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Mediastinoscopy or wait and re-image? - Lymphoma or ?

ssills
Posts: 1
Joined: Aug 2015

New member here that is interested in any guidance or advice from folks that have been down this road before.  Here goes:

I'm a healthy male, non-smoker in my mid to late 40s who has not yet been diagnosed (but not for lack of trying).  I'm essentially 'symptom free' now but what brought me in was an acute cough and hoarsness that lasted about 2 months along with a few weeks of fatigue heavy night sweats.  My initial chest x-ray was abnormal so a CT with contrast was ordered and the abbreviated results were as follows:

CT Results

Images demonstrate bilateral mediastinal and hilar adenopathy. Conglomeration of RIGHT hilar largest area of adenopathy measures 2.4 x 1.5 cm with secondary region measuring 1.4 x 1.1 cm. Largest region of LEFT hilar adenopathy measures 3.0 x 0.9 cm and 1.9 x 1.2 cm. Prominent subcarinal lymph node measures 2.3 x 1.4 cm. AP window lymph node measures 1.4 x 1.8 cm. Other mediastinal lymph nodes are present. No significant LEFT axillary adenopathy. Mildly prominent RIGHT axillary lymph node measures 1.8 x 1.0 cm. Supraclavicular lymph nodes are not appreciated. The central airways appear patent. No pericardial effusion.

Atelectasis at both lung bases. No pulmonary nodules. No infiltrate, edema or effusion. No pneumothorax.

** IMPRESSION **:
Prominent bilateral hilar and mediastinal adenopathy. No pulmonary nodules.

 

As a result of the CT, I had:

  • Extensive blood work completed (all within normal ranges). 
  • An Endobronchial Ultrasound (EBUS) Procedure performed with concerning nodes biopsied.  Adequate samples were retried during the procedure and all were negative for cancer and the findings "support the absence of a lymphoproliferative process."
  • A course of antibiotics to try and clear up any possible infection.  As mentioned, I've subsequently been symptom free.
  • PET Scan (performed last week; about 6 weeks after the EBUS procedure).   The result were an "Abnormal body PET/CT scan demonstrating mild to moderate level of hypermetabolic activity within the known multiple bilateral hilar and mediastinal lymph nodes of uncertain etiology."   See findings below.

~~ So that brings me to my question and the issue at hand.... ~~

My physicians are unclear on what is going on but the working diagnossis runs the gamut - Lymphoma, Sarcadosis, Lung CA or some type of non-descript infection. In terms of next steps, they've suggested two options:

  • OPTION #1: Assume this may be a blood test-negative atypical case of sarcoidosis (asymptomatic) - in which case they'd watch/wait with serial CT scans, OR
  • OPTION #2: Take the next step in procuring a more definitive diagnosis by proceeding with a mediastinoscopy (ie. general exam and take out a whole lymph node to get a better sense of tissue architecture and cell types.)

IF anyone has been down a similar road, I'd welcome your thoughts and insights.  Keep in mind that I'm symptom free.   Thanks in advance for your advice and insight!

 

PET FINDINGS:
Limited CT images of the brain demonstrate no gross abnormality. Evaluation of the brain parenchyma on PET is limited by high normal physiologic FDG uptake in the gray matter, which limits evaluation for metastatic disease. The images of the head and neck demonstrate expected FDG activity in nasopharynx, oropharynx and the vocal cords. Thyroid gland is
unremarkable. The images of the chest demonstrate moderate level of FDG uptake within the known multiple mediastinal and hilar lymph nodes ( CT 6/12 Conglomeration of RIGHT hilar adenopathy measures 2.4 x 1.5 cm with secondary region measuring 1.4 x 1.1 cm. Largest region of LEFT hilar adenopathy measures 3.0 x 0.9 cm and 1.9 x 1.2 cm.
Prominent subcarinal lymph node measures 2.3 x 1.4 cm. AP window lymph node measures 1.4 x 1.8 cm.). The maximum SUV measurement of these lesions range from 4.0-5.2. There is no hypermetabolic axillary adenopathy. No pulmonary nodules, interstitial airspace disease, pleural or pericardial effusion is seen. Scattered aortic atherosclerosis is noted.
The images of abdomen and pelvis demonstrate physiologic FDG activity in the liver and spleen with no focal abnormalities seen on the PET or CT. No retroperitoneal or mesenteric adenopathy. Gallbladder, adrenal glands and the pancreas appear unremarkable. Non-obstructive bowel pattern. No free fluid. No hydronephrosis. Kidneys, bowel and bladder demonstrate normal physiologic FDG activity. Scattered degenerative/arthritic changes are noted. Normal infrarenal abdominal aorta of normal caliber <3.0 cm.
There is no evidence of abnormal enlargement of the common iliac arteries.
** IMPRESSION **:
Abnormal body PET/CT scan demonstrating mild to moderate level of hypermetabolic activity within the known multiple bilateral hilar and mediastinal lymph nodes of uncertain etiology.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3294
Joined: May 2012

