7/9/20: Physical Therapy Virtual Appointment #20

My physical therapist called on Monday about scheduling a virtual appointment, but she called my cell phone, which I don't always keep at arm's length, so I missed the call.

I called the Cancer Center on Wednesday, and the scheduler said the physical therapist is doing both virtual and in-person visits. But she's not seeing patients on Fridays, the day I usually go in for treatments. I'm still wary when it comes to the coronavirus, plus I figured, I don't have any urgent concerns, so I decided to schedule a virtual visit.

The virtual appointment was today, and we spoke on the phone for 30 minutes. I told her about my current baseline: I wear wrist braces to sleep every night, and my thumb, pointer, and middle fingers are mildly numb and tingly all the time, but don't disrupt my daily activities. I also described the painful flare-ups that led me to take a break from basically everything.

She asked me a bunch of questions along the lines of: Am I getting headaches? Do I have any pain in my shoulders? Do my arms feel tired? Do I have symptoms in my legs or feet?

After all that, she was very confident in saying that she would like me to get an MRI. She said that symptoms that are side effects of medication usually do not change with a person's activities, so the fact that lying down on my back seems to be a trigger for making numbness and tingling worse is an indication of a non-medication-related problem. (My medical oncologist said the same when she first proposed the MRI.) She also thought that the symmetry of my symptoms, and the existence of some numbness and tingling in my toes, suggested something going on in my neck. If we had had an in-person visit, she would have performed some physical tests on my neck, and even then, she still would have wanted an MRI so that we could have all the pieces of the puzzle. Ideally, an MRI will either confirm or rule out a neck problem.

As for why I might be experiencing neck problems, she explained how my double mastectomy resulted in major changes to my chest wall that ultimately affected my chest, shoulder, and neck muscles, which are all interconnected.

I told her how I had been leaning towards not getting an MRI until after my Herceptin treatment ends, in case Herceptin is causing some of the symptoms, but she said not to wait. If the problem is not Herceptin, the sooner it's treated the better; if the problem is nerve-related, letting it go unaddressed now might make it harder to treat later.

She said she would email my medical team about scheduling me for an MRI. Then I can schedule an in-person appointment with her after we have the MRI results.

As always, I really appreciated my physical therapist's insights. Getting her professional opinion felt very reassuring.

7/9/19: I Cancelled the MRI with Biopsy Appointment

Hm.

At the breast surgeon appointment, my nurse navigator said she would cancel my MRI with biopsy appointment for me. (Since we decided on a double mastectomy, and both breasts would be tested, a biopsy of the left breast before surgery is no longer needed.)

But yesterday, I received in the mail a letter confirming my MRI appointment, scheduled for tomorrow. Maybe the letter was prepared before my nurse had a chance to cancel the appointment?

I called the radiology department to confirm my appointment was cancelled. The scheduler said my appointment was still there! She asked if I wanted to cancel it, and I said yes.

For my own sanity, I confirmed with my husband that both the breast surgeon and the nurse said the appointment was no longer needed, and that the nurse said she would handle the cancellation. I guess I'm a little troubled that this fell through the cracks - what else might also fall through the cracks then? - but my husband said cancelling appointments is probably low on the nurse's priority list.

Meanwhile, I am still waiting for the phone call telling me when my surgery will be. We have lots of summer plans that have been thrown up in the air until we find out the surgery date. I feel super anxious, and just want to have a known schedule.

7/2/19: I Checked My Insurance Claims Online

After getting that MRI bill, I wondered why I hadn't been charged for ALL those appointments and tests in May and June...

I logged into my online account for my health insurance. It looks like, since I reached my personal deductible already, my insurance is paying all claims in full.

Usually we get an insurance statement that tells us the full charge, how much the insurance will pay, and how much we should expect to be billed by the provider and/or hospital. But maybe they won't send us a statement if our expected charge is $0?

It does look like we should expect to be billed for some office visit co-pays, which I don't remember being asked to pay on the day of the appointments...

Below I am listing all the new claims so far. Unless otherwise noted, we paid $0. Apparently, this is how much it costs to have breast cancer in America.

(Incidentally, our insurance coverage changed on July 1. Our deductible balance was re-set, and our new plan has a lot of up-front costs before insurance kicks in. So I expect we'll have more to pay starting with the breast surgeon appointment.)

