Is it possible to have lymphoma without it showing in bloods or as a mass? I've had constant fever, sweats, fatigue, weight loss & lymphadenopathy. Tests ruled out infections & autoimmune, neck/chest X-ray show nothing,ultrasound shows minimal free fluid

NB: physician claims it would have presented a bigger warning sign so had suspected lymphoma but has now ruled it out. He actually accused me of being anorexic!!!! He did not want to order a CT because of my weight. My gp suggested a petscan but she doesn't have authority to order it. Any suggestions?

Yes it's possible. Lymphoma does not present in any blood tests, not directly. At the most, a couple blood tests might have elevated numbers because they are measuring inflammation in the body and that inflammation might be a tumor. But no one would make a diagnosis based on that--not even close.

Furthermore, technically lymphoma is a blood cancer and not a solid tumor cancer; however, to differentiate lymphoma from leukemia, a mass generally needs to be present (whereas leukemia means circulating cancer cells). That said, in order for a mass to be picked up by an X-ray it needs to be about a cm in diameter. The only way you're going to know is by having a CT/PET scan.

While your symptoms seem to kind of, sort of match the generalized symptoms of lymphomas, they can also mean other things. It seems like every couple months I read about someone who went to their doc like you, was blown off by them, only to learn that their cancer was missed. Now, for every one of those there are who knows how many hundreds of incidences where the doctor was right ... but do you want to take the chance that he's wrong?

Weird that your doc isn't alarmed by the weight loss-- major prognostic indicator in health issues in general, but especially in cancer.

Personally I would fight for that PET scan.

Good luck
Ross

Hey Ross,

Thank you so much for your reply. I really appreciate the feedback.
The thing is, i guess he was alarmed by my weight, but proceeded to tell me he wanted me to see a woman at mental health! When i asked on what grounds he said "well I am just seeing in front of me, a 26 year old woman who weighs 45kg! (ok, so i weighed 51kg prior to losing any weight, so i couldnt afford to lose any to begin with... but i HATE being so scrawny... and it i so evident that it is muscle wastage rather than fat loss).
I do actually have a couple of other lymphoma symptoms ie. itching, painful leg and pain following alcohol consumption.

The only anomalies in my bloods were elevated eosinophils (ALWAYS) and the last test showed elevated gamma globulin levels.

I only went to that physician in the first place(i was reluctant due to his rep) because i knew he had the authority to order further tests, but by gosh i wish i never went!

Oz-
What you're describing-- if it is a lymphoma subtype- is actually more in line with Hodgkin's lymphoma than any of the non-Hodgkin's. The alcohol thing is I think specific to HL, and not NHLs--- so, do certain lymph node sites hurt when you drink alcohol? You're kind of the right age and gender for Nodular Sclerosis, the most common HL subtype, but Hodgkin's is weird because it's such a well-known cancer that we all kind of assume it's common but it's not common at all, it's really, really rare. You're talking in metric so you're clearly not in the US, but here there are about 8400 new diagnoses each year-- that's less than new cases of tongue cancer! and of course it's dwarfed by 220,000 lung cancer diagnoses.

Either way, you seem to be very much in touch with yourself, your body and how you feel. I don't know how the health care system works where you are but if you can you should demand a more thorough work-up, considering the symptoms. Doctors f--k up all the time, and misdiagnosis is extremely common in lymphoma, at every stage of the game-- exam, lab work, pathology, you name it.

Ross

Thanks so much for your reply ross, you really made me feel a lot better. I started to doubt myself following my visit with that awful physician yesterday! I'm based in New Zealand by the way:) The only issue i am facing is that GP's can only authorise certain tests here thus have to refer me in order for a pet scan/CT to be ordered. It's a matter of referring me to the right person though:)

I see, so you need to be referred to a specialist- an oncologist, or an internist, actually perhaps the best would be a hematologist. Well here's what I'd do to get referred to the right person, and I'm not saying this would work and keep in mind my profile on this site is explicit in that I'm not a health professional-- but I would either use pubmed and search terms like lymphoma and New Zealand to determine who in NZ is publishing important research in lymphoma, many are MDs in hematology/oncology departments at hospitals and university or city medical centers. Then look into whether they are seeing patients, whether you can be referred etc.

naturally I have no idea about you, you could be a massive hypochondriac with phantom symptoms. that's not the point. The point is that in lymphomas, you really have to assume control over your health because it's still such an emerging area. You have to be aggressive about it, because the consequence might be that you assume some doc is doing his job but he missed it, and made you feel stupid about how you feel, and because we kowtow to docs all the time, next thing you know, your disease is advanced. Again, f--k it, drop the civility and be pushy. try being an ugly American in Europe ... ;)... act like you're entitled, because in this case you really are.

