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Thread: 6 year old daughter going for a biopsy

  1. #1
    Newbie New User
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    6 year old daughter going for a biopsy

    Hi
    I am new here and know that I shouldnt panic when we dont yet have a diagnosis, but when its not you but your child its really hard not to.

    A bit of background - my daughter is generally well apart from the normal occassional childhood illness. However back in Novemeber 2010 I noticed a fairly large lump on her neck in the area of where the lymph nodes swell when they have a cold etc. She was well at the time and hadnt been sick in ages. Took her to the GP who said the mass was matted lymph nodes and refered her to the paediatric outpatient clinic. It took until early January 2011 to get an appointment through. When we went the dr there felt the mass was "hard and matted" nodes and about the size of a walnut. Her ordered a whole load of bloods and took throat swabs which came back all normal apart from a low normal Hemoglobin and low iron stores in her CBC. Becasue of the reassuring results we were told to return after 3 months to have a followup unless she beame unwell inbetween.

    So we had our followup appt today. I havent been concerned becasue she is still well and I had felt the lump at least hadnt got any bigger and actually thought it was smaller. Anway the Dr feels that the nodes are now matted and "bumpy" rather than smooth as previously and were actually larger. He has reffered us to the surgical team for a biopsy.

    So anyone with any advice suggestions? I presumed that since this has been going on now for 6 months there would be more obvious symptoms if it was a malignancy? I cannot find any information on time scale of progression for such things as a lymphomas/leukemias which is what is the main worry?

    Any advice or just to chat to someone with similar stories would really help.

    xx

  2. #2
    Hi and Welcome! You've come to the right place for support! Just wanted to tell you I will be thinking about you and your daughter, and hoping for the best. Hopefully, it is an excisional biopsy (they take the whole node out) and you can get a good answer. If it's any consolation, I had a student earlier this year with much the same situation. She had a very large lump on her neck removed (it had been there for quite a while) and it all turned out benign. Hang in there!
    43 years old
    Peripheral T-Cell Lymphoma, NOS 4B 4/21/2011
    CHOP-21 to begin 4/26/2011 6-8 cycles
    ICE X 2, auto SCT 12/6/11
    www.caringbridge.org/visit/jeannelawson1

    "Y un dia despues de la tormenta, cuando menos piensas sale el sol"-Shakira
    "One day after the storm, when you least expect it the sun will come out."

  3. #3
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    Hi shakifan
    Thank you so much for replying to my post. Glad to hear the person you knew had a benign lump. I dont know if its going to be fully removed, the Dr I saw today said it will probably just be a needle aspiration but may be a removal but he will discuss with the surgical team on that decision. Even the thought that she is having to go through what is a relatviely simple procedure is scaring me silly! I know I need to toughen up but I just wish it was me that was having to have it done.
    Thanks again for you response and will keep you updated

  4. #4
    Sorry to hear that you and your daughter are faced with this scary time. Quick note on the needle biopsy. I first had a needle biopsy and was given negative results when I did in fact have Hodgkin's. I was diagnosed by a surgical biopsy where part of the node was removed. I dont want to scare you further but I found out the hard way that needle biopsy's are not the most accurate diognosis tool. Hoping you get some good results and quick answers!

  5. #5
    Administrator Top User ChemoMan's Avatar
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    Hi awigham

    So sorry you are worried about this. Chances are that this is not cancer, 98% of people who come here with enlarged nodes leave happy knowing they do not have cancer.

    The other posters were right in that fine needle biopsies are of no real value in diagnosing lymphoma. I also had one which was negative for NHL when I was in fact positive. The problem with them is twofold. 1. they are prone to false negative results 2. If lymphoma is diagnosed then a full excision needs to be done anyway to find out what type of lymphoma it is.

    Good luck and keep us posted if you feel up to it.
    Age 62
    Diffuse Large B cell Lymphoma
    Stage 2a Bulky presentation
    Finished six cycles of R chop 21 26th May 2008
    Officially in remission 9th July 2008
    Remission reconfirmed 1st October 2008
    Remission reconfirmed 17th June 2009
    Remission reconfirmed 7th June 2010
    Remission reconfirmed 6th July 2011

    NED AND DECLARED CURED on the 2/01/2013

    No more scheduled visits to the Prof
    http://cancerforums.net/viewtopic.php?t=9620

    Still alive in 2019 !

    RULE NUMBER 1.....Don't Panic
    RULE NUMBER 2..... Don't forget rule Number 1

    Great moments often catch us unaware-beautifully wrapped in what others may consider a small one.

    I may not have gone where I intended to go,
    but I think I have ended up where I needed to be.

  6. #6
    I have to chime in on the FNB also-I also had one and it came back negative. Delayed my diagnosis (still in the process) for a good two years and until I ended up really sick. I would demand an excisional biopsy for your peace of mind.
    43 years old
    Peripheral T-Cell Lymphoma, NOS 4B 4/21/2011
    CHOP-21 to begin 4/26/2011 6-8 cycles
    ICE X 2, auto SCT 12/6/11
    www.caringbridge.org/visit/jeannelawson1

    "Y un dia despues de la tormenta, cuando menos piensas sale el sol"-Shakira
    "One day after the storm, when you least expect it the sun will come out."

