2x2mm of Worry

I’ve been hesitant to write this because among my handful of subscribers, three are friends and family who I do not want to worry. But, research and writing is how I deal with my own worry, so I’ve decided to post this anyway and ask those friends and family who read it to please keep this to themselves so as not to worry other friends and family. In fact, I realized I never even told my parents I was having the endoscopy, and now I cannot tell them until I have more information.

My endoscopy on Wednesday was not unremarkable. In fact, there were three remarks.

Remark One: “A single 4 mm papule (nodule) was found in the gastric antrum. Biopsies were taken with a cold forceps for histology.” My GI doctor says this is probably scar tissue or something else related to my gastric sleeve procedure almost two years ago. I’m not super worried about this; all of my research shows that these tend to be benign. I might send a message to my bariatric surgeon so she can look at it too, just in case she has ideas before the biopsy results come back (which could be who knows how long).

Remark Two: “Small hiatal hernia.” This is also common after gastric sleeve surgery; my GI doctor didn’t even mention it after the procedure. It hasn’t caused any problems, but I do read about a lot of WLS patients having surgery to repair hiaital hernias. My plan is to live in denial about this until I actually have some sort of symptoms – reflux, heartburn, etc – although I suppose my bariatric surgeon will see it when she looks at the report. Just gonna wait on that.

Remark Three: “A round nodule was identified at the outer border of the pancreatic tail. The nodule was hypoechoic. The nodule measured 2 mm by 2 mm in maximal cross-sectional diameter. Had similar echogenicity as spleen suggesting it may be a small splenule. Other possibilities include small NET or intrapancreatic lymph node.” My doctor said this was too small to biopsy, which I didn’t totally understand but was too post-anesthesia groggy to ask — if it’s so small, why didn’t he just pluck it out? I have an appointment for an MRI in October so he can see it better.

So, yeah, of course this is the one I’m worried about. It’s small, so I guess that’s good (2x2mm is 1/5 the size of a pea). Also, it’s round, which tends to also be good (tumors are more like amoebas). But no biopsy and MRI in October means it’ll be a while before I know what this is; it also means that whatever it is has three more months to grow (although I suspect this is what my doctor wants, so he can better evaluate it). My doctor’s note indicates it could be a piece of spleen, a neuroendocrine tumor (NET), or a lymph node – and he didn’t seem too concerned after the procedure, but he also didn’t say “no worries, it’ll be nothing.” While NETs are a less common kind of pancreatic tumor (less than 2%), it seems kind of logical that if I have a tumor, it might be this. I had hormone-positive breast cancer, and I’ve been taking hormone blockers for five years. So why wouldn’t this be a malignant tumor? I mean, I don’t mean to be pessimistic (a skeptic, yes), but I have pancreatic cancer in my family, I have a BRCA2 mutation, I’ve had cancer before, and I’m an Ashkenazi Jew – lots of signs point to cancer. Some research has shown that people with BRCA mutations who have had ER/PR+ HER2- breast cancer (like mine) are more likely to develop pancreatic cancer, but findings are “inconsistent.” Other research shows that the likelihood of breast cancer spreading to the pancreas is low, which means this could be an entirely new cancer (which would definitely be better than breast cancer metastasis). The problem I’m having in my research is trying to find out what percentage of these nodules are malignant. I’d just like to know the probability on this as I wait several months to find out what it is. I do know that with a BRCA2 mutation, my risk of pancreatic cancer is 10-15%, which doesn’t seem super high (although let’s remember I was one of the lucky 2% of people who had a breast cancer recurrence after mastectomy), but it is when compared to the general population.

Anyway, I’m going to stew on this for three months. See ya then.

Always Already

In my graduate school Critical Theory course, I learned the phrase “always already.” This phrase shows up in different contexts in literary criticism and philosophy (Derrida, Althusser, Heidegger, and others all used it slightly differently), but generally it means the same thing: something, whatever that thing is, has always been the case; it was already the case when we thought we discovered that thing. In other words, most “things” – usually ideas – don’t have a discernible beginning.

This is how I feel about my life and cancer. For me, cancer had “already” been the case when I was born with a BRCA2 mutation because it was “already” in my family DNA; cancer was “always” the case for me even before I was diagnosed with it (note that there is not a 100% chance of a cancer diagnosis with a BRCA mutation – but it is very likely). And because I have a BRCA mutation – a predisposition to cancer that has already occurred twice – I often feel like cancer will “always” be the case for me. This is not to say that I will “always” actively have cancer – I do not have cancer right now, to my knowledge, but its possibility is “always already” there for me.

