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Worried

neoKY
Posts: 4
Joined: May 2016

Starting around Christmas 2015 I had what I thought was a cold/flu.  For over 3 weeks I had fatigue, cold chills, occasional night sweats and extreme nasal drainage.  I went to the doctor and was prescribed Biaxin.  Symptoms mostly improved except I developed a cough which was sometimes productive with mucus and other times dry.  I saw my doctor a month after being prescribed Biaxin and he switched my BP medicine thinking it was causing the cough.  I was also put on reflux medicine for the same reason.  The cough continued at the  same severity until early April 2016 and has slowly been improving but is still there.

I had a followup with my doctor 2 weeks ago and since I still had a minor cough I asked about a chest xray just to be sure.  Here is the report.

TWO-VIEW CHEST HISTORY: 34-year-old male with hypertension presents for evaluation of cough x4 months. [R05 (ICD-10-CM)] COMPARISON: None available. FINDINGS: 1. Soft tissue prominence superior right mediastinum and left hilum. 2. The pulmonary vasculature and heart appear normal. 3. The lungs are clear. Recommend follow-up CT chest with IV contrast for further evaluation of possible lymphoma. 

I had a CT scan 2 days later here is the report.

CT CHEST WITH IV CONTRAST HISTORY: 34-year-old male with abnormal chest radiograph. Cough. TECHNIQUE: 3 mm images were obtained through the chest after the administration of IV contrast. Compared with chest radiograph 04/26/2016. FINDINGS: There is significant mediastinal lymphadenopathy. There is an approximately 2.9 x 2.6 cm right paratracheal node which has mass effect on the right wall of the trachea. There is also a 3.1 x 2.0 cm left paratracheal node also resulting in mild tracheal narrowing. Subcarinal node measures 4.4 x 2.6 cm. There is no hilar lymphadenopathy. There is no axillary or subpectoral lymphadenopathy. There are no pulmonary airspace consolidations. There are no pleural or pericardial effusions. In the visualized upper abdomen, splenic size is normal and there is no lymphadenopathy. The gallbladder contains multiple gallstones. IMPRESSION: 1. Prominent mediastinal lymphadenopathy resulting in mild narrowing of the trachea. The pattern of lymphadenopathy is not typical for that of sarcoidosis. A benign etiology such as sarcoidosis or reactive lymphadenopathy is possible, but a lymphoproliferative disorder such as lymphoma cannot be excluded. Tissue diagnosis is recommended. 2. Incidentally, cholelithiasis. 

I had labs drawn and they showed a very slight elevation of white blood cells (11.2) and slight elevation of platelets (416).  My doctor put me on an antibiotic again (Levofloxacin).

I should also mention that the lymph nodes under my jaw are enlarged.  However, they have been this way for as long as I can remember.  I did find a node on the back of my neck around my hairline.  I can't say for sure how long it has been there but I noticed it a few months ago.  The size has remained the same.

Here is my question.  It is going to take a month to get into a pulmonologist.  If it is a benign I don't care if I have to wait forever since really my symptoms are almost non existent at this point.  However, I'm worried that if it is lymphoma I really don't want to wait a month to see someone to talk about putting together a plan and then further delays working through that plan.

What do you all think?

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3323
Joined: May 2012

Neo,

Like the radiologist, it sounds like it is very likely lymphoma to me.  The radiologist is obviously of the opinion that it is most likely lymphoma, and is recommending a biopsy ("Impression 1").  My sister-in-law has the scarcoidosis he mentions, also under "Impression 1."  Scarcoidosis, a widespread swelling of the lymph nodes that is non-cancerous, and which does not improve with antibiotics, is actually worse in many ways than lymphoma, since it is essentially untreatable, whereas lymphoma is usually very treatable.  NOTE: The radiologist's Report constitutes a "Referral," which some doctors require. He is a doctor saying that you need a biopsy in this medical document. This is relevant for insurance purposes.

I would do a consult wtith a general surgeon and schedule a biopsy. Only a biopsy can confirm cancer, and only a biopsy will say definitively what is causing the swelling.  It will require a general surgeon to determine which nodes to extract, and how.

I would get to a surgeon. In general, one month is insignificant when fighting lymphoma. Many patients here have been told they had lymphoma for years before being successfully treated after diagnosis.  But I would not drag my feet either. There are over 40 common forms of lymphoma, and a few are aggressive.

Many dozens of people here over the years have written about how this or that doctor treated them indefinitely with antibiotics, rather than doing a biopsy and finding out the truth. Blood panels are often normal or close to normal, even for patients whith advanced lymphoma.  I had advanced Hodgkin's "all over" at diagnosis (collar bone to pelvic region, and across both sides; numerous organs wrapped by the nodules) following a biopsy, but my CBC panels were nearly perfect, so clean lab results are close to worthless.  There are more specialized labs that better indicate and track lymphoma, but family doctors are often unfamiliar with them. 

