Oral Cancer

Wade1
Wade1 Member Posts: 30 Member
edited February 5 in Head and Neck Cancer #1

Hello everyone. I first would like to wish all of you good luck with your treatments and such.

August 31st I found out I had a tumor between my lower jaw and inner cheek. After the dentist, the oral surgeon and all my scans I found out I had stage 3 because it spread to the lymph node right under the jaw and the tumor is above it. My ENT did not want to do surgery at first he said it would be pretty intense. He wanted me to start radiation treatment after may CT and PET scan.

My second visit to him he said he would operate then he wanted radiation like around 8 weeks after surgery to make sure he got it all. But he told me he couldn't get me into surgery soon as he's backed up.

So I said what about my radiation oncologist you wanted me to see. He wants to do radiation and chemo at the same time.

My ENT told my wife and I to go home and discuss the options.

We decided on the 2 oncologists because they could get me in sooner. I see my chemo Oncologist/Hematologist for consultation on ThursdAy. I'm already set with my radiation oncologist.

Oh and I still havent heard from my radiation oncologist about wether or not I need any teeth fixed. He was calling the dentist and oral surgeon. I'm like, are you kidding? I might now have to have teeth work done before treatment? If I would've known sooner I would've had my dentist make sure that he checked my teeth back in the first week of September. Plus I seen my oral surgeon twice. He probably would've checked for me.

I'm sure to have lots of questions. I just wanted to let whoever reads this know my story.

First question, during my radiation and chemo treatment that I'll be receiving together, do I have to quarantine myself? Someone just told me that last night. It took me by surprise so I wanted to ask if it's true.

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  • wbcgaruss
    wbcgaruss Member Posts: 2,484 Member

    Wade, welcome to the CSN H&N discussion group.

    It seems your surgeon for some reason changed his mind and decided to operate. Sometimes doctors feel an operation can be too disfiguring or for other reasons and opt for radiation and chemo combination instead. In your case, he must feel he can get nearly all of the cancer and possibly have clear margins. Then radiation post-surgery at 8 weeks sounds fairly normal, they want you to be healed from the surgery before starting radiation and chemo.

    So if I am reading this correctly you have opted for radiation and chemo rather than surgery and radiation as a follow-up. I just want to explain that if surgery gets most of the cancer you will possibly will have a lighter treatment of radiation whereby giving you some leeway in the future for more radiation if needed. You see they will only radiate an area so much and I believe the body overall so much in a lifetime. Hopefully, you never get cancer again, obviously, none of us want that but some of us on here have had cancer more than once so we are mindful of our options. An example would be let's say someone gets just surgery for their cancer with absolutely clear margins and no follow-up rads or chemo, they still have those in the toolbox if needed. And surgery can be used again also. Just to make you aware radiation and chemo are used following surgery to mop up any cancer cells that may be left over and at a microscopic level they can't be seen but can be eradicated with radiation and chemo.

    So you have chosen radiation and chemo, this is all well and good whatever route you use as long as your care team feels really confident that the path chosen will eliminate the cancer. This is important. This is generally considered a one-shot deal. You don't want to leave any cancer cells there and revisit this 10 months down the road with a recurrence.

    One other thing you may want to consider is a second opinion on your case, this is another option to be sure and help clarify why your surgeon changed his plan idea. Especially if there is a major hospital, teaching hospital, or major cancer center close enough to go to.

    With all that said, now to your teeth. This is very important, especially down the road years out it can cause issues Have you been seeing your dentist regularly, say every 6 months for a checkup and cleaning and getting any necessary repairs? If so good. If not you need a checkup. But I see you were there in the first week of September so you may want to give them a call and let them know your situation and see if there is anything questionable with your teeth. Such as questionable or loose fillings or anything that is not 100%. You possibly should have teeth x-rays unless you have had them recently so they know there are no underlying issues only seen with x-rays such as infection, etc. To make a long story short you want your teeth to be in the best possible shape before starting this treatment and post-radiation you will have to be meticulous about oral care because of the effects of radiation affecting things such as loss of some saliva flow.

    And the question on quarantine. Actually yes you should quarantine at least to some extent. Especially during chemotherapy, it can affect your blood cell counts and leave you with a weakened immune system, especially with radiation thrown on top of it. I had chemotherapy and it is common practice to have your blood tested and if your blood counts have not come back up sufficiently they will not give you another chemo treatment till they do. After chemo when your system is compromised till your counts come up you do not want to get something like the flu on an already weakened system from cancer treatment. So go out minimally, and avoid large crowds or stores where people are close to avoid picking up colds or flu. I will put some links below on Blood counts during treatment and best ideas on how and when to quarantine....

    Blood counts...

    https://www.mayoclinic.org/diseases-conditions/cancer/in-depth/cancer-treatment/art-20046192

    Quarantining during treatment...

    https://www.crmchealth.org/how-and-when-cancer-patients-should-quarantine-during-covid-19/

    And...


    Please check out the "Superthread" at the top of the page of the H&N section, it is a read-and-link posting with tons of info and links

    Also, I am going to post a long paper I typed up and read it at your leisure.

    More questions, feel free to ask.

    Our motto here is NEGU (Never Ever Give Up)

    Wishing You The Best

    Take Care, God Bless

    Russ

    So You Think you Have Cancer?


    So You Think you Have Cancer or Have Something Suspect Going On in the Head and Neck Area.


