Friday, May 18, 2012

Is it Lymphoma?

I AGREE TO USE MD STAT FOR EDUCATIONAL PURPOSES ONLY, THAT NO DOCTOR PATIENT RELATIONSHIP IS FORMED BY MY PARTICIPATION IN THIS EXCHANGE, AND I UNDERSTAND THAT MY QUESTION AND ANSWER(S) WILL BE POSTED ON THE WEBSITE AND WILL BE VIEWABLE BY VISITORS TO THE SITE.: Yes, I agree. Hi doctors, I  have asked a question before (hypokalemia mystery). I have no problems with my potassium now,  no potassium supplements! I have a new problem that I am worried about. I am concerned about cancer, lymphoma. The past 1.5 years I have had siginificant weight loss in Oct 2010 I weighed 210 pounds, in September 2011 I weighed 150 I now weigh 130.  At first I enjoyed the weight loss, but people have started to make comments about how I've lost too much too fast since I am doing nothing at all to make me lose the weight. I looked up causes of unintentional weight loss and a majority of them I have been tested for recently. One that stood out was lymphoma, now I'm a bit scared because some symptoms I've had match lymphoma, I itch all over, allergy meds don't work and my skin isn't dry but I scratch so much at night I make myself bleed. I have always been fatigued and have generalized weakness. 2 months ago I got the flu and did prednisone for a week and a sinus infection so amoxcillin for 10 days, since then I have been running fevers on and off every 3-4 days & the fever usually ranges from 101-103. 2 months ago I found a firm painless lumundemanding my left jaw. I saw my doctor 2 days ago and she wasn't concerned. She felt the lymph node under my jaw and found one enlarged in my neck, armpit & groin. She said it was a cold virus and that we should just recheck my weight in 1-2 months. The same day I saw my neuro-opthamologist (see her b/c of different pupil sizes). When I told her about my symptoms she was concerned and kept asking if my doctor was ordering imaging studies. She thought my pupil problem may be horner's syndrome and that a mass in my chect was causing my pupil differences but the test she did was negative. I just have this gut feeling that this may be cancer. I'm concerned because it seems like at least for lymphoma it doesn't show up in the blood unless it's greatly progressed because it orignates in the lymph system. Gender: Female How tall are you (feet and inches)?: 5'3'' What is your weight in pounds?: 130 How old are you?: 23 How long has this been going on?: More than a year Check all symptoms you are currently experiencing: Fever Weight Loss Describe associated symptoms not listed above: all over itching, fatigue, weakness, swollen painless lymph nodes fever is always between 101-103 I only take tylenol for if it I get really uncomfortable. When I get them I usually notice it because I've been really uncomfortable all day and hot, even though everyone else is around me is not hot at all or someone touches me and the comment on how hot my skin feels. I haven't had any night sweats, but I have had some changes in my night time sleeping habits, I used to always need to have at least four blankets on my bed because I would get so cold at night and I can't sleep unless I'm warm but now even one blanket on my at night can been to warm and I find myself kicking it off too hot with it. Also with the weight loss I've really never been below 150 at least ever since high school I've always been a bit overweight with my lowest weight being around 150 pounds, so even though I'm still at a normal weight for my height it's concerening to be because this has never been a normal weight for me. The weight loss is concerning, but I can't say that I am not pleased with it as well, really I think anyone would be. What have you done so far to remedy this condition? Please include tests and relevant studies here. : CBC with differential (normal) My docotr said if it was cancer it would show up here, but I'm not completly conviced because lymphoma at least originates in the lymph system. Comprehensive metabolic panel (normal) Thyroid normal not diabetic The only 'abmornal' results were barely out of range, BUN was 6 mg/dL, Anion Gap was 6mEq/L but those are always just a bit low like that for me, have been for years. I eat normally, nothing has changed in my diet, I really don't exercise. Please list any chronic medical problems and also list any prior surgery: Hemicrania Continua: treated with occipital nerve stimulator implant Neurocardiogenic Syncope: Loop recorder implant and explant surgeries. Inappropriate Sinus Tachycardia 3 EP studies Check all conditions present in your immediate family... : Asthma / Lung Problems Cardiac Disease Diabetes Hypertension Stroke Please list any medication allergies that you have : : nkda Please list any medications you are currently taking (and dosage if known) : Bisoprolol 10mg 1x a day (for inappropriate sinus tachycardia) Zoloft 100mg 1z a day (for neurocardiogenic syncope) Multi-vitamin 1x a day Nasacort AQ 55mcg Clatrin 10mg 1x daily Ambien CR 12.5mg 1x day When was your last menstrual cycle?: 3 weeks ago Are you currently using or do you have a history of tobacco use?: No Are you currently using or do you have a history of illegal drug use?: No Please describe your alcohol consumption :: Occasionally HOW QUICKLY DO YOU NEED THIS TO BE ANSWERED?: As soon as possible What are the chances of this being lymphoma or another form of cancer? Am crazy for fearing that I may have cancer? Should I seek a second opinion, if so how is the best way to go about doing this? My health history is abit extensive and can make starting over difficult. Can I just wait it out with my current doctor or ask for more testing now? If more testing, what kind?

