The Prep Work

This is the lull phase. It’s the waiting between the diagnosis and the procedure.

People have been sliding gifts and well-wishes to me. LilSis sent an Amazon gift card and I bought specialty bras with a zip front. A coworker brought me a computer bag. She said that way you can take your laptop to all your appointments and make notes.

A childhood friend sent a prayer shawl. How did she know it matched my glasses?

Another online friend who is a jewelry maker sent earrings. I had requested some kind of little pink symbolic things, or really whatever she wanted to send. She sent a box with at least 5 sets. One set matches my work shirt.

Another friend from high school who had exactly the same DCIS years ago called to offer support.

Because I am mentally planning for radiation, I bought a product recommended by someone in the support group that is to be applied after a radiation session. It’s a healing ointment- who knew it was mostly petroleum jelly?

I’m still three days out from surgery at this point when the oncology radiologist called to say that he had received the results from the DCISionRT test. I didn’t know he had requested the test because the surgeon said they wouldn’t do any testing until after the lumpectomy. However, the surgeon had never heard of the DCISionRT test, only the OncotypeDX.

He said he was surprised at how low my score was. This test predicts the potential reoccurrence of DCIS in the next ten years with and without radiation. Without radiation, I’m at 9%. With radiation, I’m at 7%. This is big! This means I have no appreciable benefit of having radiation therapy.

I told him about my first cousin who was diagnosed last year with DCIS. She’s in her late 70s, she had a lumpectomy with a second lumpectomy to get clean margins, and her OncotypeDX results showed 5% without and 3% with radiation, so she opted out. She’s on a hormone suppressing drug, and I probably will be, too. Her mother and my mother were sisters, and she also had genetic testing with shows she doesn’t have BRCA genes, which was a relief to her because she has female descendants.

I’m happy with this news. It seems like a bright spot.

*****

Two days before the procedure, the scheduler calls to tell me that I need to be at the hospital at 8:25am. No food or water after midnight the night before. No lotions, creams, sprays, or roll-ons to be used. The covid19 test was negative like I knew it would be. I will go home the same day. I will not be able to drive home or to make big decisions because of the after effects of the anesthesia. I will most probably be in surgery by one to one-and-a-half hours after arrival. I will receive a phone call the day before surgery with a finalized arrival time.

I’m sitting in the car of the Publix parking lot, eating a salmon salad, trying to eat clean with greens and protein. I’ve stocked up with protein drinks and the BabyGirl sent specialty vitamins.

What have I neglected? Oh, I put everything on autopay so I won’t miss paying something important.

Now? More waiting.

The SaviScout

3/30/21: back to the hospital to the mammogram room for an implant clip called a SaviScout.

The nurse in Dr. Surgeon’s office explained that the SaviScout was used in place of a wire to mark the location of the DCIS. I was confounded by the word “wire”. Did you know that actual wires are inserted in a woman’s breast to mark the location that needs to be removed? I’m upset that women have to go through these things. It seems like butchery. We can talk more about that later.

The SaviScout is a locator clip that, when activated, gives off a signal that tells the surgeon where to excise. Of course, there is the equipment that activates the signal before the surgery and continues to read the location.

I’m back to the original mammogram room with the same nice technicians that I had before. The radiologist that is going to do the implanting is someone new to me. I was clamped in the machine much like before, but this time the clampage was such that the entry point was on my left lateral.

I had been told that this implant was going to be less traumatic than the stereotactic needle biopsy. I know I have to move forward in the process, but I don’t want to. Here I am anyway, clamped in the machine. The problem with this clamping is that my left arm has no where to rest. I’m reaching across open space to grasp the handhold, and I can’t easily maintain this position. My left hand is going numb. My arm is quivering, and I’m trying to hold it up with my right hand, which is also getting tired from the extra work.

The radiologist comes in the room behind me to my right. I never saw him, but his disembodied voice floated in the room. The technician asked him if he wanted a scalpel. He hummed and hawed and said “scalpel?” She said “yes, do you want a scalpel?” I wanted to tell them to stop saying *scalpel* because I can hear them. He decided that yes, he did want a scalpel, and I know that someone is going to get cut.

