TORS and Neck Dissection without any Radiation and/or Chemo

stickmanfob Member Posts: 30 Member
edited August 18 in Head and Neck Cancer #1

T2N1M0 - still waiting on pathology but my surgeon told me one of the reasons he was recommending TORS and neck dissection versus chemo and radiation was there may be a chance if just completing this with the surgery.

I have been scouring this discussion board and haven’t seen anyone that has done this tratent alone. Anyone?



  • wbcgaruss
    wbcgaruss Member Posts: 2,106 Member

    Well, Stickman, Generally there is a follow-up with radiation and maybe a little chemo, but mostly radiation to get any errant cancer cells. A cell is too small to see without a microscope so the surgeon really can't be sure he is getting them all.

    It depends on the extent of your cancer, and its location and it can be in areas where it is grown into other tissue areas so radiation is a cleanup.

    I had tongue cancer and a small piece was removed surgically and the ENT got clear margins and I did not have any follow-up radiation. There can be situations like that where a cancer is small and confined to one part and they know it is not spread and they can operate and send the part removed to a lab as they wait and they can tell if they are past the cancer and have clear margins.

    Whatever you do you want to make sure your treatment is extensive enough to get rid of your cancer and only do it once, this is a one-shot deal, you don't want to revisit this.

    When you get the final report of the extent of your cancer let us know. It would be nice if surgery only gets rid of your cancer and maybe depending on the location and size they can do that.

    You have not found anyone who has had it done but every case is different and don't forget they are improving medical treatments extensively especially operating.

    Keep us updated it will be interesting to see your treatment plan.

    As usual-Wishing You The Best

    Take Care, May God Bless & Watch Over You


  • stickmanfob
    stickmanfob Member Posts: 30 Member

    Thank you. It’s been 19 days since my surgery and all is good. Just started eating solid food today. Other than some numbness in my right side of my face, neck and ear and the obvious pain that is short term after surgery not a lot of other complaints. Meeting with the doctor in two days to discuss next steps if necessary.

  • wbcgaruss
    wbcgaruss Member Posts: 2,106 Member

    Thanks, Stickman for the response, I am hoping if you need any more treatments it is a light dose, hopefully, they can be confident that clear margins were attained and they will monitor you with periodic scans which they always do post-treatment.

    Glad things are going well and you are having normal post-operative effects and certainly glad you are able to eat again, congrats.

    As I said make sure their plan will eradicate your cancer, you want this once and done so you can move on with your life.

    Take Care, May God Bless & Watch Over You

  • stickmanfob
    stickmanfob Member Posts: 30 Member

    Once again sorry for all the questions and I am trying to be positive and know that I still have a long fight ahead of me and honestly not trying to get too ahead of myself. I also like to understand all the things that can go right and wrong before I’m in a situation. I’m also a former smoker but with a positive P16 result. My understanding is that even if you get surgery and radiation that this thing can come back. If it does, it seems like the lung is the primary target. What I can’t understand is why survival for this is so low. What happens if they catch it early? Does that make no difference. I’m honestly confused as well I’m some cases much much later after the radiation it metastasized to the lungs. How is that even possible? Couldn’t the NavDx pick it up in the blood before it gets to the lungs then?

  • LuvnTN
    LuvnTN Member Posts: 75 Member

    I think the ol' saying of crossing that bridge when you get there applies to our situations. By no means did i catch my situation "early". I had a tonsil and 54 lymph nodes removed during TORS/neck dissection.. and they found 38 of the lymph nodes were positive for cancer (with one nodal extension). I got treated for that ... and then, at 1 year post-treatment, NavDX score came back positive. With a PET scan, it was discovered that I had a met on my rib bone. Turns out, that metastases was there back in 2021 on my original PET scan... it was just missed. The whole time, I just rolled with the punches... and I didn't really worry about what might happen later in life. The additional reality was also dropped on me by one of the radiation oncologists who informed me that "of course, you know that everything we are going to be doing to you.. chemo and radiation.. both can cause you to have cancer 15-20 years down the road". At which point, I was like.. wait, what? Well, I figured, if I am still here 15-20 years from now, I'll worry about it then... if ever.