10 comments:

space doc said...

Dear Ms:--Worried about lymphoma:

I thiunk your concerns about a possible Lymphoma are well founded.

In your age group one of the most common lymphomas is Hodgkin lymphoma. It is usually accompanied by painless lymph node swellings--often in the neck and certainly can involve nodes under the arm (axilla) and in the groin.

Fever and itching (pruritus) very common along with weight loss. Night sweats are commoon, ( but just may not have occured in your case.) Fatigue also quite common.

Lymphomas do not show up on routine blood tests (sometimes the LDH on a blood chemistry can be elevated)

The diagnosis is made by getting a biopsy of one of the swollen lymph nodes. I think this something that you should get!!

Hodgkin lymphoma usually has a good prognosis for cure depending on how extensive it is.

An oncologist would be the specialist to diagnose and discuss treatment regimins.

You certainly can discuss this with your current doctor, but I hope you could get referred to an oncologist without too much delay.

Best of Luck!! It would be great to hear how things turn out.

All our best! Space Doc.

worried about lymphoma said...

Thanks for the quick response! I contacted 2 cancer centers near me (one I am still playing phone tag with) but the other one the lady I talked to seemed concerned about my symptoms, but could not offer me an appointment to see an oncologist without first getting a diagnosis or a test result idicating a type of cancer. She encouraged me to talk to my current doctor though about not waiting and doing some testing now. I did just that and I now have an ultrasound of the neck scheduled for Friday. I'm not so sure about this because at this point it seems like this won't be too helpful because it can't confirm nor rule out lymphoma, it will only tell just how large my lymph nodes are. I guess I'm just concerned that she isn't quite taking my concerns sersiously and ordered this test only beecause I pushed for something more, and that it may not be the best test for me at this point.

Because of these mixed feelings I'm having here I've also made an appointment to see another internal medicine doctor for a second opinion, to see what they think and what they recommend.

An further advice is greatly appreciated. I've also had some mild night sweats the past two nights, which of course has me even more concerned. I think really the only way I will be able to stop worrying about this is to either diagnosis (worst case) or rule-out lymphoma, and it looks like the only way to do that would be with a biopsy, which seems a bit invasive.

space doc said...

I agree that an ultrasound will not be likely to give a definitive diagnosis.

I hope your second opinion from another internal medicine doctor wil lget things moving for you.

I wouldn't worry for a minute about getting a lymph node biopsy---sometimes a fine needle biopsy can br done in which a very small needle will aspirate some of the material from the node, but this is not as good as a small incision (under local anesthesia so you wont feel anything) that can get a better sample and be more definitive.

You are certainly on the right track to figuring this all out. Again my feeling is that this may turn out to be a lymphoma, but so often there can be an excellent result especially with a Hodgkin variety of lymphoma.

I'm hoping for the best!---Love to hear how things turn out.

Good Luck!!
Space Doc

worried about lymphoma said...

I saw an internal med doc last week for another opinion. She said that an untrasound would not be her choice of a test to do next and recommended a CT of of neck/chest and abdomen be the next step. I also have an appointment to see an oncologist on Tuesday. She was hoping to get the scans done before that appointment but I needed to get insurance preapproval and with the holiday weekend I don't think the scans will happen before that appointment. She did mention that it could be an absorbtion issue and that I may need to see a GI doctor and have a scope done, but first they are going to check for lymphoma. Things at least seem to be moving in the right direction right now.

MDSTAT_ER_DOC_1 said...

Please do keep us posted on your progress. This is unlikely to be Horner's syndrome. The "Horner's syndrome triad" is, according to the Mayo Clinic, "Typical symptoms of Horner syndrome include a drooping eyelid, decreased pupil size and decreased sweating on the affected side of your face. " As I read your symptoms I see that you are concerned about pupil size differences and that some doctors have commented on this. As an ER physician I can tell you that this MIGHT simply be that no one has looked closely before at your pupils and that you have 'anisocoria', congenitally unequal pupils since birth, as eye findings like yours, IF related to cancer, are usually associated with severe illness. Now I'm off track though, and look forward to a good report from the physicians who are looking out for you.

space doc said...

Thanks so much for the update!

Sounds like you are really moving in the right diretion.

C-T scans seem like a much more informative way to go

I think the oncologist can be very helpful even if the C-T scans aren't immediately available and he/she can advise you on biopsies etc.

Got our fingers crossed! Good luck with everything!

Space Doc

space doc said...

Just looking back over several of the questions we have dealt with and couldn't help wondering how everything turned out for you.

It would be great to hear from you.

All our best!!

Space Dooc

worried about lymphoma said...

Things are still happening... they have confirmed that I do not have lymphoma. The CT of neck/chest/abdomen was all normal, some enlarged lymph nodes were seen in my neck but not abnormal enlarged. The CT also showed inflammation, most likely sinsuitis in my right maxillary sinus and they said that would explance the lymph nodes in my neck. The one that was the biggest and most worrysome ended up not being a lymph node, but a cyst.