He moved into position to my left, still out of view, and told me that he was going to inject the area with a numbing injection. He asked me if I could feel pain, and I told him that no, I could only feel pressure. After inserting the device that would inject the clip, they had to take an x-ray to see if it was inserted in the correct position. They determined that everything was as it should be. In the meantime, I was moaning and quivering and my left arm was dead weight.

Finally, I am set free. It was not as painful and traumatic as the needle biopsy, but I don’t wish this on anyone.

The following Sunday was Easter. Dr. Surgeon is taking the week off, so that’s going to bump my lumpectomy to the week after. The nurse navigator is taking off the week of my lumpectomy. That’s usually the spring break week for this county because there’s a big golf tournament that usually takes place.

I’m scheduled for a COVID-19 test even though I’m fully vaccinated. This will take place 3 days before the lumpectomy, which is scheduled on Friday, April 16, 2021.

So the COVID-19 test. That was less than fun. I had an appointment at 10:30AM at a drive-through location across the street from the hospital. There’s a big medical RV parked in a back parking lot. A nice technician came out of the RV and approached my car from the passenger side. She asked for my name, and because she didn’t seem to understand what I was telling her, I pulled one of my medical bracelets off the gear shift and handed it to her. She then understood that I was who was supposed to be there, and I presented my ID.

I had to roll down my driver’s window, and she came around and explained that I would have to lower my mask in order for her to insert the swab that was as long as a knitting needle. She said that she had to leave it in position all the way back in my nasal passage in order for it to make contact for 5 to 6 seconds, and that some people had described the sensation like that of getting water up your nose, and that you might have a soft cough.

She inserted the swab gently but firmly, and I felt it go all the way to the back of my head. It was definitely a sensation of water in my nose, and then the cough came even though I tried to suppress it.

She withdrew the swab, and placed it in the medical tube, and said that I would be notified if the test was positive.

We’re on the countdown now. Three more days.

Back to the Surgeon

Now it’s a preop with Dr. Surgeon.

As a side note, I had asked my supervisor if she could schedule me off on Wednesdays in general because that seems to be a good day to see the various doctors. She said that she would have to give me Mondays because that works better for the schedule. I’d like to add that she hasn’t actually been to my office in several years, and I know what works better for that office than she does. Her unwillingness to give me the day I need really frosts my cookies, because it means that I take a day and a half off per week, and I need to make sure that I maintain at least 30 hours per week in order to be considered full time and maintain my health insurance. She has also told me in the past, when I’ve told her that she has scheduled me to clock-out before the office closes, that I knew what worked for the office and that she knows I’ll be working after closing. Her logic or lack of it astounds me. I’m working a check-out desk and training a new worker so that’s a whole lot of fun.

Anyway, it’s Wednesday and I’ve taken off early from work to go see Dr. Surgeon. See above.

He has to do an exam, and I have to change my top and put on that attractive paper top with the opening to the front. During the exam, he tells me that I will have to have a clip inserted. My head jerked up and I looked at his face and saw his staring out the window during his palpations, and I said “I’ve already got a clip”, and he said, “this is a different kind of clip.”

He proceeds to tell me that I have DCIS and it has to come out. Seems like an understatement.

He also said he would walk me through the procedure. It will be an outpatient surgery, but will be done at the hospital, not the outpatient center. I’ll be sedated, he’ll remove the DCIS, it will go to pathology, they’ll make sure we have clean margins, and then he will close. He said he wouldn’t close until he gets clean margins.

I mentioned to him that I had recently remembered that my first cousin’s Christmas card mentioned that she had had breast cancer TWICE but now she is cancer free. When I called her, she told me that she had DCIS, also on the left side, and that two lumpectomies were necessary to get clean margins. This made me doubt her doctors because mine has just told me that he wouldn’t close with clean margins of 2 millimeters, but more on that later. I told him that there is no history of breast cancer in my family.

