A Potpourri of Updates

Often my posts cover just one topic, but this one will be all over the place. Buckle up!

Scans:

I had an MRI (with and without contrast) plus a DOTATATE last week. It was the first time I have had both at the same time, and it was a very long, loud hour! I’m extremely grateful I’m not claustrophobic. Afterwards MyChart told me that although the tumors have not changed size since the last scan, they are increasing expression of receptors and hormones. That news certainly made me have a week of intense scanxiety!!! Yesterday I met with my oncologist to discuss the results, and he told me that when NETs increase receptor and hormone activity, that actually means my ongoing monthly Lanreotide shots have been keeping tumor growth in check. Whew! Fantastic news!

Tumors:

In the liver I currently have ten stable tumors that can be seen on imaging, the biggest of which is 2.2 cm. I also have a few small tumors in my mesenteric and ileocolic lymph nodes. I also have one spot in my right upper arm bone that shows cancer activity, but it hasn’t changed in a very long time, so although technically the cancer is probably “in my bones” it’s a minor worry. In late 2024 I had few spots show up in the spleen and pancreas, but they didn’t show up in this most recent DOTATATE. So they either went away (!!) or just aren’t showing up well right now. Unfortunately NETs sometimes hide from imaging, as I found in 2022 during my Big Surgery, during which the surgeon found many more tumors than expected only after opening me up.

Spleen:

My spleen is still a bloated 16 cm, which is about three times larger than normal, and is always very uncomfortable and sometimes downright painful. Unfortunately pain relievers don’t help much, because this is mostly a “tight real estate in the abdomen” issue. Although my platelet count is still low due to the splenomegaly, when my oncologist eventually decides it’s time for PRRT, the plan is to do one round, and then in the 8 week gap before the next round, re-evaluate. At that point if needed we will do either an embolization or splenectomy.

Adhesions:

While talking of a possible splenectomy, we also discussed adhesions.

Mini adhesions lesson: All the surfaces in the abdomen are normally covered with a kind of slippery, Saran Wrap-like surface called “serosa”. Anywhere serosa gets cut, cauterized, or even just touched with a gloved hand during a minor otherwise successful surgery, often it can get some local inflammation which makes the spot sticky and eventually leads to adhesions. These are like scar tissue that sticks your organs to themselves, each other, and/or to abdominal walls. If pre-adhesion inflamed sticky spots are noticed at the time of surgery they can be removed, but it is very, very easy in that repair process, or during adhesion removal down the road, to create little tears. If any tears in the bowel are not immediately and successfully repaired, persistent leaks may happen. Even with pinhole-size leaks from the bowel, literal intestinal contents/poop will escape into the abdominal cavity. This easily causes infection, resulting in either terrible generalized abdominal infection (peritonitis), local abscesses (which are very hard to clear even with weeks of antibiotics), or fistulas (little thread-like tunnels that drain watery poop on and on and on) through the skin or into the bladder or goodness knows where.*

My oncologist said some people are more prone to adhesions than others, and scientists don’t know why. We pulled up my 2022 surgery report to see if any adhesions had been noted (having been possibly created as I healed from my 2015 abdominal surgery). Some were indeed noted, but it wasn’t a major concern at that time. Of course, after my Big Surgery in 2022, I probably now have adhesions all over the place. Since they don’t show up on imaging, I’ll never know for sure until I go in for surgery again. But it might help explain my constant abdominal discomfort and sensitivity. In any case, adhesions will be a major part of the conversation when deciding when it’s time to send me back in for surgery…

Iron:

My ferritin has been chronically low, so my oncologist ordered an iron IV. Apparently these are usually a “one dose” situation, and possibly can fix iron levels for years if not your entire lifetime! Crazy that this is such a long-term solution! Fingers crossed this will help with my fatigue as well.

Nutritionist:

My oncologist wants me to see a nutritionist as part of the ongoing struggle to manage my chronic diarrhea. Surprisingly, out of all the many types of providers I’ve visited since my cancer journey started 11 years ago, I’ve never seen that kind! Last fall I did a bunch of appointments with a naturopath to see if that could be helpful to me, and although I did get a recommendation for a probiotic that I like, I didn’t get much else that was useful. So, I’m looking forward to a nutritionist appointment. My oncologist thinks they are going to order a “fecal elastase test“, and possibly prescribe pancreatic enzymes.

Hormones:

My tumors release a whole cocktail of hormones, and likely serotonin is a big part of that. It would be fun if this serotonin was able to get into my brain and make me deliriously happy, but unfortunately it doesn’t work that way. One way to measure these hormones is with a urine test called 5-HIAA. I’ve done it a few times in the past couple of years, but not on the regular. Going forward we’re going to add it to our “every six months” plan. My flushings have been slowly getting worse and more frequent, to the point that sometimes my nose or the back of my throat burns and throbs. This is highly unpleasant, but fortunately last only a couple of minutes. If you happen to see my whole body turn pink all of a sudden, my tumors are having a party!

Additional hormone update: under the recommendation of my gynecologist, I recently added a small dose topical testosterone gel to my post-hysterectomy Hormone Replacement Therapy regimen. So far results have been good!

Heart:

I have no updates; hooray! If I don’t have any new Carcinoid Heart Disease symptoms, I’ll have another echocardiogram in a year or so.

Fatigue:

It’s hard to describe my fatigue. It’s unpredictable. It can be extreme but also mild. Sometimes it’s triggered by exercise or exertion, but sometimes it creeps up for no reason at all. Sometimes I’m just standing around and then suddenly I am completely drained and need to lay down and do deep breathing. Sometimes my fatigue is accompanied by a grayish “fainting” feeling, but sometimes not. Often fatigue hits me hard after a bout of diarrhea or a flushing, but not always.

There are still a lot of unknowns with my rare cancer, but here is my care team’s best guess as to what is going on: I have many stressors in my body. My NETs, which are hormonally active, can drain energy through their inflammation and hormone effects, while chronic diarrhea leads to sudden fluid and electrolyte shifts that trigger weakness. On top of those, sometimes I experience low blood sugar, low iron stores, and/or malabsorption, all of which reduce my energy reserve further and make crashes more frequent. In addition, my blood pressure has always been low (my average is ~ 86 over 57), which technically is a good thing but it also means my threshold for feeling faint is much closer than it is for most people.

When all these factors line up on the same day, it’s a bad time. I work really hard to keep my fatigue from impacting those around me; I don’t ever want to be a burden. I’m grateful for my lovely bed and soft couch, which are fantastic places to crash out!

Sidenote: I still grieve the active, physically powerful, Working Career Mom, super-stamina True Grit person I used to be before my Big Surgery in 2022. I miss her.

Future Care Plan:

Continue the monthly Lanreotide shots. Get iron via an IV. Talk to a nutritionist and take some new tests. In six months I will have another MRI, another 5-HIAA test, and an appointment with my oncologist. I continue to walk on my treadmill most mornings, even if I only have the energy for 15 minutes at a gentle pace. I press on; the story isn’t over!

And as always, a big thank you to everyone who inquires about my scans, asks me how my soul is, gives me extra hugs, or just sends me a little “thinking of you” text out of the blue. Talking about health stuff is very difficult for many people in my orbit, and I know cancer is extra scary. Much love and appreciation to my entire support system!

* Shout out to my doctor uncle for the straight talk about adhesions! I cribbed much of this description from an email he sent me.