Yes, all my current providers, except my physical therapist are on electronic medical records, as is the lab that does our blood tests. We can read and highlight whatever we believe should be addressed if we have concerns.
It’s easier for our providers to have an extra set of eyes looking out for issues that are trending the wrong way or of potential concern.
I caught my elevated liver enzymes in blood testing, so my MD agreed I should stop the antibiotic, and fortunately my liver enzymes returned to normal.
My internist was late to switch to electronic medical records but retired in 2016 and by then I had transitioned to a younger provider who works well with my lung doc.
I haven’t read everything but I have been to a genetic counselor.
One of my kids has a known genetic mutation and needed to have her parents tested for their embryos.
It wasn’t easy. We needed to call, fill out paperwork and be accepted for genetic testing. We had an interview and with the history of cancer, my husband was allowed to be tested. I was not but those pesky embryos needed to be tested from both maternal grandparents.
Our local genetic counselor has to talk to the genetic embryologist to find out why I needed to be tested. I finally was.
As expected, the mutation goes through my husband. Where he got it is anyone’s guess because he’s the only one (other than our other child who is negative) who will test.
But now my husband has a higher chance of pancreatic cancer. And should have screening every year. Except that although it was pre approved, our insurance denied parts of the screening. And we really don’t have $10,000 extra a year after paying our $7000 deductible to have the tests.
Endoscopy will see any spots on the pancreas so that’s one year and the other is a CAT scan. The CAT scan last year was for an unrelated issue so covered.
Since they didn’t find anything on the endoscopy, they aren’t covering the physician or anesthesiologist bills. They did cover the hospital this year.
Maybe once my husband goes on Medicare, it will be covered again. We will have to investigate that. But for now, we will decline the precautionary measures.
Take a look at this article where physicians and researchers at MD Anderson are looking into ways to hopefully detect pancreatic cancer early.
The main blood test they mention is CA19-9. If your doctor won’t order it, you can order it yourself, without your doctor, for about $44 from ulta lab tests. (If you sign up with them they will send you discount codes for about 20 percent off). They also have screenings for other cancer markers.
Great information from @MMRose here. Cheap test, no referral from your doctor required, no insurance needed. Well worth the $44! Me and my husband will definitely get this done soon.
I’m not sure quite what to take from that, except that most often, asymptomatic patients don’t test positive for pancreatic cancer. Unless they do. Even if only 1 in 20,000 people discover they have pancreatic cancer soon enough to treat it, that easily seems worth it to me. Especially with a very inexpensive test.
Thanks for that info. I have some family cancer risk that makes me a bit uneasy, and I have one adopted parent. I’m pretty good at assessing relative risk and I mostly decline any unnecessary testing for myself or my family members.
I had biliary colic pain for years, and my strong hunch was gallbladder. Ultrasounds showed “sludge” but no large stones, so I lived with excruciating bouts of biliary pain for >10 years. Finally I got a more conclusive ultrasound that showed small stones and the surgeon told me I needed urgent surgery at a VERY inconvenient time because he was concerned about imminent pancreatitis.
I got the urgent surgery and was admitted due to complications (was supposed to be outpatient). He said “I can see why you were in such pain. You’re lucky I’m an expert in intestinal resection because I had to chisel your gallbladder off your transverse colon”.
That was 15 years ago and it fixed the problem. But in the last year I’ve had frequent bouts of biliary pain (most days), exactly like gallbladder pain, but less intense. I mentioned it at my last checkup and my doc and I both sort of shrugged since developing stones so far after surgery is really rare and there’s no other likely causes.
But it’s been nagging at me. I have a friend (also had no gallbladder) who recently experienced the same and I’m sad to say they discovered the worst and she didn’t last long.
I also have a young family member with biliary pain that I had a bad feeling about. I was pushing hard but the parents were subjected to an absolutely infuriating runaround to even get an initial ultrasound. I had to move heaven and earth for months to obtain proper diagnostics. That person has been through the wringer since then and is now on a liver transplant list.
I acknowledge that I’m on edge, but I’ve just scheduled a panel for myself. I think I’ve just scheduled some peace of mind… and it will be well worth it.
I swear a lot of problems detected early are those that were detected during imaging scans done for a different reason. BTDT. Thankfully, not cancer, but nasty enough that it really affected my quality of life until it was diagnosed during an unrelated doc visit/scan and then dealt with. Now a relative who has had an X-ray for a suspected pneumonia is being monitored for nodules that were discovered on the follow up CT scan. Thank goodness for radiologists who pay attention to all potential problems.
Has anyone looked at doing the Ezra full body MRI scan? My husband was hearing about it on our local news show today.
Their website says: “ Get your Ezra Full Body MRI Scan — it only takes one hour and screens for cancer in up to 13 organs. We partner with the best imaging centers and radiologists across the country to give you a seamless experience. It looks like it covers the major organs, including brain and pancreas, that concern me in particular.
To me, a downside is that it is just a snapshot in time. So is the Galleri test, but one costs $2000 and the other around $800. Neither is a one time and you’re done situation.
Every test is a snapshot in time. IMO, MRI is a well established procedure for detecting certain issues. Some, if not the majority of the markers detected by Galleri, have not been validated at all. Having had personal experience with MRI detecting stuff I was not aware of but having symptoms, I would lean that way.
I agree with @BunsenBurner, every test is a snapshot in time, there’s no way to predict the future. I think the idea is that most cancers are slow growing, so if you catch it early before you have symptoms, you have a much better chance of survival. And then you continue to test at certain intervals afterwards. I don’t really care much about a $1200 difference in price, I’m more concerned about what actually gives useful data.
