get second opinions on all biopsies!!!!!

anjou · Experienced user Joined: 01 Jul 2005 Posts: 65

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, was unable 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 dont 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 dont see another doctor in this practice while Im gone." I responded agrily, "I am not fine and I really dont 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 definately wrong, probalby 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 couldnt 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 100degrees. 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--thats 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!!!

I cannot repeat often enough-- GET SECOND OPINIONS ON ALL BIOPSIES. Pathologists make mistakes- not usually as flagrant as the one made in my situation, but they make errors about the type of lymphoma relatively frequently-- always good to get a second opinion as the doctors must have the correct type of lymphoma to treat correctly.
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Follicular lymphoma grade 3, stage 2 dx 9/99 CHOP x 3 3600 rads rituxan x4

dawn39

hello hope you are ok. i am new at this even had to get my children to show me how to send messages. read your msg last night and was quite frightened at the similarities. i have been very nauseous with periodic "full up feelings" in stomache after eating very small amounts lack of appetite, significant weight loss. had to be hospitalised in december for oral rehydration and was accused by the doctor of being anorexic and to "just eat" and forget about symptoms and get on with my life. i have had ct scan of abdomen last nov. endoscopy last october and ultra sound of abdomen and liver few weeks ago.extensive blood tests all came back clear. meanwhile have had a enlarged lymph node on lhs of neck for at leats a year, could be longer just didnt take much notice as all symptoms until this point seemed to point to gastro trouble. went back to doctor 8 weeks ago to ask about gland and was told he would refer me to haemotologist even though there would be nothing wrong as he said, told him was feeling very hot most days with body temp of between 37.0 and 37.5 most afternoons was told this was normal and am just a hypochondriac starting to believe myself that i am going slightly mad as now even my family are starting to doubt me. finally saw haemotologist last week who said he would whip the lump out and biopsy it and then sent me down for chest xray and blood tests all came back clear seeing him next week again but still waiting for appt with surgeon for biopsy. i am absolutely terrified, feeling very ill,and havent even got a doctor now to discuss my fears with i am also very angry that for two years i have not only felt increasings bad but have had to fight to prove that i am not suffering from various pshycological problems because basically i know my own body and no one else knows how i feel. sorry to go on but i am so certain that my case is going to be the same as yours and that i have been misdiagnosed or should i say not diagnosed for 2 years and the way my mind and body feels at the moment if it is nhl i dont feel as if i have any energy left to fight it with.
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i have been ill for two years now and am awaiting a biopsy on an enlarged node. i have been told by many doctors that there is nothing wrong and it is all in my head, so now even my family believe this i feel hopeless and very scared/

anjou · Experienced user Joined: 01 Jul 2005 Posts: 65

Hi Dawn--
I hope you get the biopsy soon--it is VERY difficult feeling sick and not being able to get a diagnosis and being accused of hypochondriasis! Hopefully it will not end up being cancer or lymphoma, although I certainly hope they find a reason for your symptoms soon.

One thing I did learn, it is generally not helpful to try to diagnose one's self on the internet. I never even thought or researched lymhoma and wasted much time researching autoimmune diseases as some docs thought this might be what I had. I hope you can find a doctor you trust, and get answers soon.

With lymphoma, it is not so rare for folks to have difficulty getting diagnosed. Many lymphomas are slow growing/indolent and the delay may not effect overall outcome since with certain types of lymphoma they may "watch and wait" for several years before actually treating.

I have been well and will be scanned in Oct. Hopefully I will still be in remission.

Anjou
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Follicular lymphoma grade 3, stage 2 dx 9/99 CHOP x 3 3600 rads rituxan x4

dawn39

hi anjou thanks for taking the time to replyi am still waiting for biopsy consultant said should get appt thru early next week first doctor in a long time to take me seriously lovely man. said all blood tests including esr ect were perfect sitting here feeling very frightened again as been feeling very hot for hours again and got hot tingly feeling on neck and back just want this nightmare to be over can u tell me what ur fevers were like and how long they lasted mine seem to be for most of the day and have been like this for 4/5 weeks and arent reading that high on the temps 37.5 at highest. how did u cope with treatment after waiting so long for a diagnosis and did u question at times whether your mind was going i know i have. the strange thing about this is since been getting hot have actually eaten more in the last few weeks than have in two years not really hungry but so worried just eating . u said that u thought your problem could be auto immune i have had that all checked out last year paid out lots of money privately for different gastro consultants and even paid for mri on neck for big gland in my ignorance thought this could tell whether anything was going on but result just said that gland was within normal limit waste of money as haemotologist said that it made a change to feel "a nice juicy one" as last few people he had seen he could barely feel anything. i think he was trying to lighten the situation but it just made me feel worse, i was hoping to go in and for him to say that it was nothing to worry over , sorry to waffle on . again thanks for replying hope this finds you feeling well dawn
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i have been ill for two years now and am awaiting a biopsy on an enlarged node. i have been told by many doctors that there is nothing wrong and it is all in my head, so now even my family believe this i feel hopeless and very scared/

anjou · Experienced user Joined: 01 Jul 2005 Posts: 65

Hi Dawn--
Im glad you've found a doc that is taken you seriously and has referred for biopsy. Biopsy is the only way to definitively diagnose lymphoma. Of course, hopefully it isnt!!!

My temperature at the time ran around 38, lower or a tad higher. Generally would be normal in the morning and later in the evening.

I did get very upset emotionally at the time, as my symptoms were blatant to me, altho not to my doctors and didnt show up on labs. I had horrid unusual burning abdominal pain and no appetite or sensation of hunger for months....when I confronted the internist who implied I was a hypochondriac after my diagnosis, she said something like I had good intuition to know that something was wrong... Uh, duh... had nothing to do with intuition-- it was like I was being hit with a Mac Truck daily it was so obvious something was wrong. So, yeah, I started feeling crazy, but I never questioned that something wasnt seriously wrong.

Make sure you get a good pathologist reading your biopsy-- mine was misread as benign- which delayed the diagnosis for several years. When the tissue was reexamined it was classifed as an aggressive lymphoma.

I did ok with treatment and have been very very lucky so far.

anjou
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Follicular lymphoma grade 3, stage 2 dx 9/99 CHOP x 3 3600 rads rituxan x4

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