False Positive Question/When a Node is Considered Suspicious

po18guy said:

Sorry to hear of this.

With your history, I think a biopsy would be absolutely necessary and prudent. Inguinal nodes are often enlarged, as that geographical area of our bodies is much more susceptible to infection. Still, time to have it out, I say.

Hi Po,

Good to see you on here still!  I didn't have a biopsy in Sept. 2018 (8 mos after transplant).  Oncologist in town recommended radiation since that side didn't have radiation when it was on that side prior (left).  My original diagnosis was on the right side in 2015 (I had the R-Chop and 15 radiation treatments that time).  I've been in remission since the 20 radiation treatments, thank God!  I've been feeling well, too.

Enter the new oncologist (not sure if I'll stay with him or not), who tells me I was doing great, esp. since I haven't had any systemic therapy since transplant. So I told him of my relapse in Sept. after my transplant, to which he said it may not have been a "real" relapse since I didn't have a biopsy.

So I was wondering about what size and what SUV nodes can be considered suspicious.  I know you've advised people in the past to not worry it's cancer until a biopsy proves it, but...

In retrospect, I wish I had gone back to SCCA for them to take care of me again. But these "what if's" are hard on us.

Thanks for responding and if you have other information for me, please share.  You have been a valuable member on these boards.

Have a great weekend!

---Debbie

P.S.

What is your current status? I need to read your profile you up-dated (on another board, I believe?). I hope you are doing well!

ShadyGuy said:

On my last relapse no biopsy

On my last relapse no biopsy was done because of the issue of accessibility and it worked out fine. The nodes were deep in my chest and biopsy would have been very dangerous and difficult. The worst part of my cancer experience was a biopsy which landed me in hospital for 8 days. Nearly killed me.  This last time I was declared in relapse based on a CT. In my non-professional opinion I would get a biopsy in your situation because 1). your history 2). the size of the node 3). the node is easily accessible. Better safe than sorry. Good luck!

Hi Shady,

Thank you for replying to my post.  I remember you! Like Po, I need to read your story.  I think you had a more recent scare?  How are you doing now?

Sorry to hear the biopsy landed you in the hospital for EIGHT days! Oh, my! 

Like I just replied to Po up above, the pet scan was done in Sept 2018 and I received radiation which put me back in remission. No one has ever been able to tell me if radiation can cure cancer?  I will have labs and another pet scan in May.  I feel great and have my energy back, so I surely hope I'll still be NED then.  I've been trying not to worry about another recurrence, but it's hard (esp. when 2 out of 3 oncologists have told me it probably will come back...and I've read the statistics).  But technology keeps improving and maybe I won't be a statistic, right?

Because of my history, & the pet scan results, my oncologist here in town was pretty sure it was back again.  He told me chemo wouldn't work since I relapsed after initial treatment and after transplant.  Since I didn't get radiation on that side, he decided that would be best to do. His intention was to send me for CAR T Cell Immunotherapy, but since I didn't have any active disease after the radiation, they wouldn't do it. 

So here I am wondering what SUV would considered cause for alarm and of course, the size of the node as well. 

I'm just happy I'm doing well! 

After midnight here, so I best get off of here and get some sleep.

Thanks Again,

Debbie

po18guy said:

I never had suspicious nodes

I knew what they were, even if PCP, the oncologist and pathologist did not. Some things you just know. More advanced testing and a more experienced pathologist saw what it was.

"IF" you suspect sometihng sinister once again, go with your gut and jet on over to SCCA. They know the most about the most. In 2008, stupid, naive me did not want to go there. DW set me straight.

No suspicious nodes, but you knew something wasn't "right," huh?  Glad your DW got you to go to SCCA.  You probably wouldn't be here to talk to us, support us and help us out right now. 

That is what I'm scared about: with lymphoma, you may not see or feel a swollen node.  One of my relapses, I had normal blood work, no symptoms or lumps, but the pet scan showed it.

And yes, I'm hoping/praying that is a big IF something happens, I will definitely go back to SCCA.  They do know their stuff and take super good care of their patients.

