Follicular non Hodgkin's lymphoma

paramedic
paramedic Member Posts: 10 Member
in Lymphoma (Hodgkin and Non-Hodgkin) #1

My 21 yr old nephew was just diagnosed today. He was told he needs to get an echocardiogram, bone biopsy and pet scan. Plus he needs to see a Dr. In a large town 2 hours away. My question, is there anyone on here with this diagnosis? Anyone who has been through these tests that could tell him what to expect? Someone he could talk with who has or is going through the same thing? Trying to help with the fear of the unknown in all this. Thank you.

Comments

  • po18guy
    po18guy Member Posts: 1,508 Member
    #2

    Sorry to hear this. Much depends on the stage and location of the tumors. Follicular is the second most popular lymphoma and it is well-known and treatment well settled. It is a chronic disease in that cures are hard to find, but there are thousands of not millions who live with it as a chronic condition. Some have been cured by undergoing a stem cell transplant and that would be one option. Yet, the younger a patient is, the more likely they are to do well through treatment, and afterward.

  • paramedic
    paramedic Member Posts: 10 Member
    #3

    So far the tumors have been found in his nodes around the neck. He should soon find out what stage. I am glad to hear that his age may help him through treatment etc. He is so scared and driving himself crazy with his thoughts. Knowledge is power so the more we know the better. He is very worried about getting the bone biopsy. Thank you for your information!!

  • po18guy
    po18guy Member Posts: 1,508 Member
    #4

    Everything should go just fine. Many of us here have been through multiple treatments and relapses. His age is definitely an advantage. He should be able to live a good, long life. As to staging, lymphoma is different from other cancers. It is a "liquid cancer" and flows in the lymphatic system. It is quite common to find it in several areas of the body. However, it also cannot hide from treatment. In my case, I have been stage IV at least twice, so try not to worry about that.

  • paramedic
    paramedic Member Posts: 10 Member
    #5

    You have no idea how close you are coming to giving me/us piece of mind. This is the things we need/like to hear!! Thank you for taking the time to write.

  • po18guy
    po18guy Member Posts: 1,508 Member
    #6

    For perspective, every day in the US, 103 people die in traffic collisions. Sudden. Unexpected. No chance for goodbyes, or mending broken relationships. I worry more about the drive to treatment!

  • paramedic
    paramedic Member Posts: 10 Member
    #7

    I have been a ground and flight paramedic for the last 25 years. And yes you speak the truth. Be careful out there!

  • po18guy
    po18guy Member Posts: 1,508 Member
    #8

    Was a first responder until the first of 4 cancers arrived. I paid no attention to the various prognoses. On the street, we learned to seek paramedics long before physicians. An amazing job you do.

  • paramedic
    paramedic Member Posts: 10 Member
    #9

    Thank you couldn't do anything else!

    My nephew saw the specialist he said as of now the cancer is so small that it wouldn't even be worth trying to take it out. Will know for sure after pet scan. If nothing more on that I guess he will be monitored. So very good news keeping fingers crossed for pet scan.

  • po18guy
    po18guy Member Posts: 1,508 Member
    #10
    https://csn.cancer.org/discussion/comment/1718717#Comment_1718717

    Lymphoma is not 'normally' addressed by surgery or even radiation. It cannot hide from systemic therapy, and therefore responds well to that. Follicular is a slow growing lymphoma and it is likely that treatment at this stage carries more risk than benefit. Indolent (slow growing) lymphomas can be provoked to transform into aggressive types if treatment is applied too early or too soon. The problem then is that you have two types of lymphoma, since some of the indolent lymphoma remains.

    The advantage of "watch and wait" is time! New therapies are arriving on a regular basis. 5 years from now, there will certainly be more effective and less toxic regimens, should he even need it then. In 10 years, even more so. I had two different aggressve lymphomas 5 times in my 50s-60s. Still here in my 70s.

    So, take heart.

  • ShadyGuy
    ShadyGuy Member Posts: 923 Member
    edited November 3 #11

    Good news! I have been suffering off and on FNHL for 13 years as of last month. It is not considered curable but can usually be managed. What I do not understand about your posts is how your nephew was diagnosed. Was it a biopsy? I believe that is the only way to get a solid diagnosis. As for PET - that is a screening test not a diagnosis. Best of luck. I hope things keep looking positive.

  • paramedic
    paramedic Member Posts: 10 Member
    #12
    https://csn.cancer.org/discussion/comment/1718718#Comment_1718718

    I did not know that about treating to early etc. good to know!

  • paramedic
    paramedic Member Posts: 10 Member
    #13

    He had a lump on his neck and just so happened to have an ENT appt shortly after finding the lump. So they did a needle biopsy and got the diagnosis. The pet scan is being done to see if he has it is anywhere else.

  • ShadyGuy
    ShadyGuy Member Posts: 923 Member
    edited November 3 #14

    Good. He knows what he is dealing with. The PET will show other potential tumors and the BMB will help stage it. Just remember that not everything that lights up on a PET is cancer. Sounds like he is on the right path. He should be able to live a normal lifespan. Cheers and best of luck.

    My doc said "bad news is you have cancer but the good news is it's FNHL."

  • paramedic
    paramedic Member Posts: 10 Member
    #15

    Thank you for answering my post!

  • JPop
    JPop Member Posts: 1 *
    #16
    https://csn.cancer.org/discussion/328627/follicular-non-hodgkins-lymphoma

    Sorry to hear about your nephew's diagnosis. I was diagnosed with Follicular Lymphoma 8 yrs ago at the age of 50 & was told that was relatively young and would positively impact my outcome. So I imagine an otherwise healthy 21 yr old will have even better odds than me. When I was diagnosed, the lymphoma had already spread to my whole body so I went straight into chemotherapy (bendamustine with rituximab). I had a PET scan, echocardiogram, and lymph node biopsy before they could start chemotherapy. The PET scan will show where the lymphoma has spread - if limited to a small region, radiation may be an option. A lymph node biopsy will provide more acurate diagnosis to confirm if it is Follicular or another sub-type. (I am not sure about bone biopsy, though. Perhaps they want to rule out leukemia?) Finally the echocardiogram was to identify any underlying issues that could affect how I tolerated the treatment or could disrupt my treatment. Each test plays a role to ensure they are prescribing the best treatment with the best outcomes for that specific person. I wish your nephew the best of luck, and based on what I have learned, I suspect his odds are very good.

  • ShadyGuy
    ShadyGuy Member Posts: 923 Member
    edited December 7 #17

    Jpop, Wow .. sounds like we went to different schools together. Keep the faith. Things will work out. There are twenty-eight sub types of FNHL. Even though all subtypes generally receive the same treatment regimens, the typing from a biopsy is critical. The BMB is also important for staging. Odds are in your favor! I feel better now than I have in the 13 years since diagnosis. Be sure to ask if Rituxan monotherapy is an option for initial treatment. I had that and was able to delay chemo for almost five years. Mine seems to resurface at 5 year intervals. Best of luck!

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