17 yr old daughter with possible Hodgkin Lymphoma

meebsters4
meebsters4 Member Posts: 2
edited March 2014 in Emotional Support #1
In November of 2008 my daughter presented with symptoms of insomnia, fatigue, swollen lymph nodes in her neck (front and back), low-grade fever, night sweats, and loss of 20 pounds. The doctor did 3 mono-spot tests which all came back negative. He sent her home with anitbiotics. All the symptoms except the swollen lymph nodes went away. Six months later she presented with the same symptoms, again, doctor prescribed antibiotics. Then again four months ago it happened again, and she continues to have all the same symptoms. The doctor was finally willing to check into things. An Epstein-Virus test was ordered along with a CBC, sediment rate, and thyroid. Positive EBV, slightly elevated sediment, slightly elevated lymphocytes, thyroid and other blood work ok. We were then sent to an ENT to dicuss the possiblity of a lymph node biopsy. ENT did not want to perform biopsy because the lymph node that was swollen (2.5 cm) was close to carotid artery. We are now scheduled for a CT scan. I am anxious, nervous, stressed, and even border on angry because it has taken a year and a half to get to this point. If anyone else has gone through similar experiences please let me. I need to feel like some one understands what we are going through. Please offer any information.

Comments

  • meebsters4
    meebsters4 Member Posts: 2
    #2
    CT scan results
    My daughter's CT scan was done today and doctor requested immediate results be sent to him. Large superior cervical lymph node found to be questionable. The doctor wanted to order a biopsy but my daughter has developed severe tonsillitis (in a matter of two days). He has scheduled her for a tonsillectomy. He says maybe the tonsils are causing the symptoms she has had but I don't think so. He called it chronic tonsillitis but she has had no issues with her tonsils EVER before this. Is it possible for lymphoma to cause tonsillitis? Please, some one help me understand and know what to do. We live in a small town and I am afraid she is not getting the attention she needs. I don't want to find out that she has lymphoma but it's too late to do anything.
  • wolla4751
    wolla4751 Member Posts: 2
    #3
    meebsters4 said:

    CT scan results
    My daughter's CT scan was done today and doctor requested immediate results be sent to him. Large superior cervical lymph node found to be questionable. The doctor wanted to order a biopsy but my daughter has developed severe tonsillitis (in a matter of two days). He has scheduled her for a tonsillectomy. He says maybe the tonsils are causing the symptoms she has had but I don't think so. He called it chronic tonsillitis but she has had no issues with her tonsils EVER before this. Is it possible for lymphoma to cause tonsillitis? Please, some one help me understand and know what to do. We live in a small town and I am afraid she is not getting the attention she needs. I don't want to find out that she has lymphoma but it's too late to do anything.

    Two things in your post
    Two things in your post jumped out at me... The fact that you come from a small town, and how you feel like you are recieving the run-around from your current hospital. My best advice to you: GO SOME WHERE ELSE/GET A 2nd OPINION and BE PUSHY. My husband and I did both and it was the best thing we ever did. We went to our small town hospitol and were sent to a chiropractor for the back pain and given antibiotics for the other symptoms. After finally taking a CT scan and finding the tumor they planned to just operate because they claimed it was beneign. After going to a different hospital that is well-known and respected for a second opinion the tumor was found cancerous and he immediatly started chemo/radiation. If he would have stayed at our small town hospital my husband probably would not have made it. Life is precious... Keep demanding and being pushy until you get results/answers. Even if you need to go elsewhere. You need to get to the bottom of those symptoms even if it isn't cancer it is better to know for sure as cancer is not something to wait on. Good luck!!!
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #4
    meebsters4 said:

    CT scan results
    My daughter's CT scan was done today and doctor requested immediate results be sent to him. Large superior cervical lymph node found to be questionable. The doctor wanted to order a biopsy but my daughter has developed severe tonsillitis (in a matter of two days). He has scheduled her for a tonsillectomy. He says maybe the tonsils are causing the symptoms she has had but I don't think so. He called it chronic tonsillitis but she has had no issues with her tonsils EVER before this. Is it possible for lymphoma to cause tonsillitis? Please, some one help me understand and know what to do. We live in a small town and I am afraid she is not getting the attention she needs. I don't want to find out that she has lymphoma but it's too late to do anything.

    Hi Meebsters and welcome.
    Hi Meebsters and welcome. Sorry you are having so many problems with your daughter's dx. I agree that you most definitely need to get a second opinion! Hodgekins Lymphnoma is very treatable and curable by 90%. If that is what she has. You need to get her to an ongologist, have a cat scan, have a biopsy, and see if it is cancer. I would think that it could spread to the tonsils, but I am not a dr. I would also think that the tonsils should be biopsied. Please take the time and effort to find another place to take her in your area. There are plenty of excellent cancer centers. What state do you live in? Keep in touch, we will be thinking and praying for you both.
    Tina
  • kathy51
    kathy51 Member Posts: 1
    #5
    meebsters4 said:

    CT scan results
    My daughter's CT scan was done today and doctor requested immediate results be sent to him. Large superior cervical lymph node found to be questionable. The doctor wanted to order a biopsy but my daughter has developed severe tonsillitis (in a matter of two days). He has scheduled her for a tonsillectomy. He says maybe the tonsils are causing the symptoms she has had but I don't think so. He called it chronic tonsillitis but she has had no issues with her tonsils EVER before this. Is it possible for lymphoma to cause tonsillitis? Please, some one help me understand and know what to do. We live in a small town and I am afraid she is not getting the attention she needs. I don't want to find out that she has lymphoma but it's too late to do anything.

    I can't believe they
    I can't believe they wouldn't do a biopsy. 11 days ago I felt a lump on the left side of my neck. My husband and I looked in my throat and discovered my left tonsil was red and really enlarged. We thought I might have tonsillitis. I called my ENT Dr. on Friday, made an appointment for Monday. He looked in my ears and throat felt all around my head and the back of my neck. Then shocked us both when he said he thought it was Lymphoma. He sent us immediatly for a MRI and blood work. Although no infection was present and I haven't been running a fever he put me on antibiotics. We went back today and the MRI showed nothing, he said he didn't believe the report because the lump is very visible and you can feel it. Anyway today he did a biopsy and scheduled me for the 6th to remove my tonsils. He is very adament that I have Lymphoma! I go this Friday to do pre-op and find out what the biopsy is. I'm not sure if it is Lymphoma that I want my tonsils operated on. I don't know what we're going to do. Saying all of this you can see how fast they can make things happen. I'm a very young 51 year old and your 17 year old daughter has more symptoms than I do, I would take her as fast as I could to another Dr. We live in a mid size town. No Excuses for the way they've treated her. Good luck I'll keep her in my prayers.

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