Next Phase

tommyodavey
tommyodavey Member Posts: 728 Member
in Head and Neck Cancer #1
Hi All,

I just wanted to give you all an update on my treatment plan. Went yesterday to do a followup with my Rad Onc. It has been one month since the end of radiation treatments. We had a really good talk about all my concerns and symptoms. He checked me out completely mostly looking for any lumps or bumps. All looked good and I told him I am eating almost normally. (still can't handle spicy stuff) I did lose 4lbs since last month but it should be reversing itself now. It does still hurt to eat but that doesn't stop me.

The good news is that he told me they'd schedule a PET scan five months from now. That would be October I guess. Doesn't that sound like a long time? And being a long time, isn't that good news? That is the way I took it.

On the 15th of this month I will see my Head and Neck surgeon who did all the work on me. My only real concern is the pain in my right arm, shoulder, and neck. It has gotten better from the exercises I'm doing so I doubt if he'll tell me anything new. And it's not bad enough to warrant any pain meds, Aleve does the trick on the days it's worse.

So the basic plan is seeing my Oncologist, Surgeon, and dentist on a regular basis. I suppose that will be for a long time. That is a question I will ask this time. How long do I do the frequent visits if no recurrence is found? You all would know better than me how to answer that one.

That's it. Five months to my next PET so I took it as good news.

Good Health to All my CSN friends,

Tommy

Comments

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #2
    No one right answer
    Of those with SCC who get recurrance, 50% do so in the first year, 75% by 24 months, and essentially all after 3 years. So at the end of my third year, the ENT said "see you later". I said, "no way, I'll see you in a year." At the end of 11 years I got my second cancer. Not that I wanted one, but I was glad I had maintained the contact.

    The unfortunate fact is that 10-20% of us will get a second malignancy. That averages about 12 years after the first. Sorry to be the bearer of bad news, but that's the facts. You just need to decide how you want to handle these numbers.


    Wishing you, and me, perpetual health.

    Pat
  • jtl
    jtl Member Posts: 456
    #3
    Tommy
    Seems like the time to the first PET is all over the map. I had mine at 3 months but thought it should have been longer. My ENT doesn't think they are needed for 6 months to a year but the rad onc thinks differently. It you think about it there isn't much they could do even if a spot did light up since you just took max rads. Sounds like you are on the road to recovery and that is good.

    Take good care of the teeth, I have found that mine appear to be demineralizing due the low pH of my saliva. I have plenty of it but maybe not the best quality. My first dental appointment post rads was good but I am not taking any chances so I am using a high fluoride toothpaste and combining that with toothpaste containing NovaMin to increase the Ca and Phosphate to remineralize. Also makes a big difference in sensitivity to hot and cold.
    John
  • osmotar
    osmotar Member Posts: 1,006
    #4
    Visits Scans
    Hi Tommy,

    My doctors, rad & onco want to see me every 3 months for the next year, since I already had my first PET in March , after my treatments ended in Dec..my onco says I will only need to have CT's done, my rad doc says he wants PET/CT, since he and the onco work for the same group I'll let them battle that out..in the end it will probably come down to what my insurance will pay for. I've already seen my ENT twice and each time he has scoped my throat, I see him every 6 weeks. I asked my rad doc last werek who should be my primary lead with check ups, as each one of these docs is in a different location, he advised that I will continue to see all 3 of them over the next year. My nexr PET or CT will be sometime late May to mid June. I know this was a long winded answer, bottom line I think each doc is different in what their protocal for follow-up is.

    Linda
  • LeoS2323
    LeoS2323 Member Posts: 160
    #5
    osmotar said:

    Visits Scans
    Hi Tommy,

    My doctors, rad & onco want to see me every 3 months for the next year, since I already had my first PET in March , after my treatments ended in Dec..my onco says I will only need to have CT's done, my rad doc says he wants PET/CT, since he and the onco work for the same group I'll let them battle that out..in the end it will probably come down to what my insurance will pay for. I've already seen my ENT twice and each time he has scoped my throat, I see him every 6 weeks. I asked my rad doc last werek who should be my primary lead with check ups, as each one of these docs is in a different location, he advised that I will continue to see all 3 of them over the next year. My nexr PET or CT will be sometime late May to mid June. I know this was a long winded answer, bottom line I think each doc is different in what their protocal for follow-up is.

    Linda

    PET
    Hi Osmotar

    My doctors seem very keen not to PET scan me too much because of the radiation exposure. I am in for 12 months of 4 monthly scans but they are using MRI and ultrasound as these carry much less risk to long term health.

    To my understanding of if doing PET every 3 months would be a little risky long term. I thought that annual is fairly safe, 6 monthly if really necessary but 3 monthly I would be surprised. If is a terrific scan but has to be used carefully.

    Perhaps they could mix them up a bit?

    All the best

    Leo
  • jtl
    jtl Member Posts: 456
    #6
    osmotar said:

    Visits Scans
    Hi Tommy,

    My doctors, rad & onco want to see me every 3 months for the next year, since I already had my first PET in March , after my treatments ended in Dec..my onco says I will only need to have CT's done, my rad doc says he wants PET/CT, since he and the onco work for the same group I'll let them battle that out..in the end it will probably come down to what my insurance will pay for. I've already seen my ENT twice and each time he has scoped my throat, I see him every 6 weeks. I asked my rad doc last werek who should be my primary lead with check ups, as each one of these docs is in a different location, he advised that I will continue to see all 3 of them over the next year. My nexr PET or CT will be sometime late May to mid June. I know this was a long winded answer, bottom line I think each doc is different in what their protocal for follow-up is.

    Linda

    You can bet on it will come
    You can bet on it will come down to what someone will pay, insurance or you. Those machines are expensive and they know how to maximize the roi.
  • LeoS2323
    LeoS2323 Member Posts: 160
    #7
    Forwards Motion
    Love the way you are thinking Tommy. You have created the hill and can see the promised land down below (full of spicy food). It's the home straight for you and some form of normality is within almost touching distance.

    I think the docs need to watch how much radiation they are giving you. Rads for the cancer, rads in your body for the PET. I'm not surprised at the 5 months - you have a slow grower and I think they probably expect to have taken care of it, so they are being careful not to increase your risk of further problems brought on by the treatment when you currently have a manageable situation.

    It's all looking good for you Tommy, soon you'll be freewheeling your way down to Calle de Jalapeño.

    Good luck seeing it it through the rest of the way my friend

    All the best

    Leo
  • tommyodavey
    tommyodavey Member Posts: 728 Member
    #8
    LeoS2323 said:

    Forwards Motion
    Love the way you are thinking Tommy. You have created the hill and can see the promised land down below (full of spicy food). It's the home straight for you and some form of normality is within almost touching distance.

    I think the docs need to watch how much radiation they are giving you. Rads for the cancer, rads in your body for the PET. I'm not surprised at the 5 months - you have a slow grower and I think they probably expect to have taken care of it, so they are being careful not to increase your risk of further problems brought on by the treatment when you currently have a manageable situation.

    It's all looking good for you Tommy, soon you'll be freewheeling your way down to Calle de Jalapeño.

    Good luck seeing it it through the rest of the way my friend

    All the best

    Leo

    Radiation
    Leo, I too am worried about getting anymore radiation from tests being run on me. From what my Dr. said and everything I've read about MEC, the main cause is radiation. Can't say I was exposed anymore than the next person but I will try to not have many x-rays, etc.

    Thanks for all the replies,

    T

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