Staging

I get asked a lot what stage is my breast cancer. I haven’t been formally informed because they don’t like to stage you before surgery. Surgery can change what stage you’re in, especially when lymph nodes get involved.

On that note, I’m at least stage 2. 

One reason I know this is the clinical trial is for stage 2 to 3A. Oncologist wouldn’t suggest it if I didn’t qualify.

Second, simply by reading. Specifically, I’m stage 2B. Each stage has a further breakdown depending on size (or number) of tumor and number of lymph nodes. 

Stage 3 is when it’s in the breastbone or chest wall. Stage 4 is when it’s spread other places (metastasis).

Here’s a breakdown of 2A and 2B:

In general, stage IIA describes invasive breast cancer in which:

• no tumor can be found in the breast, but cancer (larger than 2 millimeters [mm]) is found in 1 to 3 axillary lymph nodes (the lymph nodes under the arm) or in the lymph nodes near the breast bone (found during a sentinel node biopsy) or
• the tumor measures 2 centimeters (cm) or smaller and has spread to the axillary lymph nodes or
• the tumor is larger than 2 cm but not larger than 5 cm and has not spread to the axillary lymph nodes

In general, stage IIB describes invasive breast cancer in which:

• the tumor is larger than 2 cm but no larger than 5 centimeters; small groups of breast cancer cells — larger than 0.2 mm but not larger than 2 mm — are found in the lymph nodes or
• the tumor is larger than 2 cm but no larger than 5 cm; cancer has spread to 1 to 3 axillary lymph nodes or to lymph nodes near the breastbone (found during a sentinel node biopsy) or
• the tumor is larger than 5 cm but has not spread to the axillary lymph nodes

I am that highlighted section. So, this is why I say my tumor being 2.5cm is in the “small medium” scale. If my tumor was no larger than 2cm, I could have been stage 1B (assuming my lymph node cells were/are small). On the other hand, if I had 4+ lymph nodes involved (not my current suspected 3), I’d be in stage 3A (regardless of size). My 2B vs 3A might be a little close, but I’m still 2B!

Your cancer cell grade and receptors can also make a difference. Hormone receptor cancers tend to grade a little lower based on scales than my HER2+ even if they meet stage 2 criteria. 

I do have to say that I’m very thankful for the biopsy on my lymph node early. I don’t understand how people start treatment and then get their lymph nodes tested afterwards. At least in my case we know it’s spread. We just don’t know the extent of my lymph node spreading. It’s kind of comforting knowing in advance. Don’t get me wrong, it’s scary too because my body could be fast tracking cancer to other areas, but at least we know now. 

There is also a new system called TNM Staging. You can read about it here. 

In TNM, I’m T2, N1a (I think), M0

Doctors, Doctors, and More Doctors

Going backwards...

Consult #1: Surgeon - Dr. Guiroy

Surgeon asks me what I know about what I have and I rattle off: IDC, grade 3, lump and lymph node in my armpit tested positive, calcification is assumed benign, HER2+, HR-. She looked at me and said, “Are you a scientist?” We all chuckled. So I had to explain my background. I guess not everyone is that aware of their cancer by their first consult? 

She asked what I was hoping to happen. I told her I was hoping to avoid a mastectomy and, of course, chemo and radiation. She explained that a mastectomy is definitely not needed. She said the MRI had found that my lump was largest at 2.5 cm. I asked if that was considered small, medium, large? She kind of hem’d and ha’d and I said, “medium?” She said, “yeah.” I assume I’m more on the “small-medium” scale. 

She explained that I would do treatment before surgery so I wouldn’t see her again for at least 6 months. Treatment pre-surgery (called neoadjuvant) has a chance of causing the tumor and lymph nodes to shrink (side note: this was the first time I really realized the “lump” as I had been calling it for months is actually a “tumor”. Lump sounds better haha). Smaller things means less surgery. 

She explained the lymph nodes. They could do a dissection, which is basically removing all or most of my lymph nodes in that area of the arm pit. You have several 10’s of lymph nodes in that area. By hoping to shrink things and using a dye, they may be able to find the cancerous sentinel node (the one that is actually transporting the cancer, there are 3 sentinel nodes I think?) and remove that one and a couple connecting to it instead of removing all or most of my lymph nodes. Any time you remove lymph nodes, you have to worry about Lymphedema (swelling in the limbs due to fluid blockage in the lymphatic system). A dissection puts me at high risk for it. By doing a sentinel node removal instead, we might prevent me from having Lymphedema (yes, please!). The biopsy done on my lymph node she says we don’t actually know which one it is because they’re close together. So she won’t be able to know till surgery. 

Funnily, after I spoke to her, I realized she never answered my “chemo” question. I wasn’t sure if that was because it’s not her realm of expertise or if she didn’t want to tell me I had to have chemo. Obviously no one wants know they have to have chemo. She did answer my radiation question and said that’ll be up to the radiation oncologist after surgery. 

She was nice, older, sounded German. I had a really embarrassing moment where I could NOT understand a question she asked me. I asked her to repeat herself 3 times. I felt so embarrassed! The masks didn’t help! She also told me my oncologist was basically “the” oncologist for SVMH. So that was nice to hear. She told me that this was her plan for me, but we would have to hear what Dr. Aziz (my oncologist said). She said, “he might disagree with me...Oncologists are...particular.” We all chuckled. 

