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Forum Name: Lymphoma

Question: path showed NLPL HD but didnt show on PET


 concerned mother - Sun Nov 04, 2007 4:26 pm

My 18yr old son was diagnosed with Nodular Lymphocyte Predominance Lymphoma Hodgkin's Diease. He had 4 lymph nodes removed from the right side of neck just underneath his Jaw line. The Onc. ordered a PET scan and told us that would assist in staging. I am confused however as the PET results showed nothing. Yet the Doctor said he is stage 1 and they want to do radiation. My confusion is why did it not even show uo that area on the PET. The oncolgist said it was because it was early stages and if we were not comfortable with Radiation he would send us to the Mayo Clinic or John Hopkins. We really can't afford that and I wonder if we should seek another opinion. 2 Pathologist have looked at the nodes that were removed, the first path was unsure and it was sent to anther path in another state. My son does have a node that is not as big as the ones removed but is hard like the others in the same area the first nodes were removed.
We have no family history of Lymphoma, I have an Aunt who had Ovarian Cancer in 85 and was recently diagnosed with a form of Lekumia. My grandfather died of Lung Cancer but was also a smoker.
Any advice is welcomed.
Thank you in advance for your thoughts.
 Dr. Chan Lowe - Wed Nov 07, 2007 8:00 pm

User avatar Hi Concerned Mother,

Unfortunately, my knowledge of Hodgkin's Disease is fairly limited. I do know that with treatment stage 1 disease has a very good prognosis in almost all cases. While I can't say for certain for your son because I do not know all the details I think this is most likely the case for your son also.

From my understanding in the reading I have done, radiation for stage 1 HD is the currently accepted standard of care. There may be other options if you'd prefer not to do radiation.

Regarding the PET scan I am uncertain as to why the nodes did not show up. Cautiously, you may be able to interpret this as an indication that the cancer was caught very early and has not spread much.

Follow up with the oncologist is very important. It is very reasonable to get a second opinion. I'm sure your current oncologist would not be offended by this. Most physicians understand patients concern and desire for second opinions and welcome the fresh look at the case.

Best wishes.
 Dr. Tamer Fouad - Wed Nov 07, 2007 8:28 pm

User avatar Hi,

Just to follow up on Dr. Chan's comments. I totally agree with his assessment.

It appears to me that all your son's nodes were removed, hence why would anything show on the PET scan if the initial 4 nodes were the only ones he had. His stage (stage I) would be based on the nodes that were removed in addition to the absence of any other nodes in any other area of the body (as per PET). If the PET had found another area of lymph node involvement then he would be staged as Stage II or more. So the PET was done to EXCLUDE any other stage (other than stage I).

I am a bit confused as to the nature of the new node you mention? Is it a node / scarring? What's your doctor's opinion?

Diagnosis of HD is done by morphology as well as immunophenotyping (staining marker proteins on the cells). I would presume that it shouldn't be a problem in a lab that is equipped with those facilities.

Lymphocyte predominance has an excellent prognosis in most cases. By excellent prognosis I mean cure.

Your oncologist should be able to give you more details.

I think radiation would be a great option as simply removal of the nodes does not cure your son. Nor does it change the stage.

Best regards,
 concerned mother - Wed Nov 07, 2007 9:42 pm

Thank you both very much for your input. We did see the Radiolgy Oncolgist yesterday and he felt that the node we were feeling was from the sugery. They will watch it to be sure. Because of the rarity of Lymphocyte predominance they are sending my son's case to the tumor board. It does not mean the stage has changed just that they wanted the input of the board, which makes me feel very good. My sons Doctor's feel we will most likely still go with Radiation but want to be sure. I too am confident he will be fine once we make it to the other side of this. I am thankful I have a caring staff of Doctor's to help us through this. And again want to thank the both of you, its nice to know you care. :)

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