Referral to Oncology based on this PET…..

PipLily

Hello! Sorry for the long post. I would just like some help sorting through this report. ( I am an RN- but don’t routinely have much clinical day to day experience in this area) I understand no-one here is able to give medical advice :) Just looking for some real life input to help our swirling thoughts right now.
Quick background- my 34 yo daughter had a slightly tender small lump to the side of her breast, near armpit , in August after a bug bite. But got it checked- this led to a Mammogram, biopsy of a different spot ( turned out to be a Fibroadenoma), and a follow up ultrasound of the original lump/ axillary area in November. US still showed lymph node of 1.2 cm- no change, but since it hadn’t “gone down “, Radiologist recommended CT Chest. This then showed same Axillary node, but now another couple Axillary nodes on the opposite side as well. ( She had just received her flu vaccine 12/1- 3 days prior to CT Chest). So then, Radiologist recommends PET scan.
Fast forward to yesterday, PET scan done- and her PCP is sending in a referral to Oncologist. And the word “Lymphoma “ has been tossed around as to what we are obviously trying to rule in or out. The results are as follows, which doesn’t look HORRIBLE to me, but also isn’t nothing, given there is some uptake. A couple things I don’t understand- there really aren’t any numbers or “values” assigned to the uptake areas. Is that normal? Seems like a less than adequate reading? And also, the part about the symmetrical Tonsillar / Nasopharyngeal issue- I searched and searched, but is that an area that is commonly involved with Lymphoma?

”FINDINGS:
Head and neck:
Intracranial: No mass, mass effect, or worrisome activity is appreciated.
Extracranial: Symmetric moderate to severe nasopharyngeal and tonsillar activity is noted. There are mildly enlarged bilateral cervical chain lymph nodes with mild activity with the largest and most FDG avid noted at level 2 on the right (fused axial image

Lymphatics: Probable residual thymic tissue again noted with low-level activity. Prominent to borderline enlarged bilateral axillary lymph nodes are redemonstrated. These demonstrate low-level activity similar to that of mediastinal blood pool.

IMPRESSION:

1. Mildly enlarged cervical chain and bilateral axillary lymph nodes with low level to mild activity due raise a concern for a lymphoproliferative disorder given their appearance. Recommend a hematology oncology referral.
2. symmetric nasopharyngeal and tonsillar activity is noted as well, potentially reactive/ inflammatory though, with lymphoproliferative disorder involvement not excluded.

3. Probable residual thymic tissue with low level activity.

I cut and pasted the only abnormal parts. Everything else was clean. My daughter has had zero other symptoms or complaints- weight loss, night sweats, fatigue, etc, although I know that isn’t always the case anyway.

Just looking for any thoughts on these PET results that I can share with my daughter. She is a really scared young mommy of two precious baby girls, so I appreciate any advice I can give her as we wait for the Oncology appointment.
( Appreciate this forum so much- it was just an immense help as I helped my husband through cancer four and a half years ago. Sure didn’t want to be back, but it’s a great place to be for help!)

PBL

Sorry for your concern. As you have noted yourself, you will not be getting proper medical advice here - at least not from this responder. Your post calls for a couple of remarks though:

• the extract from the PETscan report you have shared here notes low activity, which, if dealing with something cancerous, would most likely suggest very small and/or very indolent variety;
• symmetry - also noted - more generally points to inflammation/infection (being a mother of young children, she may have a slight cold…), not cancer;
• what seems to have prompted your daughter's PCP to refer her to oncology to rule out lymphoma is the aspect of her axillary nodes. I suspect this might stem from some descriptive elements in the ultrasound report (architecture of the nodes…?). If that report does not mention anything fishy, then the referral may be an attempt to calm your daughter's anxiety.

I hope this helps. Do keep us posted on her situation.

PBL

Just a complementary note: yes, tonsils and adenoids are part of the lymphatic system and as such can be involved in lymphoma.
As to the absence of uptake values in the report, I would assume that the oncologist will have access to the complete set of images and will be able to read those.

PipLily

https://csn.cancer.org/discussion/comment/1719624#Comment_1719624

Thank you so very much for replying. You have included good useful information. As far as the architecture of the nodes on ultrasound, the only thing that was ever mentioned was on the initial ultrasound, the size was slightly enlarged. The one of concern still contained a fatty hilum. So I know that is good. The CT scan that found the opposite side axillary node or nodes, was the arm that had recently had the flu shot injected in that same side. The CT scan mentioned enlarged nodes, but didn’t say anything as to abnormal shape or anything. My daughter has an appointment with the oncologist the first week of January, so I guess we will have to hang tight till then. It’s the darn waiting……

As a side note- yes, the little girls all have had some degree of cough and runny nose for about two weeks now. My daughter herself has had an extremely low grade scratchy throat and some intermittent nasal stuffiness on and off as well. Maybe that’s the explanation for the Tonsils/ nasopharyngeal comment on the PET. I think my mom/ nurse brain is trying to justify everything in a positive light right now!! Just hoping!

