Newly Diagnosed NLPHL.

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  • Scharfschutze15
    Scharfschutze15 Member Posts: 12
    #22
    Jazmin2 said:

    Very confused...

    I eventually got PET done and shows few (3) more hypermetabolic lymph nodes. But as per the doctor NLPHL is a very slow growing and he thinks chemo and radiation has lots of side effects. he said that he will keep an eye and blood test will be done every three months. 

     

    Knowing that I have cancer and i should wait and watch makes me a little nervous. 

     

    The only thing I hate about all this is that in the end it is my decision......WHY??? I am going to a top specialist, I should not be making a decion my doctor should. Telling me that it is my call is CRAZY!!!! I am as confused as anyone can get. Now everyone suggests that I should another opinion. 

    Hi Jazmin,
    Having

    Hi Jazmin,

    Having hypermetabolic lymph nodes doesn't in itself at all mean you have cancer. PET scan measures metabolism, the process by which cells use sugar to produce energy. Hypermetabolic means those cells are metabolising more sugar than is normal for that type of cell. This is important in terms of cancer diagnostic because cancer cells have a much higher metabolic rate than healthy cells, thus they "light up" the PET scan. However, a bunch of other things can cause this reaction, including various infections, inflamation and other things. Of course, this finding should be taken seriously, especially if you have other imaging or biopsy results that conclude similarly.

    It might be that slow moving NLPHL, watching and waiting to look for changes is appropriate. It doesn't sound right to me but I'm not an oncologist.

    It does sound like you should get a second opinion on the imaging test but I didn't see anywhere in either post if you'd actually had a biopsy on a swollen node? That's the only way to confirm this diagnosis. Imaging and bloodwork alone can't do that. Have you talked to your doctor about biopsy options?

  • Jazmin2
    Jazmin2 Member Posts: 18
    #23
    Scharfschutze15 said:

    Hi Jazmin,
    Having

    Hi Jazmin,

    Having hypermetabolic lymph nodes doesn't in itself at all mean you have cancer. PET scan measures metabolism, the process by which cells use sugar to produce energy. Hypermetabolic means those cells are metabolising more sugar than is normal for that type of cell. This is important in terms of cancer diagnostic because cancer cells have a much higher metabolic rate than healthy cells, thus they "light up" the PET scan. However, a bunch of other things can cause this reaction, including various infections, inflamation and other things. Of course, this finding should be taken seriously, especially if you have other imaging or biopsy results that conclude similarly.

    It might be that slow moving NLPHL, watching and waiting to look for changes is appropriate. It doesn't sound right to me but I'm not an oncologist.

    It does sound like you should get a second opinion on the imaging test but I didn't see anywhere in either post if you'd actually had a biopsy on a swollen node? That's the only way to confirm this diagnosis. Imaging and bloodwork alone can't do that. Have you talked to your doctor about biopsy options?

    Biopsy was done.

    Biopsy was done during my appendix surgery and it shows NLPHL. This is how it all started. But even after all of this, Oncologist from John Hopkins suggest Wait and Wacth. 

  • Scharfschutze15
    Scharfschutze15 Member Posts: 12
    #24
    Jazmin2 said:

    Biopsy was done.

    Biopsy was done during my appendix surgery and it shows NLPHL. This is how it all started. But even after all of this, Oncologist from John Hopkins suggest Wait and Wacth. 

    Ask questions

    Jazmin,

    Ask your onc why wait and watch is the right path, given it's making you so (understandably) anxious.

    Find a second oncologist for a new opinion, even with John Hopkins great reputation. Call the pathology department at John Hopkins Hospital and get them to send the pathology material and reports to the new hospital/onc for the 2nd opinion. They're legally obliged to do so. You will have to sign a release waiver, only.

    If they come back with the same recommendation, you'll feel more reassured. If not, you have something to work with.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,812 Member
    #25
    Jazmin2 said:

    Biopsy was done.

    Biopsy was done during my appendix surgery and it shows NLPHL. This is how it all started. But even after all of this, Oncologist from John Hopkins suggest Wait and Wacth. 

    Little sense

     

    Jasmin,

    I have studied NLPHL for many years now, as a layperson, of course.  I have never heard of Active Survelliance ('Watching and Waiting') recommended for NLPHL, ever. No other patient here has ever had it recommended as a treatment option for NLPHL that I can recall, pre-first-line treatment. Active Survellance is sometimes an option for relapsed, indolent disease.

    Look again at the SECOND link that I provided to you above last week. This is from the chairman of the German Hodgkins Lymphoma Study Group, the largest long-term study of lymphoma in history.  It mentions Watchful Waiting for pediatric, Stage 1 NLPHL patients, but never for adults.   This link, also from the German Study (English), says the following regarding HL (this is NOT written in reference to NHL):

    "Treatment should start as soon as possible after Hodgkins Lymphoma was diagnosed to avoid further progression of the disease."  This is of course a German study group recommendation, and may not be widely accepted as normative in the U.S. or other countries.

    http://en.ghsg.org/treatment

    If you look again at the THIRD link that I provided, (2013), A.S. is never recommended for ANY age group (section "Early Stage Disease"), but interestingly surgical removal of single, Stage 1 nodes is occasionally used in Stage 1, PEDIATRIC patients (section "Surgical Resecton Alone")

    Treatements for early-stage NLPHL are slightly different, but EASIER (and shorter) than after it is a later stage of development (again, see the Third link).   What you have been told is incomprehensible to me. I would indeed get a second opinion.   It sounds almost like insurance issues could be involved.

