It would make me angry too, but I would think to be thankful that I was led to the right doctor who is to save my life. I myself went to the ER where they did a scan & was told that nothing was wrong. I wanted a second opinion & my doc immediately saw that I had cancer. I am still grateful to the point of crying whenever I think of him. God is good! :)
Synovial Sarcoma, Adult Soft Tissue Cancer Questions
Coming to terms with misdiagnosis?
Asked by delia323 on Saturday, March 31, 2012
Coming to terms with misdiagnosis?
I was wondering how you come to terms with being misdiagnosed. I was misdiagnosed twice. First as having a pinched nerve in the spine. Second as having thoracic outlet syndrome. This I was told would go away with physical therapy, if not a simple surgery. After some PT I was sent off to see a surgeon in the big city. Backing up to 6 months I showed my doctor a rather big lump on my forearm. He told me it was edema. Several times I brought up the mass, and was meet with the same edema answer. When I had my surgeon consult he immediately saw the lump and asked what it was. I answered “edema”. He just stared at me as if waiting for me to break out in a chuckle at the joke I just made. He ordered an ultra sound and biopsy STAT. He sat me down and told me it was not edema but instead a TUMOR. Bottom line I now stand to lose my left arm above the elbow. Although most of me knows that I have to deal with the “now” I can’t help wonder what if 6 months ago…
11 Answers from the Community
I was misdiagnosed for two years. I was angry with the gastro and primary care docs for blowing me off. My surgeon agreed that someone had "dropped the ball", but what could I do. Sue? It's not in my make up.
Dwelling on the what if's, is not going to do anything but burn up energy you are going to need to survive this journey. Let it go, focus on today. Sunny said it- God is good!
My primary doc said a cat scan is all he would need to tell if lumps in my neck were cancer. After the scan the report said,nothing to worry about, then had a biopsy done anyway, squamous cell carcinoma. A little to worry about. I was mad at the first dr. and don't go to him anymore, but that's about the end of it, just glad we done the biopsy.
I'm so sorry to hear that your primary physician didn't take your concern seriously. I had a similar situation. I had a lump on my right shoulder blade and my primary care told me to put ice on it, that I must have pulled a muscle. Four months later a different doctor in the practice ordered an MRI. It turned out to be a 12cm sarcoma. I have since had radiation, limb sparing surgery and chemo. I now have radiation induced brachial plexopathy and no longer have functional use of my right hand. Recurrence is always in the back of my mind and the possibility that the next time it could be my arm. The only advise I have for you is to make sure you are seeing a sarcoma specialist and/or are at a sarcoma center. Check out sarcoma.org. God bless. I'm out of touch for a week but I'll check in when I get back.
Ohmy gosh - that is such a difficult read. I think I'd be angry... In fact, when I had my mass first examined, I was told I had time.... she said - yeah - go get a mammo, but it is probably nothing to worry about. In my case, I delayed my mammo by a couple of months. Luckily, I did not have spread of my cancer, so the delay probably was insignificant.
I think there are also so many many unknowns. Our bodies are all so different, and some of these things are new to some of the professionals.... They cannot know everything....
That said, I will be filing away your experience... If I get a new mass somewhere... I will very explicitly request a biopsy or whatever appropriate test to ascertain what the mass is.
One of my acquaintances had a small thing on her face... She went to the doc... Wait and see, he said. Six months later, she has metastatic skin cancer of the ugly kind.... He acknowledged that he should have been more aggressive and had that taken off ASAP. Would that have changed her outcome? Hard to know. However, she is actually interested in suing so as to provide for her family after this thing takes its course. But, the doc won't admit that he said what he said now.... I have no idea how that will pan out.
I am so sorry this happened to you.
Doctors are "lazy"...They want to assume they have already seen "what you have", to save their time & effort.... If they don't start from scratch with every new patient's ailment, misdiagnosis is a big possibility. There was a report done on TV couple years back. Shame on them...I have stage 4 ovarian cancer....Didn't have to happen. Strong family history was talked about. Am I angry...? You bet.
Yours is a really horrible story, and coping will be difficult. You may have a legal case, especially if you lose your arm. If you want to pursue it legally, consult a lawyer right away. There is a statute of limitation; in New York, I think it is three years. Lawyers don't charge if they take the case, they take a percentage of the award. Be careful about mentioning a legal action around anyone in the medical field.
I had a misdiagnosis too, but it didn't alter the course of treatment. I was disappointed mostly that docs lied to me, and won't discuss my test results.
I was misdiagnosed with constipation when in fact I had Stage IIIc ovarian cancer. I was prescribed a couple of laxatives by my primary and when that didn't work she told me to start taking metamucil. I was so weak I could barely make it to the drug store. I soon was unable to get out of bed, eat or drink. I kept emailing my doctor and she finally set me up with a phone consult with a gastroenterologist. He said my symptoms did not sound like constipation and ordered a cat scan. A few minutes after I got home from the cat scan I got a phone call from my primary who actually sounded quite distressed, telling me I had cancer. This was a sixteen-day period and the misdiagnosis decidedly had no effect on my condition but I found it hard to forgive my doctor for those two weeks of suffering. I ultimately decided to continue with my primary because I had a good relationship with her but I did make it clear exactly how I felt about those two torturous weeks.
My story pales in comparison to many women who are misdiagnosed for months even years. That is frightening because ovarian cancer is usually quite advanced by the time a woman has any symptoms. I urge anyone reading this to google ovarian cancer and become aware of the symptoms because time is of the essence in order for a positive outcome.
I am very sorry to hear about what you have to go through. But I think you have come to the right place. If you look around here, you will notice that people here are more "forgiving" and live in the now. Past cannot be altered. While it is very tough to go on knowing someone in authority wronged you, be practical. First, you will need lot of energy to cope with your own health. Do not try to complicate it by taking on an added burden of confronting who wronged you. Be glad that God led you to the right doctor in time. After you have sat down and evaluated your life, think what change you can bring to this world. Whatever that change is, follow it. I have found great solace in sharing with groups like these. Even though we are strangers, the group provides great comfort. And I am very thankful for that. Thank the internet! Wish you the very best!
My husband was misdiagnosed for at least 4-6 months. He started having discomfort and pain, and was told it was indigestion (take antacids), then IBS (eat more fiber), then an ulcer (take acid blockers). They never did ANY scans or blood work, never did an upper GI or anything. He was in more and more pain to the point where he almost couldn't get out of bed. Then they STILL said it was just a GI thing, and prescribed Tylenol with Codeine. After all those months he got the diagnosis of stage 4 metastatic esophageal cancer. All those months he HAD the symptoms and if they'd have done the scan, he would have gotten treatment earlier. Plus, the Tylenol they gave him (in very high doses) likely made the liver involvement much worse.
I was so angry at first, but you cannot go back and fix the past. You can only go on into the future and hope for the best possible outcome.
I do not know exactly what you are going through, but i have also been misdiagnosed. I was told last year my cervix was okay but that by 30 I would get cancer., I didn't do the right research and my doctor had told me to wait till 21 to do anything so I listened to her. Unfortunately that was not the case at all and now a year later they are pretty sure it is cervical cancer. I know how upsetting this could be and it is NOT okay that they missed something so crucial to my health but at this time I have to be ready to fight the long battle ahead of me. I am so scared about what is to come next but I know I have to be strong, and so do you!! No matter what happens you just have to believe in yourself and just know you are going to make it through! I hope that I could help at least a little. Please let me know if there is anything else I can do for you! Xoxo Dani
PS Do not feel alone you have a lot of us here for you and we will help you through as best we can!
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