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False Positive Question/When a Node is Considered Suspicious

DJS628
Posts: 77
Joined: Mar 2018

Hello All,

It's been a while since I've been on the board and posted anything. But I have a question regarding a pet scan I had.

My main question is:  can a 3.3 cm x 2.3 cm inguinal lymph node with an SUV level of 7.6 on a pet scan be a false positive?  When are they considered suspicious of being malignant?

Additional Info:

I was first diagnosed with Diffuse Large B Cell Lymphoma Sept. 2015.  I had the usual treatment of 3 R-Chop, then radiation.  I was in remission for one month shy of 2 years, when it came back in July of 2017.  I was told that if it came back, it would within the first 2 years.

I was put in remission again, after 3 R-Chop treatments, then sent for an auto stem cell transplant.  This happened Jan. 3, 2018.  I was in remission, when I had the above pet scan results in Sept. 2018.  This time, I had radition only.  I've been in remission since!  Phew!  Thank God!

My oncologist I've had here in town all this time left the area and I've had two appointments with his replacement.  The first appointment, he informed me that because I didn't have a biopsy that time, it could have been a false positive! My reply:  I had radiation for nothing?!!!  He didn't know how to respond.

Oh, at the beginning of the appointment, he pointed to my records and said more or less:  "Impressive story!  You are doing very well; you haven't had any systemic therapy since your transplant.  I told him about my relapse in Sept., when I had radation that time and got the before-mentioned comments.

Anyway, I know none of you are doctors, but if you have any thoughts on this or knowledge on when our nodes are considered suspicious, please let me know.  It's scary being told your prognosis is very poor if you relapse after a stem cell transplant.  I'm trying to stay positive and live in the moment, but I do have my moments of wondering when/if it may come back yet again. 

Thank You in Advance,

Debbie

po18guy's picture
po18guy
Posts: 1188
Joined: Nov 2011

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.

DJS628
Posts: 77
Joined: Mar 2018

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!

po18guy's picture
po18guy
Posts: 1188
Joined: Nov 2011

You are very kind. Every time I had a node out, it was one or the other lymphoma. Due to the location of yours, maybe not all that suspicious, but due to its size, SUV and your history, maybe it is suspicious. Have you been screened for viruses? Autoimmune? UTI? If it is accessible, why not have it out? The risk of nerve damage, bleeding etc. etc. never bothered me. I wanted to know. Can you get back to SCCA? To me, "local oncologists" are like the GPs of cancer.

My story is posted on MacMillan (UK) and the Leukemia and Lymphoma Society. I could post it here for those who have trouble falling asleep. Currently, I am holding steady in my 5th remission, coping with and surviving the cure.  

 

 

DJS628
Posts: 77
Joined: Mar 2018

Hello Again,

I like that:  coping with & surviving the cure!  5th remission and you're still going strong! May you continue doing so.  I do need to read your story since I haven't for awhile.  I know it's long and you've been through a lot!  Very happy that you are in remission and doing well.

You said it was time to take it out.  I'm not sure if you read that the pet scan was done in Sept. 2018 and I received 20 radiation treatments and have been in remission since.  I'll have to see what my last pet scan results were, but no cancer since then.

SCCA wanted me to come back, but my oncologist in town wanted me to see a different doctor over there (for CAR T Cell), but my insurance told me I could see someone else there.  I would think they (SCCA) would have had me see the correct doctor since they were really good about getting insurance coverage in the past.

Anyway, SCCA wanted me to come see them, but at the same time they had already scheduled my radiation treatments here at home and at the time, I thought if that's the thing to do, get it started instead of delaying things. I just wanted the cancer to be taken care of, you know?  Decisions, decisions!

So recently, my oncologist here left and I had two appointments with the new doctor.  I relayed that experience in my original post. We have My Chart where we can message the doctors, see test results, etc.  There was another place along with my appointment that was this doctor's notes about my appointment.  I was told from the oncologist in town and SCCA that I probably had a high liklihood of another recurrence.  This doctor told me I had a low chance of a recurrence since I "haven't had any systemic treatment since transplant."  I also read in his notes that I may have been "initially been under- treated."  He didn't tell me this at the appointment, but wrote it in his notes.  I just know that stage one Diffuse Large B Cell Lymphoma is usually treated with 3 R-Chop, followed by radiation (but radiation may be skipped?), so who knows?  I wondered about that the first relapse.  You know, "I wonder if one more chemo treatment would have taken care of it for good?"  But what was done was already done.

