New here … tonsil and lymph node

Shaun72 Member Posts: 7 Member
edited January 11 in Head and Neck Cancer #1

Hi everyone ,

Seems this more common then I knew , I too am positive for HPV . Started in the tonsil and months of doctors giving me antibiotics after antibiotics… now I’m faced with this and to be honest I’m a bit freaked about getting the feeding tube .. which when the asked I said “yes”. I haven’t started any treatment yet .. just did my PET scan yesterday. Please any advice would be so helpful. I’m healthy avid gym goer and hope I can keep it up .

thank you !


  • wbcgaruss
    wbcgaruss Member Posts: 1,973 Member

    Shaun, welcome to the forum. I hope you find the help and support you need here. I recommend you check out the "Superthread" at the top of the page and it is loaded with information and links to help and guide you during this time. Usually, docs will try 2 rounds of antibiotics and it that doesn't help they refer you to an ENT. Don't be afraid of the feeding tube. During treatment and recovery it can be a lifesaver and a friend just in case you can't eat. Once treatment is over and you are eating again and maintaining your weight it is easily removed in an office visit. It is possible you may not even need it but I always tell people that if your doctor recommends it go ahead and get one. You made the right decision. I also recently compiled a list of dealing with H&N cancer and I will post it here and it has recently been accepted into the Superthread under CONTRIBUTIONS FROM OTHER CSN MEMBERS: Remember to check out the Superthread it has loads if info about radiation, chemo, dealing with the mask, foods to eat during and after treatment etc.

    Wishing You the Best

    Take Care God Bless-Russ

    H&N Cancer Sequence of Treatment

    So You Think you Have Cancer?

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


    • 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.


    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.


    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 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.

    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 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.

  • Shaun72
    Shaun72 Member Posts: 7 Member

    Thank you so much !

  • wbcgaruss
    wbcgaruss Member Posts: 1,973 Member

    Shaun, there is one more thing you should be aware of.

    Anyone who gets a feeding tube or goes through Head & Neck cancer treatment should have a speech therapist.

    A person can encounter a period of time where they can’t eat or swallow food due to swelling or extreme soreness of the throat area.

    A person will then need to depend on the feeding tube for food, hydration, and medications.

    It is said that if you end up using a feeding tube for a period of time and are not swallowing that you can forget how to swallow and will have to relearn it again.

    I was surprised to hear this because I would have thought that swallowing is a natural function you are born with and it would just always be there and work.

    I didn’t want to lose my swallowing ability so I was diligent to do the swallowing exercises that were assigned to me.

    So your doctor or cancer team should get you with a speech therapist before you even start treatment and they will educate you on the effects of treatment and will give you swallowing exercises to do starting pre-treatment and all during your treatment and for as long as needed.

    They may even have you take a swallowing evaluation before you start treatment to have a baseline of your swallowing and function for comparison later.

    Your speech therapist knows all about the head and neck area and will be able to assist you and your care team from start of treatment through recovery and beyond for any problems encountered.

    Below is a video link explaining it--

    Wishing You the Best

    Take Care God Bless-Russ

  • LuvnTN
    LuvnTN Member Posts: 71 Member

    Unfortunately, welcome to the forum. I was diagnosed about 13 months ago with left tonsil and left lymph nodes only - nothing on right side. However, during the radical neck dissection, they discovered one nodal extension.. so, the recommendation was to have both sides treated (only lower dose on right side). If you need to have surgery (i.e. robotic tonsilectomy, neck dissection, etc.), I would find a treatment team that has done hundreds of these procedures to ensure best outcomes. Usually, the university medical centers are good places to start. I had my surgery done at USC Keck, and follow-ups at Vanderbilt. The university medical places are also good for finding dentists who are up-to-speed on latest recommendations for dental considerations prior to radiation treatment. The dental aspect is big. If you have no nodal extension, your treatment team might suggest considering Proton radiation. Your treatment team might also consider treating only one side... which would leave one half of your head and neck untouched by the radiation. Some, potentially long-term downsides to proton vs IMRT are starting to come to light.. however, it can minimize some short-term collateral damage if done by the right team. Proton radiation, however, is not first-line/front-line treatment... and may not be covered by insurance? You would have to check into that asap if you even want to entertain that route. The "gold-standard" treatment seems to be surgery (if possible), followed by 30-35 sessions of radiation concurrent with weekly cisplatin (platinum-based chemo) infusions. I had a total of 30 sessions of proton with 7 infusions of cisplatin. While i did have a feeding tube through my nostril for two weeks following the surgery, my treatment care team discouraged the treatment G tube for one main reason... they wanted me to continue to eat as normally as I could to minimize any loss in swallowing function. Their thoughts were that, if needed, a feeding tube can always be inserted later. For treatment that affects the tonsil area and lymph nodes, eating/swallowing is mostly affected by the radiation/chemo treatment side-effects. I did as much research as I could into minimizing these side-effects to allow me to eat as normally as possible during and after treatment. I used a red light pen to manage mucositis, and I fasted 24 hours prior to, and 24 hours after each weekly chemo infusion. This went contrary to what every doctor in my care team was recommending; however, I went off of research conducted that showed this fasting can minimize some chemo side effects. The idea being... if you can minimize chemo side-effects (nausea, vomiting, mucositis, etc.), you will be able eat more on those days that you are not fasting. Only one of my doctors had any knowledge of the red light therapy (they make at-home, hand-held devices), and none had heard about the fasting. However, both of these practices are shown providing benefits through research/studies done by cancer doctors at cancer hospitals. Good advice I got after diagnosis was to put on as much weight as you can, whenever you can... prior to any surgery, and prior to any treatment. I recommend a keto route - more health fats for calories. The hospitals/doctors/home care nurses always talk about Ensure, and other sugar-filled options; however, those high-carb drinks were not the route for me. I got my calories from avocados, olive oil, butter, coconut oil, etc. (adding them anything and everything I ate).

