Update #2 on Abdominal Mass (tw: graphic details and pic)

Sigh. Deep breaths. This is not a big deal. I can get through this.

Ok, I’m ready now. So, here is what has happened over the last week. As I have explained, way way back in 2013, when I had my first mastectomy with abdominal flap reconstruction, my dr made a hip-to-hip incision across my abdomen. It healed well – it was smooth and barely noticeable (not that I was ever wearing bikinis or that anyone other than my husband was seeing it anyway). Five years later, a strange sort of blister formed randomly along the scar on my left side. It looked like this at first:

On the right side you can see the smooth incision (along with some stretch marks and marks from my pants waistband), and on the left side you can see the gross blistering thing that grew over a period of a few days with the incision traveling across like a disgusting varicose vein. Eventually that thing (an infected permanent stitch) opened up, grossness ensued, my plastic surgeon tried to fix it in his office twice to no avail, and I had to have surgery for him to open it up, clean it out, and close it back up.

Ok, fast forward to a month ago (now 11 years since that first incision and 6 years since that surgery to fix the wound). I feel under my skin in the same exact spot a lump. I happen to see my oncologist for my regularly scheduled check up a few days after noticing it, and she orders an ultrasound. Ultrasound tech and radiologist have no idea what it is, but they can tell it’s not cells, so it’s not cancer. I email my plastic surgeon who says yeah, it could be another infected stitch, just keep an eye on it, no need to do anything unless it gets worse.

Well, this is my body we’re talking about, so of course it got worse. Within a few days, it grew. Then it became raised so I could see it above my skin along the incision. Then it became red and purplish (see above pic). At that point, I made an appt with my dr for the end of March. On Saturday night, a half hour before my husband and I were leaving to see Book of Mormon, I noticed the teeny tiniest drop of blood in the center of it. When I went to wipe it away, well, the floodgates opened. I managed to clean it and bandage it, and it was fine for a couple of days.

On Tuesday, I showered as usual, cleaned it in the shower (lots of grossness), bandaged it, and then went to a long meeting. When I stood up at the end of the meeting, I realized I was wet! This thing had oozed through two bandages, my pants, and my shirt. Luckily I was wearing a long black cardigan and could quickly cover up. Immediately upon returning home, I emailed my dr. His nurse set me up with an appt to see his PA this morning (he is out of town) and to see him on Tuesday.

This morning I saw the PA. Like most everyone who’s seen this thing, she was pretty consfused as to what it is. Nonetheless, her orders from the dr were to open it up further, clean it out, and pack it. So she got right to it. This stuff doesn’t tend to make me queasy. I’m saying “grossness” in this post instead of giving a lot of details in order to spare my three readers, not because it really grosses me out that badly. I’ve gone through a lot of gross body stuff: in addition to multiple surgeries, I’ve had a baby, I have two dogs – I mean, I touch lots of fluids and scabs and materials that aren’t even my own. But when I saw what this PA was doing this morning, I nearly passed out. I’m going to describe it right here and you can skip down to the next paragraph if you’d like: she took the naked back end of a long q-tip and stuck it into the hole in this large blister, then pushed it through to create a large pocket, like a hollow sac, so that she could remove any clots and other debris and so fluid would exit more easily. It didn’t hurt; I did feel some pressure, but watching just how far in she could push that stick seriously made me almost black out. She took a small-tipped bottle of saline, put the tip into the hole, filled the sac with fluid, then flushed it out. Then she used the naked back end of a clean q-tip to push a strip of gauze into the pocket, and instructed me to do this to myself twice a day.

I left there with with a bottle of gauze strips and a handful of long q-tips. And now I’ll be packing my own wound until I see the dr on Tuesday, when I expect he’ll tell me to prep for yet another surgery. Like I said: sigh. Deep breaths. This is not a big deal. I can get through this.

The (un)lucky 2%

When you have a bilateral mastectomy after breast cancer diagnosis (even if it’s stage 0 DCIS, like I had the first time), your chances of a recurrence (even with a BRCA mutation) are said to be 1-2% in your lifetime. So when I had a recurrence seven years later, I was definitely…. well, I wouldn’t say surprised. As I’ve established on this blog, mostly I was angry. It wasn’t supposed to happen. To learn you are in 2% of a population and it’s not the billionaires of the world is kind of a smack in the face. Even my doctors were shocked and confused (which, btw, did not make me feel the slightest bit better about the whole thing).

Even though it’s sad to hear stories of people who have cancer, I have to admit I was kind of relieved to hear these stories of Stacey Sager and Helene Sorin, both of whom have BRCA mutations, had bilateral mastectomies, and still had cancer recurrences. While I’m not happy to know this happened to them, it still felt sort of nice to know of other people, although they are strangers to me, who are out there and who are part of my 2% community.

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