    Your hematologist saying that he is "hesitant to use radiation or chemotherapy" is also one for the record books...

    Be aware also that blood panels for some forms of lymphomas are nearly worthless.  I was late-stage 3 NLPHL (very widespread throughout the body), but my labs just before beginning chemo were very nearly normal across the board.  This is not an uncommon observation here: Many stage 4 patients were diagnosed via scans while still having normal, or very close to normal, lab results.  It is important to get these panels done, but very often they will miss what a scan will catch.

    max

  • incrediblyblessed
    incrediblyblessed Member Posts: 5
    #26
    Jazmin2 said:

    Biopsy was done.

    Biopsy was done during my appendix surgery and it shows NLPHL. This is how it all started. But even after all of this, Oncologist from John Hopkins suggest Wait and Wacth. 

    Watch and Wait

    Jazmin -

     

    As you know we were diagnosed with NLPHL on the same day. Mayo Clinic in Jacksonville did my incisional biopsy that discovered the NLPHL and the hematology oncologist there suggested 6 months of ABVD. Went to Moffitt Cancer Center in Tampa (which is the only NCI accredited cancer institute in Florida and is in the top 20 best cancer institutes in the US) and their recommendation was careful observation (repeat blood work and PET/CT in 3 -4 months) as this time or "watch and wait" they offered 8 Rutuxan treatments as an alternative if I was not comfortable with careful observation but said that they would not do chemo at this point with my age and particular circumstances. They said that they have several patients in their care who have been under observation for any where from 3 - 5 years who have had NO progression of disease. I'm now quite torn and am currently trying to get a couple more opinions. I didn't even know this was an option and honestly went for a second opinion more to confirm that the particular regimen of chemo that Mayo was recommending was the best one for this (most successful with least amount of side effects) and I walked into Moffitt expecting them to either agree with Mayo or say no, we would recommend XYZ chemo regime (say maybe CHOPP which I've read is also used sometimes). Please keep me posted on how you proceed and if you get any other opinions or info.  Thanks : )

     

    Christine

  • Jazmin2
    Jazmin2 Member Posts: 18
    #27
    incrediblyblessed said:

    Watch and Wait

    Jazmin -

     

    As you know we were diagnosed with NLPHL on the same day. Mayo Clinic in Jacksonville did my incisional biopsy that discovered the NLPHL and the hematology oncologist there suggested 6 months of ABVD. Went to Moffitt Cancer Center in Tampa (which is the only NCI accredited cancer institute in Florida and is in the top 20 best cancer institutes in the US) and their recommendation was careful observation (repeat blood work and PET/CT in 3 -4 months) as this time or "watch and wait" they offered 8 Rutuxan treatments as an alternative if I was not comfortable with careful observation but said that they would not do chemo at this point with my age and particular circumstances. They said that they have several patients in their care who have been under observation for any where from 3 - 5 years who have had NO progression of disease. I'm now quite torn and am currently trying to get a couple more opinions. I didn't even know this was an option and honestly went for a second opinion more to confirm that the particular regimen of chemo that Mayo was recommending was the best one for this (most successful with least amount of side effects) and I walked into Moffitt expecting them to either agree with Mayo or say no, we would recommend XYZ chemo regime (say maybe CHOPP which I've read is also used sometimes). Please keep me posted on how you proceed and if you get any other opinions or info.  Thanks : )

     

    Christine

    I went to my Local Onc. today

    I am so confused myself Christine. Doctor at John Hopkins wants to go watch and wait, don't even want to offer me any Rituxan. I went to my local Onc. today and he suggested after looking at PET scan that he will put me on Chemo. He thinks I am very young (45) and should get this done and over with. But At hopkins the doctor thinks I am very young and will deal with lots of side effects of Chemo and Radiation. He said I have to go back every 3 months for blood work. He said he will not do CT scans every three months because they are harmful also. 

    After my local doctor told us what he exactly wants to do, I told him about my visit to Hopkins on friday and the doctor's suggestion,  and then he said " Well we can go that way too". But in the end he said it is will be my choice. 

    How can I choose! it is so confusing!! every case is so different. I am not an expert. Ofcourse none of my close family and friends will tell me EXACTLY what to do, it is a huge risk. 

    Did they ever tell you the stage? This is one thing I don't know about. I guess it is stage 3 or 4. Because they see Iliac nodes left and right and one in my neck. 

    The only thing I have a confirmation about is that it is very low grade, very slow moving cancer. No one seems to rush anything. I have no other complications just that I am anemic. DO you have any other major complications? 

    As of right now, both Oncologist will talk to each other and will let me know. 

    Keep me posted also, I want see how you proceed also. 

    Jaz

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