Ross

Hehe i really like the way you think!!!!

I don't know that i would be able to fake fever even if i were a hypochondriac!hehe. And all of this really became apparent due to the misdiagnosis of a pelvic infection.
The thing with me too, is i have such a complicated medical history. I know my body well enough to know this feeling is not normal, it takes me back to Epstein Barr days!

Thanks so much for you fantastic advice, i will definitely have a look in to it. After yesterday's episode i was seriously ready to throw in the towel and wait until something more serious prevailed! But I want my life back, and i want to be back at med school next year (funnily enough this experience has changed my whole impression of dr's!)

I'm a bit too nice, so ill have to attempt the more demanding approach!!

How are you doing by the way??? I need to check out your profile:)

Easier said than done, being aggressive I mean, but I've gotten better at it mostly by operating according to the notion that bedside manner is way overrated. That way I'm not concerned about inconveniencing the doctor, or pissing him off, or on the other side, being overly friendly and worried about jeopardizing our 'friendship'.

You know that quite a few lymphoma subtypes are associated with the Epstein-Barr Virus, right? I mean, most of us carry the virus but it doesn't do much. Yours could be implicated in all this. Check out this info page on the association for more info.

As for me, I'm fine. Got dx'ed with high blood pressure the other day. Nothing says 'getting older' like hypertension.

Ross

Ohhh i know exactly what you mean, im a bit soft however i had worked in the corporate field so am pretty good and maintaining composure and standing my ground.

That's actually really interesting.... EBV is an evil virus, i had it for over a year and it caused so many secondary issues for me. I have had a couple of surgeries in the past year, so prior to the issue of fever and the sweats i put the fatigue down to recovery (however it has regressed a lot) and the elevated glands down to allergies. As far as pain following alcohol consumption goes, i've actually had that issue for over a year and always put that down to allergy too..... so you can see how things have been a bit confusing for the health professionals..... but the idiot i saw yesterday didnt even look into my history, in fact i think he actually had me mistaken for my sister. I think if my GP can't refer me to someone decent, i may call my gastroenterologist down south and ask him to help me out even if it is not really his department - he can help get the ball rolling.
I think it is a bit of an uncomfortable thing discussing a disease such as lymphoma, especially because you don't want the dr's to think you are naturally over thinking things..... im not so concerned about that now, considering the ass of a physician suggested and ruled it out all in the same sentence! hehe;)

I'm really happy to hear you are good! Not so good about the high blood pressure though! have you tried flaxseed oil supplements??? you should!!!:)

I was looking through your posts and you have made an effort to help a lot of others on here. What a guy!

Nice of you to say-- now, don't leave me hanging here on your outcome, let me know how it goes and if I can offer up anything else ...

Ross

Thanks Ross, I actually had a chat with my gastroenterologist over the phone and he raised the issue of lymphoma also. He suggested a Fine Needle Aspiration.... i thought FNA's were not such accurate tests? and aside from that, the nodes arent extremely large so im unsure as to how they would decide on a node to biopsy! He also explained to me how the other dr could have raised the issue of anorexia.. so i understand where he is coming from now, but even if i were (which i am not..) it wouldnt explain the fever, constant flu like feeling or elevated glands.....

sighhhhh;)

You're right about FNAs-- I always refer to the treatment guidelines published by the National Comprehensive Cancer Network (www.nccn.org) here in the US, and they don't consider FNAs to be conclusive across the board in terms of making a diagnosis.

However, lots of doctors still order them, and my guess is because it's not a terribly invasive procedure, and if they're not very sure about it, then they don't want to put you under to excise a node. I think that oncologists should start making that clearer to people- that 'we're gonna do this simpler biopsy but you should prepare yourself for the need to have another, excisional biopsy if this first one merits it' because patients seem really bummed when they learn after the fact that they need 'another' biopsy.

Anyway, since you don't have obviously bulging nodes, they could still determine where to do the FNA (and later if necessary the excisional biopsy) by a combination of an exam, a clinical workup, a lab workup, and basic knowledge of lymphomas. For instance if they suspected it was Hodgkin's lymphoma / Nodular Sclerosis based on the work-up, they would know from the literature that the cervical and supra-clavicular nodes are the most commonly affected in that subtype (along with mediastinal), and would probably focus the FNA in that direction.