5/13/19: Mammogram & Ultrasound Hospital: $857
5/13/19: Mammogram & Ultrasound Radiologist: $246
5/16/19: NP Appointment: $422 (I owe $20 co-pay.)
6/4/19: MRI Radiologist: $377
6/4/19: NP Appointment: $83 (I owe $20 co-pay.)
6/13/19: Biopsy Hospital: $3,074.54
6/13/19: Biopsy Pathologist: $256
6/13/19: Biopsy Pathologist: $858 (Separate charges for each sample?)
6/13/19: Biopsy Hospital (Pathology Lab?): $2,420
6/17/19: Hospital (Pathology Lab?): $650 (Presumably related to biopsy.)
6/20/19: Mammogram & Ultrasound Hospital: $791
6/20/19: Mammogram & Ultrasound Radiologist: $370
6/20/19: Genetic Counselor Appointment: $212 (I owe $60 co-pay.)
6/20/19: Genetic Testing: $1,500

Sub-total: $12,116.54
With insurance, cost to me: $100

Total cost to date: $17,724.22
With insurance, cost to me: $520

Notably, this current total reflects only my diagnosis. I haven't even received any treatment yet!

7/2/19: I Got Billed for the MRI

Just as I was told on the phone, I was charged only $100 for the MRI.

6/4/19: MRI Hospital: $4,274.68
With insurance, I paid: $100

Total cost to date: $5,607.68
With insurance, cost to me: $420

6/26/19: Letter with Mammogram & Ultrasound Results

It feels weird getting these formal results in writing after already moving forward with verbal results and next steps.

This time, the letter informed me that the diagnostic mammogram and ultrasound on my left breast "showed an area of abnormality...[and] a biopsy is recommended."

I already have an appointment for the MRI with biopsy, but I'm leaning towards getting the double mastectomy, which would make the MRI with biopsy moot.

6/20/19: The Nurse Called Me with Appointments and Receptor Results

While we were at the genetic counseling appointment, the nurse called and left a message. I called her back and was able to speak with her.

She said she spoke with my NP and had some information for me.

First, I got an appointment with the plastic surgeon. Unfortunately, it conflicted with the appointment with the breast surgeon, so she was trying to see if my breast surgeon appointment could be changed. I told her the NP had said I could always decide about breast reconstruction later, and that I'm not sure yet how I feel about breast reconstruction, so right now I am more concerned about meeting with the breast surgeon as soon as possible. I wouldn't mind delaying the appointment with the plastic surgeon. The nurse agreed to keep my breast surgeon appointment as scheduled, she would cancel the plastic surgeon appointment, and look to re-schedule the plastic surgeon for a later date.

Second, I got an appointment for the MRI with biopsy. The date is about 1 1/2 weeks after my appointment with the breast surgeon, so we won't have the biopsy results in time for the breast surgeon appointment. I am wondering how soon we could schedule the surgery... Having both genetic testing and MRI biopsy results before the surgery would be ideal. But I'm also wondering if, after all this anxiety and stress, would I rather just get the double mastectomy no matter what, and save myself the future trouble of having to worry about cancer in my left breast? I need to think about this. The NP had said we can cancel the MRI with biopsy if I opt for the double mastectomy regardless of test results. 

Third, they got partial receptor testing results. I am positive for both estrogen and progesterone receptors. This is good news. This means hormone therapy drugs could be used in my treatment. (I can't help but think how my many years of taking birth control pills may have affected the breast cancer growth... I took a combination birth control pill that contained estrogen and progestin, a synthetic form of progesterone.) They are still waiting on the HER2 testing results.

The nurse said the first step right now is surgery. Then I would meet with a medical oncologist, who would handle my treatment after surgery. 

6/20/19: Mammogram and Ultrasound - Inconclusive + NP Appointment

Today's appointment was scheduled because the MRI showed "something" in the left breast.

I thought they were going to do an ultrasound of my right breast, too, but they didn't. Maybe there's no need to look any further now that it's clear the right breast will be removed anyway.

In the waiting room, I was asked to fill out the standard mammogram paperwork again. This time, my answers included my recent MRI, biopsy, and breast cancer diagnosis. My NP popped in and said I could ask to speak with her at any time during my visit.

First, I got a diagnostic mammogram of my left breast.

