PET Scan Results (tw: gross pics below)

After waiting what seemed like an eternity, I emailed Dr. McAuliffe on Thursday morning (July 4) to let her know that my PET scan results were not yet in my medical portal. She replied quickly to say that it must’ve been a technical glitch, and she’d have someone in her office publish them the next day (since it was a holiday). Clearly not realizing what I really wanted was the ACTUAL RESULTS, I wrote back to ask if she’d seen them and if she’d share them with me. She did:

Thankfully, no distant metastatic disease. There’s an expected bright spot where the cancer is. There is also a spot on your low abdomen where you had the infected stitch that Dr. Gimbel excised. Radiology wants to biopsy it, just to make sure there’s nothing else going on there. My ofc is working on arranging an appt for that.

Great news – no metastatic disease!

Here are the relevant parts of the actual report that showed up in my portal yesterday morning:

There are postsurgical changes status post bilateral mastectomies 

with TRAM flap reconstruction. Lobulated enhancing 2.2 x 1.8 cm 
mass 
in the upper outer reconstructed right breast with focal 
FDG 
uptake max SUV 9.2 is compatible with biopsy-proven malignancy. 

In the left anterior pelvic wall, there is subtle nodular 
thickening 
just anterior to the left rectus measuring approximately 

2.6 x 1.7 cm, with suspicious focal FDG uptake max SUV 8.5. 

Clips in the right axilla compatible with prior axillary lymph 

node sampling.

So, let me backtrack about this infected stitch/anterior pelvic wall thing. I’ve gone through all of my prior posts, and I am shocked to see that I did not write about this at all, especially because it was so beyond frustrating that it is exactly the kind of thing I would’ve taken to the keyboard to bitch about profusely. I’ll try to give the short version here.

As we all recall, in January 2013, I had a bilateral mastectomy with abdominal flap reconstruction (muscle-sparing free TRAM on the left, SIEA on the right — ideally the surgeon wanted to do SIEA on both sides, but an individual’s anatomy dictates what they are able to do); this results in a hip-to-hip scar across the entire abdomen. My plastic surgeon, Dr. Gimbel, did a really nice job revising the scar in December of that year so that, over time, it has smoothed out with the rest of my skin, and the color has become quite pale although it will probably always be visible. In October 2017 (almost five years after the initial surgery), I began to notice swelling on the far left side of the scar. I sent him these pictures to show the difference between the left and right side:

 

You can easily see how the left side is dimpled, raised, and inflamed, while the right side scar more easily blends in with the stretch marks on my skin. He suspected this was a “suture site infection or “spitting sutures”; while not uncommon immediately after surgery, 4.5 years later is pretty odd. He prescribed antibiotics. Within a few days, however, these raised areas opened up into large gaping holes (I’ll save you the details of what came out of them — also, this is where I swear I wrote about this already, because I was at a Feminists Rhetorics conference at the time giving a talk on women’s health advocacy, and the irony of having to pack my own wound in a hotel bathroom so that I wouldn’t ooze goo all over my presentation clothing was not lost on me).

I saw Dr. Gimbel twice to have him attempt to fix these wounds in his office; they healed once, opened up again, he fixed them again…. all to no avail. Eventually, he scheduled me for surgery, which I had on December 15, 2017 (almost five years to the day that my DCIS was found via mammogram).

Apparently the surgery was pretty easy. I notice on my calendar that I went to a pretty big work event only two days later, my son was home from school with me for two days later that week, and my husband and I went to see the new Star Wars movie that weekend. I guess I felt fine. Here’s what the pathology from the surgery said:

SKIN AND SOFT TISSUE, LEFT ABDOMINAL WALL, EXCISION:

SKIN AND SUBCUTANEOUS TISSUE WITH SCAR, FOREIGN BODY 
GIANT CELL 
REACTION,CHRONIC INFLAMMATION AND HEMOSIDERIN 
DEPOSITION.