    Important:

    • Many have feared that the soreness or unusual feeling in their Head & neck Area is cancer and assumed they are going to die. Even if the unusual feeling area is cancer, with modern cancer treatment this is very unlikely and successful treatment is getting better every year.
    • The best way to approach this is with an open mind and calmness and seek the help of a medical professional like an ENT for instance.
    • Many people have worried themselves sick only to find they have no cancer, their problem was caused by something else
    • It’s not cancer till they say it’s cancer verified with scans and a biopsy.
    • This is a step by step process to check, identify, and treat cancer.
    • Whatever your problem is your medical team will get you through this.
    • Many people are upset, worried, and fearful but the best examples of the way to handle this has shown to be stay calm and contact a medical professional such as you family doctor or an ENT and get in and get evaluated as soon as possible.
    • Cancer is no longer the death sentence it once was but this idea persists.
    • Also please remember if you have to enter into a cancer treatment regimen it is not a quick process and in fact usually spans over a number of weeks. But be patient and do your treatments because your medical team has put together a treatment regimen tailored to your cancer and type and location. With advanced treatments we have today the possibility of success of the eradication of a persons cancer has a very good success rate.


    So Next Step Is To:


    • See your family doctor, he may try a round or two of antibiotics or send you to an ENT. (Ear, Nose, and Throat Doctor)
    • Go directly to an ENT is also and option. ENT’s are all things Head and Neck.
    • This is very important! Anytime you go to any meetings during this situation of a possible problem and possible cancer with your Doctor, ENT, Radiation Doctor, Chemo Doctor, Etc. always take a notebook or note pad and if possible absolutely take along another person. Two sets of ears are better than one and you may be given a lot of information. A lot can be thrown at you, new terms you never heard before and just too much info to process in your meeting so have a friend along. Also ask if you can audio or video record your meeting with any doctor you see so you can play it back for anything you missed.
    • If the ENT doctor sees or feels something suspicious or unusual.
    • They may take a biopsy if something is suspicious, visible, on or near the surface.
    • They will send you for a CT Scan with Contrast.
    • If cancer or suspected cancer is seen on the CT scan a biopsy will be ordered.
    • If the biopsy confirms cancer your ENT will order a PET scan. Basically a whole body scan with a small amount of radioactive dye to see if cancer is anywhere else in the body.
    • Cancer must be verified and identified with a biopsy so they know for sure it is cancer and the type of cancer so they know how to treat it.
    • If cancer is not seen anywhere else except where first suspected that is the best news.
    • It means they are treating cancer in only one area.


    Your ENT or Cancer Team Guides the Process of your Treatment


    If you are going through an ENT they may guide the process of your treatment. When I had treatment done my ENT initially found my cancer. He is the one who later took the biopsy. And it was through his office that appointments were made for CT and PET scans. Through his office I was set up with appointments to meet with chemotherapy and radiation doctors. In my case my ENT was my front line guy and through his office everything was coordinated and looked after. And when my treatments were all done I continued to see him for follow up appointments to keep watch for problems or recurrences. I was taken excellent care of the whole time. I had a cancer team coordinated by my ENT.





    You May Have Hospital or Cancer Center A Cancer Team


    Instead of an ENT you may have been referred to a hospital or cancer center to handle your case. So in this case everything may be at this one facility to handle all your needs during your treatment. This would include the same thing, Radiation and Chemotherapy doctors, PET & CT Scans, an ENT to check you and do scopes to watch over you and anything else your case requires including a Tumor Board to review your case for treatment.


    No matter how your case is dealt with there should be someone coordinating all the various doctors, scans, tests, and treatments and follow-ups.


    INTEGRATED APPROACH TO MANAGEMENT

    A multidisciplinary approach is required for optimal decision making, treatment planning, and post-treatment response assessment. This should include surgeons, medical oncologists, and radiation oncologists, chemotherapy oncologists as well as dentists, speech/swallowing pathologists, dietitians, psycho social oncology, prosthodontist , and rehabilitation therapists. Specifically, a multidisciplinary tumor board affects diagnostic and treatment decisions in a significant number of patients with newly diagnosed head and neck tumors for the best outcome.


    What’s Next?


    The next phase now is for your cancer team to look at your scans, biopsy, physical condition, blood tests possibly and work up a treatment plan for you using all the information on you they have.

    Your case may be brought before a tumor board of doctors to discuss your case and share opinions so you get the best possible treatment and the least side effects.

    Your treatment could include surgery, chemotherapy, radiation of some variety or all the above is possible in some cases.



    Dental Care


    Get a full dental exam and any teeth that need repaired should be and any that need extracted should be. You want to go into H&N cancer treatment with your dental condition in perfect condition.


    Gain Weight


    Gain weight unless you already carry extra weight. Eat everything you like and lots of it.

    This is one time you can let go and not worry about calories-enjoy.

    Consult with your doctor about your weight.






    Feeding Tube?--Port?


    Depending on your cancer situation and the treatment plan that is worked up for you your doctors may want you to--

    • Get a feeding tube put in. (Gives your nourishment when you can’t eat-they are a lifesaver)
    • Get a Port put in. (Ports are true vein savers)

    I highly recommend if your doctors tell you to get either of these or both of them before you start treatment don’t hesitate to get them you will be glad later you did. The doctors have experience with past cases and the treatments you are going to get and they know how it affects the human body-trust them.



    Mask?


    If radiation is going to be part of your treatment you will be getting a mask made that is custom made to your head and face.


    What is a radiation mask for?




    The purpose of the mask is to hold your head and neck still and in exactly the right position during treatment,” To make sure treatments are delivered exactly in the proper area every single time.


