Non-Hodkins Lymphoma & How Long to Diagnosis

[mystpete]

How do I convince my Doctor that I need more blood work or biopsy?  Thyroid nodule w/FNA - benign. Spleen pain - ultrasound normal. Lymph node in groin & right ear swollen & hard. Night sweats, nausea & vomiting, itching (which is driving me mad, coocoo crazy!), low grade fever w/cold sweats & chills during the day & the topper is pain with alcohol...my favorite sin!  Current bloodwork only show low hemocrit,  hemoglobin & iron with high RDW.  I am just about at the end of my rope & all the Doctor can say is that she wanst to watch it until something else shows in my bloodwork??!!

[Ken_PA]

Well, you're lucky to have such a motivated doc. How about getting a sono of the groin node (since it's near the surface), to look for signs of being normally 'reactive' (having a fatty hilum & normal architecture, e.g.) as opposed to the way nodes get changed (architecture is effaced) by lymphoma?

[mystpete]

Thanks for the link, but I had already peeked at most of them in the past few weeks & I did recently have an ultrasound & that is where they found an enlarged node next to my femoral artery in my upper thigh.  My appt. with the Dermatologist went well.  She spent almost 2 hours with me, asking a detailed history & looked me over with a fine tooth comb.  She didn't know what to make of the rash & could not give a diagnosis, but did ask that I repeat the CA125 blood test again.  I also had a follow up with my Gastro Dr. post colonoscopy, but again, I was suffering from nausea that afternoon & was unable to make the appt.  To my surprise, the Dr. called me, to check & see if I was doing ok.  After I filled her in on my last 2 weeks & new symptoms, she became quite concerned & asked why my GP had not ordered a follow up ultrasound or cat scan to take a look at what was pressing on my cecum, which they saw during my procedure.  She stated that obviously "something" was going on with my body & that she would put in the order herself & give me a call when the referral came in, hopefully this week.  Thanks for your concern & hope y'all have a wonderful week!  

ps...I have been have thyroid testing since April 2012 & values not low/high enough to warrant meds.

[Ken_PA]

Hi, in here there are some long threads of people with bad reactions to alcohol, yet they do not (most likely not) have Hodgkins Disease:
http://www.medhelp.org/forums/search/139?utf8=%26%23x2713%3B&query=alcohol

I'd ask for a sono of one of the enlarged nodes (if they are nodes). The presence of a 'fatty hilum' pretty much means not-cancer.

Do you ever get tested to eliminate intermittent hyperthyroid as a cause of the skin condition?

How did your appointment with the derma doc go?

[mystpete]

Called around last week to try & get an appointment with an oncologist or hematologist, but they all stated that I had to have a diagnosis before they would schedule an appt. for me?!?  In the mean time, I did see a new family MD & his nurse practitioner that came highly recommended & after 3 visits & $420 dollars & was given a steroid shot for the itching, told to quit drinking alcohol if it was causing pain (really, duuuhhh!!) & to quit smoking & they would see me again in January! Over the weekend the nausea started again & some weird skin rash on my neck, arms, face & hips.  They don't itch, maybe thanks to the steroid shot, but they are super sensitive & burn like heck.  So after much hypo-googling & I found that lymphoma can present on the skin, cutaneous B-cell & T-cell.  Strange, I never dreamed of such a thing!! Found a cutaneous lymphoma specialist at Moffit, but he must be a "Superdoc", because he didn't have an appt. until Jan 2014.  After many tears & much frustration, I just started calling any dermatologist
that came up on my web search, until I could find one that could see me this week.   Wish me luck, as I am headed to see them tomorrow & I pray they listen & are inquisitive enough to figure out what could be my "monster".  Hope everyone is having a terrific Tuesday & thanks again for all of your help!

[Mochadelicious]

Seems to me that biopsy of your enlarged nodes behind the ear or groin area would be the next step.  Biopsy of swollen nodes is the ONLY definitive way to diagnose lymphoma.  Lymphoma doesn't always show up in blood work...it depends on how extensive it is.  This happened to me.  I was diagnosed with lymphoma in 2010 but my blood work was completely normal.  Once a biopsy of the lymph nodes confirms a lymphoma diagnosis, CAT and PET scans can help determine staging (or where lymphoma is found in the body).  This will help determine your treatment options.

I agree that a second opinion would be a good idea.  See if you can get in with a hematologist or oncologist.  Ask about the possibility of lymphoma and having a biopsy done.  If they say "but your blood work is normal" remind them that you heard the only way to know for sure is with a biopsy and you have several other symptoms that seem to point to lymphoma.  Sometimes you have to be a little pushy but even if the biopsy comes back okay, at least you will have peace of mind.  Good luck and please keep us posted.

[mystpete]

An ER Doctor was the first to mention it to me back in February.  My Gastro Dr. also mentioned it & just last week my primary Dr. told me, "My husband died from Lymphoma & sometimes it takes a long time to diagnose."  I was just so appalled & confused that she even brought it up, but yet refuses to do any further testing.  I've had a colonoscopy & endoscopy, both of which found nothing. Thyroid levels checked, cervical & endometrial biopsies, CA125, & a chest xray, all normal.  They seem to have no problem writing me new scripts every month to help with the nausea, itching & iron anemia, but don't seem to concerned with the initial symptoms & what might be causing them.  I finally decided yesterday that I had had enough & will be seeking a second opinion.  Please, can you tell me how long it usually takes for Lymphoma to show in bloodwork & what are they looking for or the length of time it normally takes until a definitive diagnosis?  Thanks so much for your concern & hope y'all have a terrific Thursday!!

[Mochadelicious]

Have you expressed your concern of lymphoma to your doctor?  Yes, you seem to be having some symptoms that may point towards Lymphoma, but you also have a few symptoms that don't seem to fit.  The nausea, vomiting and daytime chills are not the usual symptoms doctors see with Lymphoma.  Has your doctor thrown out any other possible causes?  Most doctors don't take doing biopsies lightly and won't do one unless they really think there is good reason to do so.  You could always get a second opinion from another doctor.