If Xena was an attorney and a breast cancer patient....

Today was good. Good-ish. I got over the emotional shock of things and reclaimed my very precise, thorough, and rational decision-making self from the grief and shock of the initial diagnosis. I was worried this weekend that I would be too emotional to ask good questions or make good decisions for myself, but I'm over it. I did what I needed to do today and asked the questions I needed to ask. Back to being "Xena"... at least more Xena than Gabrielle.

This morning started with a breast MRI at 6:45am. The injection contrast was weird and felt like a foreign substance floating in my body for hours afterwards, but other than that, things went fine. The radiation tech, Richard, was awesome. I was feeling kind of overwhelmed with details and choices, so I let him pick the music. The first song he chose for me was Icona Pop's I Love It. I did love it! I hear this song on my playlist at the gym all the time, and it transformed my attitude from helpless patient, where cancer was something that happened to me, back to fighter, master of choices, director of my own fate. It's been quite the change. I'm just ready to handle business and get this done. I got all of my records before I left the MRI place, although I now know it will take the radiologist a day or two in order to read the 1000s of images taken during my MRI.

Later in the morning, I got a recommendation for a surgeon and oncologist in my area from a world-renowned highly regarded expert far from my home, and that expert was kind enough to offer their personal cell phone number and spend quite a while talking with me about what to expect, what to look for, and additional options I might have in selecting a coordination team. In essence, it all starts with the surgeon. Based on that advice, I called and declined another oncologist appointment that had come up. I don't want to waste people's time by being unprepared, but it is really hard because I don't know what I need, and I don't know who to talk to in what order. The expert helped explain coordination of care, so breast surgeon first it is!

By luck, I actually got in to see a surgeon today. Not the first I asked for, but a very highly regarded one, who was recommended as one of "either" of the two choices. There wasn't enough time for anyone to join me, so I went alone. At the time, I was still worried that I would be too emotional to make typical "Allison decisions," logical, precise, and thoroughly analyzed. No problem. I was at the breast surgeon's for 3 hours, 15 minutes of which were paperwork and another 15 minutes of physical exam. I asked a ton of questions, not even realizing the time elapsing. Happily I was the last appointment of the day, and the surgeon offered me all of her time until day's end, which was a real gift.

The surgeon I saw today, Dr. Bonnie Sun at Sibley, was also brilliant. I can easily see how she must have impressed past professors with her consistently precise textbook answers. I don't know if she ever taught class, but she kindly and clearly corrected me whenever I repeated an answer of hers that I misunderstood. At one point, she asked me what I did for a living, and when I told her I was an attorney, and I'm sure all my probing questions likely made sense to her then. It's not that I deposed her as a hostile witness, but I am an exceptionally thorough question-asker. In many areas, I did my best to get to a precise answer in quantitative terms rather than qualitative terms. I don't want to know "more," "better," "less," smaller." I want to know "90%," "objectively positive," "less than X cm." In my assessment, she resisted my push towards these more quantitative terms, perhaps as a good doctor or medical expert should, but I still craved that level of certainty. Even after asking her questions for 2.5+ hours, I still have things I'd like to ask and that remain unanswered. This seems to be the nature of the beast.

As a result of today's breast surgery consult, I have more information, some good, and some not so good. I do not yet have a settled gameplan, because there are still pending tests and reports I need:

1. Radiologist's analysis from the MRI - this expert analysis lies in the art of interpreting the images, in part based on familiarity with the machine and being able to discern "artifacts" that are a product of the way the image is taken (like a double exposure on an old school film camera) verus a reflection of things that are actually there, whether artery, lymph node, or something else. Since I only had the MRI this morning, it should be available hopefully in the next day. I wish I had known this, because I would have either worked harder with the radiology place or been more comfortable with an appointment with the surgeon later this week. I'm still glad I know, but if it were me giving a patient advice, I'd want to have all the cards on the table. The good news is that from what even I could tell from the raw images we had today, the left breast is totally fine. The right breast only has one tumor, but the surgeon pointed out that tumors don't always grow nice and neat, and the tentacles emanating from that mass could significantly change the volume of tissue that might need to be removed in either of my potential surgery options. More on that in a minute.
2. FISH analysis from pathology - My HER2 or H2N, depending on which acronym you choose, is equivocal at 2+. Additional analysis called FISH is apparently required to determine whether I am negative or positive. While I did get a lot of data looking at the report today, this is another major piece I need to know.

