Breast Cancer Awareness Redefined

 "Does anybody blog anymore?" That is the question Tamara asked me when I suggested that we use our old, neglected blog to provide updates. I responded that I don't think we'll regret having a platform to use as an update hub as we move through this journey. Short story shorter - here we are. And here is where you can find most of what we know.

In the spirit of not burying the lede, I'll just come out and say it - Tamara was diagnosed with Grade 3 invasive ductal carcinoma on September 9th. That's big, scary, heavy news that we're currently processing, but here's the rest of the story as we know it.

Around the first week of September of this year (2024), Tamara noticed a lump in her left breast. At the time, we had hoped it was a hormonal thing that would go away as the menstrual cycle did it's thing. Well, it didn't go away. And on September 25, she went in for a mammogram. It showed a solid mass, about 6 centimeters in diameter. It also showed that there were possibly some masses in the lymph nodes.

Flashback to a few years ago: Tamara underwent a genetic test, and she tested positive for the BRCA 1 gene. This means that she has the gene correlated with aggressive breast cancer, as well as cancers that originate in various other parts of the body (pancreatic, ovarian, etc.).

Fast-forward to about September 30: You can imagine that we were already nervous about this lump we had found. Pairing that existing anxiety with the fact that we'd been able to see visual growth, even in just the 5 days since the mammogram, raised our anxiety off the charts.

After the mammogram, they scheduled us for a biopsy to be done on October 9 - two weeks after the mammogram. Initially, we were disappointed that the biopsy would be so far in the future, but we had a family trip to California planned for October 2 - 5. So, maybe having the biopsy scheduled for the 9th would allow us to have one last hurrah before our world was turned upside down.

Then again ... Nope. Not waiting that long. Tamara called her OBGYN to explain more about her history with breast cancer ...

• Tamara's Grandma died of breast cancer
• Tamara's mother has had bouts with cancer, including breast cancer
  
• As mentioned before, Tamara tested positive for BRCA 1

With this information in mind, the OBGYN's nurse pushed to have the biopsy moved up to October 3. (Thank you to Dr. Beck's nurse ... who incidentally is named Karen.) This same nurse gave us some referrals for oncologists/surgeons, and advised us to try and schedule a consult ASAP. When we reached out to the one surgeon that was covered by our insurance, they said they wouldn't schedule a consult without a biopsy. Unsatisfied with that outcome, we reached out to a family friend who has some pull in this particular hospital network. With this friend's help, and much to the chagrin of the surgeon's schedulers, we were able to get a consult on the books for October 10 (today).

With that, we felt VERY lucky to have been able to get things moving. However, we also had the family trip to consider. We felt that our kids (especially the kids) needed something fun in their fall break. After all, the news we were expecting to come home to was likely to throw them for the mother of all loops.

Grandpa Ray (Dad) and Aunt Edythe (my sister-in-law) to the rescue! I took the kids to California on Wednesday, and then Edythe drove Tamara to her biopsy appointment Thursday morning. And man did she come prepared! She had a blanket (perhaps the softest, coziest blanked in history), a neck pillow, some perfectly-sized ice pack gel things, and other assorted goodies in a bag ready to hand off to Tamara. These made the trip to California much more comfy, and we can't thank her enough for all she's done. After the Biopsy, my dad picked her up and drove her to California to meet us. Despite being in some pain from the procedure, we had a lovely time and made some new, positive memories with the kids.

Fast-forward to Monday October 7: Tamara got a call from the surgeon's office to prep for the appointment that was scheduled for later in the week. They asked if we had received the results of the biopsy and we said we had not. They said that if we didn't have those results in hand before the October 10 appointment, they would have to cancel. So, we really needed them to be given by October 9. 

At about 3pm on the 9th, Tamara called the OBGYN for an update. They didn't answer, so she left a message. Within about 5 minutes they called back and shared that the results of the biopsy confirmed what we feared/expected. The large mass is breast cancer, but the lymph node they biopsied is normal. The report says that she has Grade 3 invasive ductal carcinoma.

