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Freaking Out Waiting on Answers

mranxiety
Posts: 3
Joined: Sep 2020

Hi everyone,

Hoping I can get some feedback from knowledgeable peers.  37 male nonsmoker.  Super healthy and active.  Noticed 2 palpable superclaviclar nodes on right side about 3 weeks ago.  Could have been there longer but unsure.  GP ran blood tests and showed normal WBC but lymphocytes high.  Sent me for an ultrasound which came back normal.  1.3 was the biggest node and other .5.  GP still referred me to hematologist.   Took a new CBC and lymphocytes and all else 100% normal.  Nodes still swollen.  Hematologist ordered lymphoma labs which I'm waiting on results and he wants me to just move forward with a PET scan.  He said doing a biopsy on small nodes could result in nondiagnosable tissue so the scan will light up anything elsewhere.

Heres the questions.   This feels like it went from 0 to 100.  I have no other noticeable symptoms but the hematologist said that even though the nodes are small, they are palpable and "in the wrong place to brush it off."  I am losing my mind with anxiety now.  I have little kids and struggling to keep my mind off the fact I could be seriously sick.  Anyone have any words of wisdom or experience with anything similar?  Is this overkill or should I be rightfully worried?

Lym999
Posts: 34
Joined: Feb 2020

I understand where you are coming from. There is a lot of us just like you who were in great health (non-smoker) only to find out I had Lymphoma. I just found out a year ago in which we thought was just an upper respiratory issue in my right lung, but only to be told I had cancer. Luckily it was lymphoma instead of lung cancer and I am now currently in remission. I truly understand what you are going through and hopefully, it isn't anything, but even if it is Lymphoma there are plenty of remedies to cure it.

Stay strong! Please stay in touch and let us know what happens. If you want to chat more with me about it let me know.

 

John

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3495
Joined: May 2012

Mr,

Welcome to our little ship of fools.  Your particulars do not presently scream Lymphoma ! or Not Lymphoma !

IF you have lymphoma, it is currently a very mild, incipient case, and such cases are almost universally easily treated.  Normal CBCs in many cases, like mine, while better than a horrible set of results, do not strongly suggest malignancy or lack thereof.   Many here have been diagnosed with highly advanced, aggressive disease, with mostly normal blood panels.

An excise biopsy (surgically cut out) of a node 1.3 cm would yield plenty of biopsy mass; perhaps you doctor was thinking of an aspirational biopsy (needle drawn), which is usually marginal, regardless of how large or small the tumor.  But a PET is a good idea, and it should yield highly accurate and suggestive data regarding cancer.   IF the mass appears hypermetabolic, a biopsy will then be necessary, since no PET clinically proves or eliminates cancer as a certainty.  Only a biopsy can or will do that.    Tumors in the clavical or axillary regions are usually easily accessed, and not difficult for a general surgeon.

Smokers get lymphoma and leukemia no more or less frequently than non-smokers.  Gerneral health and fitness also seem to NOT be strong indicators.   Close relatives with a blood cancer do increase liklihood of the diseases, but not astronomically.  A first -degree relative with Lymphoma, leukemia, or multiple myeloma are all therefore relevant risk factors.

Anxiety is a bane of the cancer patient's life.  But a better moniker wold be "Mr Trust" or "Mr Success."    

mranxiety
Posts: 3
Joined: Sep 2020

Thanks so much for the replies.  I am going to continue as directed.   Schedule for the PET next Friday.  Doing my best to stay sane.  Internet does NOT help that cause.  No relatives that I am aware of that have ever had a cancer diagnosis.  My doctor basically said that even if they did the biopsy, I'd likely be back in PET whether it was diagnosed or not so he felt this was the best path.  Ill trust him.  Ill be back in a couple weeks with good or not so good news....thanks again

ShadyGuy
Posts: 535
Joined: Jan 2017

PET is a screening test. Biopsy is a definitive diagnostic test. if the PET shows hot spots you will get a biopsy too. Thats the only way to identify the strain. Even if you test positive for lymphoma, the treatments are very successful. Good luck. Here is wishing you the best.

mranxiety
Posts: 3
Joined: Sep 2020

Thanks....ya, I am not 100% sure why he is doing PET first other than his explanation that he wants to be sure the nodes aren't the tip of the iceberg before he just biopsies one of them.  I guess as scary as it is, its less invasive than general surgery at this point since the 2 palpable nodes are my only symptoms.   Really appreciate the well wishes.  

Lym999
Posts: 34
Joined: Feb 2020

Shady Guy is right.  You will need a biopsy to see what strain of lymphoma you might have if your pet scan does come back as cancer. I had to have two biopsies for them to exactly determine all the details with my lymphoma.  I also had a bone marrow test done. Keep the faith that it turns out to be nothing but if it is Lymphoma there are plenty on here to help you through the whole ordeal. 

po18guy
Posts: 1083
Joined: Nov 2011

...measure hypermetabolic activity. That can include common infection and even the healing process from severe illness or physical injury. Again, an SUV (standard uptake value) is assigned to any spots whcih light up the scan. The lower the number, the less the concern. Yet, even high SUVs do not mnecessarily mean cancer. Only a pathological examination of a tissue sample (biopsy) can diagnose any malignancy. One phrase which helps to maintain sanity is:

"You do not have cancer until a pathology report says you have cancer."

ShadyGuy
Posts: 535
Joined: Jan 2017

"You do not have cancer until a pathology report says you have cancer."

Are you are saying pathology reports are never wrong? 

ShadyGuy
Posts: 535
Joined: Jan 2017

"You do not have cancer until a pathology report says you have cancer."

Are you are saying pathology reports are never wrong? Doctors and lab techs are often wrong. You have what you have regardless of what someone else says. False negatives and false positive frequently occur.

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