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Oct 01, 2020 - 10:33 am
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 |
Joined: Nov 2011
In my case
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.
Joined: Jun 2017
Pet scan node
Thank you so much for your input. I will see what the ent says.
Joined: Jun 2017
Pet scan
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!
Joined: Jan 2020
Yes, have been in same boat recently
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!!
Joined: Jun 2017
Pet scan node
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!!!
Joined: Oct 2020
ENT Visit
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.
Joined: Jun 2017
Ent visit
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.
Joined: May 2012
Surgery
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.
Joined: Nov 2011
I would...
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.
Joined: Jun 2017
Pet scan with nodes
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!!!
Joined: Nov 2011
The "concern" of others...
...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.
Joined: Jun 2017
Pet scan with nodes
I will. As soon as I find something I will let you know!
Joined: Jan 2017
Don’t worry ...
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.
Joined: Oct 2020
po thank you
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
Joined: Jun 2017
Mri results
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.
Joined: Jan 2017
Not an expert but ...
findings 1 & 2 could be caused by allergies to something in your environment. Just a thought. Have a great weekend.
Joined: Jun 2017
Mri
Thank you for your feedback!!!
Joined: May 2012
MRI
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.
Joined: Jun 2017
Mri
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!!!
Joined: Jun 2017
Pet scan
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!
Joined: Nov 2011
Do you...
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?
Joined: Jun 2017
Pet scan
I have the report that comes with the disk. Never been swabbed for viruses.
Joined: Jan 2017
Not very knowledgeable ...
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.
Joined: Jun 2017
Pet scan
Thank you. I see dr Thursday so I will see what she says.
Joined: Jun 2017
Biopsy
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.
Joined: Jul 2016
Prior treatment?
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
Joined: Jun 2017
New drug
Hi there..they want to give me duvelisib instead of chemo and rituxin. Have any ou you had this pill? Thank you.
Joined: Jan 2017
Don’t be ....
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.
Joined: May 2012
Excellent
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.
Joined: Jan 2017
Some of the things I have seen ..
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.
Joined: Mar 2018
I'm Sorry it Turned Out to be Lymphoma
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