    • red light info: on Youtube, type in "Revolutionary Laser Light Therapy Helping Cancer Patients Undergoing Chemotherapy"
    • fasting info: on Youtube, type in and go to 5:40 mark: "Diet, cancer, and patient control: how fasting, IGF-I, and blood sugar impact care with Dr. Dawn..."

    Again, DM me if you have any questions. Also, stay as active as you can during treatment! Good luck.

  • lerry1957
    lerry1957 Member Posts: 3 Member

    Hello Shaun,

    I'm new here as of today but not so new as with stage 4 HPV cancer of the right tonsil. I chose to go with the robotic surgery for the tumor, tonsils, and lymph nodes removed to cut down on the duration of the radiation(5 weeks). I'm a month and a half out from my last radiation treatment. I have a feeding tube, which I highly recommend for your recovery's sake. My oncologist told horror stories of people losing all kinds of weight without a tube, then taking them forever(exaggerated) to recover from the body's inability to bounce back. Remember, once everything is said and done, you'll most likely be at or near the bottom. With only one direction to go, and that is up from there. It's slow getting back, but eventually, you'll get there. My taste for food is starting to return, but I still can't eat much. I lost 30 lbs. even with the tube. Dry mouth at night, I used to use a log-shaped cushion, hugging it to prop my mouth shut while sleeping. Then I discovered the use of a chin strap. Mucus or phlegm is still a problem I'm having which is another that goes away slowly (at least for me). Oh well, may God be with you! And hope to read some good news about you here in the future..

  • Shaun72
    Shaun72 Member Posts: 7 Member

    Thank you for the support ! I did get the tube , it’s healed now and I went back to working out . They are still mapping my treatments as I opted to go into a clinical trial. The havnt told me what stage I’m at yet , I guess they may tell me this week . My mind is always racing with more I read .. I guess I will expect the worse and hope for the best . I have talked to a few people up in Canada and the recommended that I use cannabis for pain … using patches and edibles. It’s legal up here and I may ask my doctors for a prescription as well . Once I’m started I will post again and share how I’m doing as I hope it helps someone else .

    thank you again

  • aB75LGG65
    aB75LGG65 Member Posts: 2 Member

    I'm new here and about to begin what is probably the scariest treatment I have ever undertaken. In July I had what was diagnosed as a 7mm depth of squamous cell carcinoma removed from the right side of my tongue. Then in late October I had surgery and they removed 22 lymph nodes from the right side of my neck. They all came back negative except one and this is the one where focal extranodal extension was present and thus has made me a candidate for radiation and possibly CISplatin. The Oncologist explained it to me that the radiation is Batman and the chemo is Robin. I'm wondering about the chemo as the doctor tells me it boosts my long term recovery chances by about 8%. From what I've read on this forum about chemo I'm wondering if it's worth it? On top of that there will be 30-35 radiation treatments. They have me scheduled for the mask construction next week and I have until next Friday to decide about the Chemo. I mentioned to the doctor that the only pain or discomfort I feel from the cancer is where they have cut me ( and that has healed up nicely) however I guess 1 node positive or 20 positive the treatment is the same. I certainly would appreciate any sage advice from the brave people who have travelled this route before me. Thanks so much..

  • wbcgaruss
    wbcgaruss Member Posts: 1,973 Member

    Well, aB75LGG65 Hello and welcome to the CSN H&N forum. If you can supply a first name it would tend to have a human touch more so than aB75LGG65. Sorry, you find yourself here but I hope you find some help.

    I would recommend you check out the Superthread at the top of the H&N page, it is loaded with information and links.

    The standard treatment regimen for many H&N cancers is 35 radiation treatments with chemotherapy in the beginning middle and the end.

    You are wondering if you should get the chemo? If your doctor recommends it in your case I would say to get it. Your doctor has dealt with many cancer cases I assume and has a good feel for each particular case and what will work best to eradicate this cancer and make you cancer free.

    I think most of us including me when I was diagnosed and probably you just want this cancer out of your body so you can go on with life. So if your doctor recommends both chemo and rads my opinion would be yes.

    My radiologist told me this is a one-shot deal with my throat cancer and believe me you only want to do this once, the first time, and get it right, and get the cancer out of there.

    You will find this treatment very difficult to sometimes brutal in the latter stages of radiation, in the last couple weeks and then 2-3 months following treatment.