Also, many lymphomas, until they are very advanced, are asymptomatic: Fatigue is the most common, universal symptom that virtually all patients report.  In other words, normal labs and few symptoms are no argument against the disease.  I never felt an enlarged node, ever.  In fact, I  have never felt an enlagred node in my life, despite the advanced disease that I described.

I have a saying: "Don't let a doctor antibiotic you to death."

max

Sten's picture
Sten
Posts: 162
Joined: Apr 2013

Hi neoKY,

Since you obviously do not have a highly malignant lymphoma, one month delay should not be important. But if you want to have an earlier examination, go ahead.

Good luck!

Sten

GSP2's picture
GSP2
Posts: 103
Joined: Feb 2015

sometimes this is performed by a thoracic surgeon. Advise you talk to your primary about who in your area performs this procedure.

As the radiologist pointed out lymphoma is certainly a possibility and a worry here.  There are other etiologies possible but they would be

for example, atypical infections. I suspect you will need a biopsy and the technical approach is more the question.

 

Good luck!

 

neoKY
Posts: 4
Joined: May 2016

I finally got into the pulmonologist and had an needle biopsy via EBUS.  Short story is I need a mediastinoscopy to get definitive answer.  I'm just wondering why they jumped to hodgkin's vs non hodgkin's.  They didn't see any reed-sternberg cells so just wondering what makes them think hodgin's.

CYTOLOGIC DIAGNOSIS:
A. Lymph node, Subcarina, EBUS-Guided FNA:
- Atypical lymphoproliferative disease, favor Hodgkin 's Lymphoma.
- Smears show rare larged lymphocytes with irregular nuclear membrane and prominent nuclei in the
background of mixed inflammatory cells, suggestive of Hodgkin 's lymphoma.
Recommend excisional biopsy for further classification.

Flow Cytometry:
Final Diagnosis:
Immunophenotyping fails to reveal a monclonal B cell population.
An elevated CD4 to CD8 T-cell ratio is noted; The t cells, However, do not show any phenotypic
abnormalities. (see comment).
COMMENTS; Correlation with the cytology findings and patient ' s clinical history is recommended
for final diagnosis.

GSP2's picture
GSP2
Posts: 103
Joined: Feb 2015

Would not get bogged down in defining what type of lymphoma it is until more tissue is obtained and you have seen your oncologist.

 

Steve.

Margiein tucson
Posts: 11
Joined: Jun 2016

Your doc needs to be more proactive with you! You need the surgery to get an accurate diagnosis. And after that , have a SECOND pathologist look things over. I am going thru this right now with father. There are many types of HL/NHL. And they are not all treated the same . Accurate pathology is absolutely essential. I would say you had " b-cell " symptoms so continue on and get second opinions prior to making decisions . Also , lymphoma can morph into other problems so I wouldn't put anything off . 

Thinking of you , 

neoKY
Posts: 4
Joined: May 2016
Thanks.  I'm have the biopsy this week.  After I have the further biopsy I was considering like you mentioned to ask for a 2nd opinion on the pathology. I've heard MD Anderson does this and is excellent. Does anyone else have suggestions?

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3323
Joined: May 2012

MD Anderson is widely regarded as the best cancer center in the world. Whatever they conclude, go with.

mken03
Posts: 4
Joined: May 2016

If your doctor is not an oncologist i would see one immediately.  I had CLL that transformed into NHL.  Had I not been under the right care precious time would have been lost  just my 2 cents.

neoKY
Posts: 4
Joined: May 2016

I got the confirmation today from my mediastinoscopy, I have Nodular Sclerosis Classical Hodgkin's Lymphoma.  

I think I'm still going to ask for a second opinion on the pathology just to be sure but they found the "smoking gun" reed sternberg cells.  The path report doesn't mention it but my surgeon told me that the onsite pathologist said the tissue was very fibrous/scar tissue like with some lymphocytes mixed in.

I meet with an oncologist today and am anxious to say the least.  I'm ready to get staged and treatment started.  At a minimum I'm expecting some blood work, echo, scans (PET etc.), bone marrow biopsy, port placement.  What else am I in for?

From Pathology report....

Several special stains are performed including BCL2, CD3, CD10, CD15, CD20, CD30, LCA, pankeratin, AFB and GMS.  The controls stained appropriately.  All the stains were performed on Specimen B and CD15 and CD30 were also performed on Specimen A.  The AFB and GMS are negative for fungus or acid-fast bacilli.  The pankeratin is also negative and the BCL2, CD3 and CD10 reveal a mixture of T and B-cells.  The CD15 and CD30 stains do highlight large atypical Reed Sternberg cells that are negative for CD20 and LCA.  These finding help confirm Classical Hodgkin nodular sclerosis type.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3323
Joined: May 2012

Your route to diagnosis was slower than most, but at last over.  Conversely,  some patients are told at diagnosis that they had most likely had lymphoma for many years. My own oncologist said that I had had it "at least a year, maybe longer." My next door neighbor took three years for proper diagnosis, although he was late Stage IV (he is cancer free today).

