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Old 09-23-2009, 08:47 AM   #1
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Can a biopsy be wrong?

My husband has had all the B symptoms of lymphoma for several months. CBC is clear, chest xray clear, CT showed some enlarged lymph nodes in groin. An enlarged lymph node on left groin was removed two weeks ago and came back benign (slight Tcell elevation but nothing unusual). Lymph nodes throughout the body routinely swell and cause aching. But the nodes in the groin were consistently enlarged, painless and firm.

We have so far ruled out: testicular cancer, TB, Lymes disease.

Going for blood work to rule out EBV, CMV, Thyroid issues and lupus.

Three rounds of antibiotics had no effect on nodes. They had been swollen for going on 6 months.

CT scan did show "slight" thickening of stomach. Could be nothing. Or could be??? He's sick of being tested and being referred to dr's (currently seeing a hematologist). The fatigue is getting worse and he's continuing to gradually lose weight. Nightsweats eased up a week after node removal.

I know blood work can be wrong. Can a biopsy be wrong? Where do we go from here for a second opinion? The hematologist is not confident that we will get answers to our questions with new round of blood work. That's just not good enough for us.

 
Old 09-23-2009, 11:41 AM   #2
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Re: Can a biopsy be wrong?

I don't have any answers for you, but how big are the lymph nodes in the groin? Nodes which swell and ache are usually a sign of infection of some sort.

 
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Old 09-24-2009, 08:29 AM   #3
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Re: Can a biopsy be wrong?

The lymph node in the groin was enlarged enough to cause concern from 4 different physicians. There was no pain in the groin lymph nodes and they did not respond to 3 rounds of very strong antibiotics.

The lymph nodes in the neck and under the arm however do swell up temporarily and cause aching. But this has been more pronounced since having the one lymph node removed.

The lymph node that was removed had grown over a 6 month period with no other signs of illness - he hadn't even had a cold. The only other symptom was testicular pain on the same side and severe pain and swelling there, with lower back pain and blood in the urine. They've ruled out testicular cancer, prostatitis, epididymitis and obstructed kidney stones. Two lymph nodes started swelling on the opposite side of the groin but have remained consistent in size and somewhat smaller but are still painless.

The surgical oncologist was convinced there was an enlarged lymph node in the back of the abdomen putting pressure on the testical and renal artery (causing the blood in the urine) but the CT scan was negative for that.

I know alot of the symptoms can be blamed on epstein barr or chronic fatigue since his lab work doesn't look suspicious. But it doesn't explain the blood in the urine or the testicular pain and swelling. So is it consistent with one illness or separate issues? We just don't know where to go from here.

 
Old 09-26-2009, 02:16 AM   #4
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Re: Can a biopsy be wrong?

If the biopsy from the most suspiscious lymph node did not show lymphoma, that is probably as good an indication as you will get that it is not lymphoma. However, they clearly have not got to the bottom of what is happening. Don't accept a non-diagnosis like chronic fatigue, as that is just medical speak for don't know. Those blood tests might just show something informative. The other thing that might be worth looking at are some of the other hormone levels like FSH and testosterone. There are a lot of things that can cause systemic symptoms that overlap with the B symptoms of lymphoma.

 
Old 09-26-2009, 09:39 AM   #5
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Re: Can a biopsy be wrong?

Just had a panel done to rule out hormonal issues. Full thyroid, testosterone, adrenal, etc. Get results from hematologist on Tuesday. We have had a couple of medical professionals tell us that because he had been on heavy antibiotics before and during the biopsy that it could result in skewed results.

I would love to move beyond this possible diagnosis but I'm just not convinced it should completely be ruled out. His surgical oncologist wanted to rule out stomach lymphoma because of results of CT scan but the hematologist wants to "wait and see". We can't do the wait and see. He's too young and otherwise healthy. So next stop will probably be GI. He has had history of stomach lining ulcers so it's reasonable to check in my opinion.

 
Old 09-29-2009, 05:06 PM   #6
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Re: Can a biopsy be wrong?

Half the blood work came back today but we are still waiting on results for EBV, CMV (which I know will be negative) and lupus. Thyroid and adrenal have been ruled out. We're proceeding with the GI and ruling out any stomach issues. Hematologist doesn't think it's lymphoma because the glands aren't "swollen enough". But you can feel about 3 "knots" in his stomach, under his belly button. These popped up after the one in his groin was removed. All other lymph nodes remain swollen (primarily groin area - one's in neck go up and down) and testical is still swelling and painful. So how swollen is "swollen enough"? He's lost another 3 pounds in the past week since our last visit with hematologist.

