• NeckCancer's Avatar

    NeckCancer asked a questionHead & Neck/Throat Cancer

    I have a new mass in my neck. The ENT examined and says we need a PET scan

    7 answers
    • valeriet's Avatar
      valeriet

      In the meantime, why can't your ENT do a biopsy? That's how my stage III tonsil cancer was confirmed. Good luck.

      15 days ago
    • meyati's Avatar
      meyati

      Some insurance won't allow doctors to do that. My family doctor isn't allowed to give shots, biopsies, etc. That can be done at urgent care or ER. I have an unknown problem-and my oncologist asked me if my dermatologist-who is trying to cure the problem was allowed to do a biopsy if the current treatment doesn't work.

      15 days ago
    • Kebohs' Avatar
      Kebohs

      This is unreasonable! You will have to have your ENT contest this determination. Call your insurance carrier every day and complain.

      9 days ago
  • NeckCancer's Avatar

    NeckCancer asked a questionHead & Neck/Throat Cancer

    Flouride treatments? Has your doctor suggested that you have them done?

    • GregP_WN's Avatar
      GregP_WN

      My first oncologist did suggest this some 32 years ago, but it wouldn't have helped. Once you lose your saliva glands and have zero moisture in your mouth the teeth are going to be gone. I wasted over 5K on dental work then had it all pulled out a few years later.

      9 days ago
    • shayzzwayzz's Avatar
      shayzzwayzz

      Fluoride is actually poison. In small amounts to brush your teeth is okay, but for treatments it is not safe especially when your immune system is fighting chemo drugs already

      9 days ago
    • po18guy's Avatar
      po18guy

      Dihydrogen monoxide is also dangerous in excessive amounts. Our food contains it in varying amounts from less than 1% to 99%.

      It's water.

      Post-transplant, many patients lose teeth due to deactivation of salivary glands. Thus, sodium fluoride dental gel is prescribed. Oddly, I salivate like Pavlov's dogs now and have not had a single cavity in over four years.

      9 days ago
  • NeckCancer's Avatar

    NeckCancer asked a questionHead & Neck/Throat Cancer

    I asked a question about damage to teeth that a friend of mine was concerned about, I asked my doctor to expand on it.

    8 answers
    • meyati's Avatar
      meyati

      never while we are living.

      about 1 month ago
    • Dkatsmeow's Avatar
      Dkatsmeow

      Actually my doctors did discuss alot of these things from the beginning. Scared the XXX out of me. However when it came to surgery he glossed over the possibilty that I would never swallow again. Basically told me I would have a sloped shoulder. I figured I could handle that. Guess what I cant' swallow they had to cut a nerve. My teeth are crumbling out of my mouth & I can't afford to have them tended to. Also lymphodema & a very stiff neck. Also at increased risk for stroke due to cartoid artery issues from radiation. But I am breathing so I guess that's what counts!

      about 1 month ago
    • meyati's Avatar
      meyati

      Now, stroke isn't anything I was told about

      about 1 month ago
  • NeckCancer's Avatar

    NeckCancer asked a questionHead & Neck/Throat Cancer

    A friend that has been diagnosed with lung cancer is wanting to know if her chemo and possible radiation is going to affect her teeth.

    8 answers
    • RockTom's Avatar
      RockTom

      I had radiation and ABVD for hodgkins and my teeth are going fast. Mainly from the radiation. So I can't offer anything about the chemo hurting them. I have heard of people that say they only had chemo and their teeth declined.

      about 1 month ago
    • Skyemberr's Avatar
      Skyemberr

      I had chemo and radiation for metastatic colorectal cancer.

      After that I definitely had some problems with calcium leaving my body and I just finished getting about $6000 in dental work. I can't say that I totally attribute all of the problems I had to the treatments, but the health of my teeth declined sharply after I began treatments.

      I did have a met to the apex of my right lung that was treated with radiation. Now I have also had SBRT to the brain. I am not sure how that last part will mess with my teeth at all. I am hoping it won't do as much since SBRT is very tightly focused and I now know to be taking calcium supplements!

      about 1 month ago
    • NeckCancer's Avatar
      NeckCancer

      Thanks for all of your responses! I have passed them along to her and encouraged her to join us here.

      about 1 month ago
  • NeckCancer's Avatar

    NeckCancer asked a questionHead & Neck/Throat Cancer

    Pent up anger, mad at the whole thing!

    6 answers
    • Richardc's Avatar
      Richardc

      Like many others when faced with this diagnosis I went through all of the emotions after hearing the news from my doctor. First was certainly the doctor got it wrong followed by anger, fear concern not knowing what the future held. Finally I had to make the decision that I had to face it head on. I had to decide how do we deal with this and how to get through this. Was it easy, no. But there are others who have faced more difficult diagnosis and treatments. Sometimes finding a support group or a local chapter of Gildas club can help. I wish you well going forward. Life’s too short to hold a grudge or anger.

      3 months ago
    • Lynne-I-Am's Avatar
      Lynne-I-Am

      NeckCancer, I too was very, very angry when I was first diagnosed. I has been misdiagnosed for seven months and was angry at my gp but also angry at myself for being so complacent in my medical care. For months I blindly followed his advice even though I was not getting better. A second opinion was useless since he went down the same road as my gp. When I was finally diagnosed, I was in a later stage of cancer. That anger became compartmentalized though. I reserved it for the times I was not in treatment. During treatments ,all of my focus was on beating this xxx cancer. I was too sick to be sunshiny or happy during my treatments. I was determined and scared. Surprisingly, I was able to finish those chemo treatments. The releasing of the anger at my doctor and at myself took time though. Finally I was able to let it go. I realized that my anger did not change anything and when voiced, did a disservice to all those who had supported me through my toughest time.

      3 months ago
    • Bengal's Avatar
      Bengal

      Anger is normal. The trick is learning how to deal with it and not let it become your main focus. When I first got my diagnosis I had a lot of anger. Anger is one of the stages of grief and one must work through it. I eventually sought mental health help and it has helped a lot. I still experience periods of rage. It often builds from frustration. Frustration with chemo brain, frustration with not being able to participate in physical activities which used to be a big part of my life style, frustration with side effects of medication. Enough frustration and it turns to rage. Learn to focus your thoughts on other things. Often seemingly significant little moments can bring delight. Yesterday, while mowing my lawn, I counted EIGHT Monarch butterflies fluttering above my milkweed meadow. (Usually I consider it momentous if I see just one.) It made me happy.

      3 months ago
  • NeckCancer's Avatar

    NeckCancer asked a questionHead & Neck/Throat Cancer

    I am going to have to have my teeth removed and they want me to have HBO treatments

    4 answers
    • GregP_WN's Avatar
      GregP_WN

      I have had to have all of my teeth out also, they wanted me to have the HBO treatments too, but my insurance wasn't going to cover it and the total cost I was quoted was 47K. So my teeth were taken out without the HBO. Luckily, I have not had any problems.

      3 months ago
    • cllinda's Avatar
      cllinda

      Thanks for the link. I had no idea what was involved.

      3 months ago
    • NeckCancer's Avatar
      NeckCancer

      Thanks for the information!

      3 months ago
  • NeckCancer's Avatar

    NeckCancer asked a questionHead & Neck/Throat Cancer

    Do you have a Tumor Board, or MDT team, or a group of doctors that make up all the specialties that will treat you?

    9 answers
    • lh25's Avatar
      lh25

      Yep, my case was presented to the tumor board at the hospital where I was treated. It was reassuring to know other doctors had reviewed and agreed with our plan of care.

      4 months ago
    • Dkatsmeow's Avatar
      Dkatsmeow

      Yes I have a ENT oncologist, a hematologist & a radiologist. They meet with other oncologists as a team to discuss & review treatment. I was seeing them every 3 months (1 a month). I am now at 6 month appts.

      4 months ago
    • Kp2018's Avatar
      Kp2018

      Karmanos Cancer Institute has Multidisciplinary Teams and Tumor Boards. My next door neighbor, who has been receiving treatment for a cancer of unknown primary origin for 5 years recently has his case reviewed by a Karmanos Tumor Board. When he and his wife were invited to an appointment at Karmanos' main location in Detroit to learn the results, they thought they were at the end of the treatment road and that participation in a clinical trial would be recommended. To their delight, they learned that the Tumor Board was concurring with his local Karmanos oncologist in recommending a new chemotherapy regimen. That was an incredible uplift for them. After 5 years of whack a mole treatments, my neighbor is still going strong and enjoying a great quality of life.

      4 months ago
  • NeckCancer's Avatar

    NeckCancer asked a questionHead & Neck/Throat Cancer

    I have drainage and buildup in my throat, I think mostly from allergies.

    • GregP_WN's Avatar
      GregP_WN

      I have taken allergy medicine for years. My current oncologist suggested I use Nasacort spray. But, I wasn't on chemo. I would run it by your onco.

      4 months ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      I have been able to take benadryl and claritin. But, like Greg suggested, i would run it by your own doctor. You should be able to just send a message or call the nurse to verfiy.

      Good luck!

      4 months ago
    • meyati's Avatar
      meyati

      Hi, with chemo check with your doctor now.. Call and leave a message. Some sinus meds cause other problems like create high blood pressure or cause hormone problems.

      I just called my doctor-one of them- a few minutes ago, seriously. I needed to make sure that I had an appointment for my state required thyroid lab work and the required appointment for the results-- also have it a day or 2 a year after last year to make sure there isn't any insurance Medicare problems, and I don't run out of hormone supplement.

      Also, Neilmed helps my sinus -nasal-throat problems. Some people use a Neti pot-the saline solution helps keep infections from setting in. It takes a bit before you see the results because the saline breaks everything-old mucus-loose and flushes it out. Then it's like a miracle.

      Good luck and let us know how it goes.

      4 months ago
  • NeckCancer's Avatar

    NeckCancer asked a questionHead & Neck/Throat Cancer

    I have been told that I will have to have a feeding tube, who has experience with one?

    5 answers
    • NeckCancer's Avatar
      NeckCancer

      thanks for the feedback, I still don't want one, but we'll see, I'd love to hear from someone that has had one and had it taken out, with no problems using it or installing or taking it out. Thanks

      4 months ago
    • Dkatsmeow's Avatar
      Dkatsmeow

      It is no problem taking it out. the Docs will just pull it out and just let the hole close on its own. It's not a pleasant sensation, but it does not hurt pulling it out. I now have 3 "belly buttons". My ownb bellybutton , 1 scar from a previous feeding tube and the place where the actual feeding tube is now. I tell everyone I am a Venusian!! HAHA! Other than that you may want to put a bandage around it. they tend to leak a bit.

      4 months ago
    • lisamilwel's Avatar
      lisamilwel

      If your Dr wants you to have one, it’s for a reason. Please don’t think you can just ‘muscle through’. Aspiration pneumonia is a very real problem..,as in, deathly problem. I know from experience. I had a tube 31 yrs ago while going through radiation, and six yrs ago I had one put in permanently. I would suggest a PEG tube, one that goes through the skin into the stomach, not one that goes down through your nose. As far as removing, I had a 25 yr gap between tubes, so that isn't a concern. It’s an adjustment, but nothing you can’t tackle! Remember, you’re a SURVIVOR!!!

      4 months ago
  • NeckCancer's Avatar

    NeckCancer asked a questionHead & Neck/Throat Cancer

    I have a burning sensation when drinking or eating certain things

    • GregP_WN's Avatar
      GregP_WN

      I have a similar thing going on, as a matter of fact, you describe it perfectly. I have had my throat stretched twice and have asked them to look at it while scoping it to be sure there isn't anything going on down there that we don't want. Please let us know if your doctor tells you of a remedy or procedure that will ease that burning.

      5 months ago
    • MarciaMusial's Avatar
      MarciaMusial

      Do you take a GERD Rx? If not, perhaps you need to take one. I'm assuming you get regular office visits scopes from you're ENT?

      5 months ago
    • valeriet's Avatar
      valeriet

      Unfortunately, this is a normal occurrence from the treatments. Radiation burns the tissues.
      I am 20yrs out, and altho it does get somewhat better, certain foods and drinks still burn.

      5 months ago