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Accurately Diagnosing the Soft Tissue Sarcoma
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- Опубліковано 4 вер 2024
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Shared with the Sarcoma Alliance FB support group
I generally agree with the panel, however why is Sarcoma missed? My idea would be if growth is seen, then automatically it should be treated the same as a Carcinoma, then a biopsy needs to be ordered immediately to rule out Sarcoma by an experienced group of pathologist, notice I did not say a pathologist, at least 3 pathologist must see this tumor to make a definitive diagnosis. This saves the Surgeons time, and the patient as well for unnecessary surgery. The idea is to find the "Sweet Spot", meaning this: If you know a tumor is growing and has them characteristics for possible carcinoma and decide to monitor it is a disaster because you are under treating it. The idea is to treat it with surgery, if it comes back cancerous then the next treatment can be put into place. The same holds true for biopsying a known begnin adenoma would be over treatment, finding the sweet spot. I am not an average patient by any means, in fact doctors asked me why I'm not a doctor? This is because I'm too direct and honest, some patients don't want to hear the truth, right away anyway. A doctor must have a more caring personality, for me, I want to hear the truth fast as possible, dont tickle me ears with sympathy before telling me what is truly wrong. I do have a caring heart, but I prefer a doctor tell me fast what we are dealing with, then what's our next step, I beleive the patient must be part of the epi-center, making critical decisions in a timely manner when any kind of cancer is diagnosed!
I know this is 5 months or so after your comment but... Yes one would wonder and people could talk about initial presentation and why you might not suspect it. On the other hand... now we're in 2022 and I go in to see my Primary Care. I've got a mass on my hip or the muscle is pushed out from something under it. Regardless I have a mass on my hip that started as the size of a quarter and in 2 weeks was decently larger than a golf ball. So not to jump to a conclusion the size change is concerning. Oh and for kicks I had a Thyroidectomy in September of last year and finish RAI in early December. I was told it was a lipoma on my hip and that I should get a size larger pants and see how that goes for a while. I was like well as I said it's grown rapid (and is still growing) so I find that concerning... to which the response was as if I was being a difficult patient and then I was given a referral to a surgeon to remove the "lipoma". Now I don't yet know what this mass is. What I did expect the Primary to do was to say "well let's get some imaging done on this and see what is going on" and then to make a recommendation. So I would hazard a guess that this is how things like Sarcomas are missed...
@@digitalwolf7628 I agree 100% by what you said, no doubt too many doctor are not sourcing thier knowledge according to the profession. I feel for you and my case gets worse because my endocrinologist missed something in my system, in fact I diagnosed it and, told him in the end I would be correct. I told my endocrinologist that I had primary hyperparathyroidism with follicular thyroid cancer, he disagreed and sends me to a surgeon to just remove half of my thyroid, then the surgeon tells me the same thing and I have no hyperparathyroidism problems. I told him I disagreed as imagining showed 2 parathyroids that were causing calcium to leak extensively in my blood from calcium being pulled from my bones. So, I'm wheeled into the O.R. for a left lobedectomy, the doctor that did my intubation yells out loudly: Oh S Doctor it's broken outside the capsule, the Surgeon re-assures me and my wife if he thinks it cancer he would remove the right side and lymph nodes too. Well, dumb surgeon did not do that, he clearly states my thyroid mass was bleeding, black opaque with long and irregular borders and outside the capsule, any parts as known to be outside the capsule are cancerous. Now....I'm suffering from extreme bone pain, Ostpenia from bone loss, follicular cancer that probably spread to my bones, lungs, lymph nodes, brain and now after all this time the endocrinologist decides to order a Parathyroid 4D Scan of my parathyroid, chest and lung scan, endoscopy, colonospy, and now tells me it's primary hyperparathyroidism plus possible cancer in my other thyroid lobe.....Why??!! The pathology reports say follicular thyroid cancer with hurthle cell involvement likely caused by my parathyroid issue. I knew I was correct the whole time, yet a endocrinologist, a surgeon said otherwise. Now, they want me to go have another surgery because someone was not doing thier job? I'm having 2nd thoughts because I cannot trust a doctor now, my wife is devastating because she knows I'm reluctant now. How should I feel? I'm completely lost for words and pure ignorance.😢🤐
@@arthurmabeejr8752 How are you doing now? Did you see another doctor?
@@nemospence2724 I'm doing as well as I can, meaning my medical situation is still not good. I still have deep bone pain, now a mass was found in my left upper lung, I have some calcification in my heart, and worse insomnia than before. My labs are still not right, higher amounts of calcium in my blood, kidney pain, and my blood pressure gets elevated from time to time. I still have the same endocrinologist, which I see on May 7th, However my decision may point me to a new endocrinologist, the VA is supporting me on that decision since my current endocrinologist had plenty of time to get me fixed and never happened yet? We will see? I was told by the VA health system, and an E.R. doctor that I need a full body PET scan, again the endocrinologist has to put that order in because the VA told me they cannot go over the endocrinologist head, it's like a chain of command at the expense of my health and well being. So, I went back into my weight training, cardio to manage my weight since some extra pounds were added to my frame, I used to be 175 lbs healthy, now I'm at around 200 lbs. I'm 60 years old and train 5 to 6 days a week, I get on my Bowflex Extreme to workout to distract my bone pain which helps some beleive it or not? My testosterone levels are very low still, but I'm able to still workout, I some basic cardio as well as some HIT cardio to keep my heart strong as well, thank you for asking about my health and thought to give everyone an update. God Bless All! Arthur.
@@arthurmabeejr8752 You may be wondering why I asked: I have my own situation right now. I suddenly felt a lump on my left leg just near my testicles a few days ago. I still don't know what this is. I think it's gotten bigger. It is now starting to affect my walking. I have never had any lump before. I still don't know what to do. I haven't been employed all my life. Money will be a matter of concern to me. My brother just got back to work in a cruise ship after two years of pandemic. We had just paid some of our debts. I don't want to bother him.
My main plan right now is to see doctor and find out what this is. Like you, I want to know straight from the doctor what this is. I'm 37 still living with my parents here in the Philippines. And they still don't know. They will know eventually if my health deteriorates. I'm not familiar with sarcoma. And I'm just trying to be calm right now. I haven't had any operation or surgery before. I don't want to speculate anymore. But I don't know where to start, what type of doctor should I see. But I'll give you an update when I got to see one.
They recommend getting imaging before any intervention is done but isn't a biopsy the crucial only thing? I mean doctors often ignore sarcomas only because of the imaging exams that will not cut a diagnosis, just metastasis
I think he said you can forgo imaging if you're in a facility where a biopsy can be done. Sounds like he means CT at a minimum.