Oral Cancer

Wade1 · November 2023

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.

wbcgaruss · November 2023

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...

https://www.preventcancerinfections.org/health-tip-sheet/friends-family-and-public-places

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.

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 · November 2023

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 · November 2023

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...