Since there is no ambiguity in your results, and it does not suggest an odd or extremely rare strain, I myself would not bother with another pathology study. Usually when people need a second pathology study, it is the first lab itself recommending the second review, and it is usually because they know that the findings are not clear.  Your CT, this biopsy, and the aspirational biopsy have all pointed in the same direction. What you needed was confirmation of strain, which you now have.

Your disease, in the US, is almost always treated with the combination ABVD, except in some cases of very limited, Stage I involvement, in which radiation alone was at times employeed in the past. Studies have shown that adding chemo to radiation in extremely early stages improves long term prevention of relapse dramatically.  You will not receive Rituxan, since Rituxan kills only the CD-20 cell, which classical HL tests negative for. Your CT results make me believe you will be staged as an early Stage II.   You will almost definitely be given a bone marrow biopsy nonetheless, which is a good and necessary inconvenience.

Knowledge is power, and not-knowing is often the hardest part of the cancer fight.  You should achieve complete remission rapidly, and never see this pest again.  Your age, limited involvement of the disease, and overall good health make full recovery very likely.

I think you are advanced beyond this level of information, but youmight find it useful: 

http://www.lymphoma.org/site/pp.asp?c=bkLTKaOQLmK8E&b=6300137

max

Fluffydog63
Posts: 27
Joined: Jul 2017

Hello. You seem to have a lot of experience with this and are active on the forum. Do you know much about the involvement of high calcium levels and groin lymph nodes. Still trying to get diagnosed. Test aftlet test but not the right ones. High vitamin b12 and calcium Levels. do not take supplements. Very sick . Sweats although not drench. Weak. Fatigue and so many other symptoms. going to oncology/hematology doc in a week. I hope he can help. Having mamo and pelvic ultrasound for lymph nodes. In bed for months. Very shaky and of course stressed . Need a diagnosis. Need to have biopsy of lymphs;5 in groin area). Why do doctors always down play this stuff untill it is full blown. I am so amazed when stories here of people getting quick diagnosis. I feel  so lost and it is taking forever. It has taken its toll on me and don't know how much more I can take. I am sick and doctors have not yet helped me. Sorry for the ramble. But the pain and worry for months is horrible. I know something is wrong. 

ShadyGuy
Posts: 426
Joined: Jan 2017

i know its hard to do but you will be better off for it. Take comfort in knowing your condition is very, very treatable and curable. It took me four years to get fully disgnosed. I credit that to seeing non-cancer specialists. Get to the experts. And remember that with lymphoma, except for very limited stage I, the stage has almost nothing to do with the probability of successful treatment. Take charge. Seek support from family and friends. Be strong. May the best of good fortune come your way.

PeterinPittsburgh
Posts: 3
Joined: Jul 2017

As a long time Hodgkin's survivor, I agree with other posters that this is very treatable, and curable, form of cancer.  One thing you can do to improve your chances of cure and avoid recurrance, or any type of cancer is living a healthy lifestyle.  If you smoke tobacco, quit, if you don't exercise much, start now, if you don't consume regular servings of fresh vegetables and fruits, make it a new priority.  One thing about getting a serious illness when you are relatively young, it gives you an appreciation for life and good health that many do not get until they are elderly.  Best of luck to you!

Pete

lindary's picture
lindary
Posts: 662
Joined: Mar 2015

Pete is right but thne you are faced with nausea and lack of appetite. I am not a big veggie eater so I have a can of V8 every day. Not to replace eating veggies but to added to the low volume of veggies I do eat. Many people find something they will eat no matter how bad they feel. It usually isn't the leathiest of foods but something in the stomach is better than nothing. A couple of people I know ate french fries. I couldn't eat potatoes but I could eat mac & cheese. 

My husband makes great soups and would give me homemade vegetable soup at least 2 or 3 times a week. Haven't been able to eat it since I went into remission. (Oh well.) I also avoided sweet things like candy & soda as much as possible. I only took supplements approved by the Drs. Exercise, well walking is an exercise. One thing I did almost everyday was to make a plan for the next day. I did a lot of working form home that helped in that regard but on days I didn't work I still planned. Even it it was something as simple as get out of bed, get dressed, read the paper, work the crossword puzzle, watch the program I saved the night before because I was too tired to watch it then.  You get the idea. Just don't make the plan the same every day. 

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