I have two appointments coming up, both of which are surveillance scans to ensure I do not have cancer. One is a full body skin check to look for melanoma in August, and tomorrow I have an endoscopy to look for pancreatic cancer. Neither of these is awful to go through; endoscopy does require light anesthesia, but I actually look forward to a lazy day sleeping it off. The awful part is waiting – if the dermatologist or gastroenterologist see something that needs to be biopsied, I’ll have to wait to learn if cancer has come back. That’s stressful, yet these are a regular part of my annual routine (although I confess it’s been a way too long since I’ve had the skin check) – surveillance is always a part of my life, whether it’s my every-six-month oncology check-up or a diagnostic scan, which I seem to need at least once a year for some kind of body anomaly (such as the lung CT I had in March to determine the cause of my cough accompanied by back pain – it was nothing). But, to be honest, I feel like I am always waiting for cancer to come back, as if it’s already there.

A few months ago, I decided to start watching Grey’s Anatomy – there are something like 25 seasons of this show, and I suppose I felt like I needed a mindless summer project that didn’t involve doom scrolling. I’m on Season Six right now, which means (spoilers ahead), Dr. Stevens is going through cancer treatment. There is a scene in an episode where she has just had an immunotherapy treatment. She has tons of energy, is bouncing around the room, making plans, excitedly chatting with friends, and then…. she is the opposite of that. She is in bed, barely able to move her mouth to form words, every bone and muscle limp. I remember that feeling. I remembered it so physically in my body that I noticed my own jaw had gone slack and my breaths were short – I felt that kind of struggle in my lungs you feel when you’ve swallowed too much chlorinated pool water. I became so limp that my iPad slipped from my knees where it had been resting. I was stunned by how close that feeling was – as if it were already there in my body, waiting.

Cancer was already a part of my life before I was diagnosed with it, even before I knew I had a BCRA2 mutation. I’ve gone through my family history in multiple posts here. My paternal grandfather’s mother and both of his sisters died from cancer when I was young, and then my grandfather died from cancer when I was in my 20s. My paternal grandmother had several melanomas removed. Three of my father’s first cousins have gone through cancer treatment, and his brother died from pancreatic cancer. My mother’s step-mother went through breast cancer treatment as did my mother’s aunt; I was not biologically related to either of these women, but they were family nonetheless.

Most of my life has been experienced between cancer diagnoses, either those I love or my own. The idea of cancer never intruded on my life until I learned of my BRCA mutation, but cancer was always already there – it was in my DNA. It was in my family. And then it was in my breasts. And in my thoughts…. constantly. There is not a day that goes by that cancer doesn’t somehow come to my mind. It doesn’t typically get in the way – I still live my life as a mom, a wife, a daughter, a friend, a professor, a writer. I do all these things, usually with positivity and joy. Still, I cannot escape it.

My body has physical scars from mastectomies that I see daily when I change clothes, and mental scars that apparently manifest when I watch medical shows, as well as every time I make or go to an appointment for surveillance. I think about it when I take my arimidex pill each day, and when I brush my hair and remember that I was bald. Maybe this is about time – it’s been six years (and one month) since my second diagnosis, which I suppose isn’t all that long ago. Maybe in time, I’ll think about cancer less. Maybe I’ll need less surveillance. Maybe I won’t need the pills anymore. My scars will continue to fade.

But I know, no matter what, cancer will always already be there.

Update on Abdominal Mass

The ultrasound was ridiculous. I have never been in this situation before. The tech did the scans, then asked me to wait on the gurney while she ran them by the radiologist. Typically I’ve been told to leave and results will be published in the portal. So this was new. Within five minutes, the tech and the radiology fellow arrive together. The fellow is clearly puzzled; she takes the wand from the tech and starts pushing on the growth herself trying to figure out what this thing is. At this point, I try to offer some context to help her: I had surgery here 11 years ago, four years later I had a spitting suture that had to be operated on, maybe this is another one? She seems to buy this explanation, but admits this is “unusual,” so says she’ll talk to the attending radiologist, and they will publish a report later.

Report is published the next day with pretty benign findings. I email my oncologist and my plastic surgeon who made the original incisions and the procedure to close up the spitting stitches:

Hello Dr Gimbel and Dr Puhalla-

On Thursday, I went for an ultrasound as directed by Dr Puhalla for a growth I found in the same spot where Dr Gimbel performed a procedure to remove a “spitting suture” in 2017 (in an incision line from abdominal flap surgery he performed in 2013). A note that this spot did show up on PET scan in 2019 (if I recall correctly, it was biopsied, which revealed nothing). The radiology fellow who read the ultrasound said she had never seen anything like this before; she had no idea what it was. I explained that I’d had spitting stitches in the past, and wondered if perhaps this was what was happening again. She said she’d have the attending radiologist review the scans.

These are his findings:

FINDINGS:
There is a subcutaneous complex fluid collection in the left lower
abdominal wall along the left aspect of the surgical incision which
measures 4.4 x 2.1 x 3.9 cm. There are a few linear internal
echogenicities which may reflect retained surgical material. There is
mild subcutaneous edema. There is no abnormal or concerning internal
vascularity to suggest a mass.

I am wondering if either of you find these concerning or have a next step to suggest. This growth is not bothering me in any way; I’m happy to leave it there forever. However, I am worried it might grow or open up in the way the prior one did. Do you see anything that might suggest that? I’m wondering which of you wants to take over at this point, or if this even requires further medical attention.

Thank you!

My plastic surgeon wrote back this morning:

Hi Bryna

Thanks for your email.

It is not unusual for there to be some fluid (seroma), scar, and even old blood (debris) at a site that underwent excision in the past.  If no symptoms it does not sound concerning to me. But if Dr Puhalla has additional questions about it, it could be imaged better w CT w IV contrast.

Hope you are doing well!

I am a bit surprised by this, tbh. Not unusual? ELEVEN years later?? Ok, I guess. I have not yet heard from the oncologist, but I sort of expect that no further evaluation will be necessary.

Does it ever end?

This is what my husband asked me on the phone when I called him on Tuesday afternoon after my every-6-month check up with my oncologist. “Nope,” I replied. Because after you’ve had cancer, after you’ve had chemotherapy, and when you have a BRCA mutation, it seems like there is always something. Here are my two current somethings:

Abdominal Mass (minor concern)
About two weeks ago, I noticed a rather large mass just under the skin in my abdomen under the hip-to-hip scar I have from my flap surgery back in 2013. It is at least the size of a golf ball and kinda squishy. I’ve had an issue in this exact spot before, which I described in this 2019 post, although the problem occurred in 2017. Still with me? This scar is old – as of a few weeks ago, it is 11 years old to be precise. Why is it continuing to give me trouble? Who knows? As I’ve established, my body hates me. My oncologist wants an ultrasound to determine what it is. I don’t think she suspects cancer and neither do I. She thinks likely it’s scar tissue. I mean, who has cancer just under the skin in the middle of their tummy? Ultrasound is this afternoon. I am not worried about what it will show. I am a little concerned that this thing might need to be surgically removed — I DO NOT WANT ANY MORE SURGERY!!!! I’m hoping whatever it is can just live in there forever. For all I know it’s been there for years. Oncologist pointed out that I might just be noticing it now because I’ve lost a lot of weight, and it could’ve been there for a long time hiding under fat. Seems legit to me.

Hip Pain (less minor concern?)
I have been having pretty decent but not debilitating pain in my left hip for a few months now. I had been attributing it to a new (used) chair we put in our dining room. While we have been house-training our puppy, who arrived in November, and confining him (and ourselves) to the dining room, I spend many hours a day in this chair. When I described this hip pain to the PA on Tuesday, who I saw before I saw my oncologist, she suggested I take about a month off from Arimidex, which can cause joint pain. The oncologist, however, had different ideas. She said it would be unusual for Arimidex to be causing this pain now that I’ve been on it for almost four years. Nonetheless, she said stopping it for a month wasn’t a terrible idea and might be worth a try. I mentioned I was having a DXA scan next week and maybe that would show something. She was not interested in this; DXA only scans for osteoporosis, and osteoporosis, according to her, isn’t typically painful (although everything I hear and read says the contrary). What she wants me to have, if the month off of Arimidex doesn’t do anything, is a bone scan. And what does a bone scan look for? Cancer.

