RE:RE:RE:RE:JFM - How is your 2024 starting off?For anyone else who has been reading our exchange of posts, I would like to reiterate what JFM has said - be persistent and take nothing for granted. As patients, we don't often know what we don't know but if you keep asking questions, sometimes you are blessed to be able to find out something you would not have ever thought of. Or you might cause your doctor to consider something they otherwise would not have thought of. So, even in our ignorance of the medical issues at play, we may be able to get things moving in the right direction. Below is a summation of my experiences with the health care system here in the US which might be helpful info, as was JFM's info, for others reading this. Of course, everyone's experience is going to be different but maybe you will pick up some nugget of info that would prove helpful. Consider my situation where I had a 99% blocked right artery and here were the test results I got - there was nothing in most of the tests which indicated that and the one test that did show there was a problem was misread by one of two doctors who reviewed the test's results:
1.) A few years back having turned 60 and knowing my family's heart disease issues I paid to get a coronary calcium test to give me some idea of whether of what my coronary arteries looked like. If I recall correctly, the scale of the scores you get from that test go from 0 to 400 (with 0 being the best score) and I got a 4. Now, that sounds really good and it was a very good score but if I recall correctly it put me in a risk range based on my age of something like the lower 25% of people getting that test. Now, if I had 99% blockage just 7 weeks ago, I must have been fairly clogged up already several years back. So, that test gave a false reading.
2.) A little over a year ago, again being persistent in paying attention to my heart health, I went to my family doctor because I had a minor sensation in the area of my stomach after going 4 miles or more on my treadmill at a 4% grade and at a 3.7 MPH pace. The doctor gave me an EKG, which looked fine, and sent me home. An EKG, however, is mostly useful in telling you whether you already had a heart attack and less useful in predicting one. I should have been sent for a stress test then but I didn't know enough to press the issue and I felt otherwise fine. I can't be sure if that sensation I felt was heart related, it may have just been acid reflux from all the bouncing on the treadmill while walking on it. But, I should have asked what the next test I should get was if I wanted to be sure it was not my heart. Of course I would have needed to pay for it myself, most likely but they would have most likely told me to get a stress test and it only cost my insurer $85 when I did end up getting one last October. If they are that cheap, since heart disease remains the number one killer, they should be routinely given like colonoscopies are here in the US for people over 50.
Once I felt the pretty minor, short-lived and infrequent tightness in my chest while at rest (never when exercising or doing other things that put stress on my heart) this past Summer, my doctor did the right thing and ordered a Echocardiogram and a stress test despite the fact that I am in overall good shape, have never had bad cholesterol test results (I was not on any medications at all prior to this) and didn't have any pain while exercising.
3.) Echocardiogram - (I think that is the right name for the test - basically it tests the structure of the heart - are all the valves functioning properly, etc.) - I passed that one with no issues observed but I do not believe it is meant to find any blockage in the arteries.
4.) Stress Test - This test showed "mild ischemia" or an indication some portion of the heart muscle was not receiving enough oxygen while under stress. But I also had no problem completing the test, was not winded at the end of it and felt no pain whatsoever during or after the test. My cardiologist said the fact that I had no pain and easily completed the test was likely the most important outcome and was the best predictor of my heart's overall health. Still, she ordered the next test in the progression, a nuclear stress test.
5.) Nuclear Stress Test - This is where they inject radioactive dye into your bloodstream and then take scans to see where it ends up as that helps reveal if there is a problem. Again, it showed only mild ischemia. I had the same positive experience on the treadmill with no pain and not losing my breath even though I had to go a bit longer than normal as they were a little late in getting the dye injected into me.
My cardiologist was not a very communicative one. I had to really work hard to get info out of her and still was left frustrated by the lack of detail she would share. Nevertheless, she persisted in searching for any trouble and suggested a heart catheterization to check the situation out with the best possible tool available. I was all for that as I wanted to know what this mild ischemia was all about. Unfortunately, my health insurer, one of the main ones in the US, rejected covering this test saying I was not unhealthy enough to justify it and I should just be prescribed drugs to deal with whatever small issue there may be. My cardiologist then pivoted to a cat scan of the heart again using a dye to be able to track how well the blood was flowing through the arteries. Once again, the insurance company refused to cover the test because they have a protocol they follow in approving such things and the evidence from my tests and bloodwork, etc. did not justify it. Now, I suspect they were justified in holding this opinion so I was not too upset about it but they did have a cardiologist looking at the same info and wanting to proceed to more tests. I did wonder whether the cardiologist was over reacting or had some economic benefit from ordering additional tests but my personal perspective was that I wanted to have the best possible info about my heart so I said I would personally pay for the what they call a "CTA with contrast" test.
