A website to provide support for people who have or have had any type of cancer, for their caregivers and for their family members.
Results 1 to 10 of 10

Thread: How to tell a child they have cancer (and should you?)

  1. #1
    Moderator Top User
    Join Date
    May 2011
    Location
    Illinois
    Posts
    776

    How to tell a child they have cancer (and should you?)

    Apologies if this question has been asked a million times before.

    We've just found out our 9 year old has lymphoma (waiting for final tests to determin HL or NHL). Is it appropriate to tell a 9 year old they have cancer, and if so what's the best way of doing it without terrifying them?

    THanks
    Nikos

    Glioblastoma IV, frontal lobe - Dx March 2011. Treated with standard Stupp protocol
    Recurrence August 2016 (at 5 years PFS). Surgery August 2016, rechallenge with TMZ with immunotheraphy (nivolumab)

  2. #2
    Administrator Top User lisa1962's Avatar
    Join Date
    Jan 2013
    Location
    new york
    Posts
    2,582
    Nikos:

    I am so sorry to hear of your boys tests results. Of course, I an not even begin to imagine all that is going through your mind at the moment. My guess is, he probably knows something is not right but at his young age, to grasp a cancer diagnosis may be difficult. If he is going to be treated at a children's hospital, I would reach out to them. I am sure they must have members on staff that can assist the family in discussing cancer to a child.

    Will keep you all in my thoughts and prayers. I see you have posted in the lymphoma forum and you know how knowledgeable they are. They will, no doubt help guide you along this path without hesitation.

    Lisa

  3. #3
    Administrator Top User ChemoMan's Avatar
    Join Date
    Jun 2008
    Location
    South Australia
    Posts
    9,483
    Blog Entries
    2
    Quote Originally Posted by NikosF View Post
    Apologies if this question has been asked a million times before.

    We've just found out our 9 year old has lymphoma (waiting for final tests to determin HL or NHL). Is it appropriate to tell a 9 year old they have cancer, and if so what's the best way of doing it without terrifying them?

    THanks
    Nikos

    The best I can suggest is to put your self in your child's shoes. Would you want to be told ?

    What I would like to know is how on Earth are you going to hide it? Even at the age of nine it would be pretty obvious what was going on. Seriously you would have to be a very inventive liar to fool someone undergoing chemo for blood cancer that it was not cancer.

    Basically you are asking if you should lie to your child...I think this is a very bad idea.
    Age 60
    Diffuse Large B cell Lymphoma
    Stage 2a
    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

    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.

  4. #4
    Senior User IndyLou's Avatar
    Join Date
    Jan 2014
    Location
    Indiana
    Posts
    172
    Hello, Nikos...I'm very sorry to hear of your child's diagnosis. As a former cancer patient, some of the treatments are bad enough as an adult, much less having to go through this as a child.

    The others have made some good comments and advice. I couldn't imagine keeping such a thing from a child because I think they know much more than we sometimes give them credit for knowing. While you might spare them details about survival and response rates, you might as well take the opportunity to educate both yourself and your child about their disease. They have a disease called "cancer." It's not a punishment for them; it's not related to something they did or didn't do. Often, good people get cancer because that's how life works sometimes.

    I would also tell them about some of tests and procedures, how they're used, and how they will affect your child. Talk about the treatments, the medicines, and most of all, how the they need to be a part of the treatment process as the patient. They need to be able to tell the doctors and nurses how they feel about things, and ask questions about things they don't understand. Having them onboard and involved with the process is important and empowering, in my opinion.

    I wish you and your family all the best, and please don't hesitate to stay involved on this forum with questions and concerns.
    Age 50 Male
    early Feb, 2013 - Noticed almond-sized lump in shaving area, right side of neck. No other "classic" cancer symptoms
    late Feb, 2013 - Visited PCP for check-up, PCP advised as lymphoma. Did blood work, orders for CT-scan, referred to ENT
    3/7/13 - CT-scan inconclusive, endoscopy negative
    3/9/13 - FNA of neck mass
    3/14/13 - Received dx of squamous-cell carcinoma, unknown primary
    3/25/13 - CT-PET scan reveals no other active tumors
    3/26/13 - work/up for IMRT
    4/1/13 - W1, D1 of weekly cetuximab
    4/8/13 - W1, D1 of IMRT
    5/20/13 - complete 8 week regimen of weekly cetuximab
    5/24/13 - Complete 35-day regimen of daily IMRT
    mid-July 2013 - CT-PET scan reveals no active tumors, but shows necrotic tissue at site of original tumor
    early Sept 2013 - partial neck dissection to remove necrotic tissue. Assay shows no cancer present.
    Spring 2014 - No signs of cancer
    Spring 2015 - No cancer
    Spring 2016 - No cancer