    Nothing to fear here, they take a nylon mesh from warm water and stretch it over your head and it conforms to the shape of your head and face. This mask fastens to the table as it will during all your radiation treatments so your head is held still and in one place and insures your head is in exactly the same place every time providing extreme accuracy in the delivery of radiation every treatment. After about 20 minutes they will unfasten your mask and when it dries and sets up will retain the form of your head and securely and gently hold your head in place for treatment each time. This ensures treatment is delivered exactly every single time to the cancer area.



    Treatment for Head and Neck Cancer


    Cancer of the head and neck is an umbrella term used to describe a variety of malignant tumors that occur in the mouth, lips, throat, nose, sinuses, larynx, and salivary glands. Together, head and neck cancers account for about 4% of all cancers in the United States.

    A diagnosis of head and neck cancer can be overwhelming. Fortunately, effective treatments are available, including surgery, radiation therapy, chemotherapy, targeted drugs, and immunotherapy.


    How is head and neck cancer treated?


    From my experience and observations these days many doctors, hospitals, or cancer centers try to treat Head and Neck cancer with Chemotherapy and Radiation if possible. The reason for this is it is less debilitating and disfiguring and is usually very effective. I have had this type of treatment for throat cancer. It seems the general rule of thumb as per this treatment regimen is 35 radiation treatments with chemotherapy in the beginning, middle, and at the end of the radiation treatments. Also at times depending on the patients particular situation such as tumor size or location they may receive chemotherapy before this general treatment starts such as extra chemotherapy or possibly in hospital chemo for 5 days at a time.


    Each persons case is different and your doctor will consider all 3 options or more and most likely your case will go before a tumor board of doctors for discussion and conclusion coming up with the best treatment plan for you.


    Several types of treatment are available for head and neck cancers. The choice of treatment varies based on the location of the cancer, whether it is localized or has spread to other parts of the body, and other factors.

    Surgery. Surgical removal of the tumor is often used to treat head and neck cancers. It may be used alone or in combination with radiation therapy and chemotherapy. In some cases, nearby lymph nodes are removed as part of treatment.

    Radiation therapy. This therapy, commonly used to treat head and neck cancers, kills cancer cells by exposing them to radiation. It may be used alone or in combination with surgery. It may also be used before or after surgery to shrink the tumor or destroy any remaining cancer cells, respectively. For advanced-stage cancer, radiation therapy is frequently used in combination with surgery and/or chemotherapy.

    Chemotherapy. Chemotherapy uses drugs to destroy or damage cancer cells. For head and neck cancers, it is usually used in combination with surgery, radiation therapy, or both. It may be given before or after surgery. For advanced-stage cancer, it may be used in combination radiation therapy (known as chemoradiation).

    Targeted therapy. Drugs designed to target epidermal growth factor receptor (EGFR), a protein found on the surface of cells that helps them grow, may be used to treat some head and neck cancers.   

    Immunotherapy. These drugs stimulate the patient’s immune system to help it better fight cancer.

    Reconstructive surgery to restore function of structures damaged by disease or treatment may be necessary. In some cases, patients will need to undergo rehabilitation therapy for speech and swallowing.



    Surgery

    Surgery itself for cancer treatment of the Head and Neck area is pretty self explanatory. It is basically one of the choices of treatment and can be used when it is the best treatment for the cancer you have and the area you have it in. Many times a tumor or cancer area can be removed without affecting function and surrounding areas such as removing a small spot on the tongue for example or a cancer growth somewhere else in the H&N area. Sometimes it is a more involved surgery such as a tumor in the throat area, removal of the thyroid gland, or a radical neck dissection to remove cancerous and suspect lymph nodes. Each individual case is different and the doctors may have a tumor board of doctors to present your case to to come up with the best treatment options and decide the best approach which may be surgery. Your side effects and long term effects from surgery will depend on your specific case. Below is a link to a web site “Perlmutter Cancer Center” offering examples of the types of surgery that may be performed.

    https://nyulangone.org/conditions/head-neck-cancer/treatments/surgery-for-head-neck-cancer



    Side Effects During Treatment With Radiation


    What are the side effects of radiation therapy?

    Radiation therapy can damage normal, healthy cells near and around your cancer. The damage may cause side effects. These side effects can be very different for different people. Your side effects may depend on:

    • The dose and type of radiation used
    • The site of your head and neck cancer
    • The stage of your head and neck cancer
    • Your age

    Types of side effects

    Side effects can appear around 2 weeks after the first radiation treatment or much later and can include:

    • Mouth sores (ulcers in your mouth)
    • Dry mouth
    • Pain or difficulty swallowing
    • Changes in taste or smell
    • Changes in the sound of your voice
    • Jaw stiffness and other problems with your jaw bone
    • Changes in your skin
    • Feeling tired



    Side Effects During Treatment With Chemotherapy


    Side effects of chemotherapy

    Chemotherapy can affect the healthy cells in the body and cause side effects. Everyone reacts differently to chemotherapy, and effects will vary according to the drugs you are given. Some people may have few side effects, while others have many.

    Your medical oncologist or nurse will discuss the likely side effects with you, including how these can be prevented or controlled with medicine.

    Common side effects include:

    • tiredness and fatigue
    • nausea and/or vomiting
    • tingling or numbness in fingers and/or toes (peripheral neuropathy)
    • changes in appetite and loss of taste
    • diarrhea or constipation
    • hair loss
    • low red blood cell count (anemia)
    • hearing loss
    • ringing in the ears (tinnitus)
    • lower levels of white blood cells, which may increase the risk of infection
    • mouth sores.

    Keep a record of the names and doses of your chemotherapy drugs handy. This will save time if you become ill and need to go to the hospital emergency department.


