I've mentioned before that I tend to base important decisions on how much of a "no-brainer" they are to me. In other words, it needs to feel 100% right or I tend to hold off on making any moves. Back in 2017, when my breast surgeon laid out her treatment plan, it was very much a no-brainer. I was completely on board and ready to get started immediately. This time around, I was anything but. I felt absolutely no peace about it and, in fact, was opposed to it at a very visceral level. I couldn't quite explain why I was so viscerally opposed to it, though. Until I suddenly remembered that I had already seen this scenario play out 40 years earlier. It feels pithy to use the phrase "childhood trauma" but that's pretty much what it is.
In early 1985, my dad was diagnosed with laryngeal cancer. His doctor told him his best chance of survival was a total laryngectomy, which meant he would never talk or sing again. He'd been a singer and musician his entire life, so this diagnosis hit him harder than the average patient. In addition, he was self-employed at the time and had no health insurance. My mom worked part-time as an LPN while going to school at night for her RN. She had to drop out of school after my dad's diagnosis and ended up never going back. Money was very tight and the weight of uncertainty in our house was palpable. My older brother Toby was in his teens, but my brother Rob and I were 3 and 6, respectively. My parents tried to explain to us what was happening in a non-scary way that we could understand, and they did their best to shield us from their stress and worry, but we still felt it. We both knew something bad was going on, and it showed when Rob and I would start fighting with each other whenever we were taken to one of my dad's doctor appointments. My mom tells me that we once drove past his oncologist's office and I pointed to the building and exclaimed angrily, "I don't like that place!"
My dad's laryngectomy happened shortly before Easter weekend that year. The Sunday before his operation, he sang "Flee as a Bird" to our church congregation as his final vocal performance, accompanying himself on the piano. I remember being there for that but, at the tender age of 6, I did not understand what the occasion was or why no one clapped for him afterward. I just remember the whole sanctuary being dead silent. I know now that the lack of applause was because everyone was in tears, knowing they had just heard him sing his last song. Days later, Dad went into surgery and woke up a different person. He beat cancer, but he never stopped grieving the loss of his voice. His grief and frustration showed through plenty of times while I was growing up. It shrouded him. He carried it with him until the day he died. To this day, I have very few memories of his actual speaking voice and they're very faint, usually mixed in with the "burping" voice he later learned to use while breathing through the stoma in his throat.
Forty years later, I'm finding myself reliving those same events, but from my dad's perspective as a parent. He knew he would be having a surgery that would save his life but at a very steep price, and that it would have a profound effect on him and his whole family. After being told I would need a mastectomy, I struggled with how and what to tell Avery about what was happening to Mommy. When I asked Brian, he felt that we shouldn't tell her anything at all. But as the child of a former cancer patient, I knew there was no way to completely hide it from her. Kids are very intuitive and they pick up on so much more than we give them credit for, especially our little inquisitor. By the third appointment she accompanied us to, she was already asking, "Why does Mommy see so many doctors?" Brian just told her, "To keep her healthy!" But how was I supposed to explain to her that I couldn't pick her up or hold her for 6-8 weeks straight, or why I had giant stitches and surgical drains in two places? Even worse, there would be no shielding my grief over the loss of a significant part of my anatomy from her. It would be a dark cloud hanging over me for the rest of my life. I would never recover psychologically and Avery, not just I, would likely bear the brunt of that, too.
I often wondered if only my dad had gotten cancer even a year or two later if he may have had more treatment options that might have spared him from having that surgery. Just recently, I asked my mom that same question. Was radiation even a thing back in 1985? She doesn't remember all the details since it was so long ago and she was too upset to process it at the time (I can relate). But she did say he was given an option of a partial laryngectomy with cobalt radiation, or a total laryngectomy. However, he was told the more conservative treatment would give him a 60-65% chance of survival, whereas a total laryngectomy would bump that up to 85%. He chose the option with the highest chance of keeping him around. I think I probably would've done the opposite if I's been in his shoes. I would have exhausted every alternative before submitting to the most extreme option. Perhaps my dad later regretted his decision. Maybe part of the grief he felt was the aspect of "what if?" I wish I'd thought to ask him these questions while he was still here, but I never did.