SSILLS,

I had just written about 1,000 words in reply to you when it vanished, so you now get the "shorter version."  My sister-in-law has very advanced sarcoidosis, and at first your symptoms reminded me of her history, except that that disease almost always centers inside the lungs, but you lack internal lung involvement.  I also do not know if enlargement from sarcoidosis shows positive for hypermetabolic activity on PET (something I would look up or ask a radiologist about).

Whatever you have, it is not currently aggressive.  If it is lymphoma, know that virtually all strains are very treatable, and most are 'curable,' although the work 'cure' is no longer used in lymphoma treatment; what used to be called ''cure' is now referred to as 'complete remission,' (CR) or 'no evidence of disease' (NED).

All writers here are assumed to have no medical credentials; what we give is layman's experience and insight. I personally have no medical training at all.

A few factors in your very thorough test results suggests lymphoma to me:   (1) The clustering pattern (localization) of the enlarged nodes, which is less common in infection; (2) the slight positive results on the PET (which could also be infection, of course); (3) your limited experience with night sweats.  Know also that age, general health, smoking or not smoking, all have no known relationship to who gets or does not get lymphoma. Young, old, fat, skinny -- it happens in equal numbers to all, although some strains are more common in males than in women.

Be aware that the following do NOT rule out lymphoma: (1) Normal blood panels.  I had very advanced stage III Hodgkins spread from my neck to pelvic area, and all the way across the chest, with concentrations of very large nodes (many golf ball sized) in the thoracic area, but had almost perfect blood panels at diagnosis, which came from a CT. (My WBC was slightly low.  What best tracked my disease was my LDH result. Be aware that blood work for cancer requires specialty tests like LDH and others that are NOT part of a typical CBC panel.) 

Many writers here were diagnosed with serious lymphomas with nearly idea lab results.  I cannot count the number of people here who were indefinitely treated for "infection," who later learned that they had serious cancers. (2) Lack of symptoms. I never had "symptoms," except for severe fatigue, which I did have. Also, I never "felt" a node anywhere, ever, either before or after diagnosis.  My family doctor could not feel nodes on a touch exam the week before my first CT.  You may want to Wilki the article "B Symptoms" regarding lymphoma.  Some lymphoma patients have the classic symptoms of itching, night sweats,etc., which is referred to as "B Symptoms"; not having these is simply referred to as "A Symptoms."

Between your proposed #1 and #2 next actions, I would take #2, and have surgical removal of one or more enlarged nodes.

You seem to have a great medical team which is actually trying to diagnos you; many people are not that lucky, and have to beg for tests to be run.  Some of your terminology suggests to me that you have some sort of medical training yourself, which will help you sort through all of this (few laypeople use the term 'etiology,' for instance).

Lymphoma is very treatable, if you have it at all, which is yet to be determined.

max

Don2088
Posts: 16
Joined: Aug 2015

Similar to you I am a 44-year old non-smoker, healthy, active, and I had zero symptoms. I had an ultrasound to check my appendix. It checked out but an abnormality was noted with a follow-up CT recommended. The follow-up showed the abnormality grew from 1 to 2 cm in over a year. I had perfect blood scans and zero symptoms, yet my doctor recommended surgery right away. I thought it was aggressive, but went with it. My surgeon went in to biopsy it and remove it if it was accessible. They were able to remove it and it tested positive for Hodgkin's Lymphoma. They didn't even refer to it as a lymph node until after the biopsy. In discussing the results with my oncologists, he was very pleased that the node was removed and biopsied. He said that "needle" biopsies are often inconlusive. I went to the University of Pennsylvania Hospital for a second opinion before treatment. She concurred with the opinion about the "needle" biopsy vs the surgery. In my case it seemed to have accelerated my treatment. I had surgery 6/29, the PET scan showed 4 hot areas presumed to be nodes with Hodgkins, and I had my first chemo treatment 8/10. It would have been sooner if not for the request for a second opinion. Given that you do have symptoms and the diagnosis can't be made, you may want to consider the more invasive testing.