    With regards to your ENT's recommendation, have you gotten a second or third opinion? I would search out an opinion from a facility that will take your case in front of a "tumor board". That way, you can rest easy knowing that you had several people look at your specific case and consider appropriate treatment.

    Worrying and stress are two things you definitely don't want to experience when battling a cancer diagnosis. If you can learn to be grateful for every day, thank God daily for what you have (not worry about what you don't have), don't worry about tomorrow (for tomorrow will have its own problems), and just roll with the punches.... this process should be over before you know it. Then, just keep up with any and all check-up appointments/scans/blood tests/ etc. That, really, is all you can do. Thinking about everything else is just going to distract you from living your life.

    As far as a "low" NavDX being worse than a "high" score, I really don't understand that concept. In my mind, a lower score would reflect an earlier detection. I had a 'negative' of zero, then three 'positive's 8, 74, treatment, then a 14, and then a zero 'negative'. The score reflects the amount of dna being sent into the blood stream by a tumor or recurrence... therefore, less dna should reflect an earlier detection. My scores reflect a cancer situation that was getting worse, was treated with radiation... and then got better. A lot of doctors have little experience with the NavDX, and really don't know what to do with the results. I have even seen people on here comment that their doctor(s) wished they hadn't used the NavDX because it gave a positive result... and nothing was spotted on scans or visual checkup. However, with my experience (and others), I would rather have a lower NavDX any day over a higher one. I guess with time, we will see. Getting a PET or CT exposes the body to potentially-cancer-causing radiation as well. If doctors can agree that getting a negative NavDX blood test can eliminate the need to do an annual PET scan in the future, I am all for it.

  • stickmanfob
    stickmanfob Member Posts: 30 Member

    Thanks LuvnTn- Wide range of emotions that I’m showing here on this board. Really am trying to take this step by step but almost scared out of mind what’s lurking behind the corner tomorrow.

  • Swoosh13
    Swoosh13 Member Posts: 50 Member

    LuvnTN, I love your comment about learn to be grateful for every day and thank God daily for what you have and not worry about what you don’t have goes a long way. Tomorrow my husband and I are visiting with the 3 drs on the tumor board at NW in Chicago to see if he’s a candidate for their Proton therapy. Our local hospital did not want to do surgery even though he’s Stage 1 so it’ll be interesting to get their second opinion. Hang in there stickmanfob.

  • stickmanfob
    stickmanfob Member Posts: 30 Member

    Thanks for the comments and as my wife tells me that I’m the strongest Christian in the world when I need something. I know we all have a plan and He is driving that. I’m just also a bit too eager to know why that is.

    I had an interesting call with NavDx and the bottom line is that number is particular to the individual. It doesn’t matter if it’s 10,000 or 55. Whatever your number is that is usually the sensitivity of the test for you.

    Some other information that I picked up today is that probability percentages are what they are but the pathology of your particular situation sometimes but not always shows hints of higher probability of recurrence or not. Some of those hints are in the staging or margins. Regardless, they are hints and can happen to anyone at anytime.

  • stickmanfob
    stickmanfob Member Posts: 30 Member

    Apparently this is the newest guideline that is helping make the determination of whether to observe after TORS and Neck Dissection (A) or give 5 weeks of radiation (B) six weeks of radiation (C) or chemo&radiation (D).

    I had two lymph nodes that were hot which is the only thing that ruled me out of A. So, now of course reading up on the radiation long term effects and don’t like what I’m reading. Sigh. It is what it is and know I should be grateful because it could have been way worse but just trying to research what I can do before radiation to put myself in a better spot. Gaining some weight is the first thing but still researching the rest. There seems to be an argument on receiving less radiation but seems that there isn’t a lot of precedence on that and my doctor keeps saying you want to be the Guinea pig on this.

  • wbcgaruss
    wbcgaruss Member Posts: 2,106 Member

    Stickman, I can't say I fully understand the chart and your situation. Do they plan to do a neck dissection, which is many times done and the chemo rads, or just chemo rads as the sole treatment?