Consult #2: Radiation Oncologist - Dr. Andrade

Young guy! I was kind of looking at him and thinking, “You’re at most 5 years older than me?” He was really nice, though. He asked me who I had spoken to and what treatment plan had been suggested and I told him. He also asked if anyone mentioned chemo and I told him that Dr. Guiroy had managed to not answer me, but I thought that was because that’s Dr. Aziz’s realm. He kind of did a thoughtful “yeah...” and then moved on. Once again, another doctor avoided the chemo mention as part of treatment! He did semi-mess up though as he was talking to me about treatment, he mentioned “chemo” as part of my treatment. At that point, I had done enough research on HER2+ treatment that I had very little hope that I was avoiding chemo so it didn’t really worry me. 

He explained that treatment beforehand for HER2+ has a high chance of causing the cancer to go away entirely. So there’s a chance I wouldn’t see him after surgery. I asked what the odds of that happening and he hem’d and ha’d and I asked “50/50?” And he agreed that 50/50 was good enough. So, that was nice to hear. 

He said for my type of cancer, he would recommend 25 rounds of radiation and, given my age (eye roll), an additional 5 for a total of 30. He said it’s 20 minutes each round, everyday of the week minus holidays and weekends. So, that is 6 straight weeks of radiation! We talked about potential issues. Immediate issues is the fatigue and the sensitive skin and peeling (it’s basically an extreme sunburn). He also said we have to worry about the heart receiving that much radiation. Of course, radiation also has a chance of causing others types of cancer (I knew that, but hearing it when you have cancer is a little like “what...?”). So there is a small possibility I may develop cancer from radiation later in life (he says it’s rare, but is a possibility). 

He also had received my genetic test so he was able to tell me I didn’t test for anything but the Variance of Unknown Significance (VUS) on the TP53. He said he had done some research and they find my type often in people of Asian descent, but they can’t determine, yet, if it’s an indicator of increase cancer risk or not. TP53 CAN be an indicator of increase cancer risk (all cancers), especially coupled with family history. TP53 is dominant so it can be genetically passed on to children. When parents or children are found to have the TP53, it’s often they find a history of cancer in the family. Scary. Some people with TP53 decide to not have biological children because of it (or do IVF to skip the gene). At any rate, they find TP53 often in children because children with rare cancers at young ages are a clear indicator of TP53. Where my TP53 marker is, there’s not enough known to make a determination. If my genetic’s lab ever finds out, I’ll get updated (benign or not). 

He was really nice and showed me my mammograms and MRI too. So that was cool to see and he explained it to me. The scientist in me found that fascinating. 

Consult #3: Oncologist - Dr. Aziz

Just like when the Doctor told me I had cancer, Dr. Aziz took a breath before telling me I was going to do chemo. I really would like to be the fly on a wall of a few patients who fall apart in anger or tears because do they expect me to have some “moment” because of my age? The fact I have cancer? I’m not sure. I mean, sure, being told you have cancer might cause a moment, but by the time you get to the part they tell you you’re doing chemo, I would think you’re set for chemo since cancer + chemo = common. Isn’t that what you normally hear when someone has cancer? They go through chemo? At any rate, I wasn’t surprised by the chemo.

He told me it’s 6 rounds of 4 drugs (2 chemo, 2 targeted therapy drugs for HER2+). It gets administered every 3 weeks. He did tell me, though, that there’s a clinical trial of less chemo that I could try (it’s once a week for 12 weeks). This national clinical trial was not being done at SVMH, but he could see if maybe Monterey had it, otherwise, he knew Stanford was doing it and he could get me in through there. He said if I went the clinical route and cancer was still found, they can hit me with more chemo after surgery if need be and radiation. If there’s no cancer left, then great. The real thing about the clinical vs traditional in terms of post-surgery is the extension of treatment if I don’t respond well to less chemo. 

How I see it? I can go traditional, get pumped up with all this chemo, and still come out the other side with cancer left and go through radiation (I could get more chemo too). I can go traditional, get pumped up with all this chemo, and come out with no cancer. Or...I can go clinical, get pumped up with less chemo, and still come out the other side with cancer left and go through more chemo after surgery (if need be) and radiation. I can go clinical, get pumped up with less chemo, and come out with no cancer AND HAVE LESS CHEMO. So, I don’t really see a downside on doing the clinical trial, except the travel. I do think I found the trial is being conducted at the Palo Alto Medical Foundation - Santa Cruz (Dominican Hospital) so hopefully that’s true! Be less of a drive for sure. I also feel some type of “obligation” as a person who is younger and a less complicated stage of cancer to try this clinical trial for the betterment of women after me. What if they do find that less chemo works as effective as the more chemo? Why wouldn’t I try to help women (and men) after me be subject to less chemo for similar results? Progress cancer treatments from the day of “throw everything at it to kill it” to something that’s more refined and just as effective. Or at least given women (and men) the option in having less chemo? In addition, it’s the same drugs. As Chris pointed out. It’s not new drugs or a new treatment plan that’s radically different. It’s the same drugs, same steps, it’s just one less chemo drug. So it’s not your typical “scary” clinical trial you often hear about. 

The doctor also explained this about the clinical vs traditional. He said SVMH asked to do the clinical trial, but was denied at this point. It’s in Phase 2 right now (that’s testing treatment, I think? Phase 1 I think is establishing protocols? Phase 3 is wide-range testing of treatment...?). 

He did tell me he is getting me scheduled for a CT, echocardiogram, and port-a-catheter insertion. I apparently also get a bone density test too. The CT is to make sure cancer hasn’t travelled anywhere else and to get a “baseline” (reality of my life...worrying about getting cancer somewhere else in the future). Echocardiogram is to make sure my heart is strong enough for chemo (that’s comforting to hear...). The port-a-catheter or “port” I had already decided on. I guess some places make it optional to patients, but SVMH basically doesn’t. It saves your veins in your arms from chemo. The port is inserted under the skin and goes directly into a main vein that goes to the heart. The port will be used to draw blood, chemo, etc. I’ll be getting poked a lot so it’ll help save scar tissue issues in the arms too. 