I was on my own at this point and had to find out who would do such a test on me and when. It was not too difficult to sort that out. The first place I called said they did not have an opening until mid-December (about 5 weeks away) and would charge what would amount to over $1,500 for the test. The second hospital I called, one not affiliated with my cardiologists practice, could do it much sooner and for only $350. So, I signed up for that test and got it at the end of November.
For this test to have the best chance of success, your heart rate needs to be about 60. When I went in for the test, I was nervous (silly me - the test is short and is not a difficult one at all) so my heart rate was elevated. There was a point while prepping for the test that it almost got canceled. The pluses and minuses of proceeding were being discussed with the attending nurse but I encouraged her to press on, give me some more meds to slow the heart rate down and get the test done. That turned out to be a very important decision! Without this test I may very well no longer be here. Had a not persisted at this key moment, I may never have returned to get this key test.
Normally following such a test, you expect to get the results within 24 hours. No such luck in my situation. Calls to the hospital were ineffective in getting the results read. My cardiologist said go to the hospital, get a disk with the results on it and bring it to her practice so they can read it. This too was a key development as the doctor at her practice who read the results read them correctly and saw that there was a significant blockage of the right coronary artery. He communicated with the insurance company and they finally approved me getting a heart catheterization procedure. The hospital that did the test finally got around to reading the results themselves after the heart catheterization had already been scheduled and approved by the insurance company and their reading was more benign than what my doctor saw in the results. Now, I never got a formal report from the doctor who read it the scan results correctly so I don't know exactly what he saw, which is irritating. But he clearly was able to convince my insurance company tyhat intervention was required and that was key. If that hospital had been timely in producing their incorrect result, I may never have had the heart catheterization and may have soon thereafter had a massive heart attack or possibly even died. So, I have never been so happy about delayed medical test results! But I would also like to have gotten a formal report from the doctor who read the results correctly.
Now during this whole adventure of navigating the health care system I still had episodes of minor chest tightness but it was happening with slightly greater frequency than previously. I also had other minor pains that I could not be sure if they were psychosomatic or real. My advice to those reading this is treat any pain as real until proven otherwise. I suspect I was quite blessed to have made it to the heart catheterization without having an actual heart attack and I should have probably taken the nitroglycerin pills they gave me when incidents like this occurred. Of course, they did not even give me a prescription for those pills until very late in the game, which was an oversight itself compounded by me not taking them once I got them.
Now, another thing that happened that shows you really need to take control of this stuff as best you can was that I had to mow my lawn one last time before winter. I asked the cardiologist if that was a sensible thing to do. She said she thought it should be fine. Did she ask me if I had a riding mower? Did she ask how big a lawn I had or how long it took me to mow it? Did she ask if the yard had a lot of hills? NO SHE DID NOT! She just said go ahead and mow it. I did now it and it less than a quarter acre and I have a self-propelled push mower and the yard is not very hilly. So, I survived that but know that these doctors are really rushed and are not always going to ask the right questions or give the best advice. You need to do your best to think of everything you possibly can and evaluate it on your own as best you can. My cardiologist just wanted to get off the phone anytime I had such questions so I was largely on my own and not sure if I was getting thoughtful responses from her when I was able to get a response. I would maybe get 3-5 minutes on a phone call with her and since my life was hanging in the balance, that sure seemed inadequate.
When I got the what proved to be too benign reading of my CTA scan from the hospital that had not gotten the test read in a timely manner, I asked ChatGPT to evaluate it for me. While ChatGPT was evaluating a bad reading of the test, I felt I got more understandable quality info from it than from other sources, so it might be worth checking ChatGPT if anyone has test results they are looking for a second opinion on.
So, the point of sharing all this is to hopefully help someone who will be facing a health issue in the future to realize how important it is to be very involved in whatever care you or someone you love is getting. There are so many opportunities for things to go astray and you need to do your best to keep things moving forward. There are great tests that can really help, as was the case with JFM, but you need to have an attitude of pressing forward to get the clearest picture of your situation as the system can easily fail you for a variety of reasons no matter what country or health care system you are in. Be as proactive as you can be without undermining your relationship with your doctor and maybe even risking that at what could prove to be key moments in your care.