Given that those two very important things are missing, we still walked through the first level analysis:

1. Type of cancer: Invasive ductal carcinoma, with ductal carcinoma in situ. "in situ" means in place; "invasive" means it has moved out of the ducts and is showing up in nearby tissue. Clearly, the worse type gets top billing, so that's why invasive ductal carcinoma gets top billing.
2. Grade: moderate differentiation. The cells have mutated, but they still look and act somewhat like their original, normal selves. Middle of the road.
3. Size: 2.7 cm. This is apparently "not small" in comparison to my breast tissue size. I'm a 34E / DDD, and despite being sized out of Victoria's Secret, that is still considered small in breast surgeon world. A 10 cm tumor is considered large, but I got the sense that 5 cm was also not small. A tumor less than 2cm would give me much better options according to the standard of care. Oh well. It is what it is.
4. Nodes affected: Again, we are waiting on the radiologist's analysis of the MRI, but it didn't look like it to a layman. This would be very good. If any node is infected, it changes surgery and potentially chemo options.
5. Metastases: Typically the "sentinel node" or first node in the lymphatic drainage system will get hit first, so if there is no cancer in any nodes, then it is unlikely to have metastaized, meaning spread to other organs. If the sentinel node is affected, more testing would likely need to be done.

Based on the above, a tenative diagnosis is cT2N0M0, meaning clinically diagnosed as stage 2 based on size, with no lymph nodes or metastais.

[By the way, the levels here are my own application based on way too many years of schooling in the law. It's just how I process information. It probably means nothing to doctors, and nobody reading this blog should take what I say here as anything other than a narrative of my own personal experience.]

The second level analysis is of three factors that predict the "personality"of the tumor, beyond the mere physical characteristics described above.

1. Estrogen receptor status = Positive in >90%
2. Progesterone receptor status = Positive in >75%
3. HER2/neu or H2N status (H2N is what she called it and is likely more correct and complete, but HER2 is what you see often on websites, so I am including both) = +2, equivocal, more analysis needed through FISH, awaiting results from CBL Path in the next day or so.

The ER/PR positive status is a good thing. Normal cells are responsive to estrogen and progesterone, so they haven't gone completely weird, and it means they will respond better to hormonal therapy (i.e., tamoxifen). On the other hand, I am young for breast cancer and want to have children, and tamoxifen basically induces menopause, so pluses and minuses there will be determined with a medical oncologist. Apparently ER/PR+ is more typically associated with "old lady" breast cancer. When I asked her what it was about me that might be the reason why even as young as I am, that I have this old lady's disease, she said "Random. Completely random. It is rare for people your age to have cancer of any type, and particularly this kind." There certainly are other more rare cancers, but when she said that, it really made my experience of feeling "not normal" validated, in a positive and empathetic way.

The H2N status, if negative would be the best possible prognosis (i.e., not dying) for this tumor profile. If it is positive, I will definitely have chemo. Apparently this gene if over expressed in the tumor (as opposed to in all my cells), is associated with a much more aggressive type of cancer. And we can't have that.

The third level analysis was not good, to the extent known:

1. Ki67 - 50-70%. This deals with the rate of growth of the tumor. Apparently anything over 20-25% is considered high. Thus, mine is BAD. It will take talking with the medical oncologist to figure out how bad, but in any event, I shouldn't waste time. Thank goodness I found it and took steps to do something about it.
2. p53 - >90%. This is a general marker for cancer of any type, including cancers other than the breast cancer I've already been diagnosed with. Not good. I need to be careful my whole life. This may affect the decision to do chemo or not.
3. Individial genetic counseling, e.g., BRCA1/BRCA2 - recommended and referral given at the appointment, but to be determined. If I were positive for both, I might be encourged to choose a more aggressive surgical option.

These three levels of analysis play into the surgeon and medical oncologist's recommendations about what to do when. Chemo or hormonal therapy can come before surgery as "neoadjuvant" therapy or after the surgery. If I will be having chemo anyway, it makes sense to have it beforehand, because it may increase the range of my surgery options. They won't give me chemo to shrink the tumor for a better cosmetic result though.

The two basic surgical options are lumpectomy + radiation and masectomy, and surgically, sentinel lymph node biopsy and/or auxillary lymph node dissection are considered after that.

Notably, it is possible that the tumor has grown "tentacles" into the breast tissue surrounding the duct. Tumors don't grow neatly. That could affect the total size taken out by surgery by volume in order to achieve clear margins, but it depends on the radiologist's assessment. Basically, I am not a very good candidate for lumpectomy right now, although it could be done with a suboptimal cosmetic result if I really insisted on it.