He lastly said that he’s going to give me a shot to put my ovaries “to sleep.” It’s basically a medically induced menopause. This will help them to not take in extra chemo if they’re not functioning like normal. Despite not wanting kids, because I’m young, he wants to leave my options open to me. Plus, given it’s chemo, I’d rather my body is subject to as little chemo as I can so I wasn’t against it ultimately. 

Consult #4: Chemo Teach with NP

Guess it’s not really a consult. It’s more what it’s named. It’s to tell me the process of chemo treatment and what to expect. This Chemo Teach was assuming I would do the traditional chemo at SVMH. Oncologist had told me he wanted me to do it just in case. We spoke for AN HOUR. My brain hurt so badly at the end! The plan was to have me start chemo on 3/31, but given it’s now 3/27 and I haven’t had any of my other appointments, it’s not going to happen by 3/31. I also want to do the clinical so I think that’ll change my timeline too. I’ve asked 3 people and all 3 of them say it’s insurance that’s taking so long. They have yet to approve anything. I guess I’ve moved on from the “optional” portion of my treatment (therefore they did it without prior insurance approval) to the “required” portion (my MRI was approved rather quickly, though? I even got a notice that was approved and doesn’t appear in my insurance claims). It can take anywhere from 5-10 days, but oftentimes a week. So, maybe early next week I’ll hear. 

She went over the process of chemo: 4 drugs (traditional) given by IV one after another over about an hour each. Before chemo is given, blood tests are completed to make sure my white blood cells count and other indicators are at an appropriate threshold to do chemo. So the first session will probably be 6 hours long because of all the tests and also they go slower in the beginning to make sure there’s no adverse effects. Time to stock up on books, movies, tv shows, notebooks, or whatever else to entertain myself for 4-5 hours. I do have an iPad and external battery is going to come in handy and my AirPods too. Snacks also...everyone says to bring snacks and a blanket. 

She went over side effects (nausea, constipation, diarrhea, etc), medications I’m to take and when, things to do at home given I’m not home alone, and all sorts of things. Chemo is CRAZY. When I’m being given chemo, I’ll also be given a steroid at the same time. I also get a steroid I have to take a few days after chemo. I also get an anti-nausea medication I need to take for a few days after chemo. I also got a lidocaine cream to put over my port site to help with pain (I’m thankful for that; I’ve heard other people find it super sensitive and have to ask their doctor for the cream so I’m glad mine gave it to me without asking). I also get a white blood cell growth enhancement thingy that auto-injects about 24-36 hours after chemo. It’s to help build my white blood count. She said bone pain is also common because the platelets in my bones are also being destroyed by the chemo. I can take over the counter meds for that. I’m thinking in my head “Am I going to have growing pain feelings at 35?” 

Hair loss will also happen. Oftentimes it happens right away with chemo, but will start to grow again shortly after chemo ends. Fatigue is normal too. She said to drink lots of water to flush the chemo out and to make sure my diet is good to help because my system will be messed up. She said to take it easy. 

I asked about the Covid vaccine and she said it’s pretty much too late for me to get it. It’s too close to chemo and we’re not sure how I’m going to react to chemo. She said if I’m doing well through chemo and they have a good grasp on how I do between treatments, maybe I can get it during treatment. Otherwise, everyone in my house getting it is a good step and we can hope that I still have antibodies leftover from Dec. 

One part that made me laugh is she told me to flush the toilet twice and close the lid after I pee for a few days after chemo. She said I’ll be peeing out chemo. She said it’s not a big deal (no one is going to have hair loss or start glowing), but to be on the safe side. It made me giggle thinking about the toilet glowing from the chemo I’m peeing out. 

That was pretty much the most of what we talked about. It was a lot of information. 

When I think about all my treatments and how long they last, if we go by the timeline I’ve been told now, it’s 18 weeks of (traditional) chemo/targeted therapy, I assume another 4 weeks before surgery, surgery, and then 6 weeks of radiation (I assume that starts 2 weeks after surgery? Complete guess). That’s 30 weeks of treatment. I’m looking at 7-8 months down the road I might be over the main part of this. Once those are all done, there are still follow-up tests and then starts the regular follow-ups. Talk about a long haul...

I know treatment alone can wear you down, but I think it’s now occurring to me the length of treatment is the real strength killer. So many women I’ve heard who stumble because of how long you continually go through this. I know my support system is good and I think I’m strong enough, but I also have to be realistic that I am going to have down days and those are okay and I will need to pick myself up again. I am trying to take this daily, though. I’m trying to not look too far in the future. I’m trying to not think about the side effects people have spoken about or to think about them. I may have an easy, breezy time of this and the time might fly. Or, it might be brutal and the only way to get through it is day-by-day anyway. Here’s hoping for more good than bad days. 

The meaning of hair

The one phrase you hear a lot is “it’s a personal decision.” There is no “right” way. There are medically suggestive routes and there are decisions that I have to be willing to live with. Some of those decisions give a whole new meaning to “live with.” 

I’m skipping over several days worth of updates, but what’s triggered this post is HAIR. It’s not my clinical trial vs traditional route for chemo. It’s not lumpectomy vs mastectomy. It’s not do I get a second opinion or not. It comes down to hair. 

