a blood thinning capability for over a week. Now I know.
He made her redo the dressing on the biopsy sight, and asked for a pressure bandage, but she was out, so he told me to put pressure on it, watch it, not to do any reaching or lifting, or anything else I could avoid doing with that arm.
Then they sent me out to the lobby to sit and wait a bit, and as I was talking to my family my daughter noticed I had blood on my sweater. I thought she meant “a few dots of blood.” She meant, “a lot of blood.”
Daughter scooted me off to the lady’s room and we discovered I was trailing blood all over the floor, and I looked like I had bathed in cranberry juice. I was perfectly dressed for a Halloween horror film. There was no pain, but it looked like a lot of blood.
My daughter calmly called the nurses and they packed it off, and fetched the doctor again. He pondered putting a stitch in, and they all decided that a better bandage, and more pressure probably would do the job.
When they had it under control the doctor joked that the good new is everyone stops bleeding… eventually, and then he joked about leaving to go make a blood donation in my name. That reassured me and let me know that he wasn’t worried. He did tell me to call if I got home and was concerned. The nurses fussed over me longer, taped me up like a mummy and waited to see if it seemed to have stopped.
Preliminary, unofficial MRI results
While everyone was watching my little “Jason” scene, they told me that they hadn’t officially read the MRI report yet, but they did “skim read,” the results of the MRI and Sonogram, and the preliminary results looked good in that department. Whatever that means.
When they felt the bleeding was under control they sent me home.
Aspirin really is a great blood thinner. A really great one.
Apparently, handling my old truck was enough reaching to start it going the bleeding again, but I didn’t notice that until I started to wash the sweater and realized I had already bled through the new dressing. Looking down, I saw that the top and side of my washing machine had blood all over it. It looked like someone had committed murder in my laundry room. The blood stains below are where I bled on the washer, while I was standing beside it.
I let the kids know the situation, just in case. If I bled to death that night I didn’t want anyone arrested because I took an aspirin 4 days ago. I also called the doctor’s office and received instructions to lay down, apply pressure, monitor and if necessary go to an ER. It wasn’t necessary.
On a side note. I’ve sworn off aspirin for awhile.
If you are wondering, I haven’t felt a single bit of pain from the biopsy procedure. I kept expecting things to hurt after the local wore off. They never hurt.
More waiting. The biopsy was Friday morning. They told me it would be “a couple of days.” So I tried to mentally prepare for it as late as Wednesday. I knew weekends didn’t count.
Saturday – Fine
A little worried about what the results might show, and still wondering what “busy” meant.
Sunday – Fine
My youngest grandson’s birthday party was at a local park on Sunday evening, and I had a wonderful time. I was relaxed. I was able to answer questions and talk about everything with full confidence that it was all going to be fine.
Monday – Full Blown Panic Attack
I have no idea what triggered it, but suddenly, on Monday, I was terrified of the results, terrified of long term survival chances, terrified of finances all over again, and convinced they were going to tell me it was a stage 4 cancer. I have no idea why this happened that day. Maybe I was tired, maybe I let my spiritual guard down, maybe I’d just had one too many people remind me of the doctor they knew that had been wrong. (Some very well meaning people did that, with the best of intentions over the weekend, though must were equally on board with reasons to be optimistic).
Tuesday – The results Are In
I talked to my daughter and son on Tuesday, and confessed to the panic attacks. They both eased my mind. I spent some time talking to my best friend at work about the whole situation, and she also eased my mind. I was going nuts wondering what the results were, but telling myself I’d hear Wednesday, and not to give into the urge to call and nag the doctor’s office.
I’d made my favorite stew in a crock pot and realized I was out of crackers so I decided to swing by the store during my lunch hour to grab some. The call came while I was standing in the middle of the cracker aisle at United Market Street at 19th and Quaker Ave.
My surgeon was kind as he delivered the news, having no idea that I was not in the privacy of my office or home. He told me he had the results, and that it wasn’t good news. I braced myself, expecting the words that followed to be stage 4, spread everywhere kind of news. He quietly explained that the pathology report comes in 2 parts. The initial result and the detailed result. The detailed report would come in a few days, but at this point they knew the following:
It is an aggressive, malignant cancer, that is probably estrogen based.
The lymph node is confirmed to be cancerous as well.
I asked, “Just that one, or more?”
He said, “Just one.”
I asked, “Is the left breast clear?”
He said, “Yes, it is.”
I asked, “Is it attached to the chest wall?”
He said, “No, it isn’t.”
I asked, “Do you think it has spread beyond that node and the breast itself?”
He said, “We did find a cyst in the liver, and may want to biopsy that some day to find out why it is there, but at this point, we do not believe it has spread beyond that lymph node.”
I said, “I know that you can’t really stage it until you get the full report, but based on what you know so far, from all the tests, am I looking at a stage 3 or a stage 4?”
He said, “Oh, you are definitely a stage 2.”
TWO! Not 4! Not even 3!
So, I asked him what he recommended for treatment, he told me that he wants me to see the radiologist/oncologist before I decide anything. He feels I need input from “the man who has to fight the battle against the cancer cells themselves”, but he said generally it will probably come down to choices of doing something to shrink it first, then doing some form of surgery (lumpectomy or mastectomy) to cut out the cancer, or doing some surgery and then radiation and chemo.
I asked him, “If I was in your family, what would you tell me?” He said, “Exactly what I just told you. If you were my wife or my child or my sibling, I would tell you that you have to decide what you can bear to live with. Some women choose to try to save as much of the breast tissue as they can, some want to get rid of it all so they can avoid radiation and chemo and never have to think about this again.”
I said, “But they’re wrong aren’t they? Medically? My mother had 2 radicals, and still died of breast cancer. You don’t get to just cut them off and forget them do you?”
He said, “No, you don’t. There will always need to be some treatment post surgery, and cutting them off won’t guarantee you’re free for the rest of your life. It doesn’t work that way.”
I said, “If I opt for a lumpectomy, can you get it all?”
He said, “I have to know the margins.”
I asked, “What do you mean?”
He explained that to me. I won’t explain it here, because I might explain it incorrectly, but what he said sounded totally logical to me, and the answer to the margin question will come later.
The next part of the journey
I saw my general practitioner just an hour after the surgeon called. This was due to an insurance requirement related to referrals. They wouldn’t let the referral to the oncologist come from anyone other than the primary care physician, but he also wanted to make sure I understood things.
I appreciated that. He is a wonderful Christian man, and he was very optimistic. He used the phrase that it was a good thing we caught it early. I told him I didn’t feel like we had, and that I felt like a fool for not having had a mammogram more recently than I had. He smiled and said”
“It is stage 2. I have lost patients in their 30’s because they found what you found, and chose to try to pretend it wasn’t there. By the time they admitted it might be cancer, it was too late to help them. You are a stage 2, and your oncologist and your surgeon are not just two of the best in the entire state, they work together as a team better than any team I’ve seen. They care about their patients. They want them to survive. They invest in making them survive, and so do I.”
So, today. I’m at peace. Impatient, but at peace.
My next doctor visit is to meet this amazing oncologist. Our appointment is next Wednesday.
On a side note. I used to work at the Health Science Center, and I still work at the university. I know a lot of brilliant scientists and brilliant doctors, and brilliant researchers. They all love my doctors’ plan. Those who know my doctors and the centers all say I’m in great hands.
One day at a time, the road winds, but that’s okay. I’m still traveling.
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.