Dr. Surgeon told me that 50-60 thousand women are diagnosed each year without a family history. Strangely, this doesn’t make me feel better. I would suppose that the testing has gotten so much more precise that things are being caught that wouldn’t have been previously.

Dr. Surgeon finished his spiel, and as he left the room, he slowed down with his hand on the doorknob, and looking back over his shoulder at me, he said, “We’ll hope and pray we get it all.”

I’m hearing conflicting messages.

Meeting the Oncology Radiologist

After this appointment, I have to go on to work, so Leslie wasn’t able to go with me unless we took two cars. This seems like an unnecessary complication, so I headed out alone.

I went back to the same cancer center that I was at the day prior when I met the oncologist. I haven’t been sure how to refer to the oncology radiologist. Is he a radiologist specializing in oncology? Is he an oncologist specializing in radiology? So many questions in general for this whole process.

I arrived in plenty of time and checked in with a nice lady named Angie who gave me a heap of paperwork to process. She said that my nurse would be a nice lady named Rose.

When my time came, Rose took me to the back and checked my weight and my blood pressure and my oxygen. She led me into a small consultation room with a desk and a desk chair, and a couple of chairs across from the desk. I waited a fair bit for someone to come along. I wasn’t sure what to do, so I sat there and twitched a little.

Suddenly Dr. Radiologist and Erin the Navigator entered the room. He introduced himself immediately and stationed himself behind the desk with Erin to the side. He launched into a steady stream of information, and his gaze was so direct that I couldn’t look away to make notes.

Here are some things that I gathered:

There are two types of testing that can be done to ascertain if I will benefit from radiation treatment. One is Oncotype DX and a newer one called DCISionRT (pronounced decision RT). These can help predict in percentages if this cancer will recur in 10 years, with and without radiation. So if I have a score of 20% recurrence without radiation, and 10% recurrence with radiation, it’s pretty clear that I would have radiation. The problem is that my DCIS is on the left side so it’s near the heart and left lung, and radiation could affect my heart and lung. There’s a breathing technique used during treatment where you take a deep breath and hold it for 10 seconds to help lift the DCIS away from the heart and lung.

I am not one bit interested in having radiation, but then I am also not interested in having DCIS recur. Those sneaky little cancer cells can be hiding and are undetectable by modern testing until they reach a certain age. Mine has been growing for probably 8-10 years, but it is when they are about 6 years old and have attracted calcium which attaches to them that they become shown on the mammogram as calcifications. However, calcifications can be shown on the mammogram, but it’s not DCIS, it’s just calcifications. So radiation is necessary to zap all those little hidden cancer cells.

I asked when I would be scheduled to meet again with the surgeon, and was told that the surgeon’s nurse was out sick that week and that someone would call me next week.

I’m definitely interested in having testing to find out my chances for recurrence.

I finished up with Dr. Radiologist and headed on to work.

Now I wait to hear from the surgeon.

Billing Errors and Support Groups

It’s a couple of weeks past the first mammogram, and the bills are starting to roll in.

The bill for the mammogram was $503.

This is with insurance.

When I was checking in at the imaging center, one of the questions was if I wanted a 3D mammogram. If so, it might or might not be anywhere from $75-$125 extra.

I don’t know what possessed me to check “yes”. I suppose it seemed like a good idea since I hadn’t had a mammogram since 2012. I wasn’t delaying the mammogram on purpose; I went back in 2013, but without insurance the pelvic was estimated at $800 plus then the mammogram.

So now I have insurance for the last several years. I couldn’t decide who I wanted to go to. I take a long time to make a decision. Work conditions and work load were such that any time away just made it worse when you returned. Processes were not in place to encourage women, the bulk of the work force, to take care of their health. It was like I had health insurance for emergencies. Have an appendectomy? You’re covered. Get hit by a car? No problem. Now if you are out with an emergency, someone will have to cover your work or it won’t get done. Wouldn’t it be a practical approach to assist your work force by planning in such a way as to provide time for maintenance care, not just emergencies? Either way, the workplace needs a backup plan.