    As I have recently stated this should be considered a one-shot deal you don't want to do this twice. Whatever course of treatment that your providers feel will eradicate this cancer is the best. I assume you have confidence in your care team and are very comfortable with them.

    I see you are lamenting the long-term effects of radiation. This is part of the package. It varies for everyone to very minimal or more serious but you learn to adapt and live with it.

    What you have here is a cancer you have to deal with and eradicate in the best way possible or it will eventually take your life. I am sure your care team is doing its best to present a plan that gets rid of the cancer with the least amount of side effects. They know what they are doing and work with cases like yours and mine every day and have plenty of experience to draw from.

    I am posting something I made up maybe something in there will help.

    Wishing You The Best

    Take Care, May God Bless & Watch Over You


    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.

    Wishing You The Best

    Take Care, May God Bless & Watch Over You


  • stickmanfob
    stickmanfob Member Posts: 30 Member

    I’m really hoping that this post helps others who are recently diagnosed with tonsil cancer and can noticeably tell all the ups and downs and decisions that need to be made when dealing with this. The tumor board came back and said six weeks of radiation where the cancer was detected. That’s two hot lymph nodes on right side with the largest being 2.6 cm and right tumor on right tonsil that was also 2.6 cm. The tonsil margins were clear with no pleural invasion. They recommended only the right side.

    I received a call from another radiologist (2nd opinion) and they said 100% that I had to do both sides. The tumor was big and close to the midline. She said it was crazy to do just one side.

    Now I have to find another radiologist for another opinion. I think the crux is this. The tumor was big and close to the midline and there is a chance (not sure how much) that this leaked to the left side. She’s saying if there’s a chance and I’m so young why would you f around with this and not mop it up. My surgeon and radiologist is thinking that may be overboard because there is a chance but it’s not very high and why deal with all the long term effects for something that may not likely happen. So, do you play it super conservative or just take a small calculated risk. Trying to find another radiologist that will talk to me and look at my pathology report to give me their opinion is like an act of God. Maybe it’s a decision that I have to make on my own. 

  • MarineE5
    MarineE5 Member Posts: 1,027 Member

    Stickmanfob wrote " Maybe it’s a decision that I have to make on my own."

    I have been following along with your thread and a lot of good points have been mentioned above. It is good to get a 2nd or 3rd opinion if time allows it. A member that doesn't stop in anymore but I am still in touch with actually went and had 4 and 5 opinions and finally asked the last Doctor why there were so many options. The Doctor said it is like baking a cake. We all have the mixture and use it in different order to get to the results of a finely baked cake. Your Doctors have one mission and that is to cure you of this cancer.

    When I went to my Surgeon and was presented with different options, I said I want to do this only one time, so hit me with the kitchen sink. I had Base of Tongue cancer. He removed a good part of my tongue, Radical Neck Disection and was followed up with Radiation only. I asked about having Chemo and he told me that was a backup plan in the event I needed it. Radiation was on both sides with the IMRT machine, this was in late 2004, and finished the first week if 2005. I do have some side effects due to the Radiation and removal of a good part of tongue. I can eat but not all the foods I once did. I am not sure if my reply helps or confuses your decision in any way. Your last words in your last post says it all. The final decision is yours.

    My Best to You and Everyone Here

  • wbcgaruss
    wbcgaruss Member Posts: 2,106 Member

    I don't know where you are getting your treatment plans.

    But if you need another evaluation are there any major cancer centers close enough to you to get an evaluation or possibly a major teaching hospital?

    I am glad you are sorting this out, many of us just want to get the cancer out and take the plan offered.

    But I realize you don't want to put it off too long.

    I always looked at it as this cancer is standing in my way and until I deal with this I can't go on.

    My ENT referred me to my chemo doc and my rad doc, he is a great ENT at least in my book.

    I was very Blessed because I am not far from a cancer center and the ENT and the rad doc and chemo people are used to dealing with this I believe.

    But if you look up a cancer center or teaching hospital for your area it may be a good 3rd opinion they would certainly have specialists there and I would imagine the opinion would match one of the ones you have now.

    You have to make the decision but if it was me when it comes to cancer I personally would take the plan that is the surest even if it is the harshest, again you only want to do this once.

