My son has MPNST, need info please

taminator28
taminator28 Member Posts: 3 Member
edited September 2023 in Head and Neck Cancer #1

My 14 year old son has recently been diagnosed with MPNST. Neurofriboma runs in my family on my side. I have it as well, but I have never had a malignant tumor that large.

His is located in his neck and upper chest area, about 4.5". It is pushing his trachea to the side slightly and has completely encased some major arteries and nerves.

They are still doing tests and scans, as we found out about this about 2 weeks ago when I took him to a Velocity Care because he said his shoulder hurt.

As is, they cannot operate, and as a mother I would like to know what my son is about to go through. They have already gotten a port into his chest, and I would like to know from others that have been through it how the treatments went, and how their journey went. Reading things on Google scared me, but after reading other people's stories it lifted me, it helps a lot to see that others have survived this horrible cancer.

Comments

  • wbcgaruss
    wbcgaruss Member Posts: 2,466 Member
    edited September 2023 #2

    taminator, welcome to CSN H&N discussion board. I must say I have no experience with this nor have heard of it before. I would say lean heavily on your son's care team for information. I believe he would be considered a specialized case.

    I did some searching and found two discussions on here, CSN, in the Sarcoma section, a very good discussion I think you will find some hope in it--

    https://csn.cancer.org/discussion/236251/mpnst-malignant-peripheral-nerve-sheath-tumor


    And Here is another discussion on CSN in the Rare And Other Cancers I hope it helps--

    https://csn.cancer.org/discussion/158325/mpnst




    I did find this also--"In addition, some MPNST are too large or too close to

    important blood vessels or organs to remove safely with surgery. In these cases, radiation and

    chemotherapy may be used to try to shrink the tumor before surgery. Many patients will receive a

    combination of all three types of treatment. The best treatment is usually determined by several doctors

    with specialized expertise."

    https://www.nfmidwest.org/wp-content/uploads/2020/03/What-is-MPNST-Gross-NIH-2020.pdf

    That is promising that they are coming up with a treatment plan for him and have a port in.

    On here we say "NEGU (Never Ever Give Up)"

    Never give up, keep hope.

    Trust in God and pray, pray, pray.


    I found this survivor story but the cancer was not where your sons is--it may help you--

    Sarcoma Survivor: Jody Johnson

    https://www.reininsarcoma.org/sarcoma-survivor-jody-johnson/


    May God watch over you and your son and Bless you Greatly.

    Take Care, God Bless

    Russ

  • taminator28
    taminator28 Member Posts: 3 Member
    #3
    https://csn.cancer.org/discussion/comment/1709153#Comment_1709153

    Thank you for all the information. He has already had his first chemo treatment with Doxorubicin and ifosfamide. Plan is for 4 chemo treatments every 21 days, his next treatment is coming up but they are adding radiation as well. So he'll be getting chemo and radiation at the same time.

    They did have a meeting about him and had the surgical team there. Once the tumor is small enough they are going to remove it.


    I just hope and pray that these treatments my son is about to go through will shrink it away from the major arteries it's wrapped around and it can safely be removed so he can have a normal life.

  • wbcgaruss
    wbcgaruss Member Posts: 2,466 Member
    #4

    Oh my dear taminator, it sounds like his medical team is very positive that treatment and surgery will be successful.

    Praise God and I am praying for your son for a complete cancer-free recovery through this and strengthening and endurance for you during this time.

    Thanks for the update, keep us posted as you can.

    Wishing You the Best

    Take care, God Bless

    Russ

    God Is Fighting Battles For You.png


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