All cultures of the site, however, showed “Rare Pseudomonas aeruginosa,” which to me sounds pretty bad especially because I am immunocompromised due to RA, but he said the site had simply been “smoldering” and should be fine now that he’d removed everything from there and sewed it back up.

I haven’t had a problem with it since…. until now, it lights up on the PET scan. So I start doing some research on “pelvic wall” and “PET scan” to see what could be showing up there. Most of what I found related to peritoneal or some other kind of gynecological cancer. Since this is my biggest fear — way scarier to me than breast cancer — I emailed Dr. McAuliffe immediately to ask if there’s any chance that the abdominal “hot spot” could be peritoneal cancer. Her response was reassuring, if vague:

the area is superficial, right under the skin, not deep enough to be peritoneal ca

Ok, so what is it? – and why do they want to biopsy this little piece of skin on my abdomen if it’s so “superficial?” What gives me a bit of pause, however, is the phrase in the PET report, “subtle nodular thickening.” There is not one thing I read about this that did not scare the shit out of me. For instance:

Essentially all common causes of nodular pleural thickening are malignant (Radiopaedia).

From what I gather, it’s pretty common in people with mesothelioma from asbestos exposure, but can arise from a number of other issues (including breast cancer). This article makes me feel a bit better about it, since it explains that pleural thickening can often be confused with an effusion, which I gather is just a build up of fluid. It might make sense that there would be fluid in that space under the abdominal scar if, perhaps, that area is infected again. Of course, other research I’ve read explains that an effusion can also signal cancer. So, back to biopsy we go.

I’m also still trying to figure out the whole “FDG uptake” and “SUV” thing, but that is more confusing than the other stuff I’ve been able to decipher. Tips are always appreciated!

For my next trick

And now, for shits and giggles, I’m going to predict the stage of my cancer. Now that I’ve had the PET scan and I’m pretty sure there’s no cancer beyond my breast, that helps me complete most of the chart I’ve been filling out over the last few weeks. And, using Komen’s handy Stages of Breast Cancer table, I think I’m able to figure out where my cancer would be staged.

In this PDF, I’ve copied Komen’s chart and shaded in spaces that match up with my current diagnosis. Much depends on the first column; I know T2 because my tumor size is more than 2cm but less than 5cm (although a lot of the information I have found on where a 2cm tumor would be staged is contradictory – some would stage it as 1; some would stage it as 2); but I don’t know node involvement or metastasis. Based on everything else I know, I think I’m looking at stage 1B, 2A, or 2B. Because the PET scan seemed to be clear (according to the tech in the room), I am going to assume no lymph involvement or metastasis, so my guess is that my cancer is stage 1B. Is that my final answer? I dunno – I might have to phone a friend.

PET Scan

I had the PET scan yesterday. I won’t get into detail about the 2hr process; it was relatively easy if you’ve been through a CT or MRI (and it involved a 45 minute nap!). After the initial prep, the technologist took me into the room with the machine. It seemed like she’d read my entire medical record because she knew I was BRCA positive. So was she; she told me a whole story about her sister who’d had lots of surgery (mastectomy, hysterectomy, oophorectomy, etc) and has refused to go to the doctor since then. “Should she go?” she asked me. “I mean, look at you. You did all of that, and it came back. Did you go to the doctor?” “Well,” I said, “yeah, I want to the doctor every year for a check-up. But the doctor didn’t catch this. I found a lump while I was in the shower, just like you see in the movies.” After saying that, I felt a little irresponsible and mumbled, “Still, seems like it would be a good idea to go to a doctor?”

The scan didn’t take long, and when she slid me out of the machine, I asked if she saw anything. She shook her head and said, “just in that area of the breast.” A doctor will still need to read the images, but I feel pretty confident that this woman knows what she’s talking about. Most techs either tell you what they see when it’s nothing, or when they see something or it’s too advanced for them to really know what to look for, they say, “you’ll have to wait for the doctors report.” I’m trying not to be too optimistic – nothin’ like having your hopes and dreams for a cancer-free body smashed to bits (and I already did that once this month) – but I am feeling like maybe this won’t be as bad as I imagined.