  5. #5
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Location
    Pacific NW, USA
    Posts
    6,999
    Your child knows that something is amiss, and that it is not a cold, as it was those other times. Their level of maturity must guide, but the truth can be apportioned out as needed. Best to tell them that they are sick and that doctor is going to help make them well once again. If they ask, you could say that the medicine is yucky, but that it goes after the illness and makes things better. Many times, children are more resolute than adults, as they have not learned the cynicism and loss of hope that adults suffer from.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. >50 tumors, marrow involvement.
    08/08-12/08 Four cycles CHOEP14 + four cycles GND (Cyclofosfamide, Doxorubicin, Vincristine, Etoposide, Prednisone & Gemcitabine, Navelbine, Doxil)
    02/09 2) Relapse.
    03/09-06/13 Clinical trial of Romidepsin > long-term study. NED for 64 twenty-eight day cycles, dose tapered.
    07/13 3) Relapse, 4) Suspected Mutation.
    08/13-02/14 Romidepsin increased, stopped for lack of response. Watch & Wait.
    09/14 Relapse/Progression. Visible cervical nodes appear within 4 days of being checked clear.
    10/06/14 One cycle Belinostat. Discontinued to enter second clinical trial.
    10/25/14 Clinical trial of Alisertib/Failed - Progression.
    01/12/15 Belinostat resumed/Failed - Progression. 02/23/15
    02/24/15 Pralatrexate/Failed - Progression. 04/17/15
    04/15 Genomic profiling reveals mutation into PTCL-NOS + AngioImmunoblastic T-Cell Lymphoma. Two dozen tumors + small intestine (Ileum) involvement.
    04/22/15 TREC (Bendamustine, Etoposide, Carboplatin). Full response in two cycles. PET/CT both clear. Third cycle followed.
    06/15-07/15 Transplant preparation (X-rays, spinal taps, BMB, blood test, MUGA scan, lung function, CMV screening, C-Diff testing etc. etc. etc.) Intrathecal Methotrexate during spinal tap.
    BMB reveals 5) Myelodysplastic Syndrome (MDS), a bone marrow cancer.
    07/11-12/15 Cyclofosfamide + Fludarabine conditioning regimen.
    07/16/15 Total Body Irradiation.
    07/17/15 Haploidentical Allogeneic Transplant receiving my son's peripheral blood stem cells.
    07/21-22/15 Triple dose Cyclofosfamide + Mesna, followed by immunosuppressants Tacrolimus and Mycophenolate Mofetil.
    07/23-08/03/15 Blood nose dive. Fever. Hospitalized two weeks.
    08/04/15 Engraftment official - released from hospital.
    08/13/15 Marrow is 100% donor cells. Platelets climbing steadily, red cells follow.
    09/21/15 Acute skin GvHD arrives. DEXA scan reveals Osteoporosis.
    09/26/-11/03/15 Prednisone to control skin GvHD.
    05/2016 Tacrolimus stopped. Prednisone from 30-90mg daily tried. Sirolimus begun.
    09/16/16 Three skin punch biopsies.
    11/04/16 GvHD clinical trial of Ofatumumab (Arzerra) + Prednisone + Methylprednisolone begun.
    To date: 18 chemotherapeutic drugs in 9 regimens (4 of them at least twice), + 4 immunosuppressant drugs.

    I have been chosen to suffer, therefore, I am blessed. Knowing the redemptive value of suffering makes all the difference.

    "What is faith? It is that which gives substance to our hopes, which convinces us of things we cannot see"
    - Hebrews 11:1

  6. #6
    Moderator Top User
    Join Date
    May 2011
    Location
    Illinois
    Posts
    776
    Thanks everyone - we told our son yesterday. It was one of the most difficult things my wife and I have ever had to do. We debated long and hard and got the input of a 'child life specialist' at our childrens' hospital on whether to use the word cancer - versus just saying lymphoma. In the end we did and he took it all remarkably well after some tears.
    Nikos

    Glioblastoma IV, frontal lobe - Dx March 2011. Treated with standard Stupp protocol
    Recurrence August 2016 (at 5 years PFS). Surgery August 2016, rechallenge with TMZ with immunotheraphy (nivolumab)

  7. #7
    Administrator Top User Kermica's Avatar
    Join Date
    Jul 2009
    Location
    New York
    Posts
    5,864
    Nikos, I am very sorry to learn about your son's diagnosis. May the treatment work flawlessly with minimal side effects. It is my hope for you and your family that his treatment results in full remission which lasts all the rest of his life.

    You and your wife have done the right thing in telling him what is going on with his health. You will all (along with his care team) be able to make this journey more easily than if you were trying to have him go through this while not knowing what was wrong. That could only result in lies and stress for everyone. Good luck with everything, I can't imagine absorbing a blow like this, especially with all you have been through already.

