Well, I think I got good news on Friday He said everything appears to be benign at this point but we need to watch. He said most of the cervical nodes were about .1mm smaller than what he wants in order to worry about them. They lost my bloodwork somehow, so I had to redo that. The one thing that is bothering me is that not only did he not let me see the ct scans, he hasn't actually seen the ct scans.... Is that normal procedure? As he was walking into the room for my appointment, the girl in the office handed him a fax of my notated radiology results that had just come through. It was 2 pgs of tiny writing and he didn't even read it, just pointed to a couple things on it (I couldn't see from where I was), commented that I have ovarian cycts as well and told me to come back in a week. Is he just buying time to look at the scans? or will he look at them at all? I tried to get a copy of my results to read them myself and maybe have someone else look at them, but they weren't even in the system so I couldn't get them yet. I'm guessing everything is good because he didn't come right out and say "you have cancer." And because he said everything "looks benign." That means I'm out of the woods, right? I asked why I have the knotted up lymph nodes and he didn't have an answer. I asked about the fevers and he said I don't have a fever. I told him to look at the check-in paper and it was 101 while I was there so he gave me Augmentin. Should I trust this guy knows what he's doing, since he's an oncologist/hemotologist? Why does he want to see me back so soon if there's nothing going on? I had expected he'd send me back to my PCP. I'm not panicked anymore, just kindof confused by my appointment.
So far you have no real answers. A CT scan usually needs to be read by a pathologist, who then reports the results to the requesting doc. So he should have seen the executive summary report. Hopefully the doc accurately conveyed the results. But you should get a copy of the report summary (you don't needs all the pictures).
It seems that he did not rule out an L&L issue, but rather is employing the "watch and wait" approach. This is common when the diagnosis is elusive.
Did you really mean the nodes are .1mm too small to be an issue? Even 1 mm difference is very small in node size terms. That seems a bit odd. If the nodes were .1mm (or even 1mm) bigger then he would worry? Odd.
You have some issue going on, and it is playing "hide and seek" right now. Maybe it is an L&L issue, and maybe not. You don't know either way right now. Often lymphoma does not present itself in a way that allows easy diagnosis, as I said in previous postings. That is true of some non L&L diseases, also. Sometimes it can take a while for a diagnosis.
You need a new list of questions. Suggest you ask:
1) What are the diagnosis possibilities the doc is pursuing?
2) Does CT scan "looks benign" mean the doc believes it is definitely not an L&L issue? Is a CT scan of lymph nodes truly a definitive test? Or is this a "watch and wait" strategy?
3) Is your spleen normal size? Liver? Anything else not normal?
4) What further testing is needed for a diagnosis?
Also, I would ask for the copy of the CT report and all test reports (you cannot be refused when asking for test result copies).
Okay folks time for another round of Mystery Diagnosis!! The requested detail, Mr Trey....
Bilateral parotid and submandibular glands are normal in appearance.
A 6mm round nodule is noted within the left thyroid node. The thyroid glad is otherwise unremarkable in appearance. (my note here: thyroid blood test was normal)
Enlarged bilateral jugulodigastric nodes are identified. Left jugulogastric node measures 15 x 11mm in size. Right jugulogastric node measures approximately 10 x 10mm in size. Additional internal jugular nodes are seen. These nodes appear slightly prominent but do not appear frankly enlarged.
There is an asymmetrically prominent low spinal accessory node identified on the left. This node measures approximately 9 x 4mm in size.
A few small submandibular and sub mental lymph nodes are seen, without frank adenopathy.
CHEST: No mediastinal, hillar or axillary adenopathy is noted. No acute-appearing pulmonary infiltrate is identified. No pleural effusion is seen. No suspicious mass or nodule is identified within either lung. No pericardial effusion is noted. No thoracic aortic aneurism is seen.
ABDOMEN: Liver, gallbladder, pancreas, and adronal glands all appear normal. The spleen is not enlarged. Spleen demonstrates normal attenuation. Bilateral kidneys enhance normally and appear non-obstructed. Large and small bowel appear non-obstructed. The appendix is normal in appearance. No areas of gross, abnormal bowel wall thickening are identified.
PELVIS: Urinary bladder is unremarkable in appearance. A small amount of right adnexal free fluid is seen. A mildly-thick-walled cystic structure is seen within the right ovary measuring 14 x 11mm in size. Uterus is unremarkable in appearance. (my note here: this is the exact same thing my gyn saw a year or two ago in an ultrasound bc i felt a weird little pinching feeling there...she had said it would go away on its own after 4-6 weeks. the pinching feeling has never gone away, but i just ignore it and live with it) No abnormally enlarged lymph nodes are identified within the abdomen or pelvis.