So obviously now I’m worried. If you’ve never heard the acronym BBLL, it stands for bones, brain, liver, and lungs, the four places breast cancer is most likely to spread if it metastasizes. I would describe my oncologist as pretty conservative – she explained to me early on that she doesn’t prescribe any preventative scanning even after cancer diagnosis. Scans only happen with symptoms. So, no yearly PET to check for metastasis, no annual anything (I don’t think this is unusual). Just 6-month appointments where she and the PA palpate my chest wall, and I’m guessing those will spread out over time. The ultrasound for a mass that we can all easily feel makes sense to me. But the fact that she is suggesting a scan for my hip pain is definitely disconcerting.

So does it ever end? I’m hoping this particular situation ends in one month with a cease and desist on the Arimidex and no further testing needed.

Patient Advocacy

As I think I’ve mentioned, in my day job, I do research in the Rhetoric of Health and Medicine. For me, this means that I look at how discourse (writing in particular) is used in healthcare settings to support patients, or how that can be done better. There are lots of people in RHM who do research like mine, and way too many of them who find that patients are not treated well, sometimes by doctors, and sometimes by healthcare systems that are set up not to allow doctors to do their job as best as they might want to.

If there is one thing I’ve learned through being in this research community for the past 10+ years, it is that we must advocate for ourselves when we are done wrong in a healthcare setting, because no one is going to do it for us, and we owe it to ourselves to make sure the next patient in the room is not treated the same way. I am so beyond tired of being treated badly, and for me it’s not usually by a doctor, but something that is systemic of the healthcare system in my city. I live in Pittsburgh, and University of Pittsburgh Medical Center (UPMC) rules the roost around here (and is where my insurance is taken, so I couldn’t boycott it if I wanted to). UPMC is huge, it wins award after award year after year for excellence, and I do believe that most of the doctors really are excellent. But for a variety of reasons I won’t list, the system doesn’t always allow them to shine.

Anyway, back to self-advocacy: I wrote this email today (below). I’d been thinking on this issue for over a week, and I finally realized, if I don’t say anything, this won’t change!! No one should be treated badly when in a vulnerable medical situation, not me or anyone else. So no matter how small or stupid or minor you think the issue is, say something. I especially encourage you to use sentences that start with “It made me feel like….” and repeat those a lot! And if you need help with this task, ask me – I will happily help you write an email to the person in charge to try and get something done (and yes, I have done this for people before – it is one of my skillsets, and I am proud of it!).

Dear Dr. *** and Dr. ***-

As the Co-Directors at the Breast Cancer Center, I wanted to make you aware of a situation that recently occurred as I tried to see Dr. ***. I want to say upfront that I do not believe Dr. *** or your staff are responsible for any of this – I suspect this is a UPMC-wide issue. Still, even if it is systemic and not specific to your office, perhaps there is something you can do about it.

I was supposed to have an appt with Dr. *** about a month ago. A week before, I received a call from the office telling me it would need to be rescheduled unless I wanted to see a PA. I asked to reschedule. A week later, a few hours before the rescheduled appointment, I received a call asking me if I would prefer to see a PA instead of Dr. ***. I was told that things would “move more smoothly and quickly” if I chose this option; at this point I caved and said I would see the PA, although later I ended up rescheduling the appt because of a snow storm. The appt is in two weeks from now – in MyUPMC it says *** PA/NP, so I am assuming that means I am seeing Dr. ***’s PA and not her, or perhaps both of them.

There are two issues here. First, I am fine with seeing a PA for certain concerns or seeing the PA in addition to the Dr at the cancer center, but I am not ok with seeing a PA (and no Dr) for a chronic life/death genetic (I am BRCA2+) condition like breast cancer. I understand the training that PAs go through, and I respect it. But it is not the same as an oncologist who has had many more years of cancer-specific training. Second, if your clinic works more “smoothly and quickly” if patients opt to see PAs and not doctors, then something is very wrong. 

This whole thing might seem minor to you, but I want you to understand how it made me feel. It made me feel like my case, in the eyes of your office, is not that important, not important enough to need to see a medical doctor. It made me feel like you think I’m “done” because I’m close to the 5yr end-of-treatment mark, and therefore no longer need/deserve the treatment of an oncologist – that my case isn’t a priority. I realize I am not in active treatment, and so I might not be a priority above someone who is. But I deserve the time I scheduled with the doctor just like anyone else. I discovered my second case of breast cancer on my own 5.5 years after my first diagnosis, after I was “released” from surveillance visits, so I’m not fully optimistic that I’m out of the woods right now. This knowledge of the particulars of my case should ensure that the Dr would want to see me. 

I’m asking that you please look into this issue so that other patients don’t feel devalued the way I do.

-Bryna