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Pet scan with lymph node activity

Lauraisabel
Posts: 72
Joined: Jun 2017

 

Hi there..it has been a while. I had a pet scan and it showed mild up take in a lymph node on my neck. It says that there is a small bilateral posterior cervical triangle lymph nodes associated with a mild degree of FDG avidity with SUV max reaching up to 2.6, Deauville score of 3. These measured about 5mm in diameter on prior pet ct and were not significantly hypermetabolic. On today's exam the nodes measure up to 9x10 mm. Findings concerning for active lymphoma. I'm so nervous because I don't know what to expect next and could it be an infection? I am going to see an ent and take the disk with me..but has anyone else had this and what happened. Thank you

po18guy's picture
po18guy
Posts: 1156
Joined: Nov 2011

It was a relapse. That does in no way mean a relapse in your case. Cold and flu season seems to be almost year around now. If it is thought to be warranted, a biopsy will determine with certainty.

Lauraisabel
Posts: 72
Joined: Jun 2017

Thank you so much for your input.  I will see what the ent says.

Lauraisabel
Posts: 72
Joined: Jun 2017

Have you had a biopsy? Can you tell me what do they do? I just got another pet scan and this is what it said....the lymph nodes are stable in size but the suv max reaches up to 3.7 Deauville score is 4. There is also prominent activity noted in the nasopharyx bilaterally with suv at 6 which was not seen previously. Now I'm really worried. I go in on Thursday to talk to oncologist...thank you!

tgyphilly's picture
tgyphilly
Posts: 18
Joined: Jan 2020

Hi -- sorry to hear about the scan that was anything other than a slam dunk of no activity.  I've been on a year long adventure with PET scans, node measurement comparisons, and SUV upticks, etc., etc.  Mine ultimately resulted in  relapsed Hodgkins recently, but it sure took a while to get here.  The Covid situation slowed the process down a lot, and my version of HL is fairly indolent, so my doc was not in a rush to get to biopsy mode in case my PETs were actually just showing an infection or something that would resolve itself.  

It's not fun, and can wear on you and loved ones mentally.  If I have any worthwhile advice it would be to not "borrow trouble" by going down the mental path of worst case scenarios.  Just take it as it comes.  It's easier said than done, but if you can compartmentalize the Relapse Anxiety to a space in your head that you can visit from time to time, but not stay too long, like a trip to the in-laws or the dentist, you'll be happier in the long run.  Ultimately if you have faith in your oncologist, keep that faith and resist the urge to go down the rabbit hole of reading research studies online (if you have a tendency to do such a thing, which unfortunately I do). 

And, if this turns out to be a relapse, just remind yourself that there are a lot of treatment options out there and you'll have a extremely high likelihood of getting rid of it again!  But, I really hope that's not the case!! 

Lauraisabel
Posts: 72
Joined: Jun 2017

I tend to worry a lot. I will just let the drs tell me what's going on but it's so frustrating when everything else was ok. I will try to be positive and pray that it's nothing! Thank you for your support!!!

Nursemedic
Posts: 1
Joined: Oct 2020

I'm an ENT nurse that works for a practice where we do ultrasounds and fine-needle biopsies about twice a month on lymph nodes, and other neck masses.  Just as others have said it is not a given that it is a relapse.  The majority are not cancerous. the score you gave is mildly suspicious.  During the ultrasound, the ENT physician should talk you through the process and tell you what they see.  If a fine-needle biopsy is warranted then they will numb the site with lidocaine (stick and burn) (normally done in the office).  They will normally make four needle passes to retrieve a good sample.  You will feel pressure, but normally the nurse or tech with the physician can give you a hand to squeeze.  That is one of my jobs.  Normally 5-7 business days for biopsy results.  Although depending on the workload of the lab (COVID) it could take a few days longer.  It is good that you are going in with your imaging disc.  Possible infection, you might need a different antibiotic, but the ENT will be able to address that for you.  Please know that I will be lifting you up in prayer. Please keep us updated after the ultrasound/fine-needle biopsy. 

Lauraisabel
Posts: 72
Joined: Jun 2017

Thank you so much for your reply. I was wondering why a surgeon can't just take the node out If it's a bad one. I think my node might be too small to biopsy. Thank you for your prayers. I will keep you posted. I wish it was just an infection.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3612
Joined: May 2012

Laura,  lymphoma is virtually never treated via surgery.   Plus, there is no certainty that you have lymphoma currently.   The needle biospy should provide the information necessary.  If it is inconclusive, a surgeon might extract it then.   It sounds like your case is being worked thoroughly and in a timely manner.

