Go with the FLOW! How I Scored a Date with A Surgeon.
I FINALLY got lucky and scored a date with a surgeon! The Surgeon’s office called immediately, before the two minutes of tears were dry. It was Wednesday, the day of my diagnosis, and the appointment was set for Friday morning. They were not messing around. I could tell from the speed of mammogram to regram to ultrasound to the ultrasound tech telling me, “I’m calling in the doctor” that there was no time to lose. They told me it would take two days for the results of my biopsy to come in. They called me the next day. What should I wear? Coco Chanel says you should dress like you have a date with destiny. And I do. I grab the Adidas Track pants and disguise how lazy I am with faux fur accessories, including my Wookie apres ski boots.
The month of my mammogram...
Kevin and I entered the surgeon’s office and instead of being guided to an examination room with your standard paper-covered table, rolling chairs, hand washing sink and beige cabinets, we were guided into a conference room, complete with large table about a dozen office chairs, a projector screen and a pink cupholder in the corner of the table. I bought my own notebook, and they offered me a pink ribbon pen, but I am refusing to adopt the breast cancer swag because I’m a party girl who doesn’t want to bring anyone down. Besides, my metal liquid ink pen is classier. I tap it on my red pleather Economist notebook.
The surgeon introduces herself and the nurse that is in the room. Apparently, you get your own cancer nurse, too. After the perfunctory introductions are name and regrets expressed, we dig right into it. She asks me, “What have you read on the Internet since your diagnosis?”, she asked. “Nothing.”, I replied immediately. I know better. I also know the punchline to WebMD is “You have cancer!”, which I know already. “Good.”, she said, closing her eyes slightly and with the Mona Lisa smile I will come to know as approval.
“As you know, you had a mammogram on December 26th, then we called you back for another and ultrasound December 27th, then we performed a biopsy on January 2nd. The tumor was malignant, and your diagnosis is invasive ductal carcinoma, which is the most common and treatable form of breast cancer.” A large image of my defective breast is projected on the screen. The surgeon continued, “We were looking at this spot HERE in the mammogram, and HERE in the ultrasound, and we measured it under 2 centimeters, which is good.” YEP. It was pretty plain. Pretty defined. Not a black hole like a cyst. There was the pea under the mattress literally in black and white.
“You might want to take notes.” I click my superior pen into readiness
“Our recommendation is to do a lumpectomy with lymph node biopsy. You will meet with a genetic counselor who will determine whether you are eligible for the BRCA test. If you are eligible, we like to schedule surgery after we get the test results back in 4-6 weeks, as those might impact our surgery decision. You will also be tested for your hormone receptor factors for estrogen and progesterone, as that will impact your chemotherapy and maintenance drug options. If you test positive for hormone receptors that is good, because it gives us another treatment option to cap off those hormone receptors on any cancer cells. Think of a child-proof cap on an electrical outlet. There is another factor you will be tested for, Her-2/Neu (she spells it out for me) that if you test positive, that is not so good and you will need to do chemotherapy. We also recommend radiation, to prevent any small cells from developing into tumors. This total treatment can take anywhere from six months to a year, depending on the outcomes of these tests. If you follow our recommendation, we think your prognosis is very good.”
I am writing this as fast as I can and trying to put this in a linear fashion from years of being programmed as a project manager. I state to map out the timing and the milestones. It seems that there are a few unknown that will impact my cancer project, so I begin to draw a flowchart with IF/THEN statements.
“Do you have a job?”, the surgeon asks.
“Now I do.”, I quip, hoping to get a glimpse of Mona Lisa’s teeth.
When I had a REAL job
I dig around in my handbag for my lip balm. I thought this was a doctor’s appointment, not a project planning meeting. I spy my two most useful tools as a rocker and manual laborer. I pull out my Sharpie and my retractable blade, slap them on the glossy tabletop and announce, “Let’s DO this! Right here, right now!” The Surgeon is not amused. “Uh, I mean, I’m sure your tools are BETTER…” Like my pen.
She gives me a pass through the awkward silence, “It’s good to have a positive attitude through this and I understand you want to get through this quickly, but there are a lot of factors to take into consideration.”
What stage am I?”, I ask, because everyone keeps asking me.
“We don’t know until the surgery, but here are the criteria for the stages,“ the surgeon rattles them off and I put them in a linear fashion that my brain can comprehend:
IF the tumor is under 2 cm, AND there is no cancer in lymph nodes, THEN you are Stage 1.
IF the tumor is 2-5cm, AND there no cancer in lymph nodes, THEN you are Stage 2.
IF there is cancer in lymph nodes, THEN go straight to Stage 3, do not pass GO, do not collect $200.
IF your tumor is over 5 cm AND it’s in your lymph nodes THEN the party’s over.