Next, the ultrasound of my left breast. When the ultrasound technician left to show the images to the radiologist, the nurse who was at my biopsy came in. She was so comforting, I couldn't help a few tears from slipping out.

The technician and the radiologist returned. The radiologist was the same doctor who performed my biopsy. She said the technician didn't see anything in the ultrasound. She repeated the ultrasound herself to confirm the same.

So, neither the mammogram nor the ultrasound could explain what the MRI showed. The radiologist recommended an MRI-guided biopsy for my left breast, and also genetic testing. Before leaving, she gave me a kind, sympathetic, "I'm sorry you're going through this" kind of look.

At this point, my appointment was technically over, but I asked if I could speak with my NP.

I held it together until my NP walked into the examining room. She handed me some tissues and reassured me my reaction was normal. 

She said she is still in the process of making the appointment with the plastic surgeon.

She will make my appointment for the MRI with biopsy. That appointment would have to take place in the city. These appointments are typically made about 2 weeks in advance.

She will put in a referral for urgent genetic testing. They will call me to set up an appointment. 

She said genetic testing results typically take about a week. Even if the results aren't available in time for next Friday's appointment with the breast surgeon, we should still keep that appointment. 

We will proceed assuming both the biopsy and genetic testing are negative.

If the biopsy comes back as cancer, or if the genetic testing shows I carry genes linked to breast cancer, the surgeon would likely recommend bilateral surgery - a double mastectomy.

The NP said that even if both tests are negative, I should still think about whether or not I want to get both breasts removed. For some women, preserving natural breast tissue is very important. For others, reducing the anxiety of cancer recurrence is more important. If I decide to get a double mastectomy for preventative reasons, she would cancel the MRI biopsy, as the results would be irrelevant if the left breast is going to removed anyway.

I asked if there is any chance of recurrence if both breasts are removed? She said the goal is to remove all the breast tissue, but sometimes it's not possible, so there is a small 1-3% chance of recurrence even after a double mastectomy.

And how would I be screened for cancer, if there are no breasts to image? She said I would have regular clinical visits with her, the NP, and she would perform physical exams to feel for lumps. (I didn't think to ask, but will add to my list: Would breast reconstruction surgery affect the ability to palpably detect new lumps?)

Regarding breast reconstruction surgery, she said I don't need to decide that now. I can always choose to have it done at a later date. It was something of a relief to have one less thing to worry about right now.

To aid her in setting up my appointments, I had previously given her my summer vacation schedule. I told her to disregard them. I don't want to delay treatment.

6/13/19: Biopsy

I arrived early for my appointment, and had a pleasant exchange with another woman entering the Breast Center.

After changing into a hospital gown from the waist up, the first step was the ultrasound. I lay on my back with my right arm positioned over my head. The ultrasound technician looked at both locations without saying much. I asked her if she was able to get a look at the second lump. She said it was difficult to distinguish between the lump and the nipple, but she was able to see it.

We waited for a nurse to arrive. To my surprise, the nurse was the woman I had met walking in. She stayed with me for the rest of my appointment, her supportive bedside manner keeping me calm.

Meanwhile, the ultrasound technician had left, presumably to confer with the radiologist. When they returned, I was relieved to hear the radiologist say she would attempt to biopsy both locations. She said she wasn't sure if she could get samples from the second location, but she would try. (I have to say, this radiologist was so much more personable than the other two I had seen previously.)

As the radiologist came and went to prepare for the biopsy, the nurse explained that after the tissue samples were taken, the radiologist would insert a tiny titanium "clip" into each site, so each location would be easily identifiable for future reference.

The radiologist explained the biopsy procedure. A shot of Novocaine would provide local anesthesia. After that, I should only be able to feel slight pressure, no pain. The ultrasound would help guide the position of a "core needle," which would extract the breast tissue. I didn't dare look at the instrument for fear of getting queasy. Each extraction would be accompanied by a loud "click" sound, which the radiologist demonstrated so I would know what to expect. Finally, she told me that I should expect bruising afterwards.

The ceiling above me was designed and lit to look like a skylight through which I could see blue skies, wisps of white clouds, and colorful tree tops. I kept my eyes on this calming image while the ultrasound technician and the radiologist got to work on the first location, with the nurse standing by. The Novocaine shot pinched a bit, but then I didn't feel a thing when the radiologist extracted 5 samples.

