Help! doctors disagree on treatment

socalgal63
socalgal63 Member Posts: 5
in Head and Neck Cancer #1

A little about me.. 52 yr old woman living with 25 year old son and 5 year old grandson. DX is stage 4 SCC primary left palatine tonsil, secondary lymph node in neck and multiple suspiscious lymph nodes in chest.

No treatment started. ENT has referred me to radiation and chemo docs. Chemo doctor unsure about starting radiation without doing any surgery, states maybe need 2nd opinion. Where do I go from here? My insurance, my medical group, primary doc? I feel like I cannot afford to have them not get this right. The oncologist is concered we cannot go back and do surgery after radiation.

 

Comments

  • MarineE5
    MarineE5 Member Posts: 1,030 Member
    #2
    Understand your concern

    socalgal63,

    I can understand your concern about getting this right the first time and hopefully the only time you walk this path. Many here will say to get a 2nd opinion and it is a wise move if you feel you need to do so. The Chemo Doctor was correct about the Radiation according to my Surgeon, if Radiation is done first before he operates, the DNA in our tissue changes. That in turn affects the recovery time for healing at the surgery sites, it can double the time of recovery/ healing. 

    My treatment was Surgery first where I had part of my tongue removed due to Base of Tongue cancer. I was given roughly 7 weeks to heal up before starting my Radiation treatments. That was over 10 yrs ago and I did not have reoccurance since then. The Surgeon and Radiation Ocologist held back on the Chemo so it was a back-up in the event I did have reoccurance.

    I had a tumor on the Base of my Tongue with 2 Lymphnodes involved. I had the surgery as mentioned part of tongue removed, Peg Tube, Trach, and Radicial Neck Disection with over 30 Lymphnodes removed.

    I felt comfortable with my Team of Surgeon, Radiation Oncologist, Cancer Dentist, etc. So I did not seek a 2nd opinion. Had I felt uncomfortable, I would have seeked a 2nd or even a 3rd if needed.

    My Best to You and Everyone Here

  • socalgal63
    socalgal63 Member Posts: 5
    #3
    MarineE5 said:

    Understand your concern

    socalgal63,

    I can understand your concern about getting this right the first time and hopefully the only time you walk this path. Many here will say to get a 2nd opinion and it is a wise move if you feel you need to do so. The Chemo Doctor was correct about the Radiation according to my Surgeon, if Radiation is done first before he operates, the DNA in our tissue changes. That in turn affects the recovery time for healing at the surgery sites, it can double the time of recovery/ healing. 

    My treatment was Surgery first where I had part of my tongue removed due to Base of Tongue cancer. I was given roughly 7 weeks to heal up before starting my Radiation treatments. That was over 10 yrs ago and I did not have reoccurance since then. The Surgeon and Radiation Ocologist held back on the Chemo so it was a back-up in the event I did have reoccurance.

    I had a tumor on the Base of my Tongue with 2 Lymphnodes involved. I had the surgery as mentioned part of tongue removed, Peg Tube, Trach, and Radicial Neck Disection with over 30 Lymphnodes removed.

    I felt comfortable with my Team of Surgeon, Radiation Oncologist, Cancer Dentist, etc. So I did not seek a 2nd opinion. Had I felt uncomfortable, I would have seeked a 2nd or even a 3rd if needed.

    My Best to You and Everyone Here

    Thanks for your reply. I

    Thanks for your reply. I think I do need second opinion and need to figure out how to make it happen.

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    #4
    Second Opinion

    Second opinions are important.  I would find a head and neck specialist with a good bit of experience.   As far as surgery first, my husband underwent 35 radiation and 3 chemo treatments first for laryngeal cancer.  Sadly it didn't work and he then underwent surgery at the age of 74.  We didn't get a second opinion first which in hindsight I wish we had.  We trusted our oncologist and local ENT because we had been using them for quite a few years for a different reason.  My husband had no trouble with healing.  In fact our head and neck specialist was very pleased with the way my husband healed and he had to do more than just removed his larynx.  Sadly a second primary was diagnosed one year later and they did refused to do surgery so he underwent more radiation and chemo.  The second round of radiation was basically in the same place as the first.