She explains the surgical process. “We take out additional tissue around the tumor, test the periphery, and if there are malignant cells in the periphery, we may have to go back in and take more. We test your sentinel lymph nodes during surgery for malignant cells, and if there is cancer there, we take more, until we find ones that are clear. We used to take them all out but we don’t do that anymore. The swelling from the removal of lymph nodes can be uncomfortable and if you get lymphedema, we can fit you with a compression sleeve.” My mind goes immediately to spandex opera-length gloves.
This is getting really complicated. What happened to having major surgery and going to a house party four days later, like I did with my hysterectomy? There are more conditional statements to come. My linear transcription of the steps starts to become a flowchart. The fixed items are surgery and radiation. The timeline now has Genetic testing, the pre-surgery physical, the radioactive seed implantation and surgery as milestones, but the times are not set. Everything else is contingent on the outcome of the decision tree which is now growing branches and leaves, but is as barren as the lunar surface.
OPTION 1: SURGERY – TIME AND SCOPE
IF my meeting with the genetic counselor determines I am a good candidate for the BRCA test, THEN my surgery will be in 6 weeks to allow for the results.
I want this thing out. NOW. I’m tapping the metal pen on the tabletop, indicating my impatience. “What if I’m NOT a candidate for the test? When can I have my surgery?”, I demand.
IF I am not a candidate for the BRCA test, THEN I can have my surgery in two weeks.
Why are these people smiling?
TWO WEEKS? Why not tomorrow? There are more contingencies. This project has more milestones inserted into the timeline.
“It will take a couple of days to schedule your genetic counseling. Then, you have to get a physical less than one week before your surgery and some blood tests, but no more than one week out. Then, about three days before surgery, you will visit radiology. They will insert a radioactive seed, like the ones used to treat Prostate Cancer, into the tumor. This will guide us to the tumor in surgery with a Geiger counter, as the tissue does not look different than healthy tissue.” I start a new page in my notebook.
The surgeon adds yet another factor into the decision. “You CAN elect to have a mastectomy with one or both breasts, regardless of the outcome of your genetic counseling. It is your choice. Some people feel better having one or both breasts removed.”
REALLY? Some people do this BY CHOICE? You are kidding me. I can’t imagine a scenario where by this would be a choice unless they were really freaked out or wanted to throw free cosmetic surgery in there. You would have to have a gun to my head for either of these. Why didn’t she tell me this in the first place? That’s kind of a big option to throw on the table.
“Just for fun, let’s say I choose to have my left breast or both breasts removed. Does that better my chances? How does that change my prognosis?”
“By one percent.”, She closes her eyes slowly and the corners of her mouth twitch into a knowing smirk.
“One percent.”, I reflexively repeat.
“One percent.”, she affirms. “We can remove all the tissue, but we never get all of it. There is no guarantee that there isn’t some tissue left behind that can become cancerous.”
I think about my own experience with breast cancer and the three people I know whom have DIED from breast cancer. ALL of them had their breasts removed. One was a man. Michele had all the tissue from her ears to her bellybutton removed. Trace had her breasts removed, reconstructed and the cancer came back and killed her. “I dinna no ye could git brrreast cancer in plastic tits!”, she quipped in her Geordie accent. Magoo had all his breast tissue removed ten years before he died. In a split second, given all the anecdotal and statistical information, I’m sticking with the doctor’s recommendation.
OPTION 2: CHEMO OR NO CHEMO
“So if I’m Stage 1, I don’t have to do chemo?” I get the not-so-fast-lady look and she explains. “If you are Her-2/Neu positive, THEN you have to do chemo.”
“There’s no way out of it? Do I have to do the chemo?” I am clearly in the bargaining stage.
“Yes, there’s really no way around it. If you are Her-2/Neu positive, you really need to do that particular chemo, Which the course of treatment is one year.”
Sounds like Her-2/Neu Positive is something you DON’T want to be. I’ve already decided I’m not positive. There is no way I can do chemo for a year. That would turn me into a party pooper. I picture myself wheeling a crystal-studded IV bag around wherever I go.
This decision is not up to me. I don’t like that one bit. IF there is no cancer in my lymph nodes, AND I am Her-2/Neu negative THEN I do not have to do chemo. This is the scenario I lay out in my notebook.
OPTION 3: HORMONE RECEPTORS
I had heard the term “triple positive” and “triple negative” thrown around here and there with cancer and I heard triple negative was BAD, which seemed to me counter-intuitive. Testing positive for breast cancer was BAD. Most tests with a negative result are GOOD. My friend Michele was triple negative, and someone told me this was bad. I have no idea what I am. Given I’m over an hour into this meeting and there’s still a ways to go.
“So, I’ve heard the terms triple positive and triple negative thrown out there. How do I know what I am and what does that mean?” I have the feeling I’m about to feel kinda stupid with what the answer is.