If this long diatribe helps only one person, it will have been well worth sharing it. JFM inspired me to lay it all out in even greater detail so thanks to him if either or both of our experiences does end up conveying some nugget of wisdom that helps someone in the future.
jfm1330 wrote: I am glad that finally a doctor was competent enough to save you. If you remember my story, I was not that lucky and I am still angry at myself for not seeking a second opinion when the doctor inadvenrtently discovered on a CT scan of my abdomen, done to assess an acute diverticulitis, that I had a tumour outside my small bowel. After a second CT scan six months later, the doctor, a surgeon, told me it was a benign tumor and not to worry about that. What he did not tell me at the time is that with both CT scans that I passed, the radiologist that read them wrote in their reports that it could be malign or benign. That was in 2008 and the tumor was the size of a golf ball. When I got the real diagnosis in 2016, it was metastasized in the liver and the bones, and I got the primary tumor removed in 2019, and it was still the size of a golf ball.
As you know, here in Canada we have a public healthcare system, and I thought in 2008 that if every patient would go for a second opinion for everything a doctor would tell them, the system would not be able to take it. I still think it's true, but in the case of something looking like a tumor, I should definitely have consulted an oncologist. But my family doctor also failed me, as everybody around me. Nobody then told me my reasoning was wrong. When my family doctor learned about my cancer, he looked like he felt guilty as hell. The enraging thing is that there was a scan since 1999 specifically designed to detect neuroencocrine cancers like mine. It shows nothing else but that type of cancer, and the radiologists and the surgeon were too incompetent about neuroendocrine cancers to send me passing this type of scan (Octeroscan).
So it is a decision that I deeply regret since 2016. I thought about suing the doctor, and finally decided it would be too stressful, not knowing how long I would live and going through many years thinking about that. Medical errors are a major cause of deaths. So I am happy that in your case you made a better decision then me and that somebody read your scan properly, but at least you had some symptoms. In my case this type of cancer develops so slowly in the first few years, that in 2008, I had no symptoms related to it. I read afterward that most of the patients that are cured from that type of cancers are those having a CT scan for another reason, and it allows doctors to see the tumor early in its development and have it removed by surgery before matastasis. I was lucky to get that CT scan for something else. If the doctor would have been competent, He would have cured me back in 2008 just by removing the primary tumor. It was not metastasized then.
If somebody reads our exchange, I can only tell you to be proactive with the medical system, either public here in Canada, or private in the US. But one thing I can say, is that without our public healthcare system, I would be dead now. I was out of work in 2016, and I was covered only because of our system. Here it's hard to enter into the system, but once you are diagnosed, treatments are very good. My oncologist is really very good. Again. Happy that you made the right decision and that they diagnosed you in time. Now take more care of yourself, diet exercize and so on. We have an expression in french that says: "aide toi, le ciel t'aidera". The translation in english does not sound as good, but it is something like "help yourself and heaven will help you". Again. Happy for you.
SPCEO1 wrote: You have successfully fought this beast of cancer off for so many years, I am going to assume you will continue to be able to do so. At the same time, I can imagine how wearying and stressful the never-ending battle must be. As you are now going down treatment paths that are more difficult, it must be even harder. Kudo's to you for handling it as well as you have for as long as you have and not giving up.
As you know, I am a Christian who believes Jesus paid my price for my sins (and everyones who express faith in Him) and will welcome me into heaven whenever my time here on earth is up. So, the prospect of death, while always daunting, is not only less concerning but actually hopeful. Whether it is cancer or something else, we all know our days here on earth are numbered. I really hope when your time comes it is the result of something other than cancer just so you can know you did not let it win this battle you have valiantly engaged in for so long! For me, it is good to know there is an eternity in heaven with a loving God to look forward to. While admittedly I know little about what your religious beliefs may or may not be, given your scientific and educated background, I can imagine the odds of you being a Christian are not high. Still, I would still like to share with you some excellent Christian bible teaching from a now deceased pastor by the name of Derek Prince. Here is a link to a long list of topics he has taught on - you need to page down a little to get the alphabetical list of topics. Wherever you might be on the spiritual spectrum, I would be surprised if you did not find hope in some of these teachings. One of these is entitled "God's Medicine Bottle" wherein Price describes his own battle with an intractable health problem while he served in the British army in WW II in the deserts of North Africa - the worst place he could be for his condition. But there are numerous teachings here which might bless you. There is little better I can offer you over this website than this outstanding teaching and I hope you will be blessed by it.