Take Care & Best Wishes,

Debbie

po18guy said:

There are two stages to my journey

First was an episode of Twilight Zone in which I knew that I had cancer, but the local PCP, oncologist and pathologist did not. I ended up with anti-anxiety meds for stage IV lymphoma. DW was not impressed and so called SCCA. Our first consult there, with no diagnosis, was with the research hematologist who, just the year before, had begun to specialize in T-Cell Lymphomas. An utterly perfect match. I have a bottle of Dom Perignon which we shall enjoy at our next meeting.

Hi Again Po,

Good thing you went with your gut feeling (and your wife's urging, too).  And you got an appointment with a T-Cell  Lymphoma specialist!  Perfect timing and a true blessing as you are as a lady who had her transplant the same time as I said, "are still kick'n!"    We are very happy for that, that's for sure!

You may take a bottle of Dom Perignon to your next meeting, eh?  :-)

You said you didn't have any suspicious lymph nodes when diagnosed?  I read your story on here (I recall an on-going story you posted, but I don't remember if it was on here or another site?).  You've been through so much, but keep a positive attitude.  That is great as it helps us tons.  You've had so many treatments, been on clinical trials and so many?? And you've had so many recurrences or new cancers, oh, my!  I'll have to read your story again.  How long have you been in remission since your last treatment?

Also, I agree with you: there were no coincidences.  There is a reason for everything. You said if you had a choice to go back in time, you'd choose to go through it all again? I've learned so much through my cancer journey, too.  We learn what truly is important and learn not to take things for granted. 

I read some where about treating T-Cell Lymphoma with the CAR-T Immunotherapy? I don't know if they mentioned it was in clinical trials or ?  But you probably are more up-to-date on the emerging treatments. 

I'll pray that you remain in remission for many, many more years, or rather, that you won't need to get further treatment in your lifetime.  Have they mentioned the word "cured?" 

Enjoy your weekend!  Don't forget we "spring forward" this weekend! Spring time, here we come!

---Debbie

po18guy said:

We must define suspicious

It generally means 'worthy of investigation.' Yet the majority of lymph node investigations are not cancer. A very rough metaphor is that lymph nodes are like tiny lungs - inhaling and exhaling. On the micro level, they are essentially never the same size. At this point, our immune systems are pretty much incomprehnsible. We know of a few things which trigger them, but nowhere near all possible triggers. Nodes expand due to innumerable causes and occasionally for no "apparent" reason. There is a reason - it's just not apparent to us.

Many also live in a culture of fear. If we find a node that is prominent, who atually thinks "Oh, I must have an infection!" Very few it seems. Being alarmist by nature, we make a superman-style leap over the tall buildings of comon illness and land squarely on cancer. Then, doctor has to deal with us. Are doctors wrong? Of course - but they are right more often than wrong.

Yet, expanding/reacting is a node's primary duty. They are not "cancer detectors" in the fashion of the small thermometers we poke in the Thanksgiving turkey which pop up when cooking is done. Thus, their lung-like action comes into play. Conversely, consider the extra-nodal forms of lymphoma. A mediastinal mass is formed, but you will not find an enlarged node. 

Anyway, suspicious nodes must be considered while taking the big picture into account. Enlarged submandibular nodes on a 5 year old are not generally thought of as cancer, but as signs of infection - that is why doctor always felt around our jaws and underarns. If the big picture includes adulthood and especially a history of cancer, then the level of suspicion rises substantially. Here we rely on doctor's diagnostic acumen and prudence.

You are paying your money and so get to take your chice. If doctor just ain't gettin' it, another opinion should suffice.  

Hi Po,

You sure have a way of explaining things! Great way with words.  You should be writing articles, journals or books?!! 

Like I mentioned earlier, it's not a coincidence that you are still on this earth!  You help us understand things so much better and are helping so many on this board.  Thank you for your insight and input!

Have a geat weekend!  It may be 60 degrees Sunday!  Yeah!  :-)

---Debbie

po18guy said:

I wrote a lot.

31 years of primarily documentation. Formerly a voracious reader, I became familiar with numerous writing styles and assimilated those which appealed to me. I connect the dots and analogy helps to do that. If you ever run into my wife, please tell her that I am useful!

Peace and good!

Heh-heh!  I love it!  You are useful (probably in more ways than I know)!  Anyway, I like the way you write.  Have you considered becoming a professor?  :-)

Take Care,

Debbie

po18guy said:

Well..

My type used to be known as a "dime store philosopher" - suppose that would be the dollar store today?

I'm sure you are worth MUCH more than that! :-)