The surgeon does her Mona Lisa smile again with closing and opening of eyes slowly. “We will not know that until later. We test you for your hormone receptors. Think of the cancer like an open outlet. If you test positive for the progesterone and estrogen receptors, then we use medication to block those receptors so the hormones cannot affect the cancer cells. Think of a child-proof cover for the plug.”
“Why is it triple positive or negative? What is the third factor?”, I must have missed something.
“That’s the Her-2 factor we discussed before.”, she says.
“So what happens if I’m hormone receptor negative?” I get my pen ready.
“That just means the maintenance pills are not a treatment option, that we can’t block those receptors.” That doesn’t sound good.
I am confused. Being triple negative is bad, but being Her-2 negative is good. I thought you are all one or all the other. I am mulling this over. The triple test is putting a fork in the fork of my flow chart. My flow chart is looking pretty messy by now.
Getting back to the project at hand, I go back to building out the timeline. “How long will all this take?”
The surgeon continues with more IF/THEN conditions for the flow chart. “IF you do NOT have cancer in your lymph nodes AND you are not Her-2 positive, your treatment will be about 6 months from start to finish. IF you are Her-2 positive, THEN that course of treatment is one year.”
Trying to make sense of all this
“So how does this process go from start to finish?”, I ask. I have a project plan to complete.
Some of these conditions are fixed. The difference in where I wind up at the end of the flow or how much time it will take are vastly different. Here’s what I have in my notebook, and will have to make this a tidier chart when I get home:
Step 1: Appointment with Genetic Counselor. IF YES to BRCA test, surgery in 6 weeks. If NO, surgery in two weeks.
Step 2: Appointment for Pre-op Physical and blood test one week before surgery. IF NO to Step 1, then physical in a week but no more than a week before surgery. The step is fixed, the timing is not.
Step 3: Appointment for radioactive seed no more than 3 days before surgery. They implant a radioactive seed so the surgeon can find the tumor with a Geiger counter. Contrary to popular belief, this cancer is not the black mass it is on the screen and is not visible to the naked eye.
Step 4: Schedule Surgery in six weeks, IF there is no BRCA test.
Step 5: Schedule appointment with Radiologist. Radiation is fixed, but timing comes after surgery.
Step 6: IF I am Her-2 positive AND/OR I have cancer in my lymph nodes THEN I will have to schedule an appointment with the oncologist.
Step 7: IF I am hormone receptor positive, THEN I go on maintenance pills for five year. IF not, OH WELL, but that’s not good.
I can’t imagine keeping track of all these appointments. Guess what? I don’t have to! They explain that helpful cancer nurse comes with a cancer secretary who makes all of these appointments for me. IF one appointment moves, THEN cancer scheduler moves all the other appointments. They guide me to the desk of the scheduler, and I’m anxious to start this project ASAP.
First Day of Work Orientation Packet
“Can I talk to the genetic counselor TODAY?”, I ask. It’s Friday afternoon, and I hate waiting the weekend and being a slave to the 9-to-fivers. She assures me she will place the call today, and if they do not call me, she gives me the number to call.
It’s January 5th. I scheduled my surgery for Valentine’s Day. I hate the holiday anyway, and you can’t get a reservation anywhere good so screw it. If I have to get my tits cut off, so be it. I think it’s actually kind of brilliant. Why not have surgery on valentine’s day? I’m going to get flowers and candy for having surgery. I certainly don’t require them on any other February 14th.
So there it is, all mapped out. The cascading appointments of my project. It’s like planning a party or a show. First you get the date and then the venue, then you schedule the DJ and/or the bands, arrange for the food and drink, make the flyers and promote it at least a few weeks before the show, send out reminders, arrange for the gear and all the technical stuff, then it’s all over in a few hours, and you recuperate.
None of this is in my control, except pushing the timeline if I can. I’m determined to get through this as fast as possible, but understand I have to go with the flow. I can’t impact much except to educate myself on all this. All I want to do is crawl back in bed. Kevin and I get some lunch and you could hear the gears turning in our silence. I've had dates took less time than this meeting at two and a half hours. I went home and drew my flowchart, but it looks like I have my work cut out for me.
I know this had to be a bitch to write. I'm glad you stood up to the challenge. When you drew a flowchart for me (yes, I have my own personal Lindsey handwritten flowchart) I said, "I totally get it now! You need to take the flowchart public." The info in this is personal and insightful and user friendly. It's missing the size piece (not THAT size-people get your heads out of the toilet). My understanding was the size and your superpower assessment of the BRCA test determined the rest. Am I jumping the narrative arc? If so, sorry. I hate that you have cancer, I hate what you're going through, and yet I am so very proud of how you're going through it. One more thing, you understand that this is a teachable moment. Thank you for being such a cool teacher. xxxx.ReplyDelete