Remembering all of this, I think my opposition to the mastectomy largely stemmed from the impact my dad's surgery had on him, and on our family. It affected him professionally as well as personally. He was discriminated against when it came to things like finding jobs. He was told his voice was "offensive" so anything with phone work was out. Other kids made fun of how he sounded--to me, to my face. But the worst part was the times I watched him break down in tears, longing to be able to sing again. He told me more than once that his dream would have been playing Jean Valjean in "Les Miserables" opposite me as Cosette. We could have been a real-life father/daughter duo had cancer not interfered.
Cancer had already taken too much away from my family. I just could not accept that same outcome for me and Avery. I was determined to save as much of my anatomy as possible so she would never have to grow up dealing with the same parental grief I did. Was I taking a risk by doing this? Hell yes! But I could live with the risk far more than I could live with the regret.
On Monday, June 2, I had a Zoom meeting with the radiation oncologist for the clinical trial in Cleveland. We talked for about 20 minutes. She explained what exactly the trial was studying, the criteria for qualifying, etc. Basically, they were looking for women with a history of invasive breast cancer who'd previously undergone a lumpectomy and whole breast radiation, then later experienced either a local recurrence or a new primary cancer in the ipsilateral breast. The affected area had to be smaller than 3 cm (mine was right around 2 cm according to my scans), and the lumpectomy cavity needed to be <30% of the total breast volume to minimize the possibility of complications, including toxicitiy and poor cosmetic outcome. I seemed to fall under all those categories. She did caution me, however, that most physicians aren't comfortable performing this treatment on women under the age of 50 since the younger you are, the more years you have left for the cancer to come back (something I've heard many times before). Most physicians, however, are fairly comfortable treating women over 50. I was 46, which put me right on the cusp. But the factors in my favor were the size of the area being treated, the fact that it was in a completely different place than last time, it was still in situ, it was located in the front rather than in the back near my chest wall, and it had been more than 5 years since my previous radiation. What it really came down to was whether I could find someone willing to do the lumpectomy on me, and what my final surgical pathology would be.
She offered to reach out to my surgeon to discuss my candidacy for the study, which I readily agreed to. I also told her I would be getting a second opinion on Wednesday, then meeting with my oncologist on Friday just to see his thoughts on this. She then asked how far away I am from VCU. I quickly checked Google maps and found I was only 1-2 hours away (depending on traffic, of course). She said she has contacts there who would very likely be willing to do a repeat lumpectomy, including one physician who is co-writing an initiative with her to codify the standards for repeat radiation after second lumpectomy. She also told me the surgeons at her hospital did them frequently and are "very motivated" to do breast-conserving surgeries whenever possible. So worst case scenario, I could have treatment either in Richmond or Cleveland, then do the trial. We left things at: "Let's circle back after you've had surgery!" Knowing this trial was officially an option was a HUGE weight off my shoulders. The only hurdle left was finding out whether I was really a candidate for repeat lumpectomy, and finding a surgeon who would agree to do it.
On the morning of Wednesday, June 4, Brian and Avery drove with me to my second surgical consultation. This one was in Leesburg, so a bit further away than right down the street, but not unreasonable at all. The hospital was beautiful! The one in Reston really pales in comparison. Also, much to Avery's delight, there was a Starbucks kiosk right outside the cancer center's suite! (No, my 4-year-old does not drink coffee yet, but she sure loves her cake pops!) Brian waited with Avery in the waiting room when I was called back. The nurse took my vitals, then led me to an exam room where I gave her some of my background and confirmed the information they had on all the medical records I'd already sent over. She then instructed me to put on a gown and the doctor would be in shortly.
