I'm new here, and like many others, looking for insight from other's experiences. I noticed a small (pea sized mass) next to my left submandibular lymph node when running my hands along my neck in November. I made an appointment to see my PCP where he told me it didn't feel like lymphoma, but he wanted to start on one end of the spectrum and work our way towards cancer. He prescribed me a broad spectrum antibiotic to take for 10 days- no change. Went back for a check up where he then referred me to an ENT. He stated that he wanted me to tell my ENT to do some sort of image testing &/or a biopsy. I shared all of this info with the ENT whom I saw the following week. I had an ultrasound the next day. His office called me a week later stating that the doctor wanted me to have a ultrasound guided FNA because he saw a "sickness" on the left side that he didn't see on the right. That was late February. Since then I have discovered several swollen lymph nodes. It's been a gradual discovery because I've been checking here and there. The FNA came back reactive. Just met with the ENT this week to go over the FNA results and discuss my current symptoms. I had a bout of night sweats back in December/January where I would soak through my PJ's and sheets, having to change and sleep on a towel (didn't want to wake my hubby up to change the sheets). I also broke out in an itchy rash in different parts of my body in Feb that lasted for about 2 weeks. I haven't had either since. I've also noticed swelling on the left side of my throat, making it somewhat awkward to swallow at times; I'm assuming is a result of the growing lymph node impeding on my throat. My ENT felt my lymph nodes and immediately stated, "oh wow, those are large and hard". I told him that I had found numerous ones in my neck, near my collar bone, and groin. He stated that he's concerned that it's lymphoma and the state of my lymph nodes "alarm" him. The mass originally in question remained the same size after the FNA, although my lymph node (which I assumed was not attached) has nearly doubled in size in 2 weeks, to the point where you can barely feel the hard mass. My ENT informed me that it is all part of the same lymph node, but it appears that the hard mass is a calcified part of the lymph node itself. I am now awaiting insurance authorization for a CT Scan & Excisional biopsy. He did everything I wanted him to do, as I've been reading on the boards here. My question is, is it typical of Lymphoma to have my lymph nodes growing so rapidly, and popping up in multiple locations (ranging in size from a pea to a golf ball)? Did anyone have similar symptoms and have the biopsy results come back negative? If so, did you push for more biopsies or see an Infectious Disease Specialist (my ENT suggested that be the next route if this comes back negative)? What was your outcome? Any and all information is greatly appreciated. I'm a mother to two young girls, and this is all a little shocking to me. Trying to remain positive and optimistic, but there's still that little voice in the back of my mind whispering, "what if?".... Hoping the authorization goes through quickly so we can push forward, no matter what the results are. (Learning to be patient through all of this!).
Hello. I am so sorry that you are going through this as well all here know what it is like. Your doctor is doing everything right. Most of us find that FNBs are pretty useless in trying to diagnose lymphoma and the only definitive way is by a surgical biopsy of a node or tissue. If you do receive a diagnosis of lymphoma please remember that so many of them are so highly treatable and stages really don't matter much with the bulk of them either, not like with solid cancer tumours. Lymphoma is a blood cancer so it can go anywhere in the body and chemo usually zapps it pretty well.
If you do get a diagnosis we are here for you.
At the moment all we can do is support you through this horrible and frightening time of waiting for tests and their results. It does our heads in with all the what ifs.
Good luck and best wishes to you.
Aussie, age 58
1987 CIN 111. Cervix lasered, no further problems.
Years of pain, bleeding, women's plumbing problems. TV ultrasound, tests, eventual hysterectomy 2007, fibroids in lining of Uterus.
Dx Peripheral T Cell Lymphoma stage 2B bulky, aggressive Dec/09.
6 chop14 and Neulasta.
Clean PET April/10, 18 rads 36gy mop up. All done May 2010
Iffy scan Nov. 2011. Scan Feb 2012 .still in remission.Still NED Nov 2012.
Discharged Nov 2014.
Unfortunately, you are fishing for reassurances that we are not qualified to give you. The only advice I can give is to go through with the biopsy, and meet whatever the result of it is head on.
Good luck. Hopefully there is a benign cause that can be found, but if it is lymphoma, then we will be here for you.