    Targeted therapy

    Targeted therapy targets specific features of cancer cells to stop the cancer growing and spreading. Each targeted therapy drug works on a particular feature, and the drug will only be given if the cancer cells have that feature. For some head and neck cancers, a targeted therapy drug called cetuximab is occasionally used when people cannot take the standard chemotherapy drug or the cancer is advanced.


    What are the possible side effects of targeted therapy?

    Targeted therapy drugs have different side effects than standard or traditional chemotherapy.

    ...

    Other side effects

    • Nausea and vomiting.
    • Diarrhea or constipation.
    • Mouth sores.
    • Shortness of breath or trouble breathing.
    • Cough.
    • Feeling tired all the time (fatigue)
    • Headache.
    • Hair loss.


    Immunotherapy

    Immunotherapy uses the body’s own immune system to fight cancer. The main type of immunotherapy in Australia uses drugs known as checkpoint inhibitors, which help the immune system to recognize and attack cancer cells. Nivolumab is a checkpoint inhibitor used to treat some types of advanced head and neck cancer.

    Side Effects of Immunotherapy Head and Neck Cancer

    These side effects are common but may not occur in all people or with all types of immunotherapies.

    • Feeling tired (fatigue)
    • Diarrhea.
    • Fever.
    • Shortness of breath.
    • Rash and/or blisters, covering less than 10% of the body.
    • Nausea.
    • Vomiting.
    • Itching.






    Below is one persons story of typical Head and Neck Cancer Treatment involving radiation and chemotherapy.

    It gives you an idea of what people face that go through this.

    What you or a loved one may encounter.

    Your results may vary, for example some people get diarrhea and or constipation and some don’t.

    Some get sores inside their mouth from the chemotherapy called mucositis other not so much.

    Consult your care team to deal with any side effects you encounter




    One Persons Story of Head & Neck Cancer Treatment



    Hello Again


    I had 7 weeks of radiation, and three infusions of high-dose cisplatin. (The chemo requires an overnight hospital stay - except for the last dose, which they fractionated because they were worried about permanent hearing damage).


    On that, yes, I'm still getting tinnitus. It's intermittent and was much worse directly after the chemo - but it's still there. I don't know if it will go away fully or not, but I hope so. (If not, a small price to pay to fight the cancer).


    I never lost my voice, but when the mucositis was at its worst, talking was sometimes difficult - just because of the thick mucous accumulating in my mouth and the need to spit .. so I would sometimes sound like a cartoon supervillain or someone with some kind of speech impediment as I talk/gargled through a thick layer of yuck.


    (And yeah, I used flat mineral water and every other thing the internet suggests, including a concoction of magic mouthwash - which has viscous lidocaine (for numbing), sucralfate (for a barrier), antihistamine (to reduce phlegm), and other bits and bobs all mixed up by a compound chemist. You could google it for a try, as it was OK ... from my research the best mucositis treatments are new patent medicines available in the USA, and I think maybe just now starting to distribute into Australia .. google medicines like "Gelclair", which advertise symptomatic (and prophylactic) relief of mucositis. I couldn't get my hands on any in time to help me.


    I stopped eating around weeks 4-5 of treatment, mostly because of the rancid taste dysgeusia. Everything in my mouth tasted contaminated. (A side effect of the chemo).


    It's gone now, and I am able to take everything I need by mouth - but no solids .. just hydration and the formula that I'd otherwise put into the PEG I can drink by mouth now (so I'll look at getting the PEG removed in the next couple of weeks).


    Yes, I still have a sometimes sore throat. Basically, the radiation damage you suffer over the course of treatment is .. well it's just a horrible insult to your body. It's worse than a normal wound or injury because the treatment actively attacks the stem cells (which normally help you heal), so the wounds can be severe and slow to heal. But my pain is very manageable now .. just 2 panadol today. It was at its worst the first 2 weeks after treatment.


    When you finish the course of radiation - yes, the interior and external radiation damage can be a problem (who knows, you might get lucky, don't expect the worst). It's great to no longer have to go to the hospital every day - just be ready for the possibility that you might be debilitated at that point, and be prepared that you might need 2 solid weeks of pretty much bed rest and just ticking away time before you start to heal and feel better.


    For me, it went something like this, over the span of treatment:


    Week 1: First round chemo & 5 rads (felt fine, some nausea from chemo)

    Week 2: (5 rads) minor tinnitus onset from chemo, some vomiting, radiation fine

    Week 3: (5 rads) tinnitus fading, feeling quite good, no issue with rads some reduction in taste

    Week 4: (5 rads, chemo) start to notice mucous problems, no burns yet, more serious nausea and vomiting from chemo

    Week 5: 5 rads) noticeable exterior burns and sore, stretched skin, mucositis more severe, notice rancid taste to everything in mouth - can no longer eat or drink, become PEG reliant

    Week 6: (5 rads) mucositis worsening, always have to carry spit bag, burns need intrasite gel and daily dressing, relying on panadol / neurofin but pain increasing

    Week 7: (5 rads + chemo) mucositis debilitating, need to gag up mucous constantly, accidentally swallowing any precipitates a need to vomit, exterior neck burns are moderate and need dressings and intrasite gel, doctor escalates pain management to endone / morphine

    Week 8: (first-week post-treatment) awful awful suffering, vomiting, spitting up blood, constipation, bloating, night cramps in legs, mucositis severe, pain moderate to severe, wounds still require intrasite and dressing for a few days

    Week 9: (second-week post-treatment): exterior burns healing nicely, no longer require dressings, just moo goo (healing moisturizing cream). Pain lessening, but mucositis still awful, night cramps in legs

    Week 10: (third-week post): exterior burns gone, pain better, mucositis still bad, but feels a little bit better, able to sleep for more than an hour or two at a time thanks to improving mucous, night cramps gone after taking daily vitamin & zinc

    Week 11: (fourth-week post): turned a corner with mucositis, now still have to spit during day and night, but it's a fraction of what it was. Experimenting with foods but can't viably swallow them due to gross mucous - but start tentatively to sip drinks .. still mostly PEG reliant

    Week 12: (fifth post): mucositis backing off more, can now take most nutrition and hydration via the mouth and thinking of getting rid of PEG. Pain is manageable, don't require anything more than panadol. Can't yet eat solid foods, although taste appears to have returned to at least 50% of pre-cancer levels


    So ... that should give a pretty fair idea of how things have been for me .. you might get better (or worse) luck with side effects, but hopefully, it gives a little perspective. Knowing what to expect has been really tough, and it's easy to get into this habit of scouring Doctor Google almost daily. I think in the post-treatment phase the most important thing is to take it easy and not expect too much from yourself. Your body has been subjected to a major attack, give yourself time to rest and heal, and if you need help make sure you ask for it.


    Oh yeah .. and on kids .. no, they have no idea, just "dad's been a little sick"


    Link below to this online forum posting of people discussing treatment side effects.



    https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Your-experience-with-side-effects-from-head-amp-neck-cancer/td-p/25626/page/2

  • Wade1
    Wade1 Member Posts: 30 Member

    Thank you for all the information and the welcome wbcgaruss.

    I'm not sure if your asking me but yes I've had the biopsy then the CT and PET scans. I have stage 3 squamous cell carcinoma. My ENT is still my lead doctor. I made that decision. Not him or anyone else. As he's the one that ordered everything after the biopsy pathology report came back. He'll step in If I need surgery for "salvage". My decision is based on my ENTs honesty about having to hold off on surgery for a while because he's backed up. I already have a follow up scheduled with him.

    It's been a bit of a rough road just trying to get through my consultations. My state has two Major healthcare groups. Sometimes, depending on the doctor they want you to see different doctors in their group. For example, my radiation oncologist wanted me to go to his (in group) ENT. I said No. I told him I drove two hours to see a ENT that has been doing cancer surgery since the 90's. Plus I met him and I like him. The oncologist wasn't that happy with me but the two of us got past that.

    I do know about immune system possibly being compromised . I have a family member who has lupus and I've taken them to a few times to their oncologist/Hematologist appointments and seen cancer patients wearing surgical masks there.

    I also helped one of my best friends during the last two years of his life. Sadly the brain cancer became too much.

    I wasn't around during his radiation but I was during a lot of chemo like IV bags, pills and wafers.

    Someone was telling me last night that a person who had thyroid radiation had to quarantine themselves so they didn't spread the radiation to other people somehow. Not because of their immune system. I was wondering if this was true so I asked in here.

    I already was told as the last second after my PET med was put in that I had to urinate in a non public toilet. I was getting up out of the transport chair the Nurse was pushing use the men's toilet and the Nurse said no.i asked why and she said it was because my urine was radioactive. She took me to one that needed a key. I had no clue.

    So, since I seem to be very ignorant on radiation anything in reason might be true.

    Maybe I would know more about radiation therapy if my oncologist wouldve spent more time informing me on what to expect rather than taking up the whole visit yringy to get me into his healthcare group ENT. But sadly it didn't go that way.

    I'm wasn't about to hold a grudge though so I talked to him on the phone and he was very different and offered up his plan on how to treat it.

    I only know what to expect during radiation because of Google. But even that is skewed because everything depends on the place on the body and the strength the radiation. I didn't even know I needed a mask made until I read it on Google.

    I know I need 6-8 weeks 5 days a week of radiation and 6 weeks of chemo one time a week with radiation.

    I'll probably need a port put in. I take needles and things like that pretty well so I'm just going to ask for the local numbing and ask not to be made a little sleepy. I want to drive home after the ports in. I've had some pretty large wounds sewn up while awake.

    I'll see that doctor for a consultation on this Thursday.

  • wbcgaruss
    wbcgaruss Member Posts: 2,484 Member

    Very well then, your ENT is your lead doctor. That is the way it works with head and neck cancer mostly your lead doc and go-to guy is your ENT. It sounds like you are very satisfied with him so stay with him. So I understand it is on his advice to go the chemo and rads route and you trust him and his honesty so you are good there?

    As far as your immune system being compromised I was referring to getting chemo and it lowers your blood counts, thats when your immune system is compromised, you need to be very careful and not get colds, flu, etc.

    Check out the links I posted and the long-winded write-up I posted at the end of my answer, especially at the end. It is a fellow describing how he feels and what he encountered during 7 weeks of treatment and beyond.

    I see you checked google for radiation effects info but you are on an H&N forum all effects described on here are for the H&N area.

    Please check out the "SUPERTHREAD" for more info there is lots of info on there about radiation and chemo.

    Your doctors may want you to get a feeding tube if they do I recommend you accept it.

    Your next step is probably to get a radiation mask made to keep you still.

    And here is the example I mentioned at the end of my posting it describes a fellows course of radfiation as described by him...

    Week 1: First round chemo & 5 rads (felt fine, some nausea from chemo)

    Week 2: (5 rads) minor tinnitus onset from chemo, some vomiting, radiation fine

    Week 3: (5 rads) tinnitus fading, feeling quite good, no issue with rads some reduction in taste

    Week 4: (5 rads, chemo) start to notice mucous problems, no burns yet, more serious nausea and vomiting from chemo

    Week 5: 5 rads) noticeable exterior burns and sore, stretched skin, mucositis more severe, notice rancid taste to everything in mouth - can no longer eat or drink, become PEG reliant

    Week 6: (5 rads) mucositis worsening, always have to carry spit bag, burns need intrasite gel and daily dressing, relying on panadol / neurofin but pain increasing

    Week 7: (5 rads + chemo) mucositis debilitating, need to gag up mucous constantly, accidentally swallowing any precipitates a need to vomit, exterior neck burns are moderate and need dressings and intrasite gel, doctor escalates pain management to endone / morphine

    Week 8: (first-week post-treatment) awful awful suffering, vomiting, spitting up blood, constipation, bloating, night cramps in legs, mucositis severe, pain moderate to severe, wounds still require intrasite and dressing for a few days

    Week 9: (second-week post-treatment): exterior burns healing nicely, no longer require dressings, just moo goo (healing moisturizing cream). Pain lessening, but mucositis still awful, night cramps in legs

    Week 10: (third-week post): exterior burns gone, pain better, mucositis still bad, but feels a little bit better, able to sleep for more than an hour or two at a time thanks to improving mucous, night cramps gone after taking daily vitamin & zinc

    Week 11: (fourth-week post): turned a corner with mucositis, now still have to spit during day and night, but it's a fraction of what it was. Experimenting with foods but can't viably swallow them due to gross mucous - but start tentatively to sip drinks .. still mostly PEG reliant

    Week 12: (fifth post): mucositis backing off more, can now take most nutrition and hydration via the mouth and thinking of getting rid of PEG. Pain is manageable, don't require anything more than panadol. Can't yet eat solid foods, although taste appears to have returned to at least 50% of pre-cancer levels



    So ... that should give a pretty fair idea of how things have been for me .. you might get better (or worse) luck with side effects, but hopefully, it gives a little perspective. Knowing what to expect has been really tough, and it's easy to get into this habit of scouring Doctor Google almost daily. I think in the post-treatment phase the most important thing is to take it easy and not expect too much from yourself. Your body has been subjected to a major attack, give yourself time to rest and heal, and if you need help make sure you ask for it.


    Take Care, God Bless \

    Russ

  • Swoosh13
    Swoosh13 Member Posts: 84 Member

    Welcome Wade1,

    My husband just successfully finished 7 weeks of Rads (total of 33) and 7 weekly Cisplatin chemo. He finished rad on 10/23 and last chemo 10/24. He did not have surgery. Discovered swollen lymph node in left side of neck and primary tumor was left base of tongue. Stage 1. A couple questions you brought up above may seem “silly” going into all of this, but nothing is, so if no one answered this yet, you will not be radioactive from IMRT (or VMAT or Proton therapy). You can sleep in the same bed as your spouse or partner. What you were stating about the PET scan is true though. For chemo treatment we were told either he should use a separate bathroom for the first 48 hours after each chemo OR if you only have one BR in your house, you can share but you should flush with lid down 3 times after each use. These were things I picked up from a friend whose husband went through this before this and the nurses are also quite helpful. I plan to document my husband’s treatment journey soon. It was SO helpful to be on this Board prior to his treatment. I learned so much. Also just because you read about the side effects of the treatments, doesn’t mean you will get them. He seemed to breeze through the chemo as they successfully controlled nausea. There literally was none. He did lose his taste in about weeks 3-4, but not everything. Oddly the first thing to go was bacon and for the past 2 weeks bacon is back and enjoyable. Do stay super hydrated. He never really lost his saliva throughout. Nor did he get the heavy mucous many on here mention. He lost 25-30 lbs total but gained back 8 just last week by us enjoying some healthy meals together (mostly breakfast). We saw his Radiologist for a F/U appt today and he said my husband had one of the quickest and easiest recoveries he has seen. PET/CT scans will be done in Jan or February as they don’t want to do them too soon and get a false positive. We are so hopeful and blessed. You WILL make it through this. Stay positive. Feel free to write with any questions. Prayers being sent your way. And trust that Russ helps everyone here and we appreciate it!

  • Wade1
    Wade1 Member Posts: 30 Member

    "So I understand it is on his advice to go the chemo and rads route and you trust him and his honesty so you are good there? "Russ""

    He wanted us to go home and think about surgery and radiation or radiation and chemo. Since he was honest about his surgery schedule. My wife and I thought it would be best to start treatments as soon as possible since it's already in one lymph node. So we chose Radiation and Chemo.

    To be honest I'm not good with any of the choices but It is what it is. I guess it's the anxiety of the unknown that makes me feel this way. That I'll just have to get over.

    I hope I'll be able to at least be able to blend food up and swallow it. Or use a big straw.

    I wish you all the best and send my prayers Russ.


  • Wade1
    Wade1 Member Posts: 30 Member

    Thank you swoosh 13 for the welcome.

    I'm so glad things went that well for your husband.

    You said it was stage 1. I thought they told me once it spreads to a lymph node it was stage 3. I'm curious was it cancer in his lymph node? I'm sorry if that's a stupid question. I'm just trying to learn more about cancer.

    I hope and pray his CT and PET scans come back negative.

    Maybe I'll post my PET Scan narrative so you and Russ know what I'm talking about. Sometimes because of my lack of knowledge on this whole subject inhibits me from asking and answering questions the correct way.

  • Wade1
    Wade1 Member Posts: 30 Member

    I was wrong it's called the impression.

    Here's my results.

    PET CT SKULL BASE TO MID-THIGH

    Collected on October 27, 2023 3:54 PM


    Results

    Impression

    IMPRESSION

    1. Metabolically active right oral cavity mass compatible with biopsy-proven squamous cell carcinoma.

    2. Metabolically active right level 1B lymphadenopathy, most compatible with metastatic disease.

    3. No other FDG avid lesions to suggest distant metastasis.

  • Swoosh13
    Swoosh13 Member Posts: 84 Member

    Wade1,

    Did your biopsy say if the lymph or tumor was caused by the HPV +16 virus OR if they think it was caused by smoking or something else. Because my husband’s swollen lymph node and base of tongue tumor were both on the left side and no nodes lit up in his PET on the right or anywhere else in his body, AND they determined it was caused by that HPV virus, it is much more treatable than non-HPV. We were also told rad/chemo together had a 90%+ cure rate so they saw no reason to do surgery first. I’ll try to find the new staging chart from 2018 which also goes by HPV vs non HPV virus, size of nodes, how many, on just one side or both, etc. (I’ll send to you or paste it here or both later today.).

    We also had a second opinion at Northwestern in Chicago with their 3 person tumor board and they concurred on the no surgery route. That is also how we decided to do 7 weekly Cisplatin doses vs the 3 larger ones spread throughout the 7 weeks offered at our local cancer hospital. In the end it’s the same amount of Cisplatin but we found he tolerated it better on a weekly basis.

    I had already found that “newer” 2018 staging chart on the internet before we saw both sets of doctors which helped us understand better.

  • Wade1
    Wade1 Member Posts: 30 Member

    swoosh13

    No HPV.

    It's from chewing Skoal snuff. Also, a touch of trauma to the exact place in my mouth where I chewed might of accelerated the snuff caused problem.

    I do believe it's just from snuff. Above is just the way my ENT has it wrote up out on the portal. He thinks it's just snuff also but he had to note the punches in that side of the face I took when I used to box a little.

  • wbcgaruss
    wbcgaruss Member Posts: 2,484 Member

    Swoosh, thanks for adding in some information and personal experience with this cancer treatment for Wade.

    I am so glad your husband is doing so well so quickly with such a great recovery from treatment.

    Count your husband and you Blessed to be one of the exceptional cases of quickest and easiest recoveries.

    Take Care, God Bless

    Russ

  • wbcgaruss
    wbcgaruss Member Posts: 2,484 Member

    Wade, I am good with your choice of treatment, and it always has to be your choice of course. It is good to read and watch videos and get plenty of advice but the final decision is up to you.

    It is what I would call the standard of care for H&N cancer in many instances, I had it for throat cancer, 35 radiations, and 3 chemos, plus added chemos.

    Swoosh's husband just went through it also and it is a proven method of treatment for H&N cancer. There have been countless folks who have had the 35 rads and 3 chemos routine and it works, it eradicates cancer.

    So you said, "To be honest I'm not good with any of the choices but It is what it is". Well, I agree none of us were glad to be put in the position you are in and many of us were, but the cancer is there and verified and we have to deal with it. I always looked at cancer like a big high wall that I came to in life and it just stops you in your tracks and you can't continue your journey, you can't move forward with life till you destroy this wall.

    Also, you said, "I hope I'll be able to at least be able to blend food up and swallow it. Or use a big straw". Well you may or may not need to blend your food but I will post some recipes I have collected along with recommending Boost VHC (Very High Calorie) drink to maintain your weight during this. Did your doctors recommend that you get a feeding tube, In my case, they wouldn't start treatment unless I had one. If your doctors recommend a feeding tube for your case I would say listen to him and get one. They are a lifesaver and make treatment easier not worrying about getting enough meds and hydration, and nourishment in. And when treatment is through and you can maintain your weight it is easily removed.

    Thanks for your prayers, appreciated.

    Your PET results show cancer and the biopsy verified it along with the type it is. The good news on the scan is "No distant metastasis" meaning it has not spread anywhere else in your body. That is good news.

    NEGU (Never Ever Give Up)

    Take Care, God Bless

    Russ


  • Wade1
    Wade1 Member Posts: 30 Member

    I got a call from my oral surgeon today. My Radiation oncologist finally got a hold of him. Now I'm going to wait for my treatments to start until quite a few teeth are removed on the lower jaw and upper jaw. He says they look like they could be a problem for radiation and if I don't get them removed I'll lose my jaw bone where the bad teeth are.

    Which really sucks as I've always been proud of having all my teeth including my molars for 52 years. I'm guessing the older fillings that are metal might be bad.

    I was hoping maybe I'd lose one. Nope. I was wrong.

    I didn't even know about the teeth thing until my radiation oncologist called last week to set up my appt with my chemo oncologist. I was asking him if there was a way of protecting my teeth during radiation. He seemed surprised I asked and then asked me if I had any teeth that might be getting bad or is bad. I told him none give me problems but he'd have to ask my dentist or my oral surgeon.

    The good thing is my oral surgeon knows what teeth need to go. So I can skip making a appt with my dentist and hury things up a little.

  • wbcgaruss
    wbcgaruss Member Posts: 2,484 Member
    edited November 2023 #15

    Wade, sorry to hear you need teeth pulled but believe me it is best to avoid major problems later.

    Remember in my first answer to your posting I emphasized this fact when heading into cancer treatment.

    Hope you don't lose too many but your surgeon will know which ones have to be pulled. If a tooth is questionable it should be pulled as I understand.

    Hang in there you will encounter a little bit of everything on this journey.

    Look at it this way, you still have braggin rights to the fact that you kept your teeth 52 years.

    Take Care, God Bless

    Russ

  • Wade1
    Wade1 Member Posts: 30 Member

    I had my oncologist/Hematologist Thursday.

    He will be giving me cisplatin concurrent with my Radiation from my other oncologist.

    Blood work up for before treatment seems good from what I could see. High white blood count which I think is coming from everything involved with having a inflamed cancerous tumor and node. I guess its a baseline full blood workup.

    I see my oral surgeon Wednesday and prob loose some teeth after Thanksgiving sometime.

    Then they said I need a baseline hearing test. It might be Monday. It's because of there's a chance I could get what Russ went through.

    First time I'll have a hearing test in a building. Always been in the traveling OSHA trailer every year. I'm wrong, school was in a building.

    My blood work for HepB all came back good.

    I was wondering, before treatment should I get a HepB vaccine if they have one? Also, would anyone get the newest COVID booster before treatment? I already have my flu shot.

    Thanks ahead of time.


    Wade

  • wbcgaruss
    wbcgaruss Member Posts: 2,484 Member

    Thanks for the update Wade, things are moving right along for you. I remember these times well, you have tons of appointments and then you will have treatment every day.

    When getting cisplatin please keep watch as you receive treatment for any neuropathy starting in your hands or feet and let your doctor know about it.

    I too have my flu shot and as far as hepatitis B goes here is a link to WebMD to read about it and decide if you are in any risk categories listed.

    Do I Need the Hepatitis A and B Vaccines?


    I personally limit getting vaccines and as far as the COVID shots I wouldn't personally get near one. I have heard and read some bad information on the covid vax and since it seems to be such a hot-button issue I will say no more about it here but if you want info about it private message me.

    Of course, it is a personal choice and I fully support getting info on both sides of the story and making your own decision.

    So glad things are moving along well for you.

    Wishing You The Best

    Take Care, God Bless

    Russ

  • Wade1
    Wade1 Member Posts: 30 Member

    Update.

    I went to my oral surgeon to get teeth removed last Wednesday. In my previous visit with him he asked if I wanted numbed or put to sleep. Like a dummy I chose numbing. So he went at it on Wednesday. He said he couldn't believe how strong my teeth where in my gum and jawbone. After drilling, cutting and yanking, he only got three done and said there was no way to get the rest numb enough because of how healthy my teeth where. He told me to come back the next morning and get put under. My Radiation oncologist had already called in before Wednesday and told my oral surgeon to take most of the other side teeth also. My oral surgeon said he wasn't going to need to take all the teeth my radiation doctor wanted because some would definitely handle radiation. Next day I was put under and he took a total of 12 teeth mostly on the tumor side and a few on my other side. Plus all 4 molars. Been in a lot of pain for the past 4 days. I haven't taken any percocet though. Seems like the prescription ibuprofen is keeping it at the point I can handle it. It's close though. I almost took a Pecocet last night but I didn't.

    So it's like 14-21 days after oral surgery I can start my treatments. I still need to get my baseline hearing test in. Can't though till my gums heal up some as your hearing can be effected after oral surgery. Also I need another consultation with my radiation oncologist. I'm going to presume that's when I'll get my mask made.

    I don't see therapy starting till after the first of the year.

    At least I feel like I'm making progress by taking the proper steps to prepare for therapy. It's everything my radiation and Chemo oncologists wants done before I start.


    My prayers are with all of you.

    Wade

  • Wade1
    Wade1 Member Posts: 30 Member
    edited December 2023 #20


    I had my appointment last Wednesday at my Oral surgeon. At my consult before Wednesday he asked if I wanted to be numbed or put under. He asks because most of my doctors know I try to do a lot of things with the least amount of medications. I chose numbing. He said that would work because my teeth shouldn't be in there that well. I chose incorrectly. Once he Started cutting, yanking and drilling he told me that the teeth where very healthy and in my gums and jaw bone securely. He said he didn't expect that.

    After 3 he stopped and said my teeth where to tough to remove so he couldn't get me numb enough. He told me to come in the next morning (Last Thursday) and he'd put me completely under and remove the rest.

    Wednesday he told me my radiation oncologist had called and wanted most of the other side out. My oral surgeon said he didn't think some needed out because they could withstand radiation.

    They put me under Thursday and removed 9 more so 12 in total. He left my front teeth and some upper and lower on the non tumor side to help chew. But I lost a few on that side plus my 4 molars.

    I've been pretty sore the past couple days. I haven't had to take a percocet yet. My prescription Ibuprofen has kept it tolerable. Not saying I didn't come close to taking Percocet but I've managed without so far.

    So I know after multiple teeth extraction you have to wait 14-21 days before Radiation treatment. Plus I have to wait a little while after multiple teeth extraction for my baseline hearing test. Then I'll have another consultation with my radiation oncologist. I would guess it's to make my mask.

    I don't think I'll see Radiation or Chemo treatment till the new Year since I'll be about ready for it during the holidays.

    It least I feel like I'm moving forward though with getting everything done that my radiation oncologist and my Chemo oncologist/Hematologist want done before treatment.

    Take care everyone. My prayers are with you all.

    Wade

  • goffrey
    goffrey Member Posts: 58 Member

    You do not need to quarantine yourself during/after radiation because you can't spread radiation to other people. Many people do not have surgery and only have chemoradiation. The survival rates are the same so one is not better than the other. It is VERY common. With it being cold and flu season you will want to be a bit more careful due to chemotherapy lowering your immune system. Many times they do not put in a port if it is not a long term deal. I had induction chemotherapy and then chemoradiation and did not have a port. Mayo Clinic does not like to put in ports unless absolutely necessary due to the risk of infection and blood clots. I am glad I didn't get one.

    The teeth issue sucks but common with radiation. You have to have a healthy mouth because after radiation the lack of saliva makes dental issues more common. Good luck and expect a fairly long recovery time but you will get through it.

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