To say this surgical consultation went better than the last one would be a huge understatement. This doctor, after speaking with me a little more about what we were dealing with, was more than willing to do a second breast-conserving surgery on me. She felt I was a great candidate for it since it's DCIS rather than invasive disease (assuming that doesn't change between now and my surgery date), in a completely different area than the original, and a relatively small size. I had to make absolutely sure I was hearing this right, so I asked her if she really was 100% willing to do a repeat lumpectomy. She answered, "Oh, yes! I do them all the time!" I was completely elated to hear this news, but also quite confused. My previous surgeon had told me it would be malpractice if she were to do another lumpectomy on me. I could understand if she just wasn't comfortable with the idea, but to go from "malpractice" to "I do this all the time!" made absolutely no sense. (This absolutely underscores the importance of seeking a second or third opinion!)
While we were talking, there was a light knock on the door. The doctor opened it slightly and saw the nurse standing there with both Brian and Avery in tow. I was surprised since I thought they were going to stay in the waiting room, but apparently the nurse thought it was important for them to be in the room with me for support. That was fine. I was able to introduce Brian to my new surgeon, stating their shared academic and geographic connection. They chatted about Michigan stuff for a minute, then we brought Brian up to speed on the new plan. (Avery had been given some crayons and pages to color by some ladies in the waiting room, which she happily busied herself with on the floor.) The surgeon asked if I had met with a plastic surgeon yet and I told her I had, giving her his name. She said, "Oh, I know him. I work with him all the time! Would you like to have him there for the surgery to assist with any cosmetics if needed?" I told her it couldn't hurt. So she said she would have her surgery scheduler coordinate with his, and I should be able to get it done within a few weeks. Talk about feeling overjoyed!
The doctor then stepped out for a minute to grab some information for me and confer with her staff about a few things. While she was gone, Brian asked me, "So are you excited?" I told him 'excited' wasn't quite the right word. How could I be excited about being cut open again? But knowing I would be able to save my breast from amputation one more time was a huge relief.
The visit was somewhat comical since they kept acting like I was a first timer, offering me all sorts of literature on life with breast cancer and survivorship (most of which I already had with me in my tote bag), and explaining everything in simplified terms. Something new I did learn, though, was that wire-guided lumpectomies are a bit outdated now. My second lumpectomy would be guided by a tiny magnetic metal seed called a Magseed, which would need to be inserted a few days prior to my surgery. This seed would basically act like a metal detector to guide them to where the tumor is located. Much easier and less cumbersome than the giant wire guitar strings I'd had during my first surgery. Amazing how quickly medical technology can evolve in just a few years!
At the end of my consultation, the doctor said she would refer me to a radiation oncologist at their facility, and that I should hear something soon regarding a surgery date. She also said the tumor board was meeting on Monday and she would present my case to them, just for confirmation that I was a candidate for repeat lumpectomy and partial breast reirradiation. Assuming they agreed with her assessment (which she felt strongly that they would), we were good to go. For the first time since my mammogram results, I was feeling more at peace. This was a surgical plan I was on board with! However, there was the other aspect of treatment I knew would be coming after that I was already dreading.
A funny thing about breast cancer reoccurrences is that the second cancer can often be a completely different type from the first. My original cancer had been moderate-grade and over 90% positive for both estrogen and progesterone receptors. This new one was high-grade, only 40% estrogen positive, and progesterone negative. But regardless of the change in percentage of estrogen receptors, the long-term treatment for estrogen sensitivity is the same. This new cancer meant I would most likely have to go back on Tamoxifen. Talk about the low blow that comes after the huge kick in the groin. Although I'd been reveling in no longer having to take that stuff, at age 46 I had now entered perimenopause so I was officially in the twilight years of my fertility. As my natural estrogen supply started to dwindle, a lot of the side effects I'd had on Tamoxifen were beginning to come back. Being permanently barred from ever taking hormone-replacement therapy, I'd actually started taking an herbal supplement back in January called Estroven to ease some of the symptoms, as recommended by my PCP at my annual wellness exam that month. It was a total game-changer! I felt 10 years younger on it! Since it was 100% herbal and hormone-free, I hadn't even thought to ask my oncologist whether it was OK for me to take. That oversight came with a startling blow at my appointment with him on Friday, June 6.