    Wishing You The Best

    Take Care, May God Bless & Watch Over You

  • wbcgaruss
    wbcgaruss Member Posts: 2,106 Member
    edited August 10 #15

    MarineE5, thanks for your post.

    One thing you said in your post that grabbed me is the fact that all his doctors are focused on one thing and they are not competing but want to do their best for their patients.

    You said: "Your Doctors have one mission and that is to cure you of this cancer."

    Marine shared some great info Stickman I hope it helps you.

    Take Care, May God Bless & Watch Over You


  • stickmanfob
    stickmanfob Member Posts: 30 Member

    Thanks guys. I live in the Bay Area and UCSF is where I’m getting treated. They are the ones who are suggesting one side. The other second opinion came from a well known cancer facility in the Bay Area but is not a teaching hospital so not sure how many other people in the future will have to make this decision but I guess my cancer (like many here) don’t fit nicely in a box. So, there’s some decisions and difference of opinions.

  • LuvnTN
    LuvnTN Member Posts: 75 Member

    I think some more information would be helpful to making the decision easier. Has any of the radiation oncologists provided Gy dose recommendations for both the right and left side. In my case, it was my tonsil and lymph nodes on the left side; however, since there was. a nodal extension on one node removed, they recommended treating both sides. The plan, though, was to have higher dose on the side that the cancer was on... and lower on the side that was being done just to be safe.

    I don't have my details in front of me.. but, my left side was higher by about 10Gy over my right. Try and see if anyone will provide those details with regards to your specific plan. Just saying "radiation" doesn't provide enough detail to really look at possible side effects. Side effects from 60-70 Gy treatment are going to be different than 40-50 Gy treatment.

    I also told my ENT/surgeon to "do whatever you gotta do to make sure I only have to do this once". However, I did not say that to the radiation and chemo oncologists. Yes, radiation is extremely effective against hpv+scc; however, if they are just "painting" an area to try and catch any invisible, undetected cell(s) that might have maybe, possibly "leaked" over... does the dose have to be the same?

    It comes down also to expertise of the care team. Teaching hospitals see a lot more patients with your situation than a private practice. You want the team that has dealt with the most number of caseds similar to yours! Not a care team that deals with all types of cancer... and has treated a few like you. They should also be throwing out %'s... like if we added chemo to the treatment, it increases your survivability by X%. If we go 40 Gy vs 70Gy, your survivability decreases by X%. I remember when my oncologist recommended weekly cisplatin... and I thought that might be "overkill". I think she said including it with the radiation increased survivability by something like 5-6%... and I said... "do it".

  • stickmanfob
    stickmanfob Member Posts: 30 Member

    The both side scenario did include exactly that. One dosage side was proposed to be lower by approximately 10%. I just came across an interesting article and once again I have T2N1M0 stage 1 tonsil cancer and this study took people in a similar situation as I and the amount of times that they found cancer on the other side of the neck without doing radiation to that side was 2%. It was a pretty recent study. I wish I could attach the website here but I will attach the first few photo captions for those of you who are interested in reaching this further.

  • stickmanfob
    stickmanfob Member Posts: 30 Member

    Spoke with my radiologist at UCSF and feel good about the decision on one side. The tumor wasn’t that close to the midline and that’s the most determining factor.

  • stickmanfob
    stickmanfob Member Posts: 30 Member

    I know it’s different for everyone but this is day 24 after TORS and neck dissection and I still have mucous in my mouth and started eating soft solid food about three days ago and hard to swallow. Feels like something is in my throat too. I know we are all different but anyone know when this get remarkably better? I swear my jaw hurts so much for chewing my food to a pulp.

  • daredevil450
    daredevil450 Member Posts: 2 *

    There is many cases of people doing TOR surgery only and getting clear margins. However, there is always a risk that surgery doesn't get every single cell.

    In my case i did 3 treatments of chemo, followed by TOR surgery and one sided neck dissection. I had stage 1 base of tongue cancer with no lymph spread. My doctor over treated my cancer with the hope of avoiding radiation. I'm still waiting on the pathology report as i was only operated July 28th,