Follicular non Hodgkin's lymphoma
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
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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.
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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!!
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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.
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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.
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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.
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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.
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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."
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