    The reason for the radiation and chemo follow-up to surgery is to get rid of any errant cancer cells in your system and the immediate cancer site. Cancer on a cellular level can't be seen so radiation and chemo do the mop-up.

    Also here is a link or two explaining treatment options and how they work for H&N patients.

    Wishing You the Best

    Take Care God Bless-Russ

  • aB75LGG65
    aB75LGG65 Member Posts: 2 Member

    Thanks Russ much appreciated and I'm trying to change my user name as your right it's more of a password not sure how doesn't seem to give me that option.. anyhow thank you so much for the insight - Bill

  • wbcgaruss
    wbcgaruss Member Posts: 1,973 Member

    Glad to help and now I know I am dealing with Bill and not a number, thanks.

    Take Care God Bless-Russ

  • Shaun72
    Shaun72 Member Posts: 7 Member

    Quick update … I started my immunotherapy and so far so good .. only a couple days into radiation. I’m still feeling good and going to the gym . The G tube has healed nice and only gives me a bit of discomfort when I bump it . Happy thanksgiving to you all .. yes I know I’m a day late . Lol have a great weekend . Be strong ! We got this !

  • wbcgaruss
    wbcgaruss Member Posts: 1,973 Member

    Thank you for the update Shaun and I am happy for you that things are going well, and a happy Thanksgiving to you and your family also.

    Take Care God Bless-Russ

  • Shaun72
    Shaun72 Member Posts: 7 Member

    Hey everyone!

    Hope is well with everyone! I finish my radiation tomorrow. So far I can still swallow and eat … some minor skin burn . My sense of taste is long gone . Anyone know how long that takes to come back a bit ? I never ending up using the peg tube . I did loose some weight … which I think is normal ?? I lost about 15 pounds . No mouth sores or anything ..did loose all the hair below my jaw line . I didn’t like shaving anyway .

    just wanted to touch base and let ya know I made it !


  • wbcgaruss
    wbcgaruss Member Posts: 1,973 Member

    Ye HaH Shaun, I celebrate with you and congratulate you on this milestone to get rid of this beast. Tomorrow all this part will be in your rearview mirror. I think you are one of the Blessed ones to go through this and not have severe side effects and the ones you do have sound very tolerable. You did not need to use the peg but if needed it was there and I always say to folks if your doctor recommends a feeding tube get it you will be glad you did just in case. No mouth sores, you are so very Blessed, and losing your facial hair, is not a big deal and it will come back but most likely will be patchy. I know your taste is gone but it will come back. It could take 3-4 weeks may be up to 8 weeks to several months it varies per person. Hopefully, you will get it all back but many of us did not get 100% back but Wishing You the Best.

    Take Care God Bless-Russ

  • Shaun72
    Shaun72 Member Posts: 7 Member

    Thank you !!!!!

  • godzilla1964
    godzilla1964 Member Posts: 43 Member

    Congrats Shaun !! I'm at week 4 1/2 and have the same effects, or lack thereof, but I did not get the feeding tube. Just couldn't get past the idea of a tube sticking out of my stomach lol. I can eat and swallow, taste gone though, no mouth sores, still have plenty of saliva, and facial hair gone in the rad concentrated place under chin. As of this mornings Radiologist weigh-in still a +6 on my weight. Really just want sense of taste back . . . .

  • Shaun72
    Shaun72 Member Posts: 7 Member

    Thats great news ! It’s going get worse before it will get better . My advice is keep eating as hard as hard as it may get .. just keep at it .

  • lerry1957
    lerry1957 Member Posts: 3 Member

    Hey Shaun,

    You're getting there! I get my tube out Monday. That I've had since surgery 6 months ago. I absolutely don't know what I would've done without it! I couldn't get anything at all down. Not even water. It went in the feeding tube also. The water tasted like something out of an old clothes iron! Still does to a certain extent. Those who chose to do without a tube are really risking it. If they find themselves unable to eat and end up losing a lot of weight. Healing is much slower when recovering from radiation, chemo, surgery, etc. My radiation oncologist told me of one person deciding against the tube. Who lost a lot of weight. It took him nearly a year to bounce back whereas most get in a couple of months. Recovering for me was slow but sure. Although during you can't tell. Unless comparing yourself to where you were a month before. Especially the mucus/phlegm thing! Strive On!

  • wbcgaruss
    wbcgaruss Member Posts: 1,973 Member

    Hey lerry welcome to the forum.

    I am glad to hear a testimonial from someone who has had treatment for this H&N cancer being pro positive for getting the feeding tube. As you have found out you couldn't have survived without it, it was your lifesaver. I too had the same situation during my first cancer, nothing would go down by swallowing, like you I could swallow nothing not even a sip of water. And as your oncologist said recovery is much rougher and longer even if you can force your way through treatment and get enough in to survive. But why people want to force eat meals and being in pain while doing it with a raw throat from radiation is beyond me, folks make it easy on yourself. Recovery for everyone in this H&N treatment is slow, measured in weeks and months not days and weeks. But glad for you that you are on your way.

    Wishing You the Best

    Take Care God Bless-Russ