My Story: http://cancerforums.net/viewtopic.php?t=11396
Diffuse Large B cell Lymphoma
Stage 1AE (localized in colon)
Began six cycles of R chop 21 3rd Dec 2008
Finished R chop 21 Apr 2009
Complete remission as of May 2009
Confirmed April 2010
Be your own advocate and press for answers, since at least one medical person is alarmed. No one else will advocate for you as well as you will, so you have to do your own work there. Since this appears to be quite a bit more than the usual "I found a swollen node" type of concern - especially since you do not have (or did not mention) symptoms of viral/fungal/chronic infection or auto-immune disease, and with the nodes popping up as they are - I would ask for everything to be expedited. If it is not a malignancy, you will have your answer more quickly. If it is, then treatment may commence sooner. Either is good, in the long run.
07/08 DX PTCL - NOS, 4B >50 tumors + BMI
08/08-12/08 4 cycles CHOEP + 4 cycles GND
03/09-06/13 Clinical trial of Romidepsin. NED for 64 (28 day) cycles
07/13 Second relapse. Auto-immune symptoms
08/13 Romidepsin increased. Failed 02/14
09/14 Third relapse
10/06/14 One cycle Belinostat. Ineffective
10/13/14 AngioImmunoblastic T-Cell Lymphoma also found
10/25/14 Trial of Alisertib (MLN8237). Failed 01/05/14
01/12/15 Belinostat resumed. Failed 02/23/15
02/24/15 Pralatrexate started. Failed 04/17/15
04/09/15 Gene mapping reveals both PTCL-NOS and AITL
04/22/15 Experimental Bendamustine/Carboplatin/Etoposide (TREC) started.
06/04/15 Stage 4 > stage 0 NED once again.
"What is faith? It is that which gives substance to our hopes, which convinces us of things we cannot see"
Thanks everyone. I really appreciate your input. As it stands now, I'm scheduled to have my CT Scan tomorrow. My surgery should get scheduled tomorrow as well. The imaging place got me in the next day, which was great news! I thought I was going to have to wait another week or two, just to get in. I've been itching again, and dealing with a somewhat ongoing fever. My specialist put me on antibiotics for the second time since December to make sure it's not some sort of infection. No change occurred after 7 days of meds. I started running a low grade temp (99-99.5). It went on for 4 days, then went away for about 4 days. Now it's back. Is this a typical symptom? Hoping they're able to schedule my surgery soon. Thanks again everyone! You all are so incredibly supportive of one another.
Keep in mind that antibiotics only work on bacterial infections. If you have something viral or fungal going on, antibiotics probably won't touch it. That said, your description does seem troubling - the sooner you get through the CT, and get a real biopsy, if indicated, the better.
DX May 2010 fNHL - G1, S4
TX - Clinical Trial through Fred Hutchison Cancer Research Center (U of Washington)
R-CHOP Induction / Bexxar consolidation / 4 yrs. quarterly Rituxan maintenance
Consolidation completed Dec. 2010 / Remission declared Dec. 2010, PCR-Negative (Molecular Remision)
Completed last Rituxan, March 2015 - Remission continues (4 years and counting....)
I had my excisional biopsy yesterday and all went well! My original node in question had been waxing and waning, but my ENT was still pushing to remove it. I had another node pop up below my ear, right behind my jaw in the three weeks between my last appointment with my ENT and my pre-op appointment with my PCP. My PCP said that he's very concerned and wants to know what's going on, but did not confess what he felt I might have. At the time I was frustrated, but since then I've come to appreciate it. I'm trying to move forward with a clear frame of mind, and I think that might mess with me more. However, knowing that he is concerned, concerns me. He also did a chest X-Ray at my pre op and said that everything looks fine. He took a SUPER quick glace at it before he ran off to lunch. The only reason he did it was because I told him about a dry cough that comes and goes. I had my CT scan with contrast and never heard back from my ENT, except to tell me to bring the disc by his office. I assumed no news was good news??? My procedure went well yesterday- he even expressed to my husband that my node appeared healthy and would be surprised if it was cancer. That's great news, but my symptoms speak otherwise. Of course, I would LOVE a negative test result, but I just don't see why I would have lymph nodes popping up in different parts of my body and at such a rapid pace. I run a low grade fever every night, super lethargic and itch like crazy. We meet with the ENT on Monday to go over my pathology results. Has anyone had a physician tell them that everything appeared healthy, and was in fact cancer? If it comes back negative, then the next stop would be with an infectious disease specialist. I'm just afraid of getting misdiagnosed. I do plan to send it off for a second opinion no matter what the results.
Found another lymph node in my groin today. So frustrated, and I don't know what to think. Hopeful the doctor is right when he said that it looked healthy, and he would surprised if it is cancer. But my symptoms are hard to ignore. Hoping we get some clarity when we meet with the ENT tomorrow.