He has lead a clean life with minimal health issues, healthy eating and athletic. He's now sleeping a minimum of 14 hours a day. How much longer does this go on before it ends up to late to do anything about it?

 
Old 09-30-2009, 10:24 AM   #7
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Re: Can a biopsy be wrong?

Quote:
Originally Posted by twflash View Post
Half the blood work came back today but we are still waiting on results for EBV, CMV (which I know will be negative) and lupus. Thyroid and adrenal have been ruled out. We're proceeding with the GI and ruling out any stomach issues. Hematologist doesn't think it's lymphoma because the glands aren't "swollen enough". But you can feel about 3 "knots" in his stomach, under his belly button. These popped up after the one in his groin was removed. All other lymph nodes remain swollen (primarily groin area - one's in neck go up and down) and testical is still swelling and painful. So how swollen is "swollen enough"? He's lost another 3 pounds in the past week since our last visit with hematologist.

He has lead a clean life with minimal health issues, healthy eating and athletic. He's now sleeping a minimum of 14 hours a day. How much longer does this go on before it ends up to late to do anything about it?

The reason I asked about how large the lymph nodes were in my previous post is because lymph nodes swell for all sorts of reasons, most of which are not lymphoma. However, lymph nodes that are enlarged due to lymphoma can get pretty big, whereas most other causes do not enlarge them to the same extent. When they get over 2 cm (I think), other causes become less likely.

I am very sorry to hear about your situation. Unfortunately, each specialist will only look for signs in their area, and it is very difficult to find a doctor who will take an overview. I hope you get some answers.

 
Old 10-05-2009, 07:12 AM   #8
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Re: Can a biopsy be wrong?

The lymph node was over 2 cm and was hard and firm. On paper he presents like classic lymphoma. But when you factor in pathology the dr's start scratching their heads. He ended up in the ER last week presenting with blood cot symptoms. Was diagnosed with nerve damage due to the biopsy and a hematoma at the incision sight thats grown inward and causing pressure and pain. The ER doc could feel swollen lymph nodes in his legs, armpits, etc. He recommended we see the surgical oncologist again. I think we're going to head to the local university hospital. I'm not sure why someone hasn't ordered an MRI by now and repeated blood work now that he's been off the antibiotics for a few weeks. I think I'm going to call our GP and ask for another CBC. I noticed on the original labwork his platelets were on the lowest side of normal. Anybody know what this could mean? Or not mean?

 
Old 10-11-2009, 12:19 PM   #9
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Re: Can a biopsy be wrong?

Just a thought I had while reading through this thread: Has anyone suggested a PET scan? Even if not covered by insurance it might be worthwhile to pay out of pocket just for piece of mind and ability to focus on other possibilities.

I think this diagnostic tool is used for staging cancer (?????). Anyone know if its use can be expanded to include initial diagnosis?

Also, it seems the hematologist you are seeing remains unconvinced about the lymphs in the stomach ruling out lymphoma. Everything i've read about Lymphoma suggests the nodes stay relatively static in size over extended periods. Is it possible that, while consistantly larger than normal, they fluctuate between enormous and above average? Probably a stupid question.

I've got some interest in how this turns out, as i've recently been displayng all the B symptoms as well. Tho, its likely mine are more easily explained away due to complications from an inguinal hernia repair I had in June: Since that time I've easily lost 25% of my total weight (48"-50" to 40"-38" waist, most in the last two months). I'ts frustrating that my health caretakers are seemingly disinterested in my weight loss (something that has me quite alarmed). Factor in the other symptoms (nightime diaphoresis, peiods or unhelievably itchy skin, swelling in and around groin, testicle pain, feeling fatigued always etc) its a wonder how, despite my repeated attemps, I wasn't given any reason save that of being depressed. Show me a person who has been constantly in pain for six months or more, and I guarantee they have some sort of anxietyx depression, spiritual issue. I guess that's what I get for having made the "McDonalds" of healthcare my medical vare provider, when there were other options.
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Expired Medical, After 35 years of HMO coverage
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Depressed, Stressed, Worried, And Paniked

Last edited by GroinPainInCali; 10-11-2009 at 12:28 PM.

 
Old 10-13-2009, 02:42 PM   #10
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Re: Can a biopsy be wrong?

