I started this post to give an update on my Lynch Syndrome or HNPCC (Hereditary nonpolyposis colorectal cancer) after all the testing I’ve been through, but with it being Thanksgiving this week I thought it would combine well with what I’m thankful for.
After a whole slew of tests over the last couple of months, I’m thankful to finally be done with blood draws, MRI and CT scans, and doctor’s visits, except for one follow-up visit to my GI (gastrointestinal) doctor the week after Thanksgiving (the soonest my schedule and his availability coincided).
My first appointment was with my primary care physician, who’d had a chance to look over my genetic results for a week before seeing her. She liked the fact that I already had appointments scheduled with a GI doc, an OB/Gyn, and a urologist, but she also referred me to an oncologist. I thought that was a little strange since I don’t have cancer, but figured it was perhaps to establish a relationship in case I did need to be seen as a patient.
My second appointment was with an OB/Gyn doc. I’m thankful I had a hysterectomy (because of endometriosis) over a decade ago, but my right ovary, the good one, was left intact to provide the necessary hormones. I wanted to discuss taking out that remaining ovary, since the chance of me getting ovarian cancer with the MSH6 mutation is 10-30x greater than the general population (which is less than 1%). It’s not like I need it anymore, anyway.
My OB/Gyn doc didn’t have a chance to look over the genetic results before I saw her as I just took a copy with me. At first, she seemed a little reluctant to do an oophorectomy (remove my ovary), especially after the sonogram done in the office showed it to be fine and since I didn’t have the BRCA1 or 2 gene mutation (with which there’s a 30-70% chance of getting ovarian cancer).
I think it was just that she wasn’t as familiar with Lynch syndrome since it’s more readily associated with colorectal cancers, but after having a chance to look at the paperwork I took her, I’m thankful she agreed it would be a good idea. I left knowing the office would call me back, after being in touch with my insurance company, to schedule the surgery date, which will be early in the new year.
My third appointment was with the gastroenterologist and he knew right away what the MSH6 mutation meant. With that result and the family history, especially my mum dying of pancreatic cancer, I’m thankful he wanted to be proactive, which is what I wanted also. He ordered general blood work (complete blood count and chemistry panel) as well as tests for pancreatic enzymes (lipase, amylase) and cancer antigens for the pancreas (CA 19-9) and ovary (CA 125).
Pancreatic and ovarian cancers are called silent cancers, which means they often aren’t detected until it’s too late, so I’m very thankful he especially focused on those.
We also arranged for me to have a colonoscopy and endoscopy, which he would do, and scheduled a MRI scan of my brain and of the pancreas, liver, gallbladder, and bile ducts, with and without contrast (MRCP = Magnetic Resonance CholangioPancreatography). My gallbladder had already been removed about 10 years ago when it caused me a lot of nausea and abdominal pain, after it decided to get lazy on me and only work at 11% of its potential.
I had all those tests done before my fourth doctor’s appointment, which was with the urologist. Happy I’d come to see her after looking at the genetic results, she was genuinely concerned, especially since I was still excreting a small amount of blood in my urine after seeing her for that 18 months ago. She sent my urine sample off to Pathology, once again, to look for any malignant cells. I’m thankful she wanted to be proactive and that this time, because kidney cancer is often asymptomatic and slow-growing, she ordered a complete abdominal and pelvic CT scan with and without contrast, to get a better picture of my kidneys, adrenal glands (which sit on top of the kidneys), ureters, and bladder.
My fifth doctor’s appointment was with the oncologist. He said he found my case very interesting, especially knowing about the genetic mutation and how it has shown up so clearly in my mum’s and sister’s cancer histories. He seemed impressed with all I’d already organized and done, but he planned to send a letter to my GI doc recommending an endoscopic ultrasound be done. He said that, because the pancreas hides behind the stomach, it’s even better than the MRCP at getting a more complete picture of the entire organ, not just the head of it, and also of the surrounding area.
Upon my request, he okayed for it to wait till the new year. I’m thankful for health insurance, but our medical expenses had already long since exceeded our $1500 medical reimbursement amount for this year. Next year, we’ll have a health savings account with $1000 contributed by my employer on top of the maximum amount ($3450) I’ll be putting in there.
My oncologist’s job, at this point, was to coordinate all the other doctors, making sure they each ordered the appropriate tests and scans every year and that everyone was kept up to date with all the results. I’m thankful he’s going to take that job over from me 🙂.
All the tests so far have come back negative and normal, so I’m very thankful for that. The GI doc did say I had mild inflammation and erosion in my stomach, though, which is probably what causes my frequent bouts of nausea. He removed biopsies from there and the upper part of the small intestine (duodenum), plus a small polyp from my colon, of which I haven’t heard any results yet. In faith, I’m going to think positive and assume they were all benign since he didn’t rush me back into his office, but I’ll find out for sure next week what, if anything, they did show.
So many blessings! Let me count them, one by one 🤗
I’m thankful for good health at the moment, with my fibromyalgia under control, and all my medical tests coming back normal.
I’m thankful that I live in a country where quality medical care is available and attainable, and for the freedom to choose my medical providers.
I’m thankful to have insurance that paid for most of the medical costs lately and for the financial resources to pay the balance without having to scrimp and watch every penny.
I’m thankful for the freedom in this country—freedom from oppression, freedom of speech, freedom of religion—and for the brave men and women who have fought so hard, and sometimes given their life, to retain those freedoms and help us feel safe.
I’m thankful for this wonderful, low-stress job that allows me to write and helps provide a roof over my head, enough food to eat, clothes on my back, and forty pairs of shoes in my closet (for real, I counted them)—those things that are so easy to take for granted by those of us who’ve never had to be without them.
I’m thankful for a loving, supportive husband who’s traipsed with me to the many medical appointments lately, who shows his love in so many little ways, and who’s stuck with me for so many years, through thick and thin.
I’m thankful for my entire family—including those who are not related by blood but still count as “family” in one way or another (such as my blog readers😊)—and to be able to share the holidays with some of them.
I’m thankful for the beauty of God’s amazing creations—eyes to see them, ears to hear them, skin to feel them, a nose to smell them, and a sense of taste to experience all the awesome flavors.
I’m thankful for the way God orchestrated my circumstances so I could meet Him and that He pursued me until I finally realized my need for Him.
I’m thankful for Jesus, and that through His death and resurrection, He saved me from my sins—past, present, and future—and pulled me out of a meaningless life of self-destruction.
Happy Thanksgiving, everyone!