https://www.derekprince.com/radio
As for me, I recently was blessed to very narrowly dodge a major health problem. My father passed away from his second heart attack 37 years ago and my older brother has had some heart issues too, so I have always tried to be vigilant in keeping tabs on my heart. While I had very little evidence that something might be amiss, I still went to my doctor at the end of September and shared with him that I had some very slight, very infrequent tightness in my right pectoral muscle. He ordered a stress test and it showed I had "mild ischemia". That led to a nuclear stress test which showed the same mild ischemia. Now, I otherwise aced the stress tests - no pain after going a full 12-13 minutes. I was not huffing and puffing or sweating or in any distress at all. Furthermore, I had been engaging in various forms of exercise recently including riding my bike on a local trail that ended with a long uphill climb which I attacked in the bike's highest gear. I never had any pain or shortness of breath after that - I actually felt really good. The few incidences of slight tightness I felt occured when I was at rest. My cardiologist thought it would be good to have a heart catheterization to check things out but my health insurance company said given my stress test and other results, they would not approve a heart cathertization! So, my doctor pivoted to a cat scan (CTA with contrast) of my heart so they could get a better read of whether there was a need for a heart catheterization but the insurance company shot that down as well. Very much wanting to know more about this mild ischemia, I said I would pay for the cat scan myself. The hospital that performed the cat scan somehow failed to read the results in a timely fashion, so I went to the hospital, picked up the disc of the results and brought them to my doctor to read. That turned out to be key as the hospital finally got around to reading the results but read them wrong. Fortunately, before those poorly interpreted results were available, my doctor had read the test correctly and saw that I had at least one issue that needed to be addressed and was able to convince the insurance company to go ahead and approve the heart catheterization. I had the procedure on December 11th and that is when they discovered my right coronary artery was 99% blocked! The doctor who performed the procedure of placing a stent to open the artery back up said I was probably just a few weeks away from a massive heart attack. I also got two stents placed in the widowmaker artery which was 70-80% blocked. As you can see from the above there were a lot of places along this two and a half month journey through the US healthcare system where things could easily have taken a bad turn for me and I may have ruined our family's Christmas, if not a lot more, but I am happy to give credit to the Lord for making sure that did not happen. So, despite THTX's ongoing travails, I am in a very thankful mood! It also means I will likely be here for the imminent birth of our first grandchild (our daughter is 4 days past her due date right now).
I was blessed by the right decisions being made at the right time at several key points along the way and I have no doubt the Lord helped that happen. You, however, seem more in need of an outright miracle. The good news is miracles still do happen and I will continue to pray that you will be miraculously healed. And I encourage any other Christians reading this to pray likewise for JFM as Jesus made it very clear that faith was required for a miracle to occur. The more faith we can muster the greater the probability JFM can be healed in a miraculous way. Perhaps the treatment options still at your disposal JFM will be sufficient to extend your life, but since they sound onerous, I am going to continue to pray for that miracle that would defeat your cancer quickly and permanently.
jfm1330 wrote: Hi SPCEO
Thanks for caring about my situation. I am still on the same chemo that I started last March. It's hard. Tumor load was stable at the last Ga68 scan in October, but nonetheless, hormones markers in the blood are slowly going up. I am waiting for news from my doctors to have what they call hepatic arterial embolization. That's a procedure to block, with smalls polymer beads, the small hepatic arteries irrigating tumors in the liver in order to kill them. it won't cure the cancer, but it could decrease my tumor load in the liver and reduce the hormones secreted by neuroendocrine cancer cells. But the cancer is also in the bones and a few lymphatic nodes.
Again, my cancer is incurable, all I can hope for is to live with it as long as possible as some kind of chronic disease involving a sharp decrease in physical capacities, and life quality, because of the cancer itself, but also because of the side effects of the chemo and other treatments. This chemoembolization procedure from what I read is quite rough for the patient. When it works it's worth it, but you are in for a rough month after the procedure. So it's not easy and I am not talking about the psychological stress, not knowing when this thing will enter the final phase. It can be in a year or if I am lucky with new treatments, it could be in 10 years. I still have a few options, but none is a cure, or guaranteed to work, and none is easy.
So thanks again for caring about me and I hope things are fine for you.
SPCEO1 wrote: I am hopeful you are winning your health battle and that 2024 marks a turn that leads to restored health for you. Keep up the good fight!