To answer your other questions, no, I wasn't tested for viruses or any infections.  As far as I know, I didn't have any.  First dx was one lymph node on the right side (I had a fine needle biopsy), recurrence was 3 or 4 nodes (they took out the largest 2, if I remember correctly and biopsied them.  This was an excisional biopsy.

Then 8 mos after transplant, I had another node just below where the others were on the left side. (This was the node I was talking about on the pet scan). To which I asked the oncologist, why he didn't have all of them removed?!!  I was told it wouldn't be a cure since it's a blood cancer.

So anyway, again, the node I'm talking about happened Sept. 2018.

Sorry if I'm rambling here.  Midnight & I must get to bed.  But I do appreciated your thoughts and responses. 

Will check in tomorrow.

Thanks!

 

 

ShadyGuy
Posts: 683
Joined: Jan 2017

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!

DJS628
Posts: 77
Joined: Mar 2018

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

ShadyGuy
Posts: 683
Joined: Jan 2017

Yes I went through a second complete course of chemo which I completed in July 2018. I suspect I may have caused the relapse by overexertion.  My doc says he doubts that. I have since been diagnosed with psoriatic arthritis (mild and under control) and a ruptured disk. I think the disk ruptured on my Alaskan adventure too. It causes leg pain but I am a big boy and tolerate it. Biggest issue is sleep or lack thereof. But I am doing well and going to Alaska in late April in search of Dolly Varden trout. I hope to die with my boots on! I hope things go well for you. I am not knowledgeable enough to answer your question about radiation. I do however think that any node over 2 cm with an SUV higher than 5 deserves examination or at least close surveillance. All my best to you.

DJS628
Posts: 77
Joined: Mar 2018

Hi ShadyGuy,

I don't think over-exerting yourself would cause cancer to return.  Ouch on the arthritis and ruptured disk.

I hope you have a great trip to Alaska (that's next month!). 

Thank you for responding about the size of a node and the SUV level.  So far, so good in being in remission.  But I had to ask people after the doc told me it could have been a false positive.

I hope you catch some good fish and don't forget to take your boots along!

Take Care,

Deb.

 

ShadyGuy
Posts: 683
Joined: Jan 2017

You and my doctor agree that overexertion was probably not a factor in my relapse. I respectfully disagree. 

I will be using waders and possibly a small boat. I still have a lot of frequent flier miles from when I was working. Canada is closed so we can't go by RV. Last year same story. So I am flying up for a week and going to the Kenai fishing. I also plan to hike to Russian River falls, not so much for fishing as just for the view. I have been there before and loved area. Hope to go again sometime this summer. I am fully vaccinated for COVID and have the certificate.

Cancer patients can still do things!

DJS628
Posts: 77
Joined: Mar 2018

Hi Again,

That's ok as I admit I am not that informative on things and I am not a doctor.

I think that's great about your fishing trip! Too bad your first choice is out for now.  But you have a good alternative plan!  I'm glad you get to do that.  I hope you have a fantastic time and catch a lot of fish and see a lot of pretty scenery.  Don't forget to take pictures! 

I get my second COVID shot on Monday.  OUCH!  We've been poked, cut into, IV'ed, and etc. so many times, but I still do not like shots!  But a little bit of inconvenience and soreness is better than getting the virus and having long-term side effects or risk of death.  My father told me "you survived cancer and now you're willing to risk getting COVID and possibly dying from it?!!"  This was when I was reluctant about the vaccine at first.  Things have been improving in my area, so I'm hoping we can get back to almost normal soon.

 

And yes, we can still do things! 

Have a great rest of your week and this weekend!  It's warming up, flowers are blooming & we have to "spring forward" this weekend. Wow!

---Debbie

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po18guy
Posts: 1188
Joined: Nov 2011

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.

DJS628
Posts: 77
Joined: Mar 2018

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's picture
po18guy
Posts: 1188
Joined: Nov 2011

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.

DJS628
Posts: 77
Joined: Mar 2018

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's picture
po18guy
Posts: 1188
Joined: Nov 2011

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.  

DJS628
Posts: 77
Joined: Mar 2018

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's picture
po18guy
Posts: 1188
Joined: Nov 2011

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!

DJS628
Posts: 77
Joined: Mar 2018

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's picture
po18guy
Posts: 1188
Joined: Nov 2011

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

DJS628
Posts: 77
Joined: Mar 2018

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

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