Demand the Scan

Pathology results were a huge downer, but there was still so much to be thankful for. I was healing with no surgical complications, and I was going for walks outside almost every day. My drains were all removed at the 2 week mark after surgery, and I felt like a new person! Sister was still in town with my 2 nieces and Kanon was in his glory with his cousins. My mom's knee replacement went well, too. We were all on the mend and Ryan was able to go back to work after a few weeks of Daddy Daycare. I mean, someone had to be around to do all the heavy lifting & baby chasing...Kanon was 90th percentile for height and weight and had mastered running before turning one. There is no doubt that there is so much to live for...our little guy was my endless motivation.

We were closer to having the big picture and figuring out what treatments would be suggested. We knew radiation was one of them with the discovery of the lymph node involvement, and as I mentioned before I have an extreme aversion to radiation. I chose a double mastectomy to surpass the need for it, and truth is ... I hadn't even researched it in depth because I was so convinced I wouldn't need it. But, either way, I set-up an appointment in Pittsburgh with radiation oncology on August 1st. In the meantime, my HER2 came back that it was indeed HER2-negative, so that was relieving. My Pittsburgh Oncologist was finally able to proceed with the Oncotype test. While waiting for that, I returned to Pittsburgh each week so my plastic surgeon could continue saline fills in my tissue expanders. I had no real goal with size...I honestly figured I would just know when it felt right.

We were weeks out from surgery, finally getting test results back, and still waiting on more...all while knowing that cancer had made its way to at least two of my lymph nodes. Was there more?? Was it anywhere else in my body?? The biggest question I had at this point was WHY ARE THERE NO CT OR PET/CT SCANS ORDERED!? Ultrasound and MRI both failed to some degree. I knew PET/CT scans were frequently used for cancer patients. Why wasn't this suggested for me? Trust me when I say I asked each one of my providers about a CT Scan.

Here are the various answers I received: "The scans can lead to false positives". "The radiation will target any remaining cancer cells in the axilla, so the scans aren't necessary". "PET/CT isn't used on early stage breast cancer". "Ultrasound and MRI didn't pick it up on the metastasis because it was so tiny, so a PET/CT wouldn't be a helpful guide either". I truly tried to accept the answers, yet something kept pulling me back...

Jumping ahead here for a second...For those who plan on staying around for awhile and following the craziness of what is cancer and how my brain buffered its way through all of this...I am fueled by the something much greater than myself. There are some aspects of my people-pleasing life where I may cave to popular vote or hop on the bandwagon, but when it comes to things that REALLY matter, I frequently find myself guided to the alternate route. It might not always be the right one, but it's always worth the discovery that I wouldn't have otherwise known. I believe that nothing is by accident; God is always working in the background. Ultimately, I trusted my instincts and I wanted to be able to trust my body again. I believed that this scan would provide both insight (even if it was bad news) and peace of mind. So, I kept pursing it...

I had my appointment with radiation oncology at 5 weeks post-op, and they presented me with the option of a clinical trial called the TAILOR-RT Trial. TAILOR-RT studies breast cancer patients, randomizing them to treatment with and without regionalized radiation. Patients need to agree that they'll be followed for many years. The criteria required are: I must be low risk, have node positivity, an Oncotype below 18, and able to begin within 8 weeks of having surgery.

As a premenopausal breast cancer patient, an Oncotype of <16 was ideal to forgo chemotherapy; >18 would put me in the high risk category, and chemo would then be suggested to systemically lower the recurrence risk. Chemo did not intimidate me nearly as much as radiation, but I would no longer be able to partake in the TAILOR-RT trial if I had to do chemo first. I decided I would take my chances with this trial (obviously, hoping to be a "without radiation" participant). I would be watched closely and be a part of something that could potentially make a change in treatment protocols. Underlying thoughts: it was unsettling that I needed to agree to a clinical trial to be watched closely while possibly NOT doing radiation. If that's not a means of intimidation...! Anyhow, I signed the trial agreement that day anticipating a lower Oncotype score.

I met with my medical oncologist on August 16th to discuss my Oncotype results, but like everything else, it did not come back favorable; it was 20. I was officially a breast cancer patient who "needed it all". Radiation would now be on hold until after Chemo. I went from being a fit & healthy 37 year old new mother to being the epitome of a cancer patient in less than 4 months. I now had none of my own breast tissue, permanent scars, permanent nerve damage, and I was about to face treatment challenges that would present even more changes. It's an unbelievable mental load to process. If you've been faced with something similar, don't worry--I never made it through a single doctor appointment without both laughing and crying. When people refer to this journey as a roller coaster ride, they mean the old, rickety, wooden coaster that leaves you with some motion sickness at the end of the ride...keep the tissues close!

My oncologist and I also talked about chemotherapy and fertility preservation options. We had discussed fertility previously, but it was crunch time to preserve eggs if we wanted to. Ryan had more of a moment with this than me. Our ability to give Kanon a biological sibling would be taken from us with chemo and the meds. We had no intentions of having more kids, but still...having that option taken away was unfair. The constant need to make some sort of decision was very exhausting, even in the moments where I didn't have to think on it long...it still took up space in my brain. I didn't want to put myself through any extra procedures, so we stuck with our initial choice not to preserve eggs.

