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Diagnosis / Treatment Update: The Pathology Report

I got my pathology report back sooner than expected and was able to speak with my colorectal oncologist, Dr. Cannon, about it. After cutting the tumor (and my rectum, and the surrounding tissue) out of my body, it was sent to pathology for detailed analysis. 

Here’s what the report came back with:

  1. Clear margins. The closest cancer cell was 0.5 cm from the edge of what was removed—meaning my surgeon got the entire tumor out with clear and negative margins.
  2. Thirty seven negative lymph nodes. In colorectal cancer surgery, examining at least 12 lymph nodes is the standard benchmark. In my case, more than three times as many were removed and examined and there was no cancer seen in any.*
  3. Lymphatic / Vascular invasion not identified. (No cancer seen invading lymphatic or blood vessels.)* 
  4. Perineural invasion not identified. (No cancer cells seen growing in, around, or along nerves.)*
  5. No tumor deposits identified in the surrounding tissue.
  6. Tumor budding score: Low (0-4). I had one. (A tumor bud is a cell or small cluster of cells that have separated from the main tumor. Higher tumor budding is associated with a greater risk of local invasion, lymph node involvement, and distant spread.)
  7. The remaining tumor extended into, but not through, the muscular wall of my rectum.
  8. Post-surgical staging: ypT2N0. (y = staging after treatment, p = pathologic staging based on examination of the surgically removed tissue under a microscope, T2 = the remaining tumor extended into but not through the muscular wall, N0 = no cancer found in the lymph nodes.) This corresponds to yp Stage I cancer (pathologic Stage I after treatment). Before treatment, my clinical stage was Stage IIIB cancer: cT3N1M0.

*Why do these matter? Because lymphatic and blood vessels are pathways cancer cells can use to move beyond the original tumor. Cancer cells can also invade or track along nerves.

I also want to mention that, according to the operation report, one of the first things my surgeon did with the robot was look at my liver—the most common site of distant metastasis for colorectal cancer. The report says, “The liver appeared normal and no abnormalities were seen.” I appreciated that detail. For what it’s worth, my CT scan in January didn’t show anything there either.

The plan:

Since I’ve been following the PROSPECT trial protocol, Dr. Cannon would like me to do another six rounds of chemo—which he had told me to plan on doing. In PROSPECT, patients in the FOLFOX arm received six cycles of preoperative FOLFOX, and another six cycles of postoperative FOLFOX were suggested but not mandated

I’m a bit bummed about having to do another six rounds of chemo, but I have been expecting it all along so the blow didn’t hit too hard.

That said, Dr. Cannon’s not going to include any oxaliplatin in any of the rounds. As he said, “You don’t have neuropathy and I don’t want to give it to you.” There are other clinical reasons behind him making that decision as well, but in addition to not getting cancer again I would also like to not get neuropathy. That’d be a major hit to quality of life and I’m already getting enough of those.

Dr. Cannon also said that oxaliplatin accounts for 80% of the side effects of FOLFOX so these six rounds should be much easier than the last. I think that’s an astoundingly high number so I’m going to make my mindset “This will be half as bad.” Though, perhaps I should make my mindset, “We’ll just see what happens.”

The side effects and risks from the 5-FU I’ll be getting include:

  • Fatigue (which hit me hard)
  • Nausea (which also hit me hard)
  • Other GI issues which may be exacerbated by—or difficult to distinguish from—my LAR surgery
  • Mouth sores/mucositis (which set in for me mildly in round five last time)
  • Hand/foot syndrome (didn’t get it the first time around)
  • Blood count suppression (mine dropped but stayed safe through all six rounds last time)
  • Skin/nail changes (was mild last time)
  • Cardiac toxicity (yay chemo… good thing I’m already getting quarterly echo’s because of the cardiac toxicity risks of the Herceptin for breast cancer!)

Because we’re removing oxaliplatin, I won’t have the oxaliplatin-induced cold sensitivity or continue accumulating oxaliplatin-related neuropathy risk.

