Take two

Most unexpected call from Blue Shield.

Hi this is Barbara from Blue Shield. We got notification that you were getting a mastectomy next week. Is this correct?

[At this point we were pretty sure she was going to say, "We decided this was an elective surgery that we don't deem necessary. I called to tell you we were denying the service." Instead...]

We wanted to send you a pre-surgical guided imagery program CD. This should help with your comfort level during and after the surgery. It will walk you through visualizations that will engage your mind in the healing process. You should listen to it at least three times before your surgery.

And sure enough, we got the CD. Huh.

We had our pre-op today for the mastectomy. Our appointment was at 2:00 but Dr. Dirbas didn’t make it to us until 4:00 due to an emergency in the OR. As you might have read I used to be really bothered by this. But after our last visit, where he shifted his entire afternoon to do the lymph and breast biopsies, I’m a little more understanding. Two hours are not critical to us right now — they might be critical to another women.

The meeting, once he arrived, was very sobering. Dr. Dirbas wouldn’t speculate — even a very tiny bit. Not even a hair. He wouldn’t even speculate in his body language. We went in wanting to talk about the “decision tree” that defines the space of options, but he very quickly pointed out that this decision tree was huge. Spending a lot of time on discussing it, when we don’t have much information would be a waste of time and emotional energy. He told us it was very important that we understood the reality of the situation. There is a very wide spectrum of possible outcomes, the details of which we will not understand until after the operation.

He remains very concerned about the lymph nodes because he doesn’t know why they are swollen. The size of the area is also huge, which means the core needle biopsy only touched a small percentage of the affected area. He said we could be dealing with contained DCIS on one end of the spectrum and fairly invasive cancer that has metastasized to the axillary lymph nodes. On one side we have a very high survival rate and on the other we “have a much longer road.” He actually cut me off at one point when I asked about what the tests results might suggest. It went something like this:

[Me] “It seems like the core needle biopsy coming back all DCIS means there is a better chance it hasn’t…”

[Dr. Dirbas] “Look, we just don’t know. You are getting way ahead of yourself.”

Part of what I really like about Dr. Dirbas is he helps to reinforce the “be brutally honest about the reality of the situation.” Turns out that brutal part feels a bit like a sledgehammer and sometimes even the baseball bat would feel great in comparison. At one point during the meeting I imagined myself leaping across the room, putting him in a headlock, and hitting him in the face, screaming “ADMIT THE BIOPSY RESULTS WERE GOOD NEWS…ADMIT THE BIOPSY…” until he admitted it. Instead of doing that I showed my frustrating by sitting quietly and chewing on the inside of my cheek.

After talking to the radiologist, they decided they should do a surgical biopsy [1] of the left breast to take out the papilloma. As a result we had to push back her surgery to the afternoon so they could do what is called an MRI wire guided biopsy. I am most excited that she will get to have another MRI given that is her least favorite test out of the suite. It sounds terribly uncomfortable and it makes me cranky. She will be in surgery for at least four hours depending on how it all goes. As I have mentioned before they will do a sentinel node biopsy in the operating room to determine if they need to take axillary nodes. They can’t actually see nodes so it basically means cutting out a hunk of flesh.

We will spend one night in the hospital and then be able to head home. She will have “drains” coming from her chest, which are tubes that will drain excess fluid from the operation. These will remain in for somewhere between 7 and 14 days depending on the amount of fluid.

The real kicker is the pathology report from the operation takes 7-10 days. And so we wait, so we can wait some more.

***

[1] The only difference between a surgical biopsy and a lumpectomy is with a lumpectomy you know it is cancer, where a biopsy you don’t. You say surgical biopsy, I say lumpectomy, surgical biopsy, lumpectomy, surgical biopsy…

We have completed every test known to man and we have all the data possible, short of the pathology from the mastectomy and lymph node dissection. So what are the possible outcomes and what are the data and doctors telling us? Here is what we know:

1. There is a large area of Ductal Carcinoma In Situ (DCIS) in the right breast. It is unclear whether or not there is also some invasive carcinoma present in the area as well.
2. It is a “high risk” DCIS case due to the size of the affected area (>5 cm), the type of DICS (comedo) and her swollen lymph node.
3. The fine needle aspiration of the swollen lymph node did not return cancerous cells but still concerns Dr. Dirbas.
4. Jul’s cancer is estrogen receptor positive (20%) and progesterone receptor positive (30%).
5. There is a small benign papilloma in the left breast.
6. Tests show the cancer has not spread to the bones or major organs. This means that we have escaped Stage IV. The pathology following surgery will determine whether it is Stage 0, I, II or III.

There are basically three paths in front of us each representing different levels of severity.

Contained – Stage 0

This is the best option. The ductal carcinoma has the all important “in situ” at the end. It hasn’t left the ducts.

In this case we escape with a mastectomy and potentially a surgical biopsy on the left breast. No further treatment needed except perhaps Tamoxifen for five years to prevent future breast cancer occurrences.