  7. #7
    Newbie New User
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    Thank you all for your responses. I will keep you all posted. At the moment it is just a waiting game Ihave no idea how long it will take to get an appointent for the biopsy. I live in the UK so although have the benefits of not having to worry about costs/insurance etc we dont have a any choice in what drs we go to or indeed the treatment so not sure if I can demand an excisional biopsy but I will sure try after your stories.
    Thanks again

  8. #8
    Hi Awigham,

    Just wanted to say hello and I will be thinking about you and you daughter. Hopefully everything will go as you want it to. Wishing you well.

    xxx
    Michelle
    Age 48 (44 when first diagnosed)
    Diagnosed with Follicular Lymphoma 11th Feb 2011
    Stage 3B
    CT scan & biopsy from under arm
    Lymph nodes in neck, collar bone and under arms. Enlarged spleen.
    Weight loss & fatigue
    Treatment - R-CHOP 8 cycles 21.2.11 to 18.7.11

    2 Monthly Retuximab maintainence starts 12.9.11 for 2 years

    17.4.15 - Relapse confirmed

    I remember the RULES!!!!!

  9. #9
    Administrator Top User Kermica's Avatar
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    Hi Awigham, best of luck with your daughter's procedure. As ChemoMan said, for most of those that visit here the issue is not cancer so be encouraged by that fact.

    My daughter went through 4 full blodd transfusions to save her life when she was born and then had heart surgery at eight months old. She is now a happy, succesful 17 year old getting ready to look at colleges. My point is tht, no matter how dark things seem at any given moment, there is almost always a light beyond the darkness that will lead to good things for those involved. The trick is to stay focused on the light and not the darkness.

    Good luck to you and your daughter.

    Good health,

    kermica
    When the world says, "Give up," Hope whispers, "Try it one more time."
    ~Author Unknown

    Age 67
    Follicular lymphoma diagnosed August 08, Stage 1
    2 cycles (20 treatments each) localized radiation to tumor sites. Remission confirmed July 09
    Restaged to Stage 3 May 2010
    Recurrence confirmed May 2010 - Watch and Wait commenced - multiple scans with minimal progression.
    Cutaneous Squamous Cell Carcinoma diagnosed September 2012. Mohs surgical excision 09/2012. Successful, clean edges all around.
    Significant progression detected in PET scan - December 2012
    Biopsy to check for transformation 1/18/2013 - negative for that but full of lymphoma, of course.
    July 2013 - Rescan due to progression shows one tumor (among many) very suspect for transformation, another biopsy 8/12/13.
    August 2013 - No evidence of transformation, 6 courses of B+R commence 8/29 due to "extensive, systemic disease".
    February 2014 - Diagnostic PET scan states: Negative PET scan. Previous noted hypermetabolic cervical, axillary, iliac and inguinal lymphadenopathy has resolved. Doctor confirms full remission.
    June 2014 - started 2 year maintenance Rituxan, 1 infusion every 3 months. Doctor confirms lump under right arm are "suspicious" for recurrent disease, deferring scans for now.
    February 2015 - Doc and I agreed to stop R maintenance as it is depressing my immune system too much.
    June 2015 - Confirm that the beast is back by physical exam, will scan in August after esophageal issues settle down so we can get a clear view.
    August 2015 - physical exam in error, PET/CT shows no evidence of disease. Remission continues well into second year!
    December 2015 - Cardiologist tells me I have plaque buildup growing at an alarming rate. Stent or bypass down the road but not yet...
    March 2016 - new tumor below the jaw so remission is over. Back to active surveillance until treatment is needed.
    June 2016 - C/T scan indicates presence of multiple lesions in iliac chain.
    August 2016 - PET/CT shows multiple areas of lymphoma as expected plus new areas of concern in bowel.
    January 2017 - C/T scan shows significant progression in cervical and inguinal lymph chains, largest tumor is impacting hearing, measures 2.1x4.6 cm. 4 to 8 cycles of R-CVP, 1x3weeks to commence 2/6/17.
    April 2017 - Mid treatment scan shows about 1/3 reduction in multiple tumors. Also shows abdominal aortic aneurysm with peripheral thrombus. Cardiologist changed meds, spoke of need for surgical repair down the road.
    September 2017 - finished 10 rounds of R-CP, V was stopped due to neuropathy in feet. No further treatment planned at this time, at least 10 tumors can be felt which seem to be growing again.
    December 2017 - Biopsy of external iliac node with SUV of 13.1 shows no transformation! However, the FL grade is now 3A instead of Gr 1-2. Will start indefinite protocol using Copanlisib, one of the new targeted therapies. I remain hopeful.
    March 2018 - Copanlisib failed, treatment stopped 3/28. New plan is to go to Dana Farber on 4/16 for case review and treatment recommendation.

    May 2018 - did not qualify for clinical trials at Dana Farber. Tumors need to get larger to be considered. On consultation w/Dr. Armand at DF and my onc, have decided to take a break from cancer treatments. Will have a biopsy of the mass in my sinus discovered in scan at DF and to get the aneurysm repaired as it has developed a potentially catastrophic penetrating ulcer. Surgery scheduled for 7/12.

    September 2018 - biopsy of mass in nose shows transformed DLBCL throughout. Assessing options for this negative development.

    October 2018 - started 6 to 8 cycles of R-CHOP. Goal is to get to full remission to open up other options.

    February/March 2019 - PET shows four hot spots following R-CHOP. referred to Dana Farber for stem cell transplant. Pre testing all good, accepted for Auto Transplant. Will begin inpatient process about April 1.

  10. #10
    Newbie New User
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    Apr 2011
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    Hi Again
    Just wanted to keep you updated. I still have no appointment for my daughter to get the biopsy The NHS in the UK is great but it has its downsides. Looking for a way to get this done privately now.
    Hope you are all keeping well
    x

 

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