Where to get treatment?

Fullrecoveryplease
Fullrecoveryplease Member Posts: 7
in Head and Neck Cancer #1

I have a parotid gland tumor that is growing into my lymph nodes. Also some spots on my lungs. Had EBUS procedure on Friday and waiting for results. Drs. Say parotid gland is primary and want to do radiation and chemo but nothing will happen until pathology from EBUS comes back. The waiting is so Frustrating! how long should I expect to wait before actual treatment will happen? Started at North Shore LIJ and have a treatment team there, did last EBUS at Memorial Sloan-Kettering, hoping to get treatment there for convenience and insurance coverage but feel like going with whoever can start treatment first. 
What do you think?

Comments

  • wmc
    wmc Member Posts: 1,804
    #2
    Welcome to the H&N Group

    Welcome and sorry you need to be here. Sloan-Kettering is one of the best ans if it better for insurance it might be the best. That is something only you can decide. All I had was surgery and my larynx removed and 86 lymph glands. No chemo of radiation. I stopped countimg at $350,000. Insurance will mater. From when I was told to when I had surgery it was two months, but I was fast tracted. When my doctor called Stanford I was seen the next week and then had to wait three weeks to make sure I had no aspren or anything that would thin my blood. The doctor that found mine was my lung doctor and all he could was take a brushing, he felt that a biopsy would start more bleeding and he could not stop it even tho I was in the hospital. 

    This will be a very rough road you are going down. Many have done befor you and did fine. They say the treatment for H&N is the second worse you can go through, but it has some of the best resultes as well. Just take one day at a time, and at times it seams slow. Most likely you will chave chemo and radiation, so if you can put on some extra pounds now and keep hydrated. Get the attitude you will beat this and anything else there is, it does help. Also know you are not alone and there many here to help with support. Will add you to my prayer list.

    Bill

  • phrannie51
    phrannie51 Member Posts: 4,716
    #3
    Welcome to this board, Full...

    you've found an excellent place to hang your hat for a while.  Lots of smart and supportive people here.

    Starting treatment is a slow process.....and it's this waiting part that is hardest on us emotionally.  I certainly felt better when I left the bystander mode and entered into actively fighting with rads and chemo.  It is not unusual for it to take a month to almost two months to get going.  I was diagnosed on March 5th, 2012...and my first rad/chemo treatment was the 21st of April.  One or two weeks are not going to make any difference....so if if this were me, I'd stick with Sloan-Kettering....they are a huge hospital with a cancer team, and see many MANY Head and Neck cancer patients. 

    p

  • wmc
    wmc Member Posts: 1,804
    #4
    Where to go....

    http://health.usnews.com/best-hospitals/rankings/ear-nose-and-throat

    This is a list of the best ENT and you can switch it to Cancer as well. Hope this can help find a plact for treatment.

    Bill

  • Barbaraek
    Barbaraek Member Posts: 626
    #5
    Waiting is hard...

    You didn't develop this problem in a day, and you won't get rid of it in a day either. Take a deep breath and try to be seen at the facility that will offer you the best treatment and chance for recovery...even if that means having to wait a little bit. The immediate, normal reaction is "I have to DO something, NOW". Take your time, weigh the pros and cons of the places where you might be treated and then make your decision.

    Best of luck to you!

    Barbara

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #6
    hi full and welcome to our

    hi full and welcome to our family.  i'm sorry you needed to find us but glad you did.  you will find lots of first hand information here as it is from actual patients who have walked a mile in your shoes.  several here have waited as long as 2 months for tx to start.  so, yes it is frustrating, but it does happen.  i don't think the docs realize what that does to one's nerves!  I've never heard of EBUS?  What is that?  Anyway, we will be here for you anytime you need us.  if you have questions, ask away.  nothing is off limits in this group as we are all here to help one another.  look closely as you take this journey, we are all on the sidelines cheering you on and we'll be there when you ring the bell indicating tx is finished!!

    God bless you,

    dj

  • louhou13
    louhou13 Member Posts: 46
    #7
    Another possible option...

    Hello, I am cutting and pasting an answer I just posted under a different heading. I, obviously am a big fan of immunotherapy. Good luck!!

    Hello, I do not post often but do read the posts. I was originally diagnosed in 2012  with stage IV tonsil cancer with lymph node involvement on both sides of neck. I had a modified bilateral (ear to ear) neck dissection. No chemo or rads as I had those for lymphoma 20 years prior. I was NED a until a recurrance in 2013. In April 2014 I joined a clinical trial for MEDI4736 at The Angeles Clinic in Los Angeles with Dr. Ani Balmanoukian (The trial is offered in other places). 1 hour infusions 2X/month with practically no side effects (some itching for 2-3 weeks) The trial lasted a year and to date I'm NED. About MEDI4736: MEDI4736 is a human monoclonal antibody directed against programmed cell death ligand 1 (PD-L1). Signals from PD-L1 help tumours avoid detection by the immune system. MEDI4736 blocks these signals, countering the tumour’s immune-evading tactics. MEDI4736 is being developed, alongside other immunotherapies (IMTs), to empower the patient’s immune system and attack the cancer. 

    I"m more than happy to answer questions if you would like. 

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