Invasive – Stage 1

In this case, in addition to the DCIS we know is there, there is also invasive carcinoma in the tissue. So far we have found no evidence (no “definitive evidence”) that this has happened. That being said, the tests we have done are a pretty crude way to detect this. You are counting on the needle biopsy hitting the right area or that the carcinoma is big enough to see.

The test results would suggest that if there is invasion, it is most likely what they call micro-invasion. This means the cancer has invaded the tissue, but hasn’t developed enough to show up as a tumor.

In the case of invasion, Jul would have the mastectomy followed by possible radiation and/or chemo plus Tamoxifen for five years.

Metastasis – Stages II-III

In this situation the cancer has traveled to other parts of the body. Jul’s major organs and bones were clear so if it has metastasized it would be in the axillary lymph nodes (the nodes under one’s armpit). Jul’s swollen lymph node fine needle aspiration was clear but there is always the chance that there are some cancer cells in the node that the needle missed. We won’t know the answer to this question until the lymphs are removed and biopsied as part of Jul’s mastectomy. Test data makes this seem remote, as does assurances from Johns Hopkins, but our doctor’s concern is, well, concerning.

In the case of metastasis, Jul would have a regiment of chemotherapy following her mastectomy and possible radiation as well plus Tamoxifen for five years.

The mastectomy will include the removal of the right breast and the removal of the sentinel lymph nodes (these are the first lymph nodes in the drainage path out of the breast). The sentinal lymph nodes are identified by injecting a radioactive isotope into the area the day before surgery. During surgery the doctor uses a Geiger counter to identify which nodes picked up the isotope first. These are the “sentinel nodes.” These nodes (could be only 1 or as many as 5) are then removed and dissected in the OR. The theory suggests that if these nodes are all clear, the remaining nodes in the axilla are also clear, no need to remove any other nodes. On the other hand, if they find any cancer present in these nodes they will take more nodes out until they feel they have gotten as many as necessary. This number could range from 10-30. They will then dissect these as well. 0 nodes positive – GREAT! 1-3 sentinel nodes positive – OK. 4-5 sentinel nodes positive – not great. >5 nodes including remote axillary nodes positive – bad.

And that is what the road ahead looks like through this thick fog of waiting.

As I’ve mentioned before, Johns Hopkins has an amazing site where they respond to questions about everything and anything relating to breast cancer. They usually respond within a few hours. Jul asked a question on Saturday:

I have an extensive area of DCIS in my right breast (6 cm). No definitive invasive cancer found from core needle biopsy. I had a fine needle aspiration done on my swollen axillary lymph node. The pathology came back clear, no malignancy found. Is it still probable that malignancy can and will be found in this lymph node once sentinel node biopsy is done during mastectomy? Surgery is scheduled for 2/15. I would love to feel good about the “clear” results but swollen lymph node makes me very nervous. Thank you for your expertise and for your time. There is no better service for patients going through this than yours.

The odds are very much in your favor for this node to be negative based on your disease being DCIS. lymph nodes swell also in response to having had a breast cancer. so this is more than likely the cause. it would be categorized as a “reactive” node.

If you are looking to donate to the area of breast cancer support, please keep this service in mind.

Be utiful.

We talked to Dr. Dirbas tonight. The areas of concern in Jul’s left breast are benign. The cauliflower shape is what is called intraductral papilloma — growth in the gland or fibrovascular tissue [1]. The growth was only 2 mm. 

You sometimes find cancer around a papilloma so radiologists will often recommend a surgical biopsy to remove and the examine the area. Dr. Dirbas has not talked to the radiologist about recommendations yet, so we don’t know where we will go with the left breast as of now.

On the call Dr. Dirbas continued to express concern about Jul’s swollen lymph node. “Nobody will be happier than me when that thing is out…oh…well…except you,” he said at one point. Nothing like that concern to set a bunch of butterflies loose in your stomach. Round and round it goes, where it stops, nobody knows…

***

[1] Fibrovascular tissue is how you say “fibrous tissue and blood vessels” if you are a doctor.

“Preliminary results” from a test (at least in radiology and pathology) means that a resident and a fellow have read the scan, but a doctor has not. The preliminary read often happens right away (I think because residents have to work 1000 hours per day) but a doctor doesn’t usually get to it until later.

I’m still hunting for an exact transation for “area of concern” and “no definitive evidence.” The second phrase always makes me imagine the pathologists watching an instant replay like they do in the NFL.  ”Hmmm, let me see it again, ok back, forward again, stop. Right, got it. Nope, there just isn’t enough definitive evidence to overturn that cancer penalty. Scott and Julie will be charged with their second time-out.”

The cool kids call this procedure a MRIGCNP.

Just kidding. Although, they might, now that I think about it.

We just got done with the MRI guided core needle biopsy. It was a long one (a bunch of setup and then about an hour and a half of “MRI’ing” and “extracting”). Before the procedure Dr. Daniels (the radiologist) showed us the “areas of concern” (AOC) as seen in her previous left breast MRI. They are in the “upper inner” and “lower inner” quadrants of the breast. It was really amazing to watch him use the middle mouse button to scroll through slices of the breast. (This would be even cooler were it not for our current “situation.”) The lower area appeared to have the same “cauliflower” like shape as the DCIS in her right breast. That being said, Dr. Daniels said the right breast could be a mix of benign and malignant cells so the cauliflower doesn’t indicate malignancy. Dr. Daniels also told us that if Jul didn’t have the cancer in her right breast, they would have just monitored these AOC and not done a biopsy. He doesn’t believe it is carcinoma but would like to be safe.