On the afternoon of my appointment, my oncologist gave me both good news and bad news. The good news was he not only agreed that it would be acceptable for me to do a second breast-conserving surgery with partial reirradiation, he also spoke very highly of my new breast surgeon, even calling her "excellent!" The bad news, though, was that he confirmed my fear that I would have to go back on estrogen suppression therapy. He was sympathetic to how miserable I'd been on Tamoxifen, but unwavering in his opinion that I had to take it. He even floated the idea of inducing menopause and putting me on something even stronger. The idea of making all those side effects permanent was just incomprehensible. Clearly any hope I had of enjoying my remaining pre-menopausal years was now gone. And since I would be on it for at least another 5 years, meaning I would be 51 before I could go off again, there would be virtually no chance of Avery ever having a younger, full-blooded sibling.
I hadn't particularly been trying to have another baby and wasn't staking my future happiness on it by any means, but I'd been enjoying not having to worry about it one way or another. After 40+ years of either actively avoiding pregnancy or deliberately trying for one, I was finally at a place where whatever happened happened. For the first time in my entire life, I was both off Tamoxifen and in a stable, long-term, committed relationship. It was wonderful not having to worry about pregnancy either way. But all of that was about to change. And for the rest of my pre-menopausal life.
As I was lamenting all of this news inside my head, I mentioned the fact that I'd been taking Estroven to my oncologist. He was unfamiliar with it, so he did a quick look-up on his phone, asking if I knew exactly what was in it. I told him it was just rhapontic rhubarb root, so it didn't contain any hormones. He said, "Yes, but do you know exactly what is in it?" Not having the package on me right then, I could not answer. He turned his attention to his phone momentarily as he researched it, then announced, "Yeah, I would stay away from it."
Dumfounded, I asked why. He explained that even though it doesn't contain any estrogen, that particular herb still acts like estrogen by binding to the receptors in the breast tissue, which makes it a potential recurrence risk. My stomach dropped hearing this. Not only was my one avenue of relief now no longer an option, but I'd been taking something unsafe for several months now! What if....? Could it be this is why I got cancer again? Did I do this to myself??
"Unlikely," my oncologist answered when I asked him that very question. Since I'd just started taking it in January, my cancer probably started growing before then. Still, I needed to stop taking it ASAP. Small comfort for me. That little herbal remedy had been so wonderful to me. I had more energy than I'd felt in a long time, my mood was more stable, I was losing weight, and it had even cured the chronic neck pain I'd had for over a year. But apparently it can also kill me. There is literally nothing I can take to improve the side effects of mother nature and father time. This was just the most unfair thing ever. My one consolation was that I had managed to avoid mastectomy, the only irreversible part of this whole mess. Hormone suppression sucks, but it's still reversible if I absolutely cannot bear it at some point (and I anticipated that point would come sooner than later).
I was still quite distraught as I drove home. The nagging thought that even if I hadn't caused but possibly contributed to my current state of affairs was distressing. Now I just had to pray that things didn't get any worse between now and my surgery date, whenever that ended up being. It was another week of waiting until I learned when that was.
The following Friday the 13th (ominous, again), I was outside doing my lunch hour walk when I got a text message informing me of a post-op appointment on July 18th. There was nothing in it about the actual surgery, though. Confused, I checked my patient portal to see if there was any additional information there. There I found that my surgery had been scheduled for Thursday, July 3rd. That was both good and bad. Good because I could take the long holiday weekend to recover and likely return to work on Monday, plus Brian's mom would be visiting then and on hand to help with Avery in the event my mom wasn't able to come down for it. But bad because I would be in recovery mode during my favorite holiday, and I'd be unable to attend the "Celebrate America!" concert at the Kennedy Center I had tickets for that same night. All in all, I was just glad to have something on the books. I felt better knowing my lumpectomy was officially on the docket, as if that kept me one step further away from mastectomy.