You hear about how hair can be a part of your identity. Stars in roles for long periods of time are told not to change their hair. I’ve seen women cry on America’s Next Top Model when they went through their makeover and had to have their hair cut or drastically changed. Our society frowns upon bald women and men, but are more acceptable of bald men since it happens more often with them; however, if we were completely accepting of it, there wouldn’t be so many hair loss products for men AND women. Men and women cut, style, dye, and highlight their hair to “look their best.” Sure, some cuts and styles may be a personal/functional aspect, but still. 

When I found out I was going to do chemo, I wasn’t surprised, but then I started thinking about my hair and going bald. Chris was all, “We’ll buy you wigs and play with styles and colors.” I figured I have enough baseball caps that at least I’ll have an excuse to wear them. However, I had heard about cold capping from the FB groups. 

Cold capping are caps you wear a little before, completely during, and a little after chemo. The idea is that these caps are cooled to temperatures in the double digit negative degrees and will help shrink the blood vessels to your hair. The shrinking will prevent chemo from reaching your fair follicles and, therefore, saving your hair. The unfortunate thing is not everyone saves their hair (proper usage, types of chemo, health of hair) and some people get patchy baldness (usually improper usage). I HAVE heard/seen women in the FB groups who have saved their hair (they often say they save about 70-80% of their hair, that it thins rather than all comes out). There are frozen caps (they get frozen and you switch them out) or mechanically cooled caps (electric so coolant is pumped through it to keep a more even temperature throughout the head). The mechanic ones are considered the better ones (simply for the even temperature without switching). I looked up the cost of one frozen cold cap company and it’s about $370/month and a deposit. 

This is that moment where you weigh what your hair means to you personally. I’ve decided hair falls into 3 types of categories: vanity, normalcy, comfort. 

Vanity: My hair is my favorite feature. I don’t do fancy hair cuts, dye, or highlights, but I have thick, healthy hair that’s a color that isn’t flat or boring. We’re all vain enough to want to have our hair looking somewhat nice at some point (yes, some of us hair care more than others). 

Normalcy: Society says that women have (should have) hair so people don’t bat an eye when you have hair. It’s normal. Having hair is normal for me. I’ve never NOT had hair. People don’t think twice when they see me because I have hair. I don’t look at myself in the mirror differently with hair. 

Comfort: This is a little like normalcy, but it’s different. I’ve found some people “hide” behind their hair. It’s not so much the normalcy factor, but also the comfort of the norm. I’ve heard parents of young children appreciated having their hair because they looked less sick to their kids. This comforted those around them that they’re not as sick as they seem. 

So where am I?

Vanity: My favorite feature, but, really, you also have to think the other side...Will I look good bald? Some people look good bald. Some don’t. Is my head weirdly shaped underneath the hair? In the end, I found that this isn’t as big of a deal to me as it’s a little more curiosity than “worry”.

Comfort: Not really an issue for me since I don’t have kids and it’s really Chris who will see me regularly. He’ll be so involved in caregiving for me that it’s really not even a problem because I know he’ll already be overboard on making sure I’m okay whether I look terrible or not. :) 

Normalcy: THIS is my spot. I can work from home and be fine being bald. I could see people who know I’m going through chemo and be fine with it, but STRANGERS or employees who don’t know who see me bald? Nope. It’s not normal, which then people will probably look and try to guess why and then it might be questions or looks. This is what I have the biggest issues with. It’s not that I truly care what they think of me (that would be more vanity, right?), but it feels like letting strangers see a super personal part of my life out in the open. That’s what I don’t like. Now will people really care? Probably not. Will they even really think about me in 30 seconds? Probably not. I still don’t like it. 

Now it’s weighing how much “normalcy” vs cost means to me. Turns out, looking at $1200-$2000 to have a chance to save my hair is not worth it to me. That money can go to medical expenses or a future trip. I’m already not liking how much I’m spending on my medical bills and those are to save my life! Can’t justify the cost for my hair that will grow back...eventually...Ugh. (I wonder if I’ll get chemo curls? Oftentimes your first set of hair grows in super curly. Let’s hope I haven’t grayed, though haha)

Yes, I can do wigs. I’ve heard varying things about wigs from other breast cancer survivors. Yes, I can wear hats. But that’s not the same thing! It requires effort that, as many of you might know, I am lazy. Haha There’s a reason I get my hair cut 2-3 times a year and don’t wear make-up. A wig seems like effort...Course, I try to think of it as also “fun.” Hey, I’ve always wanted to try “this style.” I also might get to a point where I just don’t care, but I also live in a relatively cool place so I suspect hats will be a must to keep my head warm (bald men, I will be able to commiserate with you!). 

Despite my decision to go bald (I keep trying to tell as many people so I can come to terms with going bald), it’s kind of funny that it feels like one of the “hardest” decisions I’ve had to make. The least consequential decision to my life moving forward was the hardest. Go figure. 

Random Ruminations

Ruminations, random thoughts, little things that have popped up in my head this week...