Dr. Cannon did give me the option of doing these next six rounds with a pill (capecitabine/Xeloda) instead of a pump (Sir Spits a Lot), but the pill may cause a higher likelihood of diarrhea and hand/foot syndrome. I declined and decided to do another six rounds with the devil I know. If I’m going into battle again I prefer to do it against a known (and now weaker) enemy. 

When we start:

Dr. Cannon’s going to give me a whopping five weeks and six days to recover from LAR surgery and I’ll start chemo again on September 7. I’ll be done by Thanksgiving, if I don’t miss any rounds for any reason.

What happens after that:

The plan is I’ll move to surveillance for the rectal cancer, with Dr. Cannon. That will involve two CT scans a year and quarterly appointments with him for the first two years, when recurrence risk is highest, then one CT scan and two meetings with him per year for three years, when the risk of recurrence continues to decline. We’ll do Signatera draws and other blood work all along, which can help detect recurrence earlier.

I’m not yet sure what my surgeon’s surveillance plan will be (she’ll do my colonoscopies), but I meet with her for a post-op next week so I should learn more then.

On the breast cancer side, I’m still on track to continue Herceptin through March 2027 and will at some point go on endocrine (hormone-blocking) therapy—type TBD—for five years. I meet with my breast oncologist this week and will learn more as the colorectal plan has now been set.

How I’m feeling:

Primarily? Relieved. There’s still a lot of treatment and treatment time ahead but the big stuff is now behind me… you know, once I recover from this major abdominal surgery and re-learning how my entire digestive function works. 

Honestly I’m also scared. In the meeting with Dr. Cannon I noticed a familiar thought pattern that went like this, “What am I going to do when this is over? I need to get a job, like, now!” After the thought I felt panicked. Memories of last fall—and from even back in my marriage during all those years where I felt like I wasn’t working or contributing enough—came flooding back. It’s taken a couple days to talk myself down from that and re-orient to what’s important now.

Finally, I am so grateful. My team is incredible. I am so lucky to have them all. 

And, as I’ve told my closest friends and family, I promise I will also sit with the fact that so much of this success is actually my doing. I did this too.

 


 

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Diagnosis / Treatment Update: LAR Surgery and Hospital Stay

I’m one week out from my Lower Anterior Resection (LAR) surgery and things are going well so far. My surgery was done with the da Vinci Surgical System, so it was minimally invasive—though it’s strange to think that four robot arms digging around in your abdomen and pelvis is minimally invasive. But I’ll absolutely take it over being completely cut open.

Here’s what I walked away with:

  • Five incisions on my abdomen, four of which are about a centimeter in size (where the robot arms went in) and one of which is about an inch and a half (where they pulled the tumor out)
  • No ostomy 
  • And, perhaps the most important part: the tumor is gone. I did get my pathology report back, and while I don’t want to share all of it until I speak with my oncologist to gain a better understanding of it, I will share that my surgeon got clear margins—no cancer cells at the edges of what she removed. This is HUGE news. 

Some side notes on my colorectal surgeon, Dr. Matzie:

  1. She’s awesome—female, no bullshit, blue eyes that make direct eye contact, Harvard degree, hiked the Grand Canyon down and up—twice, in two consecutive days—and cusses just as much as I do.
  2. She wasn’t my original surgeon, remember? Unbeknownst to me and my colorectal concologist, Dr. Cannon, my original surgeon left his practice this spring and went to Vietnam…forever? For real. So, Dr. Cannon recommended Dr. Matzie… and so had my breast surgeon way back in early February when we first learned of the second diagnosis. So, Dr. Matzie and I believe we were just supposed to be together all along. Which is 100% true because this woman just helped save my life in a major way.

Here are some highlights of this surgical journey:

Prep Day: Monday, July 27

I had to do an all liquid diet—but it didn’t have to be all clear liquids like it did for my colonoscopy! Dr. Matzie said I could drink whatever I wanted and to “not worry about all those little details.” My bowel prep was two bottles of Miralax in eight 8oz glasses of whatever I wanted over two hours. So, no yucky tasting stuff this time. I had prep that was mixed in orange gatorade, red gatorade, beef bone broth, chicken bone broth, coconut water—what delicacies! And, we all know what happens next, and that was completely fine.