Scharfschutze15
Posts: 12
Joined: Sep 2015

Hello ssills,

my wife was diagnosed with NHL in 2014 but we had a similarly difficult time with diagnosis beforehand and still have some doubts even now about the specific type and the diagnostic process.

Given your path report details, I believe my wife's current (excellent) oncologist would strongly recommned a full whole node biopsy, assuming one presents for excision. Ultimately, this is the only fully reliable method of formal diagnosis. The problem here, and the reason your onc may not be advocating this now, is that mediastinal nodes are often not easy to biopsy. Also, given the lack of imflamation of your pulmonary nodes and that there are really quite a lot of non-malignancy explanations for bilateral hilar lymphadenopathy noted in your PET path report, (https://en.wikipedia.org/wiki/Bilateral_hilar_lymphadenopathy), this might explain the slow movement, especially as you're largely asymptomatic.

That your bilateral hilar and mediastinal lymph nodes show an increased and abnormal metabolic rate isn't at all necessarily indicative of cancer being present. It can be indicative of infection or inflamation. As you likely are aware, the 'hypermetabolic' means those cells are metabolising more sugar than is normal for that type of cell. This is important in terms of cancer diagnostic because cancer cells have a much higher metabolic rate than healthy cells, thus they "light up" the PET scan.  Problem is, many other things can cause this. This is why, from my limited and non-professional medical knowledge, a full node biopsy is considered the only reliable way to rule out the presence of cancer.

Have you talked about the viability of a biopsy on the nodes showing as abnormal with your doctor? It may be one or more are more surgically accessible. I know from my wife's experience that they like to avoid biopsy on many nodes, if possible, given the difficulty of accessing them. It may be they want to wait and see if other nodes show symptoms. Did your initial symptoms (the cough, hoarseness, night sweats, etc) go away? Lymphona, for example, doesn't simply go away. There are indolent forms that move slowly and show symptoms intermittently, I think, but this might suggest another cause if the symptoms you originally reported disappeared.

Might consider a second opinion with a different doctor or perhaps ideally, oncologist at a major cancer hospital, not a more general medical center. Best of luck.

 

 

Maxieboy
Posts: 1
Joined: Oct 2018

I have bronchiectasis and have had a five week exacerbation after accidentally inhaling burnt plastic fumes. I had an Xray that showed plenty of problems so next was the HR CTscan which my Dr. stated it was the funniest (not haha) ctscan he'd ever seen. This is what it said There is extensive mediastinal adenopathy, most pronounced within the precarinal region measuring approximately 1.2 cm in negative. Limited evaluation for hilar adenopathy without intravenous contrast. Pulmonary Dr. said it appeared I had a case of double pneumonia (have had both vaccines for pneumonia) and it showed enlarged lymph nodes in my lungs. I had a non stop productive cough for 5 weeks. I however had just started a fever of 101 and took tylenol and it went away. So my Dr. prescribed levaquil (terrible stuff) 750 mgs a day for 14 days. Next step was a ctscan with contrast. I don't understand the results but he said there was probably a 30% improvement, of what he didn't say. I had a sputum test that showed <10 WBCS SEEN
10 to 25 SQUAMOUS EPITHELIAL CELLS SEEN
MODERATE MIXED BACTERIAL FLORA  

He said the sputum results were "normal"

 

My concern is his lack of concern about the enlarged lymph nodes and the rest of the Ctscan results which I don't understand I'm not a radiologist just a research nut.

 

I am worried about the possibility of having lung cancer and my Dr. lack of concern. Do I have a reason to be worried. Help

 

 

Thanks in advance

po18guy
Posts: 994
Joined: Nov 2011

There is no indication of cancer, and every indication of infection. Bear in mind that infection can be viral, bacterial or - especially in the lungs - fungal. Antibiotics may do nothing. If it responds, GREAT! Cancer does not do that. Plastic fumes? Even if it was a type that causes cancer, it takes substantial exposure over months, even years or decades to produce a cancer, and then the cancer takes weeks to months to progress.

As well, lymph nodes are not cancer detectors. They are like mini-lungs of your immune ysstem, breathing in and out as lymphocytes gather and are sent out in response to the billions of infectious pathogens which normally enter our body on a daily basis. If those lymph nodes did not react and enlarge, you would expire within a week or so of massive infection. 

Trust the dorctors. If you simply cannot, consider that you may very well suffer from anxiety - yes, anxiety. It is rampant in our culture. One in five suffer from it. Online researchers especially. Doctors do not seem to mention it, but it is obvious in many cases and is 100% treatable. 

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