Thank you so very much for replying!!

PBL

Hello,

Yes, the waiting bit is always pretty unnerving - and never gets any easier.

Becoming a parent often brings a lot of anxiety about what should become of our children should anything happen to ourselves, so… Here's hoping the referral was just out of an abundance of caution.

Enjoy the holidays with your daughter and the little ones and do keep us updated on the outcome of that appointment, whatever it is, as that can always be helpful to another anxious reader down the road.

PBL

PipLily

https://csn.cancer.org/discussion/comment/1719649#Comment_1719649

PBL- I 100% will provide an update! Thanks again for responding!

po18guy

Also sorry to hear of this. The evidence points to infection, as cancer is essentially never symmetrical. As well, was the PET was located at "level 2" or was the SUV of the suspect nodes 2.0? An SUV of 2.0 is very low. IIRC, a healthy liver registers higher than that. Lacking the "B" symptoms common to lymphoma, I think you can relax for the time being.

Many of us here are multiple survivors. In 2009, at early relapse, I had an "extremely poor" prognosis. That was before another relapse, a second lymphoma and a relapse of that and a third bone-marrow cancer - finally all three simultaneously. And there are better treatments now than back then. So, chin up!

PipLily

https://csn.cancer.org/discussion/comment/1719695#Comment_1719695

Hello! I’m sorry for the late reply to your post, but I just wanted to let you know that the day I read it, it meant the world to me!!! I know there’s no crystal ball, but just reading from you what I’m hoping for- that it is just infection, and that the symmetry, etc are hopeful signs of that- has been enough for me to breathe, and share with my daughter and son in law, and allow them to breathe!! I have read so many of your previous posts, and know what a warrior you, and others, on this site are, and so even that if things DONT end up being something more benign, have given a calm to us. So again, heartfelt thanks for taking time to respond!!!

In regards to the “level 2”… that is driving my nurse brain crazy- seems like a bit of a sloppy reading because it isn’t clear if it’s referring to the node level, or SUV level. But I’m just putting that in the back of my brain until she sees the Oncologist on 1/7. ( it’s hard knowing too little about too much! LOL).
I will post an update when we know more, but in the meantime, please know that you, and PBL, have helped this family, and we are grateful!!

po18guy

You are very welcome!

PBL

Hello PipLily,

Just for clarification: I understand "level 2 cervical chain lymph node" to be a node located in the area high below the ear lobe / at the angle of the jaw. Here are a couple of links with illustrations:

https://radiologyassistant.nl/head-neck/cervical-node-mapping/cervical-node-map
https://radiopaedia.org/articles/lymph-node-levels-of-the-neck

As to the precise meaning of "mild" or "moderate" uptake, I am afraid it is anyone's guess… I suppose, however, that "mild" would be slightly above the values for the mediastinal blood pool (which are usually around 2) and "moderate" would be a bit higher than the values for the liver (which are usually around 3). Needless to say, this is my non-medical interpretation. For perspective, my baseline SUVmax was 21.8 before chemotherapy and has since remained at Deauville 3 - or roughly the same as my liver uptake - which is considered remission.

I hope this helps. Do let us know what the hematologist says.

Happy holidays to you and your daughter.

PBL

PipLily

Hello!

Just a quick update- we met with the Oncologist on 1/7. To summarize- she wasn’t super impressed ( in a good way!) with the PET scan. She also feels that the presentation is not “typical “ for lymphoma. However, she did acknowledge that an indolent variation could present atypical. And “never say never “, but she really felt that our daughter is doing a million dollar work up for what likely will turn out to be maybe just a perfect storm of infectious processes, and scans done at the same time. ( our daughter having little ones, both of which just completed antibiotics for tonsillar and upper respiratory issues; and her receiving her flu shot just two or three days prior to the CT scan of the chest, which showed the new axillary lymph nodes on that side.).
Having said all that- she did want to proceed with a FNA Biopsy just to make sure, and “get it off the table “ ( Lymphoma) Our daughter is scheduled this Wednesday for that. I know a FNA of lymph node is not as accurate as excisional lymph node biopsy- but from what I’ve read, hopefully it will at least give us a positive or negative, and then we can go from there??

Open to any thoughts on that- but otherwise, grateful at least for where we’re at, and we will deal with anything beyond that.

Praying for negative- and if it is-hoping this post can help anyone else in the future with similar circumstances. Will update again once we know.

Thanks again for the support that was given. It meant the world!!! <3

PBL

Hello PipLily,

Thank you for your update - that does sound like the very good news we were expecting! As you have noted yourself, an excisional lymph node biopsy is usually preferred, but considering that the likelihood of lymphoma, in your daughter's case, is low, an FNA may be sufficient to rule that out and let her go on her merry way.

Looking forward to more - and definitive - good news soon.

PBL