Just to give you an idea, here's the NCCN's work-up guidelines for Hodgkins:

Thanks ross! It's actually quite interesting. As far as my bloods go, the only common anomalies have been albumins/eosinophils, a few times the light chain/heavy chain levels have been out of whack but ESR has not been higher than 12 this entire year. I guess bloods really arent a very good indicator.

Re. the nodes, doesn't that then defy reason if in most cases the results come back inconclusive so the have to proceed with the full biopsy anyway?

You are such a great help, i know people who have been diagnosed in the past tend to get a little miffed when others who havent, ask too many questions.

I will have a good look at that site:) Thank you!

You're clearly a med student-- do, or did, or do you still, have a specialty in mind if or when you return?

As for the biopsy contradiction, I can't really say. Maybe with your background you can make better sense of it somehow by looking at some studies critical of FNA: This one is especially critical of FNA in lymphomas: Hehn ST et al. Utility of fine-needle aspiration as a diagnostic technique in lymphoma. J Clin Oncol. 2004 Aug 1;22(15):3046-52.

And this one notes how frequently FNAs can be inaccurate or misleading in lymphomas: Morris-Stiff G et al. Does the surgeon still have a role to play in the diagnosis and management of lymphomas? World J Surg Oncol. 2008 Feb 4;6:13.

Who knows, maybe doing the FNA first is just another way to generate revenue. I hate to be cynical but doctors - in private practice at least - are entrepreneurs, they have a business to run, and it wouldn't be the first time docs have been accused of such a thing, nor would it even remotely be the worst of them.

[That sounds angry and humorless--- for the record I was just shrugging and thinking 'eh maybe, who knows' when typing it.]

Did i tell you i was a med student??? Ha! how did you pick up on that? Yeah, unfortunately i have taken a hiatus this year due to surgeries and now this! School starts back early March '11 thus i am so desperate to get things sorted by then, however i have a sinking feeling this is going to go undetected until something more serious becomes apparent (whatever "THIS" is:)). I've decided to go off all pain meds to determine what my bowels are doing on there own and see whether codeine is affecting my appetite or not (long shot, but anything is worth a try)... im also going to cease consumption of all health supplements (multivites etc) - who knows, they could be helping to keep my system above water. As for a specialty, i have endocrinology, paediatrics (just to be different;) ) and immunology in mind at the moment, but im sure that will change in the future.

My real name is Stef by the way:)

LOL, i think you are probably right to some degree, i have actually been really lucky as far as specialist's go, my GP had a great ability for referring me to excellent professionals with great personalities and an actual CONCERN for their patients. The one i saw on friday was the exception as he is the only specialist physician in my town. In saying that, New Zealand is a bit different to the US in that we are a very easy going, overly friendly nation.

Wow, you have really done your research huh?

WOW!!!! Those stats on FNA's are HUUUUUUUGE!!!!!! in my case, the gastroenterologist isnt even ordering it so he has nothing to gain, he wants my GP to order one.... perhaps they just don't want to jump straight in to general anaesthesia for most?

OOp's 'what my bowels are doing on "THEIR" own! hehe sorry, stickler for grammar:)

Oow, another update since last night. I have been contacted by a top haemotologist who wants to see me immediately and order a CT/Bone Marrow Biopsy! She couldn't believe that at least a CT hadn't been ordered. I'm so glad things are finally getting somewhere:)

Stef-
No kidding, that's ... well I don't want to say 'great!' but it's probably the best thing. From the CT of course they should be able to see hot spots indicating cancer, if there is any. But you're still coming up short on a proper diagnostic tool, right? I think the bone marrow biopsy is because you're exhibiting B symptoms, which I think may often imply bone marrow involvement. If it's positive, I would guess that they could reach a diagnosis based on the cancerous cells in the marrow. While it might spare you another biopsy, as I'm sure you know, you don't want your bone marrow affected. It shoots you right up the ladder to stage IV, inviting the most intense treatment regimens in the process.

Either way, I'm glad a hematologist stepped in.

I gotta say, going off only your posts here, I don't detect a trace of fear. Just anxiousness. Or a strange kind of enthusiasm. Frankly I think I'd be the same way-- I don't overtly hate the unknown until it's made known to me that something is unknown, then I have to hunt it down and know it.

ross

Thanks so much for your reply Ross! You're a champ!:)

Oh i know exactly what you mean! She has agreed to see me tomorrow night and is actually postponing a personal engagement in order to see me. Such a wonderful woman! She is so astounded at the response i received from the guy i saw here.