Thanks for your suggestion and I have mentioned that. I guess just like a CT scan can give a false negative, a PET scan can give false positives, or so I've recently been told. I asked about an MRI and the doctor shrugged his shoulders.

ALL (and I repeat ALL) blood work for any illness remotely considered to be valid (minus wild tropical rare diseases which he might have gotten while eating Fruit Loops a long while back...you know those pesky toucans...) has come back negative. His hematologist said everything was within normal limits but after requesting a copy of the labs I noticed his TSH was MARGINALLY low (47 starts normal range? his was 46). I'm familiar with thyroid lab work because of reading mine for years but the rest I couldn't read so I dropped them off at our GP (not covered by our insurance but the only doctor I trust). His platelets were also marginally low. But I don't know what that could mean.

We see a GI specialist to explore some of the findings of the CT scan - on Thursday. I've called UF SHands and they've requested a copy of his medical records to evaluate seeing him without a diagnosis at present. He continues to lose weight (another 5lbs) and has now started developing blue "marks" up and down his left leg (the leg with the lymph that was removed). He developed a hematoma that "could" be causing nerve pain/damage, from the surgery. Not large enough to warrant removing, but enough to cause pain and assistance with a cane. He's too young to need a cane. They've done ultrasound to rule out clots. The pain down the leg travels and the ER doc said he could feel swollen lymph nodes up and down the leg. All the other "B" symptoms are still there, nausea and vomiting are a little worse. The hematologist noted his nightsweats as 'hot flashes' on his record.

I think I've officially fired the hematologist. My research on the internet and in the community has shown that normal blood work and biopsy results CAN happen and there still be lymphoma or cancer. The dr's are missing something, I know it. I'm just trying to maintain the energy to keep fighting to find out "what".

I am about fed up with dealing with the Dr. Ham Burglars of the world!
Hang in there! Don't give up.

 
Old 10-13-2009, 11:22 PM   #11
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Re: Can a biopsy be wrong?

I'm sorry to hear that your husband's condition is worsening. Tho, getting more ill may not neccessarily be a bad thing: Certainly hearing that seems sadistic and backards thinking, but its really not. If whatever is going on with your husband keeps progressively getting worse, at some some point that "thing" will be obvious enough for a physician to recognize and treat. The assumption here being that when "it" is recognizable, "it" will still be treatable. I am confident that with you keeping a watchfull eye on both him and his medical caretakers a solution will present itself soon. Your husband is a lucky man to have such a concerned and loving partner to watch over him.

My own circumstances are, at this point, getting semingly much worse, as my options continue to narrow. The way in which my reports of symptoms and pain have been so quickly dissmissed in the last 14 days (not surprisingly the sam btime my medical overage expired) is very telling about the attitude of the medical community, and our society's wishes for me. I think this is best summarized by something a junior national politician said recently while remarking on the National Healthcare Reform Debate~ instead of having universal heathcare, (they), "....would rather you die as quickly as possible, than take on any social resposibility in paying for the overall health of our country".
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Old 10-17-2009, 08:10 AM   #12
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Re: Can a biopsy be wrong?

Thanks for the well wishes for my husband. I send the same back to you in hopes you can get some answers. The "not knowing" is the most frustrating part of all.

We saw the GI dr and were reassured that he's not crazy - something's going on. He goes in two weeks for a double endoscopy, lower and upper. He's so excited. haha. The hematologist (that we ended up firing) and the GI dr suggested maybe "sprue". But I've never heard of celiac causing swollen lymph nodes and nightsweats. It's also not very likely considering I'm gluten intolerant and the rest of the family eats very little gluten anyway as a result. But who knows...something else to check off the list.

In the meantime the leg pain and bruise "clusters" continue. The bruises are not changing colors like they would if they were healing. They stay blue. The ER said they were not blood clots. The leg is hot but he doesn't have the red localized hotness like you typically get with a blood clot. But the calf pain is suspicious if you ask me. They did an ultrasound but with muscle in that area, couldn't a clot have been missed?

Staying frustrated...

 
Old 10-17-2009, 09:35 AM   #13
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Re: Can a biopsy be wrong?

I rember reading something about how deep vein thrombosis can be mistaken for swollen groin nodes, and pain/discomfort often times is described similarly. I just glanced through it tho and could have blended information with the 100's of articles I've already been reading. Somehing maybe to ask about anyway I guess.