On Tuesday, June 17th, I had my consultation with my new radiation oncologist. Of all the physicians I had met with since forming my new plan, she seemed the least enthusiastic. While everyone else kept assuring me I was a great candidate for this, her thoughts were more along the lines of, "Well, you're going to do what you want, so I can't force you." She went the protocol for partial-breast reirradiation. It sounded a lot easier than whole breast radiation, and it was a lot shorter duration (every day for 3 weeks as opposed to 6). She also informed me that there's yet another new test they can do that's similar to the OncotypeDx and the Breast Cancer Index. This one is called DCISionRT and, like the others, it checks for various genetic markers on the cancer to determine whether the patient would benefit from radiation or if lumpectomy alone is enough. If I could avoid radiation entirely, even better! Chances are, since my DCIS was high grade, my test would come back in the high risk category, meaning radiation is still necessary. However, she said that about 15% of the time, she's pleasantly surprised, so it was worth it to run the test on me just to be sure. They could even use the tissue samples from my biopsy, so I didn't need to have another procedure. The only thing was that it takes about 2 weeks to get the results and my surgery was only 16 days away, so we had to cross our fingers that it would come back in time.
My Magseed placement was scheduled for first thing in the morning on Monday, June 30th, 3 days before my surgery. I had to wake up before the sun was even up to get ready and drive out to Leesburg by 7:30 a.m. My biopsy site was still very sore and swollen with a sizeable hematoma underneath, so I wasn't crazy about being manhandled there again, but at least it should help them identify the correct area.
The first thing they wanted to do was a mammogram in order to ensure the biopsy clip had been placed correctly. (That's usually done immediately after the biopsy, but my inability to stop bleeding that day prevented that from happening.) So I did that first, then waited in the dressing room while the tech ran the images back to be read by the radiologist. A few minutes later, she called me back into the imaging room, stating that the doctor wanted to double-check something, then she pulled out the high-resolution paddles. I started to get a bad feeling in my stomach. She took a couple more images, then told me to wait there in the room while the radiologist read them. I waited for a few more minutes, pacing nervously. When she came back in, she directed me into another room so the radiologist could go over his findings with me. That bad feeling in my stomach was starting to get even worse.
I sat in the consultation room in my drab cloth hospital gown, fidgeting anxiously for several minutes. The radiologist then entered the room and quickly introduced himself. Suddenly, we both paused as a wave of recognition passed over us.
"We've met before!" he said. It was the radiologist who'd done my very, very first biopsies back on April 24, 2017! The irony was certainly not lost on me. The deja vu was overwhelming, not to mention unsettling.
"What's going on?" I prodded him. He then broke the news that he had seen 2 new areas of microcalcifications on my mammogram that morning, both distinct from and in completely different areas from the previously biopsied lesion. He'd compared the images to my earlier MRI, screening, and diagnostic mammograms and neither had appeared on any of them. Whatever these were, they had literally popped up in the span of 4 weeks. He recommended biopsying both of them. Unfortunately, he wasn't able to fit me in for a double biopsy right then since he had a full schedule of patients, so we would have to schedule those for a later date. In light of this, he felt that we should cancel the Magseed placement that day just in case the biopsies came back showing that lumpectomy is no longer indicated.
No longer indicated. Med-speak for unnecessary. In other words, he felt there was a high enough chance I would not be able to have breast-conserving surgery that it would be a waste of time to prepare for one, unless the biopsies proved otherwise. Every physician likes to say it's "just to be safe" or "to err on the side of caution" but I've since learned that's merely a platitude. He clearly felt these new suspicious areas were most likely DCIS and, at that point, I had no reason to disagree.
"FML." I told him, resignedly. So, my Magseed placement was cancelled and my biopsies were scheduled for noon on Thursday, July 3rd since they couldn't get me in any sooner. My lumpectomy was officially postponed, pending the results.
The universe apparently was not yet done throwing me curveballs.
To be continued in 2025 A.D.: Part 3
