Freaking Out Waiting on Answers

mranxiety

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

I understand where you are

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

Worried

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

Thanks so much for the

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

mranxiety said:

Thanks so much for the

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

Bottom line

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

ShadyGuy said:

Bottom line

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.

Thanks....ya, I am not 100%

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

mranxiety said:

Thanks....ya, I am not 100%

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.  

Shady Guy is right.  You will

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

PET scans...

...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

Wrong!

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

Are you are saying pathology reports are never wrong? 

ShadyGuy

Wrong!

"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.

mranxiety

Hi everyone.  So, I never

Hi everyone.  So, I never updated this thread.   Got the PET and CT in September.   Negative for any abnormal foci in PET and CT images showed nothing significant so basically, all clear.   Also had flow cytometry blood work and also all clear.  So, everything short of a biopsy.  Here we are 4 additional months later and, nodes still very much palpable.  I cannot tell if they are larger so if they are, it is not to the point where it is clearly noticeable.   A month ago, I had follow up with hematologist and I also had a second opinion meeting with an ENT.  Both told me to not worry and move on however, no actual explanation for the nodes.  Never did I have health anxiety until this situation so this is kind of throwing me through a loop.  In your educated and experienced opinions, what would be logical next steps?  Basically force a biopsy?  Have a follow up ultrasound to check size or, nothing at all?  I have no other symptoms but I do have 3 very palpable nodes that don't seem to be going anywhere.  I guess my mind wanders to some indolent form of disease that the PET may have missed.  Sorry in advance if I sound like a hypochondriac but, in my mind I did the right things but these nodes not going away just concern me.  Thanks in advance....

PBL

Do not worry yourself sick over it...

Since you've had those mildly enlarged lymph nodes for nearly six months, maybe more (referring to your initial post), showing no uptake, and they haven't budged in all that time, even assuming it is lymphoma, it clearly would be an indolent type. Asymptomatic indolent lymphoma can be monitored without any intervention for many years before it requires treatment.

You've seen a hematologist, you've had all the non-invasive relevant testing, and your GP is well aware of that small mystery so will likely keep an eye on it when you visit.  As the specialist told you, a biopsy on such small nodes could very well yield too little material to be conclusive.

In the absence of any development, such as more nodes popping up, or those first ones dramatically increasing in size, or other symptoms, you might as well keep on living life to its fullest possible. It will be time to return to the doctors if and when something new arises. 

You have said that you were essentially concerned because you have young children for whom you would understandably want to be around to raise and support them. This is often part of the health anxiety equation. I would suggest you look into the means to manage that issue - young children need a parent, to be sure; and a functioning, relaxed and available parent is even better. Anxiety is handed down to young children.

You may never know why those slightly enlarged nodes popped up - or, you may find out years down the line that you have lymphoma. Is it worthwhile to worry about being seriously ill when you could be enjoying your current good health and lead a happy family life?  

I hope this helps.
PBL

mranxiety

PBL said:

Do not worry yourself sick over it...

Since you've had those mildly enlarged lymph nodes for nearly six months, maybe more (referring to your initial post), showing no uptake, and they haven't budged in all that time, even assuming it is lymphoma, it clearly would be an indolent type. Asymptomatic indolent lymphoma can be monitored without any intervention for many years before it requires treatment.

You've seen a hematologist, you've had all the non-invasive relevant testing, and your GP is well aware of that small mystery so will likely keep an eye on it when you visit.  As the specialist told you, a biopsy on such small nodes could very well yield too little material to be conclusive.

In the absence of any development, such as more nodes popping up, or those first ones dramatically increasing in size, or other symptoms, you might as well keep on living life to its fullest possible. It will be time to return to the doctors if and when something new arises. 

You have said that you were essentially concerned because you have young children for whom you would understandably want to be around to raise and support them. This is often part of the health anxiety equation. I would suggest you look into the means to manage that issue - young children need a parent, to be sure; and a functioning, relaxed and available parent is even better. Anxiety is handed down to young children.

You may never know why those slightly enlarged nodes popped up - or, you may find out years down the line that you have lymphoma. Is it worthwhile to worry about being seriously ill when you could be enjoying your current good health and lead a happy family life?  

I hope this helps.
PBL

Everything you say makes 100%

Everything you say makes 100% sense.  Im a bit of a control freak i guess and the not knowing sucks.  I guess in hindsight, a biopsy maybe would have been a better course of action for my personality but, again, there is a concern even that could be inconclusive.   I was hoping the clean scans would be it and these things would go away and I'd move on.  I moved on for a couple months but for sure the anxiety is cranked right back up since they have not gone down.  I have considered the anxiety aspect of this but,  I also like to hope medicine can tell me whats really going .  Im sure the poking and such doesn't help mentally or physically.   I do appreciate your response and I know you're right.  I guess I'm just looking for some hard closure. 

PBL

Control is an illusion

... and knowing with 100% certainty would likely not change anything to it.

