New Member

Well, scoleh, welcome to the CSN H&N support discussion group.

Since you had surgery already you are correct the next thing is taking care of the lymph nodes with a radical neck dissection usually followed by the standard 35 radiation treatments and chemotherapy beginning, in the middle, and at the end.

Since you are in good shape you should come through this well. HPV positive is the most responsive to treatment with high percentage outcomes-cancer gone.

1. Candidate for DART-That would be a decision your cancer team would have to make so if you fully trust and have confidence in them ask about all options. I think DART has been used recently but the old-fashioned 35 rads and chemo seem to be the standard for a long time now and get rid of the cancer. Remember this is a one-shot deal, you want to get it the first time so make sure you go for the guaranteed treatment from your team. This radiation, operations, and chemo can disrupt and change the treated area over time as we age it can have more effects so you don't want to revisit and go back and do it again.
2. Neck dissections are not tough, I had one, and along with your previous operation they would want to get all the cancerous lymph nodes out of there and the radiation and chemo are for mopping up of any leftover cancer cells at the cellular unseen level. Unfortunately, I had only one lymph node affected but it was not encapsulated, it had spread beyond the lymph node and caused all kinds of problems. You want to get bad lymph nodes out of there while they are still encapsulated and can be removed safely.
3. Chemo and rads are the front-line therapy using radiation and proven chemotherapies on the type of cancer you have. Immunotherapy is usually done later if needed.
4. 
   
5. If you don't quite feel comfortable with your care team or their diagnosis a second opinion would be good. Also even if you are confident in your care team you may still want a second opinion that is up to you. Clinical trials usually come into play if you have a rare or unusual cancer or area of cancer or recurrence of cancer as for you H&N cancer I would think they would use the standard procedures first. You don't say where you are getting treatment but if you are in a major hospital or major cancer treating hospital or a major cancer center that is good. My first cancer was treated at Barshinger Cancer Center https://www.lancastergeneralhealth.org/patient-and-visitor-information/find-a-location/ann-b-barshinger-cancer-institute

You have prepared well and are ready for the 4-6 month slog but also take note it can take many more months to fully recover, up to a year or sometimes more. But you will get there may have done it before you. It is not easy and could well be the toughest thing you ever faced in your life, this treatment is described at times as the toughest or most brutal of cancer treatment around the H&N area because it can affect so many functions such as eating, breathing, swallowing, voice, etc.

I recommend you look through the Superthread at the top of the page, loads of links and info in there.

I am posting below something I wrote up I hope it helps see what you can get out of it.

Keep us updated.

Wishing You The Best

Take Care, God Bless

Russ

Our Motto-NEGU (Never Ever Give Up)

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

You are very welcome, I know it's a lot of info but when going into cancer treatment is serious business and more info is better.

Wishing You the Best

Take care, God Bless

Russ

So it sounds like they are comfortable that they got clear margins from the tonsil removal. And now want to do the second operation on the lymph nodes and remove them which makes perfectly good sense to me, get all the cancer out or at least be confident you probably did, and then do mop-up follow-up radiation. And I would say most of the time when they remove lymph nodes the cancer is encapsulated in the node so it all comes out of the patient such as with your tonsil where a Malignant T1 lesion came out with the tonsil. And in this process, they say you can skip chemotherapy because the radiation would be good enough. But I am glad they want to do follow-up radiation because that eliminates the risk of errant cancer cells being left behind, the radiation will get anything that is there that shouldn't be. And that makes sense because I had a radical neck dissection and all they wanted me to get was radiation. They wanted me to get proton therapy but I didn't feel my health would let me travel and get 30 treatments in and I would get started and not be able to finish it because I would not be local. So instead of proton, I worked with the local cancer center whom did my first cancer to go through radiation with the Cyberknife.

Scoleh, it seems to me when considering your options there is one thing to verify with your team and you need to feel comfortable with it and that is to get this in a one-shot deal or in your case a segment of treatments in a short period of time which sounds like it will involve the second surgery and follow up radiation. You don't want to visit this again because of less treatment and missed cancer cells. But it sounds like you have a good team and are considering your case in every way and are coming up with a solid treatment regimen. Also not using chemotherapy for example or just using surgery say on someone's cancer and no follow-up and if that gets the cancer so much the better because just in case a person gets cancer again you still have those treatment options in the background if ever needed. This is good because there are lifetime limits that they want you to have of radiation and chemo. So it sounds like you have a good care team, good plans of action and everything is going well for you so far and I wish you the best with your treatment, your care team, and your outcome to be cancer-free and rid of this. Anytime we have cancer it is a life disrupter at the very least, there is this cancer in front of you, a wall so to speak and we can't go forward in life till we deal with it. We have good knowledgeable teams with tons of treating cancer under their belt these days and it is improving all the time.

I hope some of what I have said helps but any more questions to ask feel free and I will answer as honestly and experience and research-wise as best as I can. I am just glad if I can make it easier for the next guy or gal and give them info ahead of time especially stuff like questions to ask your doctor.

Wishing You The Best

Take Care, God Bless

Russ

It was actually not too bad, you are having surgery and like any other surgery, you have there may be some swelling and pain afterward and soreness but they should give you meds for that. They may attach a small drain of some sort to it for a short period of time also. I can't say it was bad at all, light effects for me as far as the neck dissection. You can have some numbness and your shoulder movement could be affected and there are a lot of nerves in the area and some can get cut. So ask your doctor about your particular case because nerves can be affected among other things. Just like the overall cancer treatment a neck dissection is a bit different for each person so you could have effects being mild to what would be considered a complication. The left side of my face around my jaw is numb and also my ear. So there are some risks of this type of stuff you probably won't be affected. But In my neck dissection, the cancerous lymph node I had was not encapsulated so the cancer had spread so they had to do a bit more cutting and surgery to get all the cancer. If your lymph nodes with cancer are intact like many people who have this operation it is a fairly common operation. But it is still an operation and they are cutting open a portion of your skin so there will be normal swelling and soreness and some possible pain the first couple days afterward. There are risks with any surgery to that effect but the idea is to get the cancer out and defeat that and then deal with any side effects you may get. Check out this link there is a good video explaining it--click the link and the video is right there just click on it.

Let me know if you need more info.

Take Care, God Bless

Russ

Congrats, scoleh, these add-ons serve a great purpose and do their job but thankfully they are only temporary.

Does this mean you are tubeless now?

Anyway, it means things are going in the right direction and your body is healing.

Thanks for the update.

Wishing You The Best

Take Care, God Bless

Russ