Just Diagnosed - SQUAMOUS CELL CARCINOMA - Tonsil

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Stunts9431
Stunts9431 Member Posts: 4 Member
edited November 2022 in Head and Neck Cancer #1

I had covid back in January of 2022 right after I had facial paralysis then noticed a lump in my neck all within 3 months Jan-April. Went to E.R. for facial paralysis. They said it wasnt stroke. Ran CT Scan on me with dye, didnt see anything. Face returned to normal within few weeks. Doctor said the lump in my neck was normal and it would return to normal. August of 2022 Lump got larger and was now visibly protruding the right side of neck. Went to E.R. again, another ct with dye, they said they dont see anything and its definitely not my lymph nodes. Had follow up with main doctor... He just referred me to a ENT. First thing ENT does is ask me to open my mouth and he checks my tonsils (no one else did!), he says "you might have tonsil cancer your right tonsil is abnormally large, lets get a biopsy..." ENT submits to insurance... wait wait wait... approval...(medical) . They did a fine needle aspiration in right neck node... Test comes back [SQUAMOUS CELL CARCINOMA - THE MALIGNANCY APPEARS TO BE CYSTIC, SUGGESTING AN OROPHARYNGEAL ORIGIN] this means i have cancer but not in the node they tested.. some place else which is weird because the biopsy matter was gray in color (wtf, necropsy?). So ENT says make another appointment to come back and see me. Wait wait wait... He tells me the results which I already got myself from the lab. Now ENT says... Lets do a biopsy on the tonsil... see what we find.... submit to insurance... waiting for approval..... wait wait wait.... waiting for approval to make appointment for biopsy... time is passing by... After biopsy in tonsil Ent says he will ask for approval to get PET scan... Approvals take 1-2 weeks. Biopsy appointments take 2-4 weeks. Now just waiting... After node biopsy my neck node is huge.... they jabbed it a bunch. It was the size of a M&M (the peanut ones) now its the size of a golf ball.

I make my living as a motorcycle stuntman/actor (union) and electronics engineer. I dont have a fear of dying, I face death for a living. I expect death. I do Wheelies at 130 MPH. Most of my friends have died. I have a fear of losing my quality of life. I enjoy being a actor/stuntman and having a gorgeous g/f. Feeding tube, tooth extraction, radiation... Im trying to find a way to rationalize this to myself. Its almost going to be a year since I discovered this lump in my neck and im waiting around for insurance approvals. Im not rich im poor, but everyone envy's what I do, I make a humble living on the silver screen. I dont want to be disfigured. My ugly mug is what gets me by, I dont want to lose it. I want to cut this damn tonsil out of me myself, damnit!

It has to be HPV, im no saint, ill tell you that. Wish I was. I love my gf. Im too old to be single again. Im 47 my gf is 30. She says shell see it through with me but I don't deserve her! I'm praying to God for a miracle.

Im doing a lot of research. Everyone says photon. I might just get the surgery and refuse all other treatment. Im on a very strict diet, all organic non gmo, hitting the gym, now cutting out all sugars and sweeteners, and all artificial food coloring. Doing lots of juicing and multiple vitamins, B16, Zinc, E. Monitoring my rest and sleep. The node was getting smaller and smaller till they sliced it all up with the fine needle. Im worried about the biopsy of the tonsil... the tonsil looks bad... looks like it has infected bubbles and bumps on it they may rupture it and spread the hpv. I rather they cut it out completely then biopsy it. The ENT is also ordering a endoscopy to look down inside my throat and stomach which im worried may also rupture the tonsil which looks infected and ready to burst.

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  • Stunts9431
    Stunts9431 Member Posts: 4 Member
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    Just to recap:

    January - Covid

    February - Facial Paralysis / Lump in right side of Neck Found. Doc says wait it out.

    August - Lump Gets noticeably Larger. Doc refers me for approval to go to ENT.

    September - Ent says tonsil looks like Cancer, neck node mass needs biopsy.

    October - Biopsy report on neck node returns Carcinoma cells but not from neck node, from someplace else.

    October - NOW... Waiting for approval for Tonsil biopsy of infected swollen right tonsil.

    Future - After Tonsil biopsy referral will be submitted for approval for PET scan.

  • wbcgaruss
    wbcgaruss Member Posts: 2,285 Member
    edited October 2022 #3
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    Well, Stunts, welcome to the forum. I'm sure there are other forums where you'd rather be. It appears that everything is moving along as it should with scans and biopsies verifying everything. I am just wondering why nothing showed on the first 2 CT scans you got, usually, a CT scan with dye shows what you have pretty easily. I guess the way the scan presented it that it didn't appear as anything threatening. And another thing is this sending in to insurance for approval, it's too bad that used up a bunch of time because in this cancer fight time is important.

    I feel for you as this diagnosis hit us all hard and it is an intruder in our body which we all just want out of there now but it is not a quick process. but you are lucky to live in times like these cancer treatments are well advanced compared to even 10 years ago. There as a number of treatment options such as surgery, radiation, chemo, or a combination of all three. When all the results are in you should have options of treatment and may even go before a tumor board so multiple doctors can recommend the best treatment plan for you. You may want to get a second opinion which some folks do but if you trust your present care team that may be an option or not. If you are near a major hospital/cancer center that is something to consider. In all the meetings you go to take a notebook and another person with you because you can't remember it all. Two sets of ears are better than one. Ask if you can audio or video record meetings so you can check later if you missed something.

