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Support > Patient-to-Patient > Patient Experiences & Guidance

L's Story - Her doctors doubted her reported symptoms & missed the diagnosis of lymphoma 
"The mailman was right, the doctors were wrong. I was not totally crazy, I had cancer."

In my case, my story will begin with how my cancer was NOT diagnosed. I was never one to go to doctors for little things, but in the fall of 1996, I began running a low grade fever, complete loss of appetite, general malaise and pelvic pain that persisted for seven months. 

I went to my internist, who despite running a wide range of tests, wasunable to identify the reason, all tests were coming back relatively normal with only slight elevations in WBC and a few others. I had numerous colonoscopies and gastric tests, all coming back normal. My internist early on seemed to have decided that what ever was going on was psychological...yes, I was anxious and depressed, but, when one cant eat, has pain, feels sick and is being put thru test after test with long delays between each one, I don't think this is out of the ordinary. 

After a few months, this internist was going on sabbatical and she essentially fired me as a patient, saying "Your fine, I see no reason for you not to try to get pregnant, and I think its best if you don't see another doctor in this practice while Im gone." I responded angrily, "I am not fine and I really don't think getting pregnant would be the best idea when I can barely eat and have pelvic pain."

The GI doing all the procedures and tests never seemed to doubt me, and said things like-- "They told us in medical school, you NEVER want to be a difficult-to-diagnose-patient," "Something is definitely wrong, probably something autoimmune that is taking a while to show it self clearly." In an attempt to alleviate the pain based on a hypothesis that something autoimmune was going on, he put me on a short course of steroids.

I'd lost a total of 35 pounds, looked like a concentration camp victim. Although my doctors couldn't diagnose me, the mailman at my office was spreading rumors that I had cancer because of the massive weight loss.

I went to another internist, but the chart implying that I was nuts followed. This internist pulled me off the steroids as I was running a fever around 100 degrees. More tests including exploratory surgery. However, a day or two after the steroids were stopped, my pain stopped and gradually my appetite returned. (note: the steroids I was on are
included in lymphoma treatments--that's why the symptoms stopped)

All throughout this entire episode, a groin node, where the leg meets the body was slightly enlarged- a little over 2 cm. The internists were aware of this but said it was nothing. It seemed to be growing and several months after the pain had stopped and my appetite had returned, I asked the internist to biopsy it. He insisted it was nothing and I had the feeling he thought I was nuts. I persisted and got the biopsy. It came back benign. I felt absolutely fine for two years.

In terms of public opinion, every last doc I saw thru this ordeal was on the published lists of "best docs" in the city. Do I take these lists seriously anymore-- NO.

Then a 4cm node popped up on the other leg. This time the Drs were worried, did the biopsy pretty fast. First impression was lymphocyte predominant Hodgkins. The pathologist had compared it with the earlier tissue and told me that an error had been made-- both biopsies looked the same. He was not 100% sure of his diagnosis and sent it to other
experts to review-- came back as an aggressive NHL lymphoma difficult to classify or grade, either an unusual marginal zone or unusual bcl-2 cd10 neg follicular that looks like its been caught in the act of converting from indolent to aggressive lymphoma. 

The third group of docs at the NCI cancer ctr where I was treated decided it was a follicular grade 3 lymphoma with diffuse areas. No other tumors were seen on CT or PET. I was put at stage 2 because the tumor that had been misdiagnosed was on the other leg. From what I heard from one of the docs, the tumor board was pretty outraged at the earlier 
misdiagnosis- the cancer had been obvious- the one doc was annoyed as he felt they charted it so as to protect the first pathologist rather than put was actually said in the meeting about how blatant the error was.

The mailman was right, the doctors were wrong. I was not totally crazy, I had cancer. Although I was VERY angry and scared about what the misdiagnosis would mean in terms of my eventual outcome I did not sue for malpractice.

I had 3 rounds of CHOP, pelvic radiation and then rituxan. I had been trying to convince my doc to give me R-CHOP as Id read about it, and he initially refused saying it wasnt proven. Then he and my rad onc went to ASH 99 saw the abstracts and my rad onc suggested I should also have rituxan-- I told him, he needed to talk to my onc about it, as Id already asked. After they discussed it, my onc agreed to give me a course of 4 rituxan after the radiation.

So far, its been close to 6 years, and, thankfully, I have stayed in remission.

My advice from my experience-- ALWAYS GET SECOND OPINIONS ON BIOPSIES. Dont stay with doctors who get frustrated because they cant make a diagnosis and then treat you like a hypochondriac when your body is telling you something big time is wrong, youve lost 35 pounds, have pain and are running a low grade fever!!!

 
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For all medical concerns,  you should always consult your doctor. 
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