I finally had an office visit with a primary care doc in a local low income community clinic..... I was so excited. But hopes emded in etreme dissapointment. In fact, I not only.was left in the exam room for 1½ hours, but I was able to over hear several people talking about disbility forms, resposibility, liability etc.... now I'm getting paranoid. When the doctor arrived she curtly asked what it was that I expected from the visit, I took out my notepad and began to retell a breif summary of my journey thus far. She interrupted me not even five seconds into my summary, and asked me the question again. So I told her:
1) A diagnosis and treatment plan
2) Some form of continued pain controll: at the very least a step down plan to avoid opiate w/drawals as I've been taking two to three pills of vicodin or percocet daily since the beggining of may &
3) Some form of documentation to send the CA EDD showing my current inability to work.

She flatly refused all my reuests, and even tho I brought official documents proving my lengthy history of care with kaiser and Valley med (something that her expression showed she had not expected) she said that she was unwilling to dobanything without my complete medical records. Hell, I even brought all my empty pain med bottles and she refused to offer help with the ooiate withdrawals I am currently experiencing. My frustration soon started turning to anger as he slithered out of the exam room and returned with a nurse. At that point I matter of factly dropped my pants clearly leaving the two in shock momentarily (thankfully my groin was swollen then). I think was trying to NOT examine me. But as I pointed down bellow remarking at how much "that" was very painfull. ..... and saying "..... how am I supposed to work like this?"

She gave me an obligatory exam, and clearly only because she had no way not to. The two then left the exm roomn for 20 minutes, and came back withban idea of referring me toba urologist: Something i told her I already had. In any case, I would likely have been better off buying some jack daniels and weed with my sixty borrowed dollars. At least I might have had a moment of pain releif.

I forgot to mention a very alarming thing too. Before being taken to the exam room, my blood preasure, tempture, and weight was measured. In May I weeighed about 280lbs, when i stepped on up on the scale I weigued in at paltry 220, something ibhavent been since I graduated high school 25 years ago.

Given the fact that no one will "diagnose" me, the current physicians's refusal to provide me a simple written (or verbal for that matter) summary of my visit, my sudden, substantial, unintentional weight loss and other symptoms..... I am FREAKED OUT!!! Am I dying?
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Old 10-18-2009, 12:21 PM   #14
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Re: Can a biopsy be wrong?

If you're not working, have you applied for state or federal aid? Try your local dept of children and families and see if they can help. Some cities also have a "human services" resource center and some medical emergencies can be covered on a one at a time basis.

I hate to say it but I think sometimes you're better off to go to a local hospital's ER that has the policy where they won't turn you away. Unfortunately, when you don't have insurance, they sometimes automatically assume you are looking for drugs. But some hospitals are better about this than others. Some ER's will want an answer before you leave and proceed with testing - especially if they have a program in place to help with costs. Others don't care. Call around or ask your friends and neighbors if they've had any good or bad experiences. Hospitals will take payments, even $10 a month. Some hospitals have charitable funds that are based on your income. Call the finance, medical billing dept and ask if there is something available for someone with low income, no insurance, a medical issue and no immediate hope of federal assistance.

I'm assuming you're in California...have you checked with a university hospital? Who wrote the scripts for vicadin? Can you request copies of your medical records/notes from him and why he prescribed the pain killer?

It's frustrating, but don't give up!

 
Old 10-24-2009, 09:50 PM   #15
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Re: Can a biopsy be wrong?

I actually was very despondent over my the thought of having to once again live as a street person in an emergency shelter: I had lived in one for two months in recent years~i don't think I'm able to tolerate living under such circumstances again. Ive learned that I don't have the required amount of "street smarts" to be safe amongst the large populations of desperate folks who call that environment their home. Without getting into too much detail, will say that I.was so hopeless I downed a bottle of my nuerontin, and was awakened hours later by a police officer yelling at me to wake up.... a friend of mine's wife (who incidentally never calls me) decided to check in on me andbecausei didn't answer phoned thepoliceto do a "welfare check" (never heard of that).

I can't believe I was released in less than 24 hours, especially after telling the psychiatrist that none of my circumstances were going to change, especially since of all the physicians I've seen, none will extend an existing CASDI claim (if executed now will provide enough for my rent for several months, and allow me to pay for much needed medical care.) No dice, just a refferal to see Psychiatrist, which surprisingly enough is supposed to occur after my eviction, and something I can't pay for. Its like they aren't listening to anything I'm saying!!!
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Expired Medical, After 35 years of HMO coverage
Undiagnosed Condition, with Substantial Disabling Pain
Swollen and In Pain Below,
Depressed, Stressed, Worried, And Paniked

 
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