• I now get lots of mail, but it’s all medical related. Lame.
• Patient intake paperwork is mailed now because of Covid. I spent 1 hour filling out paperwork for 2 locations. How/why did we do this in person before?
• All the forms say list “referring doctor.” Uh, which doctor? I literally saw 3 at the mammography center and there’s my PCP. Then there’s “who can we receive/share info?” All of them? Aren’t they going to loop you in anyway??
• I’ve never watched my medical claims more closely than I do now and rooting to hit my deductible (already met after the mammograms and biopsies)
• I’ve never had such a close encounter of health vs money. How do people pay for this with bad insurance? I’ve hit my deductible and am 73% through my coinsurance and my MRI isn’t even processed yet. 
• I’m really glad this happened early in the year and not late to maximize my deductible and coinsurance time.
• I was going to save my stimulus check for travel to England next year, but guess the Gov will help me pay a medical bill (yes, “a” bill...blah). 
• Spending money you saved not on fun things is lame...
• I’m trying not to worry that I won’t be able to travel next June to England. I feel like the trip is cursed...
• Actually, I’m worried I won’t be able to go to the Breeders’ Cup in Nov! Is live horse racing able to be part of my treatment plan?
• I might qualify for the Covid vaccine now (or sooner) because of my treatment.
• When do I get the vaccine, though?
• I giggled reading the breast reconstruction brochure about the different options. One option for filling can take abdomen fat/muscle. A benefit is you get a flatter stomach. In terms of shape, there’s a teardrop one (more natural), but has the possibility of rotating and then looking weird. Haha
• Is my housemate going to have to treat the house like Covid cleaning regimen again if I go through chemo? I feel like this past year has been the worst time to have a housemate in a 2 bedroom apt...
• Am I going to be able to use my new rower much this year? (Not that an elliptical would have been much better)
• When people ask me how I’m doing or what’s been happening recently, I realize how much it’s an automatic thing to ask. They might genuinely want to know, but 9/10 I am not going to dump what’s REALLY happening on to those people. People want happy, not sad. 
• My car battery died a solid death. It was 4 years old so it’s possible it would have died in the next year anyway, but barely driving it in a year definitely accelerated its death. Chris picked a battery that can take not driving it a lot because it’s possible I’m not driving my car more this year than I did last year. 
• Chris got the most amazing jump start battery! We tried to jump my car with another car with cables (Chris says they weren’t the cheapest ones) and no go (not enough to turn it over). He gets this battery and..30 seconds and BAM. Starts on first try every time. It’s pretty small too. It’s amazing! 5/5 highly recommend
• I’ve been eating like I don’t care. At some point I’ll have to go back to eating healthier either because I have to or because I should, but it’s a little bit of “YOLO” right now.
• How many cookies from My Cookie Dealer is it “acceptable” to have frozen before it’s a problem? Haha I don’t have any frozen now, but every restock I want to buy cookies...It’s bad. 
• I’m looking at my nail polish rack and wondering if I’ll be able to continue to paint my nails if I go through chemo/radiation (from an energy level). I guess a plus in this is it’s on my left side so I might save my right, dominate, arm/hand in the long run for painting. 
• Guess it’s a good thing I signed up for extra life insurance through work last year. I wouldn’t qualify for it now. 
• Drug commercial is all “do not take if you’ve had cancer.” Oh, well, guess that means me now. Weird. 
• Thing to look forward to regardless of what happens: BreyerFest! I signed up in January, but it’s in July. I might have to evaluate how many horses I actually get this time because, well, money needs have changed, but it’ll be something to look forward to and it’s all virtual. 
• I can’t wait till my consults next week are completed. I’ll have a better idea of where and what 2021 is going and will look like. Better idea of what to research and look into. 
• Monterey County is moving to red for Covid phase. We’ve been in purple or at the strictest level since the beginning. I feel like the world is opening up and I won’t get to enjoy it for long! Also, what does red even look like? Haha It’s like I’ve forgotten what indoor dining is...

When Doctor Shows Start to Look a Little Personal

I spoke with my nurse navigator on Monday and received the last of my pathology information (I also got the final report today to read).

I have invasive ductal carcinoma, grade 3.

80% of breast cancer diagnoses are invasive ductal carcinoma. Basically means my cancer started in the milk ducts and traveled to the tissue outside of the milk duct. 

Grade 3 is the score associated with what the cells look like and how much they look like normal cells. 

• Grade 1: The cells are slower-growing, and look more like normal breast tissue.
• Grade 2: The cells are growing at a speed of and look like cells somewhere between grades 1 and 3.
• Grade 3: The cancer cells look very different from normal cells and will probably grow and spread faster.

I am HER2 positive, but estrogen/progesterone negative for receptors. 

HER2 is a growth protein on the outside of all breast cells. My body is producing too much HER2 and the cancer is spreading through it. This differs from estrogen/progesterone positive cancers as those are growing because of those hormones. You can be ER+ or PR+ and HER2+ (you can also be triple negative aka none of the receptors are present). In my case, I only have HER2. About 20% of breast cancer is because of HER2 (hormone basically makes up the rest and triple negative is less common than HER2). HER2 breast cancer is known for growing and spreading faster than ER/PR+, though. I’m hoping this means I can avoid hormone therapies, but not sure at this point. 

My KI-67 Score is 30%.

The KI-67 score has some disagreement on how to use it for treatment, but it is a protein in cells that increases as the cells get ready to divide. The test looks at how many cancer cells have KI-67 in it. The more there are, the more they’re dividing and making more cells. Can be coupled with an S-Phase test (cell cycle time) but I didn’t seem to get that. 

        < 10% - Low

        10-20% - Borderline

        >20% - High

High basically means it can be aggressive and spread quickly, which, frankly, considering the HER2 also indicates that, I guess I’m not that surprised. 

I’m not liking my chances on avoiding chemotherapy. Given my age, HER2+, and KI-67 of 30%, I have a feeling the treatment choice will be to attack hard and fast. Guess the MRI will help in determining how much chemo/radiation rounds I go through (in addition to what kind of surgery). 

