I may have low grade lymphoma or it could be from inflammation

Hi @lact. You wrote: “ So, basically I’m trying to figure out how to live not knowing for sure if I do or don’t have lymphoma!” I’m not being glib, but I would recommend you simply go on living as though you don’t have lymphoma. Your life hasn’t changed since the MRI and testing except the added anxiety of the unknown. And there is no evidence of cancer at this time.

You are currently in an active surveillance mode (sounds much better than watch and wait) and IF something changes, THEN you’ll deal with it. Until that time, life is too important to waste a day worrying about ‘what if’. I am speaking from experience and refuse to give up any of my precious time to worrying. I remember this little affirmation a few years ago and it’s stuck with me:
“Fear does not stop death. It stops life.
And worrying does not take away tomorrow’s troubles.
It takes away today’s peace.” Unknown…

Frankly, each one of us could potentially have a ticking time bomb in our bodies at any given time. If we looked at it that way, we’d all be waiting for the other shoe to drop and life would stand still.
There are treatments for lymphoma, Hodkins or non-Hodkins, so if that time comes, there are options ahead of you. But for now, think of springtime just around the corner and the time for renewal!

Of course, you’ll always have “Scanxiety” waiting for results with your 3 mo CT/bloodwork. But it doesn’t mean you live in fear between appointments! Keep your self immersed in the acitives that bring meaning and joy to your life or the lives of others. What are your favorite hobbies or things that you enjoy most?

@lact Let me add my welcome to you, joining Mayo Clinic Connect.

As @loribmt said, please don't put the cart before the horse. Active surveillance can be anxiety provoking, so take care of yourself. Worrying won't help nor will it change things.
Ginger

You mentioned several tests but I did not see a reference to flow cytometry. That blood test was the first test performed to determine if I had leukemia or lymphoma. If you are like me, I want to know what the situation is. I can face the known but not the unknown.

The wait and see approach is difficult. Feel fine is great physically but it’s the mental part that can hold you back. Take some solace that this will be monitored, tested, documented for years. And this is not a bad thing actually. Caught early is good. You may need to see a mental health provider to help you. Depression and anxiety some times can rear their ugly heads with the unknown. I have smoldering myeloma. At first it was a shock. But thru counseling, meds and support and understanding it becomes manageable. Life changed and so did I.

"may have low grade lymphoma or maybe it was inflamed because of inflammation from my arthritis in my spine."

It seems that people are latching on to the "watch and wait" when, in lact's case, that has a meaning other than what we typically think of. This may simply be inflammation, which is drastically different than lymphoma. I sure hope for her sake that that is what she has. Let's not have her needing treatment at some future time, or a lifetime of monitoring, when that may not be the case.

It seems to me that many tests establish a baseline, after which a change either 'for the better' or 'for the worse' is more easily determined and from there a protocol can be established. I would hope that our asker was assured that he/she would be monitored, perhaps as often as every six months, to see which way the wind is blowing.
I would be quite disappointed if two or more specialists told me that I could only wait and see, but if they know their limits, and seem to know yours, I don't know what else anyone can do. The surgeon sounds like he/she knows his/her limits and does not want to breach the Hippocratic Oath.

They are doing CT scans and bloodwork every three months.

That is why I pushed so hard for a biopsy now, they only wanted to watch and wait without a biopsy and decide in 6 mos.
My oncologist told me it’s 50/50 lymphoma/inflammation
I am already monitored annually for MGUS, Those numbers are all normal
Everybody tells me not to worry, seems like there is lots to worry about.

I am looking for a therapist, anxiety is definitely a problem!
I don’t understand how people think you can just move on with life and not think about it.

That test was not done, will it diagnose low grade lymphoma? I will ask my oncologist when I see him next about it. The not knowing is hard, probably the hardest. I don’t know if I should assume I do or don’t have it. Do I tell people or not? If I don’t tell people and it turns out I do have it people will think I have been hiding it from them and be either med or hurt! I’m frustrated beyond words!
Funny thing, my son is in cancer research and specializes in flow cytometry, but for drug research.