    Good health,

    kermica

  8. #8
    Moderator Top User jorola's Avatar
    Join Date
    May 2014
    Location
    Alberta
    Posts
    926
    I wish I had the right words to say. I too can't imagine what your son or you and your family are going through. I think you have done the right thing and I know you will do everything to support him through this. Peace and comfort to you all.
    Wife to husband with squamous lung cancer stage 3 b
    dx - April 20/14
    tx started May 20/14 - radiation and chemo
    June 23 - chemo finished
    June 24 - tumor 1/3 the original size
    July 4 - radiation finished
    July 8 - PET scan shows tumor almost gone, lymph nodes back to normal
    Married July 19/14
    Sept 9/14 - repeat can shows tumor continues to shrink more, no new spots. New coughing and pain due to chest infection or side effect of radiation.
    Sept 19/14 - not infection but pneumonitis, place on dex for 4 weeks
    Oct 22/14 - now off of dex and facing even more symptoms of withdrawal
    Dec 16/14 - pretty much nothing left but a scar
    April 7/15 - ditto scan and screw you stats
    Oct 6/15 - more scarring but still cancer still gone
    Feb 2016 -scan the same
    Aug 2016 - more of the same

  9. #9
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Location
    Pacific NW, USA
    Posts
    6,999
    Classical Hodgkin's has a very high cure rate. Take comfort in that, as well as the fact that children can withstand levels of treatment that would likely be fatal to an adult.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. >50 tumors, marrow involvement.
    08/08-12/08 Four cycles CHOEP14 + four cycles GND (Cyclofosfamide, Doxorubicin, Vincristine, Etoposide, Prednisone & Gemcitabine, Navelbine, Doxil)
    02/09 2) Relapse.
    03/09-06/13 Clinical trial of Romidepsin > long-term study. NED for 64 twenty-eight day cycles, dose tapered.
    07/13 3) Relapse, 4) Suspected Mutation.
    08/13-02/14 Romidepsin increased, stopped for lack of response. Watch & Wait.
    09/14 Relapse/Progression. Visible cervical nodes appear within 4 days of being checked clear.
    10/06/14 One cycle Belinostat. Discontinued to enter second clinical trial.
    10/25/14 Clinical trial of Alisertib/Failed - Progression.
    01/12/15 Belinostat resumed/Failed - Progression. 02/23/15
    02/24/15 Pralatrexate/Failed - Progression. 04/17/15
    04/15 Genomic profiling reveals mutation into PTCL-NOS + AngioImmunoblastic T-Cell Lymphoma. Two dozen tumors + small intestine (Ileum) involvement.
    04/22/15 TREC (Bendamustine, Etoposide, Carboplatin). Full response in two cycles. PET/CT both clear. Third cycle followed.
    06/15-07/15 Transplant preparation (X-rays, spinal taps, BMB, blood test, MUGA scan, lung function, CMV screening, C-Diff testing etc. etc. etc.) Intrathecal Methotrexate during spinal tap.
    BMB reveals 5) Myelodysplastic Syndrome (MDS), a bone marrow cancer.
    07/11-12/15 Cyclofosfamide + Fludarabine conditioning regimen.
    07/16/15 Total Body Irradiation.
    07/17/15 Haploidentical Allogeneic Transplant receiving my son's peripheral blood stem cells.
    07/21-22/15 Triple dose Cyclofosfamide + Mesna, followed by immunosuppressants Tacrolimus and Mycophenolate Mofetil.
    07/23-08/03/15 Blood nose dive. Fever. Hospitalized two weeks.
    08/04/15 Engraftment official - released from hospital.
    08/13/15 Marrow is 100% donor cells. Platelets climbing steadily, red cells follow.
    09/21/15 Acute skin GvHD arrives. DEXA scan reveals Osteoporosis.
    09/26/-11/03/15 Prednisone to control skin GvHD.
    05/2016 Tacrolimus stopped. Prednisone from 30-90mg daily tried. Sirolimus begun.
    09/16/16 Three skin punch biopsies.
    11/04/16 GvHD clinical trial of Ofatumumab (Arzerra) + Prednisone + Methylprednisolone begun.
    To date: 18 chemotherapeutic drugs in 9 regimens (4 of them at least twice), + 4 immunosuppressant drugs.

    I have been chosen to suffer, therefore, I am blessed. Knowing the redemptive value of suffering makes all the difference.

    "What is faith? It is that which gives substance to our hopes, which convinces us of things we cannot see"
    - Hebrews 11:1

  10. #10
    Super Moderator Top User
    Join Date
    Dec 2011
    Location
    USA
    Posts
    4,148
    Nikos, I just saw this. I'm so sorry that this has happened. Hoping your son has his dad's cancer-fighting-Ninja powers, as I'm sure he must. At least the survival rate seems to be very high but, sigh. Wishing your son good days and as few side effects as possible

 

Similar Threads

  1. Who do you tell? and why tell them?
    By Maverick91 in forum Prostate Cancer Forum
    Replies: 13
    Last Post: 03-03-2016, 05:41 AM
  2. what they dont tell you about cervical cancer
    By chadisty in forum Cervical Cancer Forum
    Replies: 11
    Last Post: 10-23-2015, 02:28 PM
  3. How to Tell a Child a Parent is Dying?
    By ArizonaGirl in forum Colon Cancer and Rectal Cancer Forum
    Replies: 4
    Last Post: 09-27-2015, 03:18 PM
  4. When do you tell family that you might have cancer?
    By equinenut in forum Worried About Possible Cancer
    Replies: 6
    Last Post: 10-18-2013, 02:16 AM
  5. They never tell you how bad it can get
    By Androoo in forum Cervical Cancer Forum
    Replies: 7
    Last Post: 09-16-2012, 08:48 AM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •