getting started

susanc1
susanc1 Member Posts: 24
in Head and Neck Cancer #1

HI everyone

Hubby has been diagnosed with base of tongue cancer and I have avidly been reading this site, which is very helpful. I thought I would get started by getting started. We are now in the process of first oncology visits and the radiation oncologist tomorrow. I'm sure we will have many questions and/or thoughts along the way and it looks like everyone here  is very helpful.

SO does anyone have any idea of what questions we should be asking the oncologist or the radiation oncologist?

 

thx

s

Comments

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,488 Member
    edited July 2016 #2
    susan, I look forward to some

    susan, I look forward to some of the replies to your question.  As a uterine cancer survivor people at work come to me when they have been diagnosed or fear they may have cancer.  I am honored to help them but today someone came to me to talk.   He is afraid he has throat cancer and I told him to go with a list of questions.  I will read older posts as I know how valuable they are, and reseach the world wide web, but look forward to the people who have the knowledge - the posters to this board - have to say. 

     

  • wmc
    wmc Member Posts: 1,804
    edited July 2016 #3
    Welcome to H&N group

    Welcome and also sorry you need to be here. Many seem to be BOT here and they will be able to answer more questions. Mine was just above my vocal cords and only had surgery with a neck dissection on both sides and removed 86 glands, and no chemo or radiation. When you go to your doctors write down all your questions and leave room for answers. Just hand it to the doctor and he should go over them all with you. Mine did and even wrote the answers as well.

    It is a very rough road he is going down and most say it is the 2nd worst treatment to have. However, is has very good results and so many have been down the road and beat it. Just take one day at a time, and remember there is a light at the end of this tunnel. Also, you are not alone.

    Bill

  • susanc1
    susanc1 Member Posts: 24
    #4
    wmc said:

    Welcome to H&N group

    Welcome and also sorry you need to be here. Many seem to be BOT here and they will be able to answer more questions. Mine was just above my vocal cords and only had surgery with a neck dissection on both sides and removed 86 glands, and no chemo or radiation. When you go to your doctors write down all your questions and leave room for answers. Just hand it to the doctor and he should go over them all with you. Mine did and even wrote the answers as well.

    It is a very rough road he is going down and most say it is the 2nd worst treatment to have. However, is has very good results and so many have been down the road and beat it. Just take one day at a time, and remember there is a light at the end of this tunnel. Also, you are not alone.

    Bill

    This is Al aka "S"s hubby

    First I am in denial.... But as everyone knows, denial must end to get through this. "S" has been a trooper so far and has really supported me in my desire to avoid what i should not. I truely don't know where to begin. I was told no surgery and as the tumor is small, about thhe size of a marble and some was cut out when they took out my tonsils to biopsy all of that area. They said chemo and radiation.

    The oncologist said there are several types of chemo, any advice or info on types?  Do all types of chemo have to have some type of port?

    I am in fairly decent health and pretty active, I am hopeing my beginning level of health will help in the long run. How active can I be?

    How soon can I be back to work after the last treatment? While I go through this will I make a shift from external thinking to enternal thinking?

    It truely just feels like my world has crashed. I guess that is why denial is soooo wonderful...LOL

  • RottiesMom
    RottiesMom Member Posts: 167
    #5
    Hi Al

    I have Stage IVA (metastized to 2 lymph nodes) tonsil cancer.  I am on chemo (cisplatin - 3 treatments ) and radiation  (7 weeks, 5 days a week).  I have had 2 Chemo and 3 weeks radiation so far.  My Doctors said no surgery.  Side effects starting to set in.  What is getting me through...knowing that for some reason this is God's plan for me, He will see me through and my husband, who is my other half.

    Joanne

  • susanc1
    susanc1 Member Posts: 24
    edited July 2016 #6
    RottiesMom said:

    Hi Al

    I have Stage IVA (metastized to 2 lymph nodes) tonsil cancer.  I am on chemo (cisplatin - 3 treatments ) and radiation  (7 weeks, 5 days a week).  I have had 2 Chemo and 3 weeks radiation so far.  My Doctors said no surgery.  Side effects starting to set in.  What is getting me through...knowing that for some reason this is God's plan for me, He will see me through and my husband, who is my other half.

    Joanne

    This is Al aka "S"s hubby

    Good info, I to have huge vains. I am hoping not to have any additional holes added. I was under the impression that chemo and radiation all happened at the same time. Is this true?

  • swopoe
    swopoe Member Posts: 492
    #7
    Hi Al and S. My husband Ethan

    Hi Al and S. My husband Ethan was diagnosed with tongue cancer (stage 1) last October. He had surgery, radiation and chemo. Now he is 6 months clean. He had radiation every day for 6 weeks and cisplatin one day a week for 5 weeks. So he would go each morning for radiation (M-F), and then on Tuesdays, he would then go to chemo after radiation (same office building). He would get 2 hrs of hydration on chemo days too. On Thursdays, after radiation, he would go and get 2 hours of hydration. He did have a port for his chemo, but it was not required. If he didn't have a port, he would have been stuck for an IV twice a week. He got the port before chemo started. As far as side effects from the chemo, he didn't have many. His labs were normal every week and he was able to complete the full chemo treatment. I think my husband being only 40-41 and in otherwise good health helped. He did have some minor ringing in the ears, but that has stopped. During chemo treatments, we brought my iPad and watched TV from Netflix to pass the time. Sometimes he brought his work laptop and did work for his job. He did work through his treatment, taking off work on Tuesdays and Thursdays (he used sick and personal days). But he went into the office on M, W, and F, and just left for radiation and then went back to the office. After treatment, he took a full week off work and then went back full time. The main side effects from radiation were tiredness, trouble eating (he had a PEG), mouth sores and dry mouth. But honestly, at 6 months after treatment, my husband is doing great. So there is hope. Next week just the two of us are going on vacation (no kids!) and it is hard some days to imagine that we went through all we did. But you guys will get here too. You are strong- remember that. And we are here for you any time. All my best,

    nadine

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