I noticed a disclaimer printed on the bill that said my claim was rejected by my Blue Choice Medicaid.

Y’all? I don’t have Blue Choice Medicaid.

I work in an optical office. The doctor I work for gives eye exams. This is my first experience working in a medical office which accepts insurance. Our office accepts most insurances of major medical, plus Medicare, and Medicaid. The monkey wrench that gets thrown into the works is a thing called Vision Plans.

Ah, Vision Plans. Learning about that was an eye-opener to me because I’d never had a vision plan. Do you have a vision plan? Do you know who it is with? Most people don’t. They just know they have a vision plan. The most popular plans we see in this area are Eyemed, Spectera, and Vision Service Plan, but there are many, MANY more.

When many people make their appointments as a new patient, they don’t want to chat on the phone even though I need to gather critical information to complete their patient file. It’s not enough for them to give their name and contact information and to say that they will bring their insurance when they come to their appointment. I have to break it down for them: you tell me that you have a vision plan and I need to confirm that you are eligible. So simple, but people can’t be bothered, plus they think that we on the other side of the check-in desk have a magic button that we push to get the information about their vision plan. News flash – we don’t. It is your responsibility as the policy holder to know that information. In the time of COVID, I don’t want people hanging around the lobby filling out paperwork and answering questions. I want everything pre-addressed and all possible problems located before they even enter the building. This can be accomplished by telephone, email, and texting. Help me do my job efficiently. If I don’t gather this information until you come into the office and you are not eligible, suddenly you are mad at me for not trouble-shooting the situation. Your time is wasted. My time is not wasted because I now have the information that I needed and I can take care of you better. Some people are old school and want to do all their dealings in person, but times have changed.

Some of the vision plans have been sold to other companies causing further complications in locating them. You used to have Davis with was sold so now you have to go to the new parent company to access that information. Or let’s say they used to have Guardian or Superior but it might now be with Versant, but don’t forget to check VSP. It’s so ridiculously complicated that I made my own spreadsheet with user names, passwords, and links to websites.

Then there’s Medicaid. When you have Medicaid, it could be any number of plans, and we don’t accept all of them, so we need to know what form you have. If we don’t accept it, you are going to get a bill. You don’t want to get a bill.

So even though I have presented my information on the phone and in person at the imaging office, they still got it wrong. I’m not mad because I get it. Blue Cross Blue Shield is a popular insurance, but a lot of other plans piggy-back their names so they sound similar, like “Blue something or other”, plus some of the Medicaid plans have the word “Blue” in them. So if you are working the accounts and you enter the word “Blue”, you will get a long list of choices. You could possibly think that you are clicking on one and accidentally click on another.

It’s complicated and stressful for everyone.

So I called the number on the bill and talked to a nice lady name Krista to tell her that I have gotten a rejected bill and don’t have Blue Choice Medicaid. She noted right away that they needed to correct the insurance, which she did, and said that they would rebill.

However, this doesn’t feel good that the first bill was handled incorrectly, because I’m sure there will be many more of those to hit my mailbox.

*****

I joined a FB support group for women with DCIS. So many of those people are having single and double mastectomies, radiation, and hormone-suppressing medications. It was a sudden reality check with a steep learning curve.

I started practicing sleeping on my back because if you have a mastectomy, you can’t sleep on your sides. I bought special post-surgical bras for compression to help eliminate fluid build-up. I learned that DCIS is considered stage zero because it is self-contained in the ducts, but if it escapes the ducts, it is considered invasive. Some health professionals consider it pre-cancer, but the word “Carcinoma” is still in the description, and that is a sore point for the people that actually have DCIS. I learned that some of the women are having reconstruction after mastectomy, and if they don’t have enough skin left after mastectomy that skin from other parts of their bodies are harvested to use for reconstruction, and they might be getting implants or expanders.

I don’t even know what else I don’t know, but let’s roll forward.