With that, I had my first ever MRI today. Chris drove me. I was going to, but I had to stop at the Cancer Resource Center to pick-up my “intro” binder and meet the Nurse Navigator. It was kind of a crazy one-way road, can’t turn left here, small parking lot, yaddy, yaddy, and had to go to the MRI afterwards. I didn’t want to drive. I still don’t like driving, especially in places I don’t know and I have to park. Haha At any rate, Chris picked up on that and decided to drive me and wait for me at the MRI. <3

Anyhow, I was kind of laughing at myself because everyone would ask if I’ve had a MRI before and would explain it was a loud machine and what it was like. I wanted to be like, “I like medical dramas...I’ve seen them a lot on TV.” (I refrained!) Then I had to lay on my stomach for the MRI so I couldn’t see anything (I was tempted to fall asleep haha), but I flat out imagined the 2 ladies in a medical drama. It was kind of amusing to me. I came home and started to watch a medical drama and kind of chuckled to myself. I guess doctor shows are looking a little personal these days!

The technicians told me that my doctor put a rush on the MRI so I should have results in a day. I was initially told by the nurse navigator it’s usually 2-3 days so probably by Friday I’ll know if I’m going back in for more biopsies or not. I’m really hoping for no more biopsies and it’s not even really because of the spreading factor. My last biopsy spots are still sore and it’s been a week! One of them is because of where it is and it hits a seam on any bra I wear (sports or regular). So that’s unfortunate...

I had 2 blood draws last week and an IV today and my arm still has a bruise from one of the blood draws from a week ago. My other blood draw spot (other arm) took days to stop hurting (didn’t bruise). To say the least, I had a moment today where I was understanding why people get ports because the needles are insane to constantly get poked, even if needles don’t bother me! My downer moment today...

Assuming I don’t have more biopsies, my surgeon appointment is next Monday. 

I put a 3-D puzzle of the Burrow (Harry Potter) together the past 3 days. I’m trying to not worry too much about the future so trying to stay mentally busy and “in the moment.” The FB groups are both informative and freak me out. Since I still don’t have a treatment plan, the freaking out is a little premature because I have no idea how much (if anything) I’ll be going through. Guess I’ll get to that road once there’s a plan...

What a crazy turn this year has taken. What a crazy thing to now look at pink ribbons and have an entirely different meaning and connection to it. I got a pink ribbon in my binder today and it was kind of an “oh” moment that now I actually represent one of those. Crazy. 

BC Doesn’t Only Mean Breeders’ Cup Now

I was diagnosed with breast cancer at the age of 35 on Friday, March 5, 2021. This will be an important date for the rest of my life. 

But before we get there, let’s back-up a little. 

2020 didn’t go the way anyone could have predicted. I had started the year off looking forward to my upcoming trip to England with a friend to go to Royal Ascot, Bath, Newmarket, and do lots of things in London. The whole trip started because we were going to Royal Ascot. 

Royal Ascot is one of the “fanciest” horse racing events in the World and has a history that dates back to 1807. Ascot, the race track, dates back to the mid-1700’s. The “Royal” part of the name comes from the fact that the Royals attend the races (it’s on the “social calendar” for the year). The Queen is in attendance (comes in by Royal Procession) everyday of the meet and brings various guests. Each day of the 5-day meet has different races and different significance. We had decided to go on day 1 because it was considered the most “formal” of the days. It’s usually the day the “young” Royals end up attending with the Queen since it’s opening day. To say I was excited is an understatement. I got to see The Queen and be apart of one of the best race meets in the World. Bucket list item checked!

Unfortunately, Covid lockdowns started and that squashed that idea. I moved everything to 2021 in the hopes things would improve by then, but that would not happen either. A year later, I simply hope I can attend ANY horse racing in person! Breeders’ Cup (BC) in November at Del Mar, please, oh please, World, let it be so! But 2022 is the new date for Royal Ascot at least. 

Thankfully, I am in the position of being able to work from home. I’m endlessly thankful that I have a job that allows me to do that. Despite being able to work from home, work wasn’t always without stress given Covid cases would arise and I was part of the team that looked into the cases, passed out paperwork, kept up with the changing laws, etc, but I like my job, boss, and team and we got through it all!

The one shining spot for 2020 was Authentic, my Kentucky Derby winning horse. By now, it’s probably not a surprise that I am a horse racing fan. I have been since 2002 and War Emblem who tried to win the Triple Crown. My interest in it goes up and down in cycles, but I got into micro-share ownership in the summer of 2019. Who would have thought I’d have the ride of a lifetime with Authentic in 2020 - a year I couldn’t travel! As frustrating as it was to not be able to watch Authentic in person, I’ll be forever grateful for the opportunity to own a few hairs of his tail during the ride from Haskell Invitational win to Kentucky Derby win to crazy loss by a head in the Preakness by an eye popping performance by a filly to the magnificent win in the Breeders’ Cup (BC) Classic. Authentic had made 2020 much, much better for me.

By the time the BC comes around in early November, it’s the end of the year practically. It’s a few weeks away from Thanksgiving and a few weeks away from my birthday, Christmas, and the New Year. What can go wrong in the last 7 weeks of the year? 

Apparently a lot. I should know this by now. 

By mid-December, I got the unfortunate news that my housemate had Covid-19. I live in a 2 bedroom apartment and, honestly, don’t interact with my housemate that much. Chris interacts with him more than I do because they game together. In all the years he’s lived with us, I have NEVER been sick because of him. No germ sharing, thank you very much. Unfortunately, C19 was not as nice and I got sick (Chris avoided symptoms altogether - phew!). I think my body fought it for a good week before it gave in, but in the early days of being “not symptomatic, but not 100%” I felt a lump in my left breast. I actually noticed it because it hurt. It felt small and felt like it was in the area of my lymph nodes. Given the fact I was 70% sure I had Covid already by then, I figured it was my body doing its thing and that’s why it hurt. About a week after, I became symptomatic and spent 10 days not enjoying life AT ALL. I got to enjoy the holidays with C19 (12/23-1/2). 