Like a standard MRI, Jul has to lay on her stomach without moving for the entire time. Unlike the standard MRI, they are sticking things in her during the procedure. Jul described this entire procedure as “excruciating,” which appears to have been a well chosen word. Fortunately it wasn’t painful — just horribly uncomfortable in the “sit in one place for 3.5 hours” way. The machine was different — instead of the long tube, there are two donut-like magnets (like oversized CT machines) that create a gap to allow the doctor to access the patient during the procedure.

MRI machines make these “wah wah wah wah” sounds and then loud “bang bang bangs” constantly. They always sound like they are broken. Dr. Daniels said the “wah wah wah wah” sound was the cooling tanks which keep the main magnet at 6 degrees Kelvin (brrr…that is colder than winter). The loud “bang bang bang” noises are smaller magnets that are moving around to create a differential magnetic field. They make that noise because they are fighting against the pull of the main magnet. If anybody knows how to make a small magnet resist a huge magnet at 6 degrees Kelvin without making banging noises, please let me know.

Once Jul is all situated they start taking scans. At some point they give her contrast to highlight the AOC. Then using these scans as maps, they insert tubes into her breast. Once they are in, they run another scan to verify the tubes terminate in the AOC. Once everything is set, they fish these nanobot-motor like things down the tubes and they extract a circular area of tissue for pathology.

The samples were off to the pathology lab today and Dr. Daniels hoped we could get results by the end of the week (sigh).

Jul is now getting another MRI done as part of a research study testing new imaging software, which should take about an hour. They had lots of tests of imaging women without cancer, but none of women with cancer. It’s their lucky day, I guess. Of all the crazy tests we have had to do, Jul’s least favorite is the MRI. And now she has had four. The irony is thick, like breast tissue.

Thanks, I’ll be here all night.

After that, on to acupuncture, and then, hopefully, back to the ranch.

p.s. Can we get an open wireless network at the hospital? I had to kill a resident just to get a terminal with an internet connection. That probably won’t scale.

• Reconstructive surgery pre-op – Jan 30th 
• MRI guided left breast biopsy – Jan 31st
• Mastectomy pre-op – Feb 9th
• Lymph node injection and scan (so they can find the Lymphs during surgery) - Feb 14th
• Mastectomy – Feb 15th

Only one test (we know about) remains to be scheduled.

Bone scan is clear. Whew — big, huge, major sigh of relief.

Jul’s cancer came back hormone receptor positive. This is a good thing because it means the cancer basically feeds off a hormone like estrogen. If necessary we can starve it using a drug like tamoxifen which blocks the hormone receptors to the cells.  We didn’t get what percentage (sometimes it is accompanied by a percentage) of the cancer was hormone receptor positive.

MRI guided biopsy of the left breast is looking like Feb 2nd. They might have a cancellation on Jan 31st.

The genetics team at Stanford is going to do a genetic work up on Jul to see if she has a genetic mutation that makes her receptive to this cancer. If she does this would increase the chance it could spread to the left breast and so might change how we think about treatment.

Here is how it breaks down now.

Jul got her bone scan yesterday. This involves injecting a radioactive isotope into her blood, waiting 3-4 hours, and then scanning her with a full body X-ray machine. There are a couple different types of bone scans — the one we did is called a scintigraphy. It detects areas of increased or decreased bone metabolism. Basically the isotope (or radiotracer) is absorbed by the bone marrow at a specific rate. When it absorbs it at this standard rate it shows up as gray in the X-ray. Abnormal metabolism shows up as either dark hot spots that indicates greater tracer uptake or light cold spots that show decreased bone metabolism. Cancer in the bones interrupts the normal metabolism rate.

Go gray.

The X-ray took about 40 minutes with Jul lying on a table without moving. Once they completed this, the tech told her she needed to go check with the doctor to “see if she needed to do additional scans.” Then she was gone for over 15 minutes.

A patient who was getting scanned for a bone fracture might not notice the time pass. For a cancer patient every minute is like an hour. If they need to take more scans that is a bad sign and so the longer you wait, the more you expect them to come back and tell you they need to focus on some “areas of concern.” A cancer patient has already had this happen once — that is why they are a cancer patient.

It wouldn’t be hard to handle this differently. When I get my chest X-rays as part monitoring my cancer the tech tells me, “I’ll be right back! I need to go verify I got the right coverage. I should be gone about 15 minutes.” Then they come back in five. I know what she is doing but she doesn’t remind me and doesn’t make me wait longer than I expect.

Everybody involved in this process needs to understand the cold, relentless fear of waiting for somebody to tell you how much time you have left and what your quality of life will be during that time. I don’t ever expect this process to not suck — I just want it minimize the suck wherever possible.

We should have the results from the scan in 48 hours.