    YOU mentioned you are praying to God for a miracle and that is good, and now is probably a good time to get closer and dedicated to and get to know God in a more intimate way. I especially want to wish you the best as this new journey brings you closer to God.

    At the top of the Head and Neck forum page is something called the Superthread, I suggest looking through it as it is loaded with information.

    Feel free to ask more questions and you are in my prayers.

    I have also recently compiled a collection of ideas from my cancer experience and am posting it below. Please let me know if it helped in some way.

    Wishing You the Best

    Take care, God Bless-Russ


    So You Think you Have Cancer?


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


    Important:

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


    So Next Step Is To:


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


    Your ENT or Cancer Team Guides the Process of your Treatment


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





    You May Have Hospital or Cancer Center A Cancer Team


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


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


    INTEGRATED APPROACH TO MANAGEMENT

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


    What’s Next?


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

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

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



    Dental Care


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


    Gain Weight


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

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

    Consult with your doctor about your weight.






    Feeding Tube?--Port?


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

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

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



    Mask?


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

    What is a radiation mask for?


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


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



    Treatment for Head and Neck Cancer


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

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


    How is head and neck cancer treated?


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


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


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

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

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

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

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

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

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



    Surgery

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



    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

  • Stunts9431
    Stunts9431 Member Posts: 4 Member
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    Hi thanks for your response. The reason why nothing showed on the first two CT Scans is because either negligence or evil, the hospital is so woke all the staff is wearing woke shirts made by the hospital. "We dont tolerate Hate here". and I am a White masculine Male so maybe they chose not to see it but my other doctors were shaking their heads about it and how they had missed it. They all commented on it and couldn't believe they accidentally or purposefully missed it. Its a golf ball sticking out the side of my neck.

  • Stunts9431
    Stunts9431 Member Posts: 4 Member
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    Update::: Right now I have an appointment to have surgery on nov 23rd by a little Vietnamese doctor who has a private Vietnamese ENT practice in a tiny little office to do a tonsillectomy of only 1 tonsil. When I say Vietnamese ENT I mean the whole staff is Viet and everything on the walls is in Viet and all the customers except me are Viet and even the name of the place is written in Vietnamese letters and they all speak Vietnamese and barely any English, they have a lot of bad reviews due to lack of communication. I feel very much like a foreigner there. I called UCI and the soonest they could get me in for a consultation is January and then I would have to be scheduled for surgery a month after? or longer .... who knows how long that will take!!! Here in So Cal everything takes so long , they are so over booked... and insurance approvals... and the node in my neck is getting larger and larger. I dont trust this little Viet doctor, all his reviews online are bad. IDK why my doctor referred me to him, my doctor probably doesn't care and just picked the first one he found. Should I wait it out for the UCI Neck Cancer specialists that has a opening for a consultation next year (in 2-3 months)? Or just go with the Viet Doc with all the bad reviews. The Viet doc does have a degree from Harvard but only hires Vietnamese employees, none of them speak English all their literature is in Vietnamese. and then there is all the bad reviews of people complaining about the service there. But no surgery reviews, not a single one! At first the Viet ENT doc told me he was going to send me to UCI... a week later he changed his mind and decided to do it himself??? Maybe because UCI neck Cancer Specialists are booked so far out?

  • wbcgaruss
    wbcgaruss Member Posts: 2,285 Member
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    I am not saying that the Viet doctor does not know what he is doing, he may be very good but somehow somewhere you need to get set up with a doctor that speaks English and you need this problem addressed as quickly as possible. The smaller the better to deal with cancer. You need to be with a doctor or cancer team that you are comfortable with and have confidence in. Going through this is traumatic enough that you don't need the added stress of a care team you are not confident in and has a bad rating for whatever reason. Whoever is referring you or is your primary doctor get with them and tell them the situation. You should be with an ENT to watch over you and direct you through all of this. Don't wait, do what you need to do but when you have cancer it is priority one and you need to be with doctors and a cancer team you are confident in.

    Wishing You the Best

    Take Care God Bless-Russ

  • Duggie88
    Duggie88 Member Posts: 760 Member
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    Stunts

    Russ has given you great advice and some excellent information.

    I am a retired Vice President with the Teamsters. I was also a trustte on a Health and Wefare and Pension Fund. My concern is the amount of time waiting for diagnosis and treatment. Being union excellent coverage is one thing but the time spent waiting is bull...t. If this coverage comes by the way of your union I would raise royal hell.

    As for treatment I went to a learning hospital in Philadelphia and had surgery within two weeks. If one hospital can't help I would try another. Mine was HPV and they tell me that is the best kind to have because it is very treatable. Mine was almost 13 years ago and my doctor told me he can guarantee I'm going to die one day but it's not going to be from throat cancer.

    I wish you luck

    Keep us posted we can help you get through it.

    Jeff

  • godzilla1964
    godzilla1964 Member Posts: 47 Member
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    This may sound weird but have you considered hiring an interpreter if this is the only ENT that you can get you in quickly? The ENT doc is he US trained?