Husband in No Cal told squamous cell cancer in neck inoperable by Kaiser tumor board.advice?

Marycal
Marycal Member Posts: 11
in Head and Neck Cancer #1

Hello, I am new to this and hope I am not breaking an protocol. But my husband and I received devastating news from the Kaiser tumor board that they will not operate on the tumor that has grown in his neck and wraps around his carotid artery. To complicate matters, he had radiation as a teenager for Hodgkins, which led to where we are now, and they may not give him a complete dose of radiation. Please, if anyone has any suggestions or advice about oncologists we should see, etc., please let me know!

Comments

  • caregiver wife
    caregiver wife Member Posts: 234
    #2
    Inoperable throat cancer

    Husband's throat cancer was inoperable at original diagnosis and when it returned 6 years later.  It, too, was wrapped around his carotid atery.  He was given Taxol/Carbo combination every three weeks for about 18 months.  No additional radiation, as it had been maxed out with his original diagnosis.  He has been in remission again for about a year and 1/2 now.  His oncologist has told him there are still treatment options should his cancer become active again.  You do not say if they have offered a treatment plan.  Has he talked to a medical oncolgist?  

    Every case is different in multiple ways.  I cannot offer advice for you, only that there were options for us that have worked.

    Wishing you both the very best,

    Crystal

  • bugsyboy
    bugsyboy Member Posts: 39
    #3
    Second Opinion

    Nothing against Kaiser, but that's where you go for a stuffy nose, too.  When I received my diagnosis in North Georgia, the Oncologist we saw scared the crap out of us with his diagnosis and prognosis.  We regrouped, did some research, and decided to go to a facility where all they do is Cancer.  We chose MD Anderson in Houston.  I suggest you go someplace for a second opinion where all they do is Cancer.  Check this out https://oralcancerfoundation.org/resources/best-hospitals-ratings/.  Best of luck with whatever you decide.

    Bugsy

  • Marycal
    Marycal Member Posts: 11
    edited September 2018 #4
    caregiver wife said:

    Inoperable throat cancer

    Husband's throat cancer was inoperable at original diagnosis and when it returned 6 years later.  It, too, was wrapped around his carotid atery.  He was given Taxol/Carbo combination every three weeks for about 18 months.  No additional radiation, as it had been maxed out with his original diagnosis.  He has been in remission again for about a year and 1/2 now.  His oncologist has told him there are still treatment options should his cancer become active again.  You do not say if they have offered a treatment plan.  Has he talked to a medical oncolgist?  

    Every case is different in multiple ways.  I cannot offer advice for you, only that there were options for us that have worked.

    Wishing you both the very best,

    Crystal

    Thank you, Crystal.  That is

    Thank you, Crystal.  That is heartening, and I wish you and your hysband the best. May I ask if you went to a specialized cancer treatment hospital? 

     

    No treatment plan as of yet, but we meet with radiation oncologist today to see if there are any options, and I think medical oncologist soon. We are wondering if we should go elsewhere. 

    Mary

  • AnotherSurvivor
    AnotherSurvivor Member Posts: 383 Member
    #5
    My comment is explicitly for

    My comment is explicitly for Kaiser.  I took my runny nose and Stage 3 HPV tonsil cancer to them and got exceptional treatment, including a chemo onc who taught at Emory, and rad onc who had just completed his fellowship in H&N cancer at MD Anderson.  My tumor board also pronounced mine unoperable, 35/7 rad and chemo followed.  By all means get a second opinion, but I would take my own case back to my docs at Kaiser Lonetree Colorado without hesitation.

  • Marycal
    Marycal Member Posts: 11
    edited September 2018 #6
    Thank you. We are looking

    Thank you. We are looking into MD Anderson. They have scared us too and seem very blase about it. UCSF is our first thought since it us local, but we will go elsewhere if needed.

  • Marycal
    Marycal Member Posts: 11
    edited September 2018 #7
    AnotherSurvivor said:

    My comment is explicitly for

    My comment is explicitly for Kaiser.  I took my runny nose and Stage 3 HPV tonsil cancer to them and got exceptional treatment, including a chemo onc who taught at Emory, and rad onc who had just completed his fellowship in H&N cancer at MD Anderson.  My tumor board also pronounced mine unoperable, 35/7 rad and chemo followed.  By all means get a second opinion, but I would take my own case back to my docs at Kaiser Lonetree Colorado without hesitation.

    Thanks

    Thank you. That is also heartening to hear.

  • caregiver wife
    caregiver wife Member Posts: 234
    #8
    Marycal said:

    Thank you, Crystal.  That is

    Thank you, Crystal.  That is heartening, and I wish you and your hysband the best. May I ask if you went to a specialized cancer treatment hospital? 

     

    No treatment plan as of yet, but we meet with radiation oncologist today to see if there are any options, and I think medical oncologist soon. We are wondering if we should go elsewhere. 

    Mary

    Treatment Center

    We did not go to a treatment center.  We are very fortunate to have a leading group of teaching oncolgists in our town.

    I, too, am a two time cancer survivor.  I sought a second opinion to help me decide the treatment plan to choose.

  • skidog
    skidog Member Posts: 74 Member
    edited September 2018 #9
    Proton Therapy?

    Have you considered Proton Therapy? I was treated at Mayo(Rochester MN) by Dr. Foote. Proton radiation is designed for many hard to reach tumors. Many children and adults with HNC have benefited from Proton. Good luck!

  • Marycal
    Marycal Member Posts: 11
    edited September 2018 #10
    skidog said:

    Proton Therapy?

    Have you considered Proton Therapy? I was treated at Mayo(Rochester MN) by Dr. Foote. Proton radiation is designed for many hard to reach tumors. Many children and adults with HNC have benefited from Proton. Good luck!

    We are going to consult, I

    We are going to consult, I hope, at UCSF about that. Thank you so much.

  • donfoo
    donfoo Member Posts: 1,771 Member
    #11
    try not to overworry

    Not using surgery for HNC cancer treatment is nothing to be scared of. Often times, radiation and chemo are offered without any surgery. The observation about cancer around the carotid artery is not unusual. I'm in NorCal and there are world class facilities right here. UCSF and Stanford offer expertise and experience found in very few hospitals in the world. Try not to worry unduly about either issue. Good luck.

  • Marycal
    Marycal Member Posts: 11
    edited September 2018 #12
    donfoo said:

    try not to overworry

    Not using surgery for HNC cancer treatment is nothing to be scared of. Often times, radiation and chemo are offered without any surgery. The observation about cancer around the carotid artery is not unusual. I'm in NorCal and there are world class facilities right here. UCSF and Stanford offer expertise and experience found in very few hospitals in the world. Try not to worry unduly about either issue. Good luck.

    Thank you for your comments.

    Thank you for your comments. They are comforting.

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