The funny thing about this time frame is I seem to get sick around this time. I had the epic nosebleed of the year over New Year’s. I had pneumonia over New Year’s. If I get a cold, it usually happens in early January. I get C19 over New Year’s. See? Trend for me. 

I got over C19 in a pretty typical fashion (4 weeks from start to finish before I felt “normal” again). Around this time is when I realized the lump felt “big.” It’s hard to truly say if it grew that much when I had C19 because depending on how I lay, the size feels different, but I think it did to some extent. I luckily already had a doctor’s appointment scheduled in February for bloodwork and annual check-up, but I was still 100% convinced it was an enlarged lymph node. I just had C19 for goodness sake!

When I had my doctor’s appointment, my bloodwork was okay, but she wanted to send me to a mammography right away for the lump. The growth rate and the C19 could be favorable factors, but no way to tell till I got it scanned. 

The mammography I was sent to was really nice. The most awkward part of the whole situation is I was clearly the youngest patient by at least 10 years if not more. The mammograms and ultrasounds were my first visit and those were easy enough. I did have to go three times to get more mammogram images. That was always fun. As soon as the ultrasound was completed, I saw the radiologist and he immediately said he wanted to do biopsies of three locations: lump, axillary (arm pit) lymph node, and micro calcification cluster. The lump wasn’t a surprise, the other 2 were surprises. I was going to have the lump and lymph node ultrasound needle core biopsied and the micro calcification cluster was going to be stereotactic needle core biopsied.  I also asked if 1) the lump was a lymph node (was told definitely not) and 2) if the lymph node in my armpit as due to Covid (was told very skeptically “it could”). The micro calcification cluster I didn’t even understand in terms of something that was an indicator of breast cancer. 

I was scheduled for an appointment the following week on a Friday, but, by the time I got home, my appointment was moved up to Tuesday. No idea if it was a cancellation or the importance of my biopsy was a factor. 

You hear this a lot: Don’t Google your symptoms. 

I didn’t have symptoms, per se, to Google, but I had the radiologist notes. I found out my lump was 2.8 cm x 1.5 cm x 1.5 cm. My lymph node cortical thickness was 9 mm and I had a 4 mm micro calcification cluster. The unfortunate thing I got to read was my BI-RADS (Breast Imaging, Reporting & Data System) score was a 5. 

BI-RADS Assessment Categories:

• 0: Incomplete
• 1: Negative
• 2: Benign
• 3: Probably benign
• 4: Suspicious
• 5: Highly suggestive of malignancy
• 6: Known biopsy – proven malignancy

I learned a spherical lump and “squish” were good indicators of a cyst. Mine was oblong and deemed “firm to touch” by the radiologist. Micro calcifications are normal in breast tissue, but the “cluster” is what was the bad thing in my case. Of course, lymph nodes being swollen isn’t good either and is the first spot breast cancer will travel to if it leaves breast tissue. I had a fun trifecta going. 

The biopsies went as well as you’d expect. The stereotactic one is a crazy table I lay on, breast hangs down, I get raised up, and then a VERY precise machine is used to find and guide the needle for the biopsy as the doctor works below me. Apparently the doctor was on a roll because he got it on the first go. The technician made a comment that was good so I didn’t have more holes. That’s nice. Haha It was also the one that everyone thought would take the longest. It was really quick. The ultrasound biopsies I got to watch because of the way I was angled while the doctor took the samples. It’s definitely cringe worthy as you can see AND hear the clamp grabbing tissue and then the “rattle” noise as he’s trying to get the tissue sample off the probe into the jar. There were 3 samples for the lump and the lymph node each. Yup. Cringes. It was interesting to watch, though. The doctor, at the time, said it looked like it could be a fibrous cyst, but he was also looking at the perfectly round end. 

I got home sore and have been sore since. The lack of being able to do anything strenuous for a few days meant I couldn’t use my rower (I was on month streak...blah). The lump incision spot happens to sit right on the seam of any bra so it’s taken the longest to heal. The others are doing well and the soreness goes away each day. 

I think the hardest part about the biopsies was the wait. The doctor told me it would be 3-5 days before they had results. This meant Friday, March 5 would be the earliest I’d know. I definitely didn’t want to go the weekend not knowing, but it was a definite possibility. I basically spent 2 days window shopping online. I had puzzles to do, art projects, TV to watch, books to read, but nothing interested me. I was both tired (hadn’t slept well the days before the biopsy) and lacked the motivation to do anything. Window shopping helped a lot. I didn’t buy anything (yay me!), but it was nice to make and strategize shopping carts for things I wanted. 

I got the call in the morning on Friday that my results were in and they wanted me to come in for my results. Before the biopsies, I was told that I would be called in for my results whether negative or positive so I was already prepared to go anyway. Chris was not thrilled by this fact thinking it was better to give someone news at home, especially if they were alone and perhaps had to drive home. At any rate, off to the clinic we went together. 

Chris sat in the car (we weren’t sure if he could come in given Covid). I sat and waited and when finally was taken in, they asked if I had anyone with me and if I wanted to go get him. That immediately made me suspicious, but I told them he was in the car and fine. 

Doctor came in and immediately told me the lump and the lymph node were cancerous. The micro calcification cluster results were not in, yet. The receptor tests were also not done. However, they explained they didn’t want to wait on those tests because it didn’t change my diagnosis. It only changed my treatment. They wanted to get me going ASAP. 