Something worth noting: poking and prodding will prevent those nodes from shrinking back to their usual, unnoticeable size. One more good reason to leave them alone and put the thought of lymphoma in the back of your mind, where it least bothers you.

Since you prefer to feel in control, why not set a date - say in six months - on your calendar to check on them? And until then, just forget they're there.

There is no risk you will actually forget of course - and if anything new arises, you'll know to go to the doctor's.

mranxiety

PBL said:

Control is an illusion

... and knowing with 100% certainty would likely not change anything to it.

Something worth noting: poking and prodding will prevent those nodes from shrinking back to their usual, unnoticeable size. One more good reason to leave them alone and put the thought of lymphoma in the back of your mind, where it least bothers you.

Since you prefer to feel in control, why not set a date - say in six months - on your calendar to check on them? And until then, just forget they're there.

There is no risk you will actually forget of course - and if anything new arises, you'll know to go to the doctor's.

You're right again and yes, 

You're right again and yes,  I've been prodding them nonstop so probably need to leave them be.  Good advice and good direction.   I need to make a hard effort to stick to that plan for sure.  Thanks again for the advice.  I know most cancer patients pray for the clear scans and labs i have in hand so trying to keep that in mind for sure.

ShadyGuy

Massage ......

There are MDs who prescribe professional massage to reduce swelling in nodes. Look it up. May or may not be right for you. Here is just one example of many. It is recognized medical procedure, not quackery.

https://www.medicalnewstoday.com/articles/324518

 

 

PBL

Lymphedema

I believe the article in the link deals with lymphedema, which is what you can see, for example, in breast cancer survivors who have undergone mastectomy with extensive lymph node ablation. Typically, they have a buildup of fluid in the arm on that side, due to the damage to their lymphatic network. Lymphatic drainage techniques aim to reduce that buildup. The woman in the video has lymphedema in her left leg: you can see it is quite swollen as compared to her right leg. You can also notice that she usually wears a compressive stocking on that side.

I am not sure that this would apply to someone with enlarged lymph nodes... But, one can always ask.

ShadyGuy

PBL said:

Lymphedema

I believe the article in the link deals with lymphedema, which is what you can see, for example, in breast cancer survivors who have undergone mastectomy with extensive lymph node ablation. Typically, they have a buildup of fluid in the arm on that side, due to the damage to their lymphatic network. Lymphatic drainage techniques aim to reduce that buildup. The woman in the video has lymphedema in her left leg: you can see it is quite swollen as compared to her right leg. You can also notice that she usually wears a compressive stocking on that side.

I am not sure that this would apply to someone with enlarged lymph nodes... But, one can always ask.

correct

Bad example. I did not watch the video. My only experience with this technique was two women I used to work with who had mild lupus. They swore by it. Even if there is no infection and no cancer detectable, there still must be a cause for the inflamed nodes. One potential cause could be allergic reactions or perhaps exposure to environmental toxins. Also as I mentioned, lupus and RA cause the nodes to swell. An RA factor test is fast simple and inexpensive. I don't blame mranxiety for wanting to find the cause. 

PBL

Neither do I - for sure!

I merely tried to offer some suggestions for him to reach some kind of either short- or long-term peace with the situation...

I hope he does find some way to turn away from that little mystery, not allow it to become the central point in his life, focus on what does matter for the time being - and, of course, that leaving those nodes alone for a while will ultimately, if not provide any answers as to cause, at least resolve the cause for worry.

PBL

mranxiety

I appreciate you both for

I appreciate you both for replying.   I would LOVE to know the cause but,  since I have no other symptoms and they haven't seemed to change much in at least 6 months....I'm going to try my best to not mess with them and check them again in a month.   Maybe all the prodding several times a day is keeping them palpable.  I have a 3 month follow up cadence with my hematologist anyways and he knows the not knowing drives me insane so, ill go with this unless something changes and see him in March.  I know not test is 100%...even some biopsies are false negs so just going to hope the PET and CT were accurate and that its some other random, fairly not serious cause and hope no other issues arise.  I really do appreciate all the replies and help.  I never even knew a couple nodes could put me on a journey like this so its been different for sure.   Ill be sure to check in and if you all have any other input or advice, its always welcome.  Wish you all health and happiness

 

po18guy

ShadyGuy said:

Wrong!

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

Are you are saying pathology reports are never wrong? 

Ugh...

1. One is not going to get treatment if the path is negative. Good so far?

2. One needs to remain sane - especially those with pre-existing anxiety - during the diagnostic process. 

3. Out of over 68,000 known human illnesses and conditions, thousands share symptoms with cancer. Still good?

4. So, the "mindset" which can help the anxious maintain some semblance of peace through the diagnostic process, is to take the position that it is not cancer (remember those symptoms) until a biopsy sample undergoes pathological examination and a finding of malignancy is arrived at.

5. I did not make it up. I was taught it on a forum which had 60,000 members. 

6. And for the above reasons and more, a second opinion on both pathology and treatment is recommended.

Over and out.