The second location near the nipple was more difficult, and the radiologist had said she would try to get at least 2 samples. With the "click" of the first extraction, I flinched. I could actually feel it. It wasn't painful, but also not painless like the extractions from the first location. The radiologist checked with me to make sure I was okay, and then continued. She was able to get I think 4 or 5 samples from the second location as well.

Just as the radiologist finished with the second location, I felt a flow of blood run from the middle of my right breast down the outside of my torso. Yikes. The radiologist quickly put pressure on the area, then the nurse took over. I lay with the nurse putting pressure on the second location for quite a while before the location was covered with steri-strips and a band-aid.

With the biopsy finished, and the titanium clips inserted, the ultrasound technician took some more ultrasound pictures. As a final step, I would also need to get a "soft" mammogram of my right breast, meaning a mammogram in which the breast is gently positioned, but not squeezed.

Before taking her leave, the radiologist mentioned that I should come back for another ultrasound for my left breast, because the MRI showed "something" in the left breast, too. (To date, all diagnostic mammograms and ultrasounds were only on my right breast, where the two lumps are located.) This was the first time I had heard anything about my left breast, and to be honest, the idea that I had to come back yet again for yet another test was overwhelming.

The nurse had me sit up slowly in stages, first with my feet still on the table, and then with my feet hanging over the side. Just as the nurse asked me if I was ready for the mammogram, I started to feel queasy. Then I felt very warm, and a little foggy. The nurse had the mammogram technician get me some water and Teddy Grahams, then some ginger ale and saltines. After a while, the feeling passed. The nurse said "hot flashes" are a common reaction to Novocaine, and apparently I got a lot of Novocaine.

Once I was feeling better, the nurse gave me written instructions for how to handle the biopsy recovery. She said she would call me the next day to check in, and she would call again in 3-5 days with the biopsy results.

Then I went with the mammogram technician to get the "soft" mammogram.

Lastly, the mammogram technician left me briefly, and then came back with my appointment date and time for another ultrasound. They would look at both breasts, presumably just a follow-up for the right breast. She mentioned the idea of doing the ultrasound the same day, but then said everybody thought I had been through enough, and it would be better to come back another day.

6/6/19: My NP Called Me with MRI Results - Images are "Suspicious"

I need to start answering unknown callers on my cell phone, at least while there's a possibility of receiving a call from a medical professional.

I missed the NP's phone call. She left a message about discussing my MRI results. I returned the call immediately, but she was already no longer available. I waited 3 anxious hours for her to call me back.

She said the MRI images showed "suspicious enhancements" in both areas.

Regarding the first lump: My understanding is that the MRI confirmed a cyst within the skin. However, the area underneath the cyst was "suspicious."

Regarding the second lump: This area was "enhancing on the MRI with a similar pattern" as the other area. Given the MRI results, this area should have been detectable on the ultrasound; it's surprising it wasn't.

The next step would be a repeat ultrasound with biopsy for both areas.

Up until now, I had gone to a separate Breast Imaging location for my tests, mostly because it was where I had been getting my annual screening mammograms, and because it was slightly easier to drive to than the Breast Center. At this point, though, it seemed wise to consolidate all my appointments at the Breast Center.

The biopsy results would be available about 5 days afterwards.

I don't know what all goes on behind the scenes, but the NP said someone would call me to schedule the ultrasound and biopsy appointment. Maybe it's just not the NP's job to schedule appointments.

Again, I waited for a call.

6/4/19: MRI

I had received in the mail an informational letter about my upcoming MRI, plus a couple forms to fill out in advance. With these forms in hand, I reported to the radiology department of the same hospital as the Breast Center.

My NP had let me know that MRI contrast (a dye) would be used to enhance the MRI images. The nurse in the radiology department prepared me with an IV. She explained that during the MRI process, they would inject the MRI contrast via the IV.

The nurse also said that I could choose to listen to music during the MRI, if I wanted. I thought about it, and decided I would prefer silence. Or rather, just the sound of the machine. I'm writing this post on June 17, and I can't remember now whether or not they gave me earplugs. I think they did.