Yeah, i am very anxious! I honestly don't even care about the diagnosis, i just want to KNOW!!! Maybe i will receive a diagnosis for my birthday:) Seems silly to get excited about such things huh?

Ok, sooooo The haematologist (whom is sooo lovely by the way) has pretty much ruled out hodgkins - no biopsies but CT scan of abdo, chest and neck which showed no masses or overly large nodes. So now i am doing a 24 hour urine (to rule out carcinoid syndrome), have had an MRI on my leg and am booked in for a bone marrow biopsy on Tuesday (eeeekkkk... not so thrilled about that one). So we will see what happens once those results come in, not sure where we will go from there if they all come back normal, but infection has been definitely ruled out as have autoimmune disorders (as much as they possibly can be). So still no answers...... i think this is definitely the worst time!!!! hehe. How are things with you?

Things are fine with me, I'm sorry to read about you though-- I mean the ruling out of HL is good, and infection, and some autoimmune disorders, but you're still in limbo. This is how modern medicine figures it out, isn't it-- a massive process of elimination. I don't suppose there's any other way, but still, it has to suck.

By the way I was reading in this month's Esquire that in the event of massive global warming in the next few decades that one of the best places to 'flee to' will be New Zealand. Reasons? "It's beautiful, it's got mountains and highlands" it has volcanic soil that fosters productivity, and "it's got almost no people."

Anyway sounds like a fabulous country!

Sorry, it had completely slipped my mind that you replied. I read it briefly when i was half asleep:)

Oh don't be sorry, we all have trials and tribulations to go through in life - it's what we get out of them that's important. I think symptoms are just magnified at the moment due to us having summer (night sweats etc.). Hehe, yes.....i think they should come up with a better, less time consuming process! There should be blood tests for everything;) We have had pretty much 2 weeks of public holidays over the Christmas/New Year period, thus i havent heard anything back yet.

How was your Christmas/New Year? Was santa good to you? hehe

With regard to your final paragraph...... NZ is an aMAZZZZZZZZING country! I highly recommend it:) The people are fab too! haha

Santa was Santa. Not much else I can say. New Year's eh. Yours?

So no word on your condition yet?

Ohhh, that's a bit disappointing! Maybe you will have to behave this year:) Mine was really quiet, in fact the first quiet new years EVER!!!!

No, we are still no further ahead. The haem was away over the holidays and only got back this Monday. She is a bit stumped over the fact that all my bloods are pretty normal. She is still going ahead with the bone marrow biopsy (to be next wed i think) and isn't ruling non hodgkins out just yet but says if the bone marrow shows nothing, there is nothing more she can do in her field at the moment. She is testing for malabsorption disorders also and thinks it may be worth seeing a gastroenterologist. I think regardless of anything else, they do need to find the cause of the fever as it's been going on far too long.... let's hope we get some answers soon!!!! hehe talk about frustration!!!!!

Sorry for the babble!!!! How are you doing???

I have been reading some of the posts and found that the similarities in opinion were too many to be coincidences. Summing it up...we do not trust our Doctors as much as we should be able to especially when it comes to life altering questions like: Do I have Cancer? I have had it and it spread, now 1 year out I have other issues and wonder if something is being overlooked. My Doc seems to be complacent when it comes to my concerns. He doesn't acknowledge my issues in regards to pain and insomnia and major swelling in my Lymph nodes. I am tired all the time and this could be related to lack of sleep however, add it with the immense ache and pain in all my body, I wonder if there is more to this? My best friend is telling me to go to another Doctor. She would have answers...I don't understand why they are not giving me a test or Ultra Sound or something just to make sure?

Thought I would check back in:) wow! This process sure is taking a long time - although the Christchurch earthquake certainly put a hold on things. The bone marrow biopsy came back negative, as did the test for TB, so the lung nodule needs to be reevaluated. My complement levels came back deficient which indicates there is definitely something very active (no kidding;) ). I'm still getting the petechial rash, unfortunately have not been able to have it biopsied as yet - due to one thing or another....HOWEVER..... the good news is, my nodes have grown (good news? Kind of!). My GP took one look yesterday and told me she is booking me in with a private surgeon for an incisional biopsy ASAP! YAY!!! maybe we will finally get an answer!!!!!! If that fails, we still have the skin biopsy and the immunologist for back up. Seriously, I've been sick for such a long time now, its hard to believe things are finally moving along.

How are you doing Ross?
Would love to hear from the rest of you also:)

P.S. Thanks for your input Debilynn - completely agree