(1) A few mildly enlarged cervical lymph nodes are seen. These findings are not specific. (that's the phrase i find confusing) No adenopathy is identified in the chest, abdomen or pelvis. Continued clinical follow-up of any clinically detected enlarged lymph nodes as well as CT follow-up of prominent cervical lymph nodes is recommended however. (Does this mean they are not specific/suspicious for lymphoma/malignancy but they need to be watched?)
(2) Small thick-walled right ovarian cystic structure is noted. Small amount of right sided free fluid is present. These findings can be further evaluated with ultrasound, as clinically warranted.
(3) Small left thyroid lobe nodule.
PS: On my admission info with my name, age, etc. it says "Adm Diagnosis: HX LYMPHOMA" - what does that mean?
Overall very good news that your spleen size is normal and that there are no internal mid-body (chest cavity, abdomen, etc) enlarged lymph nodes. So the enlargement seems confined to the neck, and I believe you previously said the groin area as well. A CT scan is good at seeing the enlargement, but not so definitive for diagnosis. Generally a lymph node biopsy would follow if the CT scan showed larger and more widespread lymph nodes, and maybe some shading on any of them. That is what "These findings are not specific" means -- the CT cannot rule out possible lymphoma since there are enlarged nodes, but it does not see any highly suspicious individual ones.
This means that if you do have the early stages of lymphoma, you will not be diagnosed yet. So the GP doc will need to keep searching for another cause, while the Hem-Onc takes a "watch and wait" approach regarding possible lymphoma. So the good news is that you have not been diagnosed with lymphoma, but the bad news is that you still may have early stage lymphoma. Or maybe you have something unrelated to L&L that has not been discovered yet. Since the lymph nodes are not the only diagnostic issue (you report alcohol intolerance, unexplained weight loss, generalized itching, etc) the Hem-Onc should want to keep a close eye on you to see if there are lymph node or other changes. If so, the larger nodes would be looked at for possible biopsy.
The "Adm Diagnosis: HX LYMPHOMA" means that the admissions people wrote down that you have a history (Hx) of lymphoma, or of suspected lymphoma. But it is not based on anything substantive, just in general why you are there to see the Hem-Onc.
So you need a revised new list of questions. Suggest you ask:
1) What are the diagnosis possibilities the Hem-Onc is pursuing?
2) Do the other symptoms make lymphoma probable, just not yet diagnosable?
3) Is this a possible lymphoma "watch and wait" strategy?
4) What further testing is needed at this time? When would a lymph node biopsy be required?
5) Might the left asymmetrically prominent low spinal accessory node be causing the neck problems?
So you remain a mystery to the docs. This process could continue for a while.
Thank you for taking the time to respond with such detail - I appreciate that!
I have very little patience but will have to learn to fake it. I now see what everyone means by the whole thing dragging out and a million dr visits and the whole mystery illness thing... the symptoms started all the way back in sept-oct and the nodes started in december and here we are in march and still not much closer to knowing a darned thing.
I still have the lost labs to get results on this Friday, liver functions, etc, but like you mentioned, everything is pretty localized to my neck. I'll also ask about Little Quazimodo (the accessory node that sits there perched like a parrot on my shoulder). And about the thyroid node maybe causing problems.
Your list of questions is tremendously helpful!
Hope you are doing well - you always check on everyone else, so I hope someone's checking on you!!
Thanks ,Karen! I'm on it! My throat and tongue have still been swelling up. The oncologist said i need to see my GP for that so i called as soon as I got out of his office bc I couldn't stand another day of this without a complete emotional breakdown! I insisted on seeing anyone BUT him and I did. She was wonderful and really listened, after reading my whole history. She put me on prednisone first thing and noticed small things i didn't think to mention, like how my eyes and mouth are really dry, my eyelids are puffy, and that I'm using the bathroom 3-4 times a day (TMI sorry) but since we only have numbers on my THS but not t3 or t4, she's doing that from scratch and looking for graves disease, lupus, and sjorgan's syndrome. She also noticed white patches on my arms and chest that I didn't think much of. She said I might have two things going on at once and that she wants to investigate this layer of whatever it is, but is 90% sure it's autoimmune. As for the lymph nodes, we'll see when I hit the machine in June. Thanks for your support, you're always very helpful!
LOL. Only time will tell if I'm correct - either way. I shoulda gone to med school when I had the chance. I love playing "diagnosis": it's like reading a mystery book. O and trying to guess "whoddoneit". One of my "proudest" moments was a "Mystery Diagnosis" program: I guessed the problem 10 minutes into the program - and I was sooo right (but it was a sort-of PT-oriented problem that I had written a short paper on a long time ago). It took the patient 6 years to get a diagnosis - and I'm still mystified as to why no one thought of it.
Keep in touch,
I'd call the MD. I've never heard of such a reaction: steroids are anti-inflammatories, but then I react weirdly to them: they work (certainly at the 20mg level) on me like a diuretic - and they are supposed to have the opposite effect. I've joked with my MD that "give me pred and give me Poise" is essential! Sorry I don't have any more info for you.