I did my first Hibiclens shower, dried off with my clean towel, dressed in my clean pyjamas, and went to bed in my clean sheets—just like I did for the other two surgeries I’ve had in the last five and a half months.

Surgery Day + PACU

I had to wake up at 3:30am to drink one final thing: a bottle of Ensure Pre-Surgery. Gross but tolerable. Then, Hibiclens shower #2, dress in clean clothes, and leave for the hospital—Inova Fairfax, where I was born. This will be the first time since my birth I have been hospitalized.

The only interesting pre-surgery thing to note: I agreed to a research study, so part of my tumor now sits in a tissue lab for years, available to anyone studying this. I gave extra blood, did a half-hour interview, and it felt good to help in the smallest possible way I could given the circumstances. If a tiny piece of my tumor helps someone else someday, that’d be great.

I was given Versed and wheeled into the OR—without my glasses, which was super disappointing as I am blind without them and therefore couldn’t see the robot. They set me in place and I remember my drunken-Versed self asking if they could play Into the Mystic, and they did! It was loud in there (or I was very high) so I had to strain to hear it. Then, unlike the first time, I heard the whole song. It ended and Brown Eyed Girl came on. I exclaimed, “You can skip this one!” and someone in the room said, “Why, because you don’t have brown eyes?” and I said, “Yes!” (I’ve never liked that song…) Song three came on and I remember thinking, “Oh I love this song… what’s the name of it… don’t forget this song, Alli…!” Then I was out. No clue what the song was. I’m looking forward to six months from now when I hear it and my little trauma memory pops back to life. 

Surgery took exactly four hours. During it they removed the tumor, most of my rectum, surrounding fatty tissue (the mesorectum), 37 lymph nodes (they usually aim for 12), and a couple centimeters of my colon before reconnecting my colon to what little rectum remained.

I woke up in the PACU, learned I didn’t have an ostomy, and was totally high on all the meds so things get a little spotty for the next couple days. Here’s what I remember:

  • I was on a clear liquids, then liquids only diet until Wednesday night. (That’s three days without food.) I had water, broth, apple juice, jello, and one popsicle.
  • I walked across the hall (like, 15 feet) within hours of waking up.
  • I had a Foley catheter for two days (which had to be wiped by a nurse any time I used the bathroom)
  • I had no control over any bowel function for about one day and very little control for about another day.
  • I was in the PACU for 30 hours waiting for a room.
  • I was in very little pain because I was on a solid Oxy/high-dose Tylenol/high-dose Ibuprofen rotation + Anesthesia come-down
  • My mom, dad, and step mom were there
  • One of my nurses worked at a five star resort in Mauritius and while he wanted me in a room he didn’t want me to leave because anyone could come out of surgery and take my space, including a prisoner, and he thought I was nice. 
  • I walked to the bathroom, supervised, a couple times. I walked down the hallway, supervised, once. All times with a walker. 

Hospital Stay 

  • I was moved to my room on Wednesday around 6pm—private room, 11th floor, view of the sunrise.
  • By the time I was moved upstairs I had pretty good control of my bowel movements.
  • Because I was tolerating liquids well, on Wednesday night I was transitioned to a regular diet. I had three bites of chicken salad and two bites of bread.
  • I was taught how to get in and out of bed using a little roll and press technique since my abdominals (and fascia) were cut through.
  • I did three to four laps of the hospital wing each day with my IV pole for balance, and was supervised by a family member most of the time.
  • Over these next several days the spasms, cramping, gas pains that happened throughout my entire digestive tract were insane.
  • On Thursday, my colleague Ben called (he never calls) and said, “I’m asking permission!” I said, “For what?” He said, “To come visit!” He was 15 minutes away and had just finished a workshop. So, he came and visited for about two hours and brought me a stuffed Capybara. Totally f’ing random but a) so cute and b) at least 75% of the people who came into my room the following days exclaimed “Is that a Capybara?!”—including Dr. Matzie and all of her residents. I was really touched.
  • Then, after Ben left—or even a bit during—things got rough. My pain skyrocketed to what had been about a steady three/four on the pain scale up to a steady eight/nine.