    Have they biopsed the lymph nodes in the chest?  Treatment can take several weeks to get started.  I know my husband's treatment started about 4 weeks after our local ENT did a biopsy because they did several other tests first. 

    Wishing you the best -- Sharon 

  • wmc
    wmc Member Posts: 1,804
    #5
    Second opinion...........YES

    I will agree with the others. Get a second opinion. Have your ENT refer you to a specitaly hospital like UCLA.

    http://health.usnews.com/best-hospitals/rankings/ear-nose-and-throat  you can also change this for cancer as well. UCLA is rated in both very high which is good. I am assumeing you are in So Cal.

    It is better to have surgery first as radiation makes the skin and muscle much more like leather and harder to have surgery after. It might take a month to be seen but that is ok. Ask your ENT to request you are marked URGENT. It does help. I was in Stanford the next week because the tumor board meets once a week and I could not get there the next day. There has been many with SCC of the tonsils and have all done just fine. Lymph nodes get enlarged when you have any infection and are doing what they are supposed to do. It will be a rough road you are going to go down, but so many have been down it before you and we will all try to help. Never go to the doctor alone. Have someone go with you so you can hear what the doctor says. He will say something thats throws you and then you don't hear everything. It is ok to use your phone and tape it. You will have questions, so write them down and leave room for answers. Hand it to the doctor, he will answer them and mine even wrote the answers down. Just take one day at a time, and remember you are not alone, but you will need some help at home to make it easier on you.

    Bill

  • ratface
    ratface Member Posts: 1,337 Member
    #6
    Find another treatment facility, maybe?

    I was treated initially at a very small hospital and even they had a team approach. Why is your chemo doctor weighing in on radiation decisions. You need a radiasition specialist as well as a chemo doctor and a surgeon at a minimum. Your cancer isn't that far out of the norm, they have this stuff flow charted for treatment options. You need a Tumor Board to make a recomendation. This recomendation can be implemented anywhere. Surgery though more difficult after radiation is still possible and it's done both ways. You have time to do this. Your doctor can explain second opinion procedures to you. Much of it can be done by mail, they can send lab results and imaging results across the country. Start with your current doctors. We have all been on this roller coaster, you start out finding answers and options until you find a treatment plan/doctor that feels right. Then put your full trust in them and let go of the handle bars.

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #7
    socal, be sure to get a 2nd

    socal, be sure to get a 2nd opinion.  surgery is better before radiation because radiation ruins the skin and makes it very, very hard for a wound to heal.  It took my neck 7 months and 2 additional surgeries to heal.  i will be praying for you.

    God bless you,

    dj

  • cmai
    cmai Member Posts: 21
    #8
    surgeon opinion

    I would research for best surgeon in the area and see 2-3 for opinion...the most important question you need to ask is "  are they able to give you negative margins with surgery."

     

    Kathy

  • robswife87
    robswife87 Member Posts: 209
    #9
    Tonsil, Lymph Nodes and no Surgery for my husband

    Our doctors did not due surgery to my husband. He had radiation and chemo together for 7 weeks. Currently 2 years out and no cancer.

    I did ask about surgery and tehy stated no need for it as the radiation would be hitting all nodes and tonsils and if anything remained or the cancer came back then there would be surgery

    OUr doctors are at the University of Michigan Hospital and all of them are the head of thier departments. Our radiation doctor is also very renown in his area and is highly published. He only deals in Head and Neck cancer. 

    We never questioned the decisions made, and I believe we had the best the cancer world has to offer.

    Make sure you are at a major comprehensive cancer center, they are the most skilled in the area of cancer. 

    Sandy

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