 

po18guy's picture
po18guy
Posts: 1156
Joined: Nov 2011

Leave the node alone and live life. The SUV is very low and the size of the node is almost below normal. Lacking additional nodes and other symptoms, I would consider it a virus until and unless other signs arrive. We are in the age of viruses, apparently. For example, in 2019, I had 5 or 6 viruses. We identified two of them. The others remain a mystery. Earlier this year, I had several enlarged nodes around my jawline. I know because doctor palpated them. I do not check for nodes, as I have enough OCD issues as is. Doctor was not worried and neither was I - all of them resolved on their own. If you can, just live life and watch for cold/flu symptoms, as we are entering that time of year. Along with the season come enlarged nodes by the billion on a world-wide scale. 

Lauraisabel
Posts: 72
Joined: Jun 2017

That is why I love u!!!! Thank you so much for your reassurance!! I will stil see ent but fell way better now! The dr seemed a little concerned. Like you said it could be something totally different!!! I will keep you posted!!!

po18guy's picture
po18guy
Posts: 1156
Joined: Nov 2011

...may have zero to do with your health. Even doctor's concern. Consider: yesterday, some folks worried that the world would end tomorrow. Today, since it did not, they face it. The unknown versus the known. There is a huge difference between possibilities and reality. We worry about the possibilities, but we step up and deal with the realities. I have found that dealing with the reality is more productive (and even calming) than worrying.

If you are a worrier, you might try this: get a spiral notebook or diary. Each day, as worries occur, write them down. Initially, you may write many worries each day. Review your entries from time to time. When you note a worry which failed to materialize, strike it out. Do this for a month or so and notice that you have very likely crossed all worries off. What this can do for you is to point out the needlessness of worrying, the negative effect on your spirit which worrying causes. Notice that you have a level of power over worrying by reducing it to writing and then striking it out. Ultimately, this can give you power over worry and reduces worry's power over you. It can tip the scale in your favor. 

 

Lauraisabel
Posts: 72
Joined: Jun 2017

I will. As soon as I find something I will let you know!

ShadyGuy
Posts: 636
Joined: Jan 2017

about worrying. Wild animals survive their very precarious lives by living in the moment. It also helps them to recover from traumatic events. Thats not to say they don't get scared or that fear is not a survival trait. For the most part they just don't dwell on it.

GGc0ok
Posts: 37
Joined: Oct 2020

 

po

you give such good sensible advice. I'm going to get a spiral and take notes of my worries.

Then hopefully strike them out

thank you

GG 

Lauraisabel
Posts: 72
Joined: Jun 2017

1. MILDLY ENLARGED BILATERAL CERVICAL LYMPH NODES -- A CHANGE FROM PREVIOUS EXAMINATION.

2. BILATERAL NASOPHARYNGEAL ADENOIDAL/ ABDOMINAL HYPERTROPHY.

3. CERVICAL SPINE DEGENERATIVe disk end plate disease 

This is what it showed. Have not seen dr yet but was wondering what your thoughts are. 

ShadyGuy
Posts: 636
Joined: Jan 2017

findings 1 & 2 could be caused by allergies to something in your environment. Just a thought. Have a great weekend.

Lauraisabel
Posts: 72
Joined: Jun 2017

Thank you for your feedback!!!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3612
Joined: May 2012

Whatever is going on, these results do not shout 'lymphoma.' Far from it. Item #1, 'mildly enlarged', could be a lot of things. Item #2 means that there is a bit of thickening or swelling in the rear of your throat. Item #3 is 100% irrelevant to lymphoma. I doubt that most ENTs would order a biopsy based upon these results, but a patient can usually insist.

Lauraisabel
Posts: 72
Joined: Jun 2017

I won't insist...I will just watch it and see what happens. I know that in a couple of months I will have another pet scan. Thank you so much, I feel better!!!

Lauraisabel
Posts: 72
Joined: Jun 2017

Now I'm really worried because my new pet scan shows new activity in the nasopharynx bilaterally with suv reaching 6. Thank you for your feedback!

po18guy's picture
po18guy
Posts: 1156
Joined: Nov 2011

have the radiologist's report? Or, have you discussed this with doctor? From location and bi-lateral nature, sounds to me like a viral infection. Have you been swabbed for viruses?

Lauraisabel
Posts: 72
Joined: Jun 2017

I have the report that comes with the disk. Never been swabbed for viruses.