    I couldn’t sleep (more than I already couldn’t sleep) and got out of bed to pace across my room, then eventually out in front of the nurses’ station. After a few steps it was hard to move my right leg.

    The nurses wanted to give me more oxy, which I took, but I kept telling them it wasn’t touching the pain. I cried a lot during this time but it is very hard to cry or blow your nose when you can’t contract or really move your abdomen without even more pain. It was incredibly painful to breathe, sit, stand, lie down; nearly impossible to get my legs in and out of bed.

    When the surgical team checked in on me Friday morning in rounds they said I could probably go home that day and when they asked me how I felt about that I said, “Scared.”

    I explained to them what was going on and requested to go off the oxy and onto Gabapentin, as I had for my mastectomy and told them my pain was so bad in the lower right quadrant of my abdomen—where my surgical drain was. (And we all know how much I love drains….)

    That afternoon (Friday), one of the residents came in and said she had spoken with Dr. Matzie and she said it would be safe enough at this point to pull my drain—I had already asked if I’d be sent home with it, we had already talked about how they can become a nuisance. I had three for my mastectomy, remember?

    But let me tell you: it is one thing to have three drains pulled out of your rib cage—one of which looped up over my left breast—and it’s a whole other thing to have a drain that goes from the right side of your belly all the way down to your rectum pulled out the side of your abdomen. And no, they don’t anesthetize any of it.

    “It will hurt, but it will be fast,” they say. And it does, and it is. And just like last time I didn’t care how much it hurt to take out because it hurt so much to have it in. And just like last time, within 45 minutes I felt so, so much better.

    As I said to my mom, “I’m so glad I had a mastectomy so I knew what this pain was and how to make it better!” Silver linings I guess.
  • Some things I enjoyed: waking up Thursday as the sun rose and thinking, that’s so beautiful, before grabbing my O2X Sleep Specialist–approved eye mask and going back to sleep for the twenty minutes before rounds. My TV had a white noise feature, so I had ocean sounds and images on the screen practically around the clock. And Dr. Matzie’s entire surgical team was women — two or three of them knocking each morning, walking in after my sunrise and my tiny nap, and I’d think, I love my team.
  • I was discharged Saturday morning, making my total hospital stay four nights.
    • P.S. Discharge happened in the “Discharge Suite.” Inova Fairfax is amazing.

Where I Stand Now

  • I’m still on a tight Gabapentin/high-dose Tylenol pain management cycle. Pain is low—a two?—and only spikes when I try to sit up, sneeze, laugh, cough (I can’t do any of those things); and is agitated when I roll over, stand, and walk. But…they cut through my entire abdominal wall and operated deep into my pelvis, so I get it. It will take several weeks for this to heal.
  • I’ve started little walks outside and hope to do a four block one this evening 
  • I’m sore and swollen and get tired pretty easily
  • Bowel movements are under control—just happening in their new strange way almost every time I urinate. This will likely shift and change as swelling decreases (I’m very swollen) and I begin to eat more. It will be a multiple-month process to see what my new normal is since I no longer have a rectum. (I think maybe 1cm remains? I have to check the surgical note or ask her.)
  • I’m eating four to six small meals per day, taking it gently with what I eat and stepping it up a little each day. So far, no problems. 
  • My mom is staying with me for the week to help take care of me, walk Toby, and drive as I’m still on movement restrictions.

I know I’m still in the period where complications can happen. Anastomotic leaks and infections are still possible, and my body has a lot of healing left to do.

But today—one week after surgery—I have no ostomy, clear margins, manageable pain, and a body that seems to be healing well.

I honestly wasn’t sure, after everything my body has been through in the last six months, I would be able to say that. So, to me, this is an enormous win. 

 


 

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To listen to an audio version of this on Spotify, click here. To listen on Apple Podcasts, click here.

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