Good news:

• my tumor is far from the chest wall, so it is unlikely any pec muscle will need to be taken, maybe just the fascia if a masectomy. Tumor cells have a tough time growing through fascia, so if it has to be taken, at least it is a clean section.
• only the right breast is affected.
• only one tumor appears to be present.
• doesn't look like lymp nodes are affected, which likely also means no metastases.
• It looks like a nipple sparing and skin saving surgery is possible because the physical exam showed things moving well.
• chemo before surgery (neoadjuvant) could potentially shrink the size of my tumor to make lumpectomy a good option.
• lumpectomy and masectomy are essentially the same in terms of recurrence and survivability. Hacking off your breast won't prevent breast cancer from coming back, but you might still do it any way for other reasons.
• a lumpectomy might be possible after chemo, if the tumor shrinks to 2 cm or less. Then, only 3 cm would likely need to be taken with the goal of achieving clear margins, and no additional reconstructive work would be likely.
• a lumpectomy is a 1 hour-ish, outpatient surgery with only 1-2 weeks recovery time needed, if we can get there. Basic Tylenol is all you need after. No drains. Sleep in your own bed the same day.
• Even if a lumpectomy is off the table, I'm a really good candidate for a masectomy with implant reconstruction.
• My breasts are "nearly perfect" as is- no drooping saggy excess tissue. (Too bad that is about to change with whatever surgery I have.)

Bad news:

• I'll never breastfeed a child from my right breast, no matter what kind of surgery I have.
• At the current size, a lumpectomy is likely to yield a suboptimal cosmetic result, with a significant decrease in size and a noticeable indentation in the breast. This could potentially be fixed through fat grafting at a later date, but this in itself is controversial. If you just took out a tumor of crazy breast cells that didn't know what they were supposed to be, and you inject immature fat stem cells that don't know what they are supposed to be, it is kind of a gamble to see how they turn out, normal or tumor. The volume of tissue that would need to be removed at this time is about 5 cm in order to achieve a clear margin around the 2.7 cm mass. Ugghhhhhh.
• Bilateral breast reduction is not possible, because in the surgeon's words, "I couldn't make them any better."
• Not a candidate for partial breast radiation because I'm too young. Apparently women over 70 are, mostly because they won't live that long any way and the risk of recurrence with partial breast radiation is higher, so it's an acceptable risk in many of those cases. Not mine.
• Not a candidate for an organic flap reconstruction made out of my own muscle. My breasts aren't that big, and the surgery for a routine masectomy with implant reconstruction would go from like 2 hours to 8-10 hours, with microsurgery of vessels required, etc. It's possible, but probably not necessary. Besides, I do CrossFit, and I really do need my lats to do pull ups and other things. Same thing with my gracialis. I don't have muscles to spare. I use them all.
• A masectomy is going to hurt terribly badly. Real pain, real drugs, and drains for 1-2 weeks, minimum and likely a 4+ week recovery. I wouldn't even be able drive. A second surgery is likely required. I would get a tissue expander at the time of initial masectomy, which would later be replaced by an implant in a much less horrible surgery, but still surgery.
• A masectomy will always feel weird. It will never really feel like part of me.
• Because I am weird and allergic to multiple types of plastic including contact lenses and other things normally considered hypoallergenic, it's possible I will be allergic to the implant and/or the drains. (No drains in the lumpectomy though.) We may swipe a drain from the OR and borrow an implant sample to tape to my body. If I get a rash or hives, we'll know that plastic is a no-go.

Looking at my surgical and long-term recovery options comparing lumpectom versus masectomy, I can't decide yet whether option 1) chemo + lumpectomy + radiation feels better or worse than option 2) potentially just masectomy or option 3) masectomy + radiation. Option 4) chemo + masectomy + radiation and Option 5) masectomy + radiation + chemo seem pretty horrible on both accounts, but at least option 4 would give me the chance to try to hope for a lumpectomy and breast conserving therapy. The radiologist's assessment of lymph nodes and tentacled tumor size as well as the pathologist's FISH analysis are still very important. Sentinel node biopsy will likely be a part of either lumpectomy or masectomy, although taking more than the first 1-4 nodes will depend on the MRI and potentially the post-surgery pathology reports. It remains to be seen.

I left our appointment with referrals to the medical oncologist, plastic surgeon, and genetic counselor, and an affirmation to go for the fertility appointment.

Tomorrow will be another opinion with a surgeon, this one at Johns Hopkins' "big house," as well as with the fertility doctor. I still have a long way to go, but I feel so much better having things rolling along and starting to settle in place.

A quote to leave you with that's been on my mind the last few hours and is my intention for tomorrow:

Thank you all for everything so far. I really feel uplifted by the outpouring of support.