I have to admit, I did not know I would be face-down on a table with my breasts hanging through openings on a padded table. (I got a fetal MRI during my second pregnancy, so I guess I just assumed I would be lying on my back.) I suppose it might have been helpful if I had prepared for my appointment by educating myself in advance, perhaps by reading a web page like this one. Contrary to the illustration on that page, though, I was positioned such that the table I was lying on slid me into the MRI machine head-first.

It's hard to say how long I was in the machine. Maybe 30 minutes? All I can remember now is having to stay still while the machine made all kinds of noises. About 2/3 of the way through, the technician let me know they were going to inject the contrast via the IV. I don't think I felt anything. They took a few more images, meaning the machine made more noises, and then it was finished.

Awkwardly, when I changed back into my clothes, I self-consciously noticed that the face pads on which I had been lying for the MRI had left indentation marks around my eyes. Before heading to my NP appointment, I passed some time in the lobby, waiting for the marks to fade away.

5/31/19: Insurance Letter Confirming Approval for MRI

I can't remember when I received this letter, so I'm just guessing the end of May... I guess it doesn't matter.

The MRI required pre-authorization, and the letter stated that my request had been approved. It was back-dated to May 19, and the MRI had to fall within a month's window of time.

5/23/19: Phone Calls

Taking my PCP's advice, I called the Breast Center to inquire about my MRI appointment.

After choosing the automated menu selection for scheduling, the person who answered the phone said my timing was perfect; my insurance company had just approved the pre-authorization.

My NP had told me that the MRI should be done at a particular time during my menstrual cycle, so my MRI had to be scheduled during a specific window of dates. I made my appointment, which would be in 1 1/2 weeks.

I also took my PCP's advice and decided to schedule an OB/GYN appointment to discuss birth control options.

I loved my OB/GYN who saw me through the births of both my children. I also regularly saw an NP in the same office, and I loved her, too. A few years after having my second child, I figured my PCP could take care of my Pap tests and the prescription for my birth control pills, so I stopped going to my OB/GYN. That was about 8 years ago.

I started by looking up my old providers. Unfortunately, neither were still practicing in my area. Now that I had to find a new OB/GYN, I decided to look within the same hospital network as my PCP and the Breast Center.

I went online to cross-reference doctors in the hospital network at locations near me with the list of in-network providers listed by my insurance company.

I called up the local OB/GYN practice affiliated with the hospital. As a new patient, they randomly assigned me to a doctor, and luckily it was the one I preferred based on the online profiles. I made an appointment for the earliest available date, which was 5 months from now, in October.

Just for good measure, I also called my insurance company. I confirmed that I do not need a referral for an OB/GYN appointment. I also learned that I had met my personal deductible, so the cost of the MRI should be fully covered; I would only need to pay a co-pay of $100.

5/22/19: PCP Appointment (Annual Physical)

Amidst all this, I just happened to have my annual check-up with my PCP.

She had received all the reports from my various tests and appointments. I told her I hadn't received a call yet about scheduling my MRI. She advised me to call them, and said that scheduling can sometimes fall through the cracks, so I shouldn't be afraid to be pushy.

We also discussed the fact that I currently take a birth control pill. In some cases, birth control pills may increase a woman's risk of breast cancer. All my current breast-related appointments basically mean I now have a higher risk of having breast cancer, and my PCP recommended I speak with my OB/GYN about switching to a different type of birth control.

5/16/19: NP Appointment

If you remember, I am actually writing these posts in retrospect. I am writing this post on June 15, and by now I have been to the Breast Center a number of times. I have to say, everyone I have interacted with at the Breast Center has been amazingly kind, professional, and helpful. You figure it probably takes a certain kind of person to work at a place where they mostly deal with patients who have or might have cancer. These are women who are all really good at their jobs, and I appreciate them so much.

So anyway. The Breast Center NP confirmed my two lumps are easily palpable. 

Regarding my first lump, she reassured me that sebaceous cysts can occur anywhere on the body, and I just happened to get one on my breast. 

She said the second lump felt similar to the first lump, but since we can't assume anything, we need to take the next step to figure out what the second lump is. After a mammogram and ultrasound, the next step is to get an MRI. 

The NP explained that MRIs require pre-authorization from my health insurance. The Breast Center would take care of obtaining that pre-authorization, which usually takes a few days. Then they would call me to set up the appointment.

She advised me to not bother with a dermatologist just yet. We would see what the MRI showed, and then go from there.