So given that they determined that it's not lymphoma they moved on to have me see a GI doctor, wondering if it could be an absorbtion issue (because of my past history with hypokalemia, and problems with my vitamin D level despite being out in the sun for at least an hour 5 days a week. For the vitamin D I have been taking 50,000 IU twice a week for threevmonths after I finish them my levels are right back up where they sould be or even higher than they should be. Which my one primary care doctor didn't seem phased by, but the one I saw closer to my home was concerned because that should not be happening to someone my age, and gets enough sun exposure.

When I saw the GI doctor, everyone there was shocked by the large amount of weight loss I have had (with my other doctors it was more like, oh, okay you lost some weight) With the GI doctor it was like WOW you lost this much weight?!?

The GI ordered a EGD and Colonscopy which I had done a few weeks ago, both were normal, he took 6 biopsies for different areas and all of those came back completly bengin. so Now the GI doctor wants me to have a small bowel follow through, so I am having that next week tuesday.
Although I'm not quite sure what it will show them when the abdominal CT didn't show anything.

On monday I am meeting with the NP who will be my primary for when I am at home, the doctor I orginally saw to start all this doesn't follow patients she is just a fill-in so she referred me to the NP I am seeing Monday.

I'm just worried that my care is getting very fragmented here. I also find it strange that EVERY doctor after I meet them thinks I have an auto-immune disease.But for the most part all the testing comes back normal I've only had the one test out of normal, double strand DNA test was borderline positive, which from what I've head means nothing.

I don't know,it seems everyone automotically thinks of these auto-immune diseases when they first meet me, and always makes since but when compared the lab work it's a dead end. It feels to me like something may be missing here.


anyways I'm expecting the small bowel followthrough to come back normal, then I think my GI doc will want to do a liver biopsy because he was concerned about the possibility of having a autoimmune liver disease, maniy because of my symptoms now and especialy the itchy.itcy, legs/body

Who knows what is in store for me next. Sorry about and grammar, spelling and wording errors.... I saw this right before bedime and just had to respond and my sleepy ambien flipping brain are doing their best!

Anonymous said...

Hi, Thanks so much for your help with my questions, I've tried to post an update in the comment section of my last post but it does not seem to be going through. Here is an update on what has been happening.

The oncologist is confident that that I do not have lymphoma after a normal CT and normal LDH blood levels. Some enlarged lymph nodes were seen in my neck but not abnormally enlarged. The CT also showed inflammation, most likely sinusitis in my right maxillary sinus and they said that would explain the lymph nodes in my neck. The one that was the biggest and most worrisome under my jaw ended up not being a lymph node, but a cyst.

So given that they determined that it's not lymphoma they had me see a GI doctor, wondering if it could be an absorption issue (because of my past history with hypokalemia, and problems with my vitamin D level despite being out in the sun for at least an hour 5 days a week. For the vitamin D I have been taking 50,000 IU twice a week for three months after I finish them my levels are right back up where they should be or even higher than they should be, but three months later they drop right back down again. Which my one primary care doctor didn't seem phased by, but the one I saw closer to my home was concerned because that should not be happening to someone my age who gets enough sun exposure.

When I saw the GI doctor, everyone there was shocked by the large amount of weight loss I have had. (Which I have now lost about another 10 pounds so I am now down to 120).

The GI ordered a EGD and Colonoscopy which I had done a few weeks ago, both were normal, he took 6 biopsies for different areas and all of those came back benign. so Now the GI doctor wants me to have a small bowel follow through, so I am having that on Tuesday. Although I'm not quite sure what it will show them when the abdominal CT didn't show anything.

The GI also thought I may have an autoimmune liver disease so he ordered some blood tests my liver function tests were all normal so were the tests he ordered looking for signs of autoimmune disease (IgG, IgA, IgM, smooth muscle antibodies and ANA) these also were all normal.

I also find it strange that EVERY doctor after I meet seems thinks I have an autoimmune disease. But all the testing comes back normal I've only had one test out of the normal range, double strand DNA test was borderline positive, which from what I've head means nothing.

I don't know, it seems everyone automatically thinks of these autoimmune diseases when they first meet me. Autoimmune diseases seem to fit most of the time, I think because I have such a wide variety of problems. Lab work always comes back normal, but I can help but feel something may be missing here though I think I've had probably just about every blood test possible for autoimmune diseases.

MDSTAT_ER_DOC_1 said...

i understand your frustration with the autoimmune disease conundrum. but it's nice that you have had lymphoma so thoroughly ruled out.

i wish i could pierce the veil and make sense of this for you, but i can't.

i can, however, explain why 'everyone thinks 'autoimmune disease' ' when they see you. the reason is that the autoimmune diseases, unlike most, produce a variety of symptoms in a variety of organ systems. this is what you have, a variety of symptoms in a variety of systems.

it used to be that tubercolosis was the culprit in cases like yours, as, prior to good drug therapy for TB, it could do just about anything, anywhere in the body.

it seems that you are in very good hands indeed with the doctors who have you under their care. and autoimmune diseases are not simply diagnosed, unfortunately.

please keep us informed as to your progress.

space doc is on vacation for a bit, but i am here.

be well