Regarding chemo, I was presented with another clinical study called the OFSET Trial. Treatments don't end after chemo and/or radiation for HR+ breast cancer patients; there are different med combos suggested for many years following surgery that are supposed to eliminate the chance of recurrence. The OFSET study was created to help determine if the chance of breast cancer returning is the same or less when chemotherapy is used in addition to the meds (hormonal therapy with an aromatase inhibitor and ovarian function suppression). There are 2 randomized groups in this trial: one that takes chemo and the meds, and one that only takes the meds. Obviously, my other high risk factors come into play for recurrence too, but I was still all ears concerning this trial. My participation in the OFSET study wasn't encouraged, but it was optional. At least I'm consistent in always considering alternatives!

My Oncologist suggested a chemo plan referred to as "AC"-Adriamycin+Cytoxan (also known as the "red devil"), given every 3 weeks for 6 cycles. Did you do that math as quickly as I did?? And I'm BAD at math! That's about 5 months of chemo....18 weeks. Deflates as she thinks through the timeline of winter & the holidays.

After so much discouragement, I promised myself that I would stop with all expectations. I don't know if it's a good or bad trait to have...perhaps it's more of a control thing for me...but when it came to cancer, I had to stop expecting things to go a certain way. This isn't to be confused with my attitude or my a** kicking mentality, but I couldn't continue to predict my outcomes, timelines, and plans before I had all the information. It was simply too emotionally painful to keep taking these blows. It was like sitting down but missing your chair ... except way crappier.

Each day felt heavy. Every new test result and conversation added a layer of weariness that is almost indescribable. My mind was tired, and I had to dig deep for the willpower to keep showing up. Life doesn't stop when cancer comes into the picture...in fact, it gets a more hectic! We were in a time where Kanon was BUSY and achieving so many milestones. Since Ryan had also gone back to work, I had been carefully planning how to load/unload our 27lb 1 year old in his car seat in case I had to transport him. Luckily, I had healed well and felt confident enough to lift more than 5lbs premature of the "6-week" rule. I had been back to work full time and started going back to the gym as much as I could. I knew that physical independence, daily purpose, and a getting back to a more normal routine would be good for me. I had to set these goals in order to stay out of the funk. I'm not bothered or annoyed by the typical comments received during this process..."you're so strong", "I don't know how you do it all"...honestly, none of us KNOW how we do it. WE JUST DO! Having faith simply makes it that much easier to keep pushing.

I started seeking more chemo advice from other experienced sisters in pink. I was encouraged to get 2nd and 3rd opinions regarding the chemo, and I started listening to podcasts more directly related to radiation and chemo. My focus and research had been so heavily geared towards surgical options earlier on. It was time to really dig into what all these other conventional treatments might look like. I scheduled an appointment with the Cleveland Clinic for a second opinion on August 29th. I believe the suggested timeframe to start chemo after surgery is 8-10 weeks. We were there...talk about stress! Stupid cancer.

I can't express enough how important it is to find a support group. There are so many things to learn from other people who have gone through this. In the moments where I felt like it was all too much, my Linked By Pink group and others outside of it were reassuring and kind. There were also so many suggestions shared that I never would have thought of myself. One of them was to look into eyebrow microblading prior to starting chemo. I commonly heard others say they believed that they looked sicker just because of the hair loss. While I had planned on just painting on eyebrows everyday in the mirror, I jumped on the excuse to finally pursue microblading. This was certainly a confidence booster for me. Side note: there are foundations out there that will financially support things like this for cancer patients! These foundations were suggested to me a little later by the members of the support group. The financial help is time sensitive, so here's your sign to get involved and submit applications before procedures so you don't miss the opportunity for the grants. I intend on sharing the list I was given to my resource page in the near future.

I continued on to the Cleveland Clinic for my second opinion where the oncologist agreed with Pittsburgh's plan. The Cleveland Clinic doctor did encourage that I get into the OFSET trial, but she also encouraged me to stay with Pittsburgh or closer to home for the actual treatment. I left feeling good after the appointment even though I secretly hoped she had a magic pill that would instantly do the trick...it was the Cleveland Clinic, after all! No such luck...chemo was on the menu.

I knew all along that after I received these opinions from outside of my hometown, I would need to stay closer to home for the treatment. There was no way with my husband's work schedule, working full-time myself, a child, and 2 dogs that I could keep going to Pittsburgh during chemo. After my appointment in Cleveland, I felt prepared to make the appointment with a local oncologist to talk about getting started. This was set up for September 6th. The Cleveland Oncologist also had no reservations against the CT scan (finally, a doc who agreed with me), which was enough for me to finally stop asking "why not", and instead start making demands. I circled back to my Pittsburgh Oncologist and did just that. The scan was finally ordered and I anxiously counted down the hours to 9/5/24 at 10am when I'd finally receive a CT Scan with contrast of my Pelvis, Abdomen, and Chest. This would be my last effort of understanding my body from the inside out prior to going head to head with chemotherapy. I was so ready. We were 10 weeks out from surgery and I was so sick of living in limbo. Scan day came and I was able to see the results before meeting with Oncologist #3...I didn't know it yet, but September 6th would include a conversation I was not prepared for.