Getting ready for IMRT/help

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Hello. I am new here and have been searching everywhere for advice.   I was diagnosed almost 2 years ago w vocal chord cancer.  Pre-cancer and T-1. Had several surgeries and lots of follow ups.  During November 18 follow up vocals looked pretty good but they found spot on supraglottis.  Had that removed and it’s also pre/T-1.  All of this is squamous cell carcinoma.  Now they are recommending radiation.  I am hesitant due to the low level and all of the side effects.  They say that since it’s all lower that my salivary glands SHOULD. Be ok??  Also I requested a scan to see if it was anywhere else in head and neck region (they said I didn’t really need one, but ok).   I am thinking that IF I’m going to do radiation, and it’s a one time deal, then I want to get every last spot.  Any insight would be appreciated.  Also 2 ENT and the oncologist agreed that radiation was the best course.

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  • Logan51
    Logan51 Member Posts: 466 Member
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    Dr.s know best

    Lily

    Over the years it was always- go with what Dr.s advised, or get a 2nd opinion from a Major C Med. Center. The Dr.s are the only ones who know all the specific details on your actual C, rather than any of us. If 2 ENT Dr.s & Oncologist agree Rads are the way to go- very likely is the way to go. A minimal amount of Rads to only a couple spots are nothing like a lot of us experience with side-effects, too. Had a co-worker who had it around the larynx. Only 3 zappings/session with no Chemo. Did come back on him within 5 years, but he had kept smoking. Iowa City did a more thorough removal by Surgery of what had come back, and is okay now.

    Have you had a Pet Scan? That is the best way to find C, and if you haven't- could strongly request one. Costly ($), though. And there is the chance of a false Positive, but that is more typical of post-tx PSs. Pet Scans are the standard in finding C, and if your Dr.s haven't had you go thru one...?

  • CivilMatt
    CivilMatt Member Posts: 4,723 Member
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    welcome

    Lily71,

    Welcome to the H&N forum, where most of us here have had rads as part of our treatment.

    You have described yourself as having fought the cancer (SCC) over the past 2 years and you have had it in your vocal cords and your supraglottis.  Also, you have had a several surgeries and follow-up treatments. Is your current “cancer status” like it was 2 years ago? Did any of what you are calling pre-cancer spots (locations) have they developed into some of the cancer they are finding. In 2 years I would expect to see all this cancer in your rearview mirror, but it is not.

    I would think that the smaller dose of rads may be possible and that the long lasting (negative) side effects may be avoided.  That is if they can focus on the limited cancer you currently are showing.  BUT, you mentioned requesting  additional scans, to determine the true extent of your cancer.  To be truthfully honest, I do not know how much radiation they may want to give you.  As of right now, we do not know for sure how much cancer you may have and where it is. I would think your doctor would know all about how much cancer and where it is located.

    It must not be too bad as someone has been looking at your cancer (oncologist) for the past 2 years and nobody sounds alarmed by it still being active.

    You will most likely be required to receive the rads and maybe some form of platinum based chemo (traditional) or alternative to chemo like Erbitux, to get rid of this once and for all. I do not know, the times they are a changing and so is cancer treatments.

    I did not come out too bad, 7 years post treatment.  I can taste most foods, it is different from before, I have a semi-dry mouth, I eat slow, but life is pretty good.

    Take care,

    Matt

  • [Deleted User]
    [Deleted User] Posts: 0 Member
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    Hello Lily71

    I had laryngeal cancer stage 1 SCC HPV+ and finished 33 radiation treatments (no chemo) the end of March 2018.  I haven’t had any scans other than when my mask was made or the initial test run treatment.  I have been scoped every six weeks to make sure there is nothing wrong, and that will scale back to quarterly after my one year checkup later this month.  Everyone is different as far as the side effects from the radiation go.  I had some dry mouth for a few months and would say that my saliva is close to if not the same as before treatment at this point.  Because of scar tissue my voice is a lot different now;)

  • johnsonbl
    johnsonbl Member Posts: 266 Member
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    If you've had multiple surgeries already...

    You may be to the point where they can't operate any more and radiation is the next logical step.  It's great that you've been able to catch these all very early.  It seems like you have a good relationship with your physicians as you've been with them for a while.  If you want a second opinion, go and get one.  It doesn't hurt a physicians feelings when you seek out another opinion...  If the other physicians concur then jump in and get after it.

    Good luck!

     

  • johnsonbl
    johnsonbl Member Posts: 266 Member
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    Logan51 said:

    Dr.s know best

    Lily

    Over the years it was always- go with what Dr.s advised, or get a 2nd opinion from a Major C Med. Center. The Dr.s are the only ones who know all the specific details on your actual C, rather than any of us. If 2 ENT Dr.s & Oncologist agree Rads are the way to go- very likely is the way to go. A minimal amount of Rads to only a couple spots are nothing like a lot of us experience with side-effects, too. Had a co-worker who had it around the larynx. Only 3 zappings/session with no Chemo. Did come back on him within 5 years, but he had kept smoking. Iowa City did a more thorough removal by Surgery of what had come back, and is okay now.

    Have you had a Pet Scan? That is the best way to find C, and if you haven't- could strongly request one. Costly ($), though. And there is the chance of a false Positive, but that is more typical of post-tx PSs. Pet Scans are the standard in finding C, and if your Dr.s haven't had you go thru one...?

    I'm in Iowa too...

    Dave, nice to see a local on here.  I actually work at UIHC and spent some time working in the cancer center.  The quality of care here is top notch.  Very lucky we have this place available to us!

     

    Brandon

  • donwaters201
    donwaters201 Member Posts: 2
    edited April 2019 #7
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    Head and Neck Treatment Guidelines

    Go to NCCN - National Comphrensive Cancer Network. This has peer reviewed guidelines for physicans that are frequently updated. All oncologists rely on this. I was recently at MN Anderson and my doc had a xerox copy of my recommended treatment in my file as he consulted with me. It can be highly technical, but the broadstokes are easilt understtod. Point being; for most (standard) cancers, once staging is done, treatment should be pretty much the same everywhere.

     

    Don

  • donwaters201
    donwaters201 Member Posts: 2
    edited April 2019 #8
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    Erbitux Infusion Reaction

    CAUTION:

    I had this today as a preloading for Head and Neck Cancer and almost died after 5 minutes. Flushed face then immediate precipitous drop in blood presure and heart rate. Choking in esophgus, vomiting. Although I had preventive IV of Benadryl, I was given several more large slugs into IV followed by steroids. A very close call - a slow response by staff and I think I would have needed resuscitation. Rash with welts over 60% of body but treated with Benadryl and soothed itching. Dissappeared after several hours. Contined home treatment with benadryl and steroid tablets.

     

    <<<< DO NOT IGNORE THE MANUFACTURER'S WARNING! MAKE SURE THAT YOUR INFUSION FACILITY HAS A PROTOCOL. YOU ONLY HAVE A VERY FEW MINUTES TO REACT!  >>>

     

     

    Don