ShadyGuy
Posts: 636
Joined: Jan 2017

But I must say that in my keyhole view of your situation I must wonder why they are giving you PET tests. Why not watch and wait for a year? Your lesions are very small, your SUVs are very low. Maybe a biopsy just to ease your mind. Just a thought. and I have very little faith in PET as anything more than a first line screening tool. Enjoy life while you can. Worry is a killer as surely as lymphoma. Live in the moment. Best of luck. I wish you all the best.

Lauraisabel
Posts: 72
Joined: Jun 2017

Thank you. I see dr Thursday so I will see what she says.

Lauraisabel
Posts: 72
Joined: Jun 2017

 

Hi there. I am nervous this is why i have you all! So I had a nasal biopsy a week ago. It came back positive for B cell lymphoma. So it seems that it's acting up again. I wonder what you all had to do after. I see the oncologist on Thursday and I don't know if we are going to do rituxin by itself or with something else. I just am worried about chemo. Any feedback is great. Thank you!!! Actually it said findings are suspicious for B cell lymphoma and I was dx with marginal zone b lymphoma a while ago.

PBL
Posts: 295
Joined: Jul 2016

Hi,

Sorry to read your news... You say you were diagnosed with MZL "a while ago" - when was that, and were you ever treated for it? If I try to read in between the lines here, I would assume that you were treated with single-agent Rituximab so far.

If the new biopsy report only says "findings suspicious for B-cell lymphoma", it is possible that your oncologist will request another biopsy for more precise results before making any further moves.

As regards treatment this time, with the tumor being in your nasopharynx (did they biopsy your adenoids?), your oncologist may well opt for chemotherapy followed by some radiotherapy and possibly prophylactic  intrathecal methotrexate as well.

Do let us know how things go next Thursday.

PBL

Lauraisabel
Posts: 72
Joined: Jun 2017

Hi there..they want to give me duvelisib instead of chemo and rituxin. Have any ou you had this pill? Thank you.

ShadyGuy
Posts: 636
Joined: Jan 2017

too concerned about the stuff on the web about interactions and side effects. If it bothers you read what they say about aspirin. All drugs sound awful but in reality usually are not. I am taking a drug called Lyrica to help with nerve pain and neuropathy (caused by chemo). I read the reviews on the internet and thought I would surely die from just being in the same room with it much less taking it. However I am just fine and it really helps. I feel much better. No cancer treatment is a walk in the park but just listen to your doctor. Best of luck.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3612
Joined: May 2012

Excellent observation: warnings on NASIDS, if read all the way through, would scare most people.    Warnings are lawyer- and insurance-provider driven.  They usually have little corrospondence to real-world experience.   And chemos can never be precision predicted for side-effects.   A somewhat common side-effect that disables one person, will not even be detectable in the next ten patients.

Society, in some areas, regards EVERYTHING as dangerous.   For years, guitars and bass guitars have been labeled as 'carcinogens.'   Regardless of wood type, finish material, regardless of whether electric or acoustic.   Go to any online major instrument retailer and you will see this for yourself, usually in the shipping data.  It is hard to figure WHAT about guitars is 'dangerous.'   My brother ordered a hunting knife from Amazon a few years ago.   Just a knife, just steel.   It had a warning stating that it was believed to be a carcinogen in the State of California.   Granite is a natural, extremely weak natural emitter of radiation, but the SUN can kill you 10,000 times faster.   There is no such thing as 'absolutely safe' regarding ANYTHING  (oxygen, for instance, can be posionous, and people can overdose on tap water, when it skews electrolytes)  This is part of why covid paranoia will not go away in our current world: people want ABSOLUTELY no risk, but there is no such thing, anywhere.

ShadyGuy
Posts: 636
Joined: Jan 2017

with cancer warnings

 - copper bullets 

 - cell phones 

 - motor oil

 - sunglasses

 - plastic tarps

 - screwdrivers

 - shoes

 - glue

 - light bulbs

 - seat covers

 - etc. etc. etc. - the list goes on and on.

I think the moral of the story is be paranoid about life. Be scared of people and things. And above all  never be comfortable, relaxed or worry free NOT. 

DJS628
Posts: 77
Joined: Mar 2018

Hi Laura,

I am so sorry you found out it indeed is lymphoma.  How are you doing now & how is the treatment going? We are always told not to worry until we're sure there is something to worry about!  But it's so hard not to worry! But worrying really doesn't help us, does it?  I am always worried 2-3 weeks before a follow-up appointment or pet scan (doesn't help that I've had a relapse before). 

Remember to BREATHE & try to relax!  Take care and get your rest.  We're here for you.  Please keep us up-dated on how you're doing.

---Debbie

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