The phone call was short, but definitely not sweet. That one stung. Thankfully, our family friend helped us avoid sitting with that stinging diagnosis for too long. The next day (today), we went to her appointment with the surgeon, Dr. Byrum. Here's what we were able to remember from that conversation:

•  Dr. Byrum put a slightly-confusing label on it: Stage 2 anatomically, Stage 3 prognostically. The difference between the two accounts for how aggressively they expect it to behave. The mass is bigger than a typical stage 4 mass, but hasn't moved outside of where it started. So, technically Stage 2 ... but we're going to fight it like it's Stage 3.
• Dr. Byrum said that the lymph node biopsy was somewhat inconclusive by her estimation, because it seemed like they tested fatty tissue, where they should have tested lymphoid tissue. She thought the test should have included more lymphoid tissue than what she saw. She's going to follow-up on that, but the take-away is that it's still possible that cancer cells have spread to the lymph nodes. And its possible that we'll need another biopsy.
• She said that this is triple-negative breast cancer, which means that it lacks or shows low levels of 3 specific hormone receptors. From our research, it seems like this type of cancer often responds well to chemo, but is more aggressive.
• We have an appointment for Tuesday, October 15 with a different oncologist (Dr. Dumlao) that will take point on the non-surgical treatment (chemo and radiation). Dr. Byrum expects Dr. Dumlao to get chemo and radiation going fairly quickly - within a week or two. We also expect her to recommend a central line to make it easier to get treatment.
• They want to do chemo and radiation before surgery for a few reasons.

1. If it does turn out that the lymph node biopsy was incorrect, and that the cancer has spread, the chemo will have first pass at killing whatever is out there.
2. To shrink the tumor.
3. To see how Tamara's body reacts. 

The doctor didn't say this, but I get the sense that at least a small part of the reason they want to go with this chemo treatment plan first is to gauge how effective it is, in case we need it down the line. Again, Tamara tested positive for the BRCA 1 gene mutation, which (as a reminder) has implications for cancer in various parts of the body (pancreatic, ovarian, etc.). If we just remove the tumor surgically, we lose the opportunity to see how it will react to chemo. 

• We'll have a firmer plan after we talk to the oncologist, but the surgeon indicated that we'll likely go with about 6 months of chemo and radiation, followed by a bilateral mastectomy and then a hysterectomy (with removal of the ovaries). None of that is good news.

With the appointment done, we felt like we had just attempted hydration via firehose. We were both exhausted and our heads were in a vortex. But, we still had kids that deserved to be prepared for what's coming. After the biopsy, because they noticed the pain their mom was in, we had brushed it all off as normal 35 year-old woman check-ups. We didn't feel like we knew enough info to saddle them with the burden of reality. So, we decided to wait to clue them in until after the first appointment with an oncologist.

We sat them down, and Tamara told them that everybody has a story that they're living. Part of what makes stories interesting is the challenges that every main character has to endure and overcome. She said that we needed to tell them about a new challenge that we're all going to have to overcome together, that will be a big part of their lives and stories, starting today.

With that lovely, inspired preface, she broke the news and, as you might imagine, they had a pretty intense cry session. Much was said about the lack of fairness, about how they don't want Mom to be in pain, and that this is really bad timing - having just lost their Grandma to cancer. 

Tamara assured them that this isn't going to be what gets her - that "Mom's cancer is very different from Grandma's cancer." This seemed to help a bit. Then, I told them, "if you feel like fighting, put your fighting pants on. If you feel like hugging, put your hugging sweater on. If you feel like thinking, put your thinking cap on." I told them that I felt like fighting and that I had some choice words in my head that I was directing at cancer.

They all seemed to perk up at our reassurances and decided they needed to make a few Smash Bros characters to represent what they thought of cancer. They wanted to literally fight cancer, and figured a video game allowed them to do just that. The names chosen for these video game characters were "Stupid Cancer", "Dumb Cancer", and ... "Fart Cancer" (sorry, Mom). They created these characters and made sure to only afford them the weakest/worst abilities. The rest of the afternoon, the kids engaged in some epic team battles, the outcomes of which were largely assured from the beginning. They had fun ganging up on these cancer characters, beating them into oblivion. Team Cancer has now been thoroughly vanquished, many times. Seems like it helped them feel like they had something to do. We also bought this 12-pack of wrist bands to give the kids a "team uniform" of sorts, to wear in solidarity.

SO ... we have a long road ahead, and its going to be rough. We're exhausted from just hearing about everything today. Please keep Tamara in your thoughts and prayers. I believe in the power of vibes, thoughts, and prayers (perhaps all words for the same thing). Please send all your thinking, hugging, and fighting thoughts with a special emphasis on the annihilation of cancer.

Read the next update