The nice thing about the process is they had already talked to my primary care physician (PCP) and had scheduled most of my appointments. I have a lot of consultations because I may or may not need everything, but they’re scheduled so I can know what I may want/need. 

I was also offered to do a genetics test to see if I had any of the genetic markers for cancer. Given I’m adopted, I don’t know medical history so I was 100% for this anyway. Also, “given my age,” this would further inform on my future cancer management and could possibly affect my treatment. Given how “young” I am with my diagnosis, it’s highly likely I have a genetic marker for cancer. That test result comes back in about 2 weeks. 

My first step in all this process is to go in for a MRI. This will be kind of the “make it or break it” point on what my surgery will look like (other than perhaps what the genetic markers show). If the cancer is only in the lump and lymph node, I could possibly just have a lumpectomy. If the cancer has travelled to the right breast (nothing abnormal was found during the mammogram so fingers crossed), I’m likely looking at a mastectomy of some kind. They’ll also look at my lymph nodes in both arm pits. If anything else is found on my MRI, it’ll be biopsies for everything. The MRI marks good and bad cells so they can’t tell without a biopsy. I’m so overjoyed by this thought...Really hoping nothing comes up! Depending on my need for more biopsies, this could push back my meeting with the surgeon. After the surgeon, I meet with radiation oncology, oncologist, and plastic surgeon. Fun times. When I meet with the surgeon, I very likely will be scheduling my surgery during that meeting. 

After having had some time to process everything, I did a little statistic research on breast cancer for people under 40. The one thing I noted in talking with the doctor about my diagnosis were the phrases “given your age” or “how young you are.” Never in my life have I not enjoyed my age being mentioned so much. 

For those that don’t know (and even I wasn’t quite sure), 40 is when women are given the opportunity to do a mammogram. 45 is when it’s more-or-less “required” as part of of your preventative care. About 13% of women will be diagnosed with breast cancer. The median age for being diagnosed is 62. SIXTY-TWO. I’m almost half the age of the median age for being diagnosed. Statistically, of all breast cancer diagnoses, about 4-6% are for women under the age of 40. What a fun statistical minority group to be in. Ethnicity wise, Asians are about in the middle, but not that far behind the top 2 of White and African-American. 

Probably the scariest thing I learned is that breast cancer in younger vs older women has been found to not be genetically the same. Scientists don’t know why they are different, but having breast cancer at an older age is much more treatable and survivability is much higher. The rates of successful treatment have also increased over the years for women who are older. For people under 40, mortality rates are higher compared to those over 40. After I read that, I decided my reading was finished. I don’t know enough right now about my type of cancer to be able to understand more so better to stop now.

So where does that leave me? Why the blog? 

I decided to join a few FB breast cancer groups, especially one for younger diagnosis. I was reading some posts and suddenly felt overwhelmed about all the possibilities my future is going to look like. Given my age (there’s that phrase!), I am very likely going to be “cancer worrying” for the rest of my life. Not to mention the possible removal of other organs to prevent further cancer chances. There’s a possibility I might have to do chemo and lose all my hair, which made me realize I might have SHORT HAIR for Royal Ascot next year. I might be on hormone suppressor meds the rest of my life or other meds that mess with my hormones and can have implications as I age. I’m also low-key worrying about the finances. I have insurance and thankful I have been paying for the insurance with the lower deductible, but who knows what else I may have to pay and I have money saved, but it’s supposed to be for FUN things. Blah. Guess we all know where my stimulus check is going...But then I also think I’m semi-thankful this is happening now during the “end” of Covid because I can’t go anywhere or do anything anyway. Chris and I both haven’t been financially hit during Covid so we have the means, but will just have to watch the pennies and I’ll look into any programs. Plus, I can work from home as much as I need to anyway (as the last year has proven I can do). I also have tons of sick and vacation time. 

But what really got me is the overwhelming amount of feelings and information rattling around in my head. Sure, I talk to Chris and Chris is doing an amazing job of checking in on me to make sure I’m doing okay and taking care of me, but pen to paper (or blog) has always helped me. In addition, I was sitting and found myself window shopping again with the TV on. My rabbits were running around me. My cat was somewhere. Chris was playing a video game with our housemate. I was feeling bummed because my horse, Tizamagician, came in 5th of 7 in a grade 1 race that was a disappointing effort, AND the stupid post office (once again) delivered my package I had been looking forward to for a week to the wrong apartment. No idea where the package is. It all became a lot and it was then I realized I wanted to blog. 

The blog will be about my journey (probably very drily haha), but mostly a spot to stick the information I’ve learned in one spot so I can simply get it out of my head. I also figure it’ll be a good spot to keep family and friends informed of more detail than just a quick text or update. As most people know, I don’t do well in sharing my deeper emotions and feelings. So, this’ll be the compromise. 

As of now, I’m not posting about my diagnosis via social media. I will one day, but not now. I don’t mind if anyone tells anyone by word of mouth, though. I may not share my deeper emotions/feelings, but I’ve also never been shy about sharing about myself so I don’t mind. I do ask that you are careful, if you do share with others, about this blog. I’m not exactly sure who you would share this with, but, for now, I’d like it to stay close family/friends. Of course, I trust the reader’s judgement on that. 

With that, as I learn all sorts of new acronyms on this journey, I realized as I was starting this blog that the word “cancer” for me is scary (it is for everyone), but the phrase “breast cancer” is far, far less scary. I then abbreviated it as “BC” in may head and immediately went, “Huh. Guess this means “BC” doesn’t only mean “Breeders’ Cup” now.”