Extremely Scared - Husband Diagnosed with Throat Cancer

RAKGA
RAKGA Member Posts: 5 Member
edited January 24 in Head and Neck Cancer #1

My husband was just diagnosed with squamous cell carcinoma in his throat at the base of his tongue. His ENT sent him for a CT with contrast this morning and the results are a spot 1.5cm in the largest section, no additional areas involved such as bone or muscles around and one lymph node on the same side. No midline crossing. I am terrified and having a hard time convincing myself that he’s going to make it. The ENT is scheduling a biopsy in the next week and then a pet scan. He does not feel it has spread based on what he has seen so far. Please help me with realistic thoughts of if I am going to lose him. Sorry for the hopelessness.

Comments

  • wbcgaruss
    wbcgaruss Member Posts: 2,219 Member
    edited January 10 #2

    RAKGA, Welcome to the CSN H&N discussion board. fear not, cancer treatment and especially head and neck cancer treatment has greatly advanced especially in the last 10 or 20 years. Please calm down and take heart you are not going to lose your husband. There are many on here that have had the same or similar cancers and they beat them and came out cancer-free. I would say almost everybody I have known of has beaten H&N cancer and many are still going strong cancer-free today. I would say converted to English measure his tumor is about one-half inch not that big in my estimation and not involved in any surrounding areas such as bone or muscle. My guess would be that they would they may just treat him with chemo and radiation of 35 radiation treatments and chemo in the beginning, middle, and at the end. This is sort of the standard treatment anymore and other than that they may operate and remove some lymph nodes which is not a bad operation and easily tolerated.

    The only other thing is if they can just operate and get the cancer that way and be confident they have clear margins and don't need any follow-up rads or chemo

    They will get rid of his cancer but keep in mind if he needs the radiation and chemo this is not an easy treatment to go through and in fact can be downright brutal but can be done and has been done by countless H&N patients. I myself have had cancer 3 times and I am still here typing to you. But I give God the Glory for that, all of it, by providing such good medical care and doctors and equipment to treat me. Nevertheless, the advanced treatment is here and I feel it would be very unlikely that he would not come out of treatment CANCER FREE. On here we call it NED (No Evidence Of Disease).

    So let your heart rest young lady your husband will make it through this and be cancer-free.

    I would recommend you check out the Superthread at the top of the page there are loads of information in there with links and you will find it helpful.

    I would also recommend that if your husband's care team wants him to get a port of feeding tube accept it and go along with it, the docs work with this every day, and when they recommend something they know what they are talking about. I am going to post a write-up below here for new people coming into the cancer experience a step-by-step sort of and I hope it helps you.

    Wait till all the scans are done and they work up a treatment plan for him to see where you folks are at but ask more questions if you have them.

    Wishing You The Best

    Take Care, God Bless

    Russ

    Our Motto On Here is NEGU (Never Ever Give Up)


    So You Think you Have Cancer?


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


    Important:

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


    So Next Step Is To:


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


    Your ENT or Cancer Team Guides the Process of your Treatment


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





    You May Have Hospital or Cancer Center A Cancer Team


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


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


    INTEGRATED APPROACH TO MANAGEMENT

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


    What’s Next?


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

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

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



    Dental Care


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


    Gain Weight


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

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

    Consult with your doctor about your weight.






    Feeding Tube?--Port?


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

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

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



    Mask?


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


    What is a radiation mask for?




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


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



    Treatment for Head and Neck Cancer


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

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


    How is head and neck cancer treated?


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


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


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

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

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

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

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

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

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



    Surgery

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

    https://nyulangone.org/conditions/head-neck-cancer/treatments/surgery-for-head-neck-cancer



    Side Effects During Treatment With Radiation


    What are the side effects of radiation therapy?

    Radiation therapy can damage normal, healthy cells near and around your cancer. The damage may cause side effects. These side effects can be very different for different people. Your side effects may depend on:

    • The dose and type of radiation used
    • The site of your head and neck cancer
    • The stage of your head and neck cancer
    • Your age

    Types of side effects

    Side effects can appear around 2 weeks after the first radiation treatment or much later and can include:

    • Mouth sores (ulcers in your mouth)
    • Dry mouth
    • Pain or difficulty swallowing
    • Changes in taste or smell
    • Changes in the sound of your voice
    • Jaw stiffness and other problems with your jaw bone
    • Changes in your skin
    • Feeling tired



    Side Effects During Treatment With Chemotherapy


    Side effects of chemotherapy

    Chemotherapy can affect the healthy cells in the body and cause side effects. Everyone reacts differently to chemotherapy, and effects will vary according to the drugs you are given. Some people may have few side effects, while others have many.

    Your medical oncologist or nurse will discuss the likely side effects with you, including how these can be prevented or controlled with medicine.

    Common side effects include:

    • tiredness and fatigue
    • nausea and/or vomiting
    • tingling or numbness in fingers and/or toes (peripheral neuropathy)
    • changes in appetite and loss of taste
    • diarrhea or constipation
    • hair loss
    • low red blood cell count (anemia)
    • hearing loss
    • ringing in the ears (tinnitus)
    • lower levels of white blood cells, which may increase the risk of infection
    • mouth sores.

    Keep a record of the names and doses of your chemotherapy drugs handy. This will save time if you become ill and need to go to the hospital emergency department.


    Targeted therapy

    Targeted therapy targets specific features of cancer cells to stop the cancer growing and spreading. Each targeted therapy drug works on a particular feature, and the drug will only be given if the cancer cells have that feature. For some head and neck cancers, a targeted therapy drug called cetuximab is occasionally used when people cannot take the standard chemotherapy drug or the cancer is advanced.


    What are the possible side effects of targeted therapy?

    Targeted therapy drugs have different side effects than standard or traditional chemotherapy.

    ...

    Other side effects

    • Nausea and vomiting.
    • Diarrhea or constipation.
    • Mouth sores.
    • Shortness of breath or trouble breathing.
    • Cough.
    • Feeling tired all the time (fatigue)
    • Headache.
    • Hair loss.


    Immunotherapy

    Immunotherapy uses the body’s own immune system to fight cancer. The main type of immunotherapy in Australia uses drugs known as checkpoint inhibitors, which help the immune system to recognize and attack cancer cells. Nivolumab is a checkpoint inhibitor used to treat some types of advanced head and neck cancer.

    Side Effects of Immunotherapy Head and Neck Cancer

    These side effects are common but may not occur in all people or with all types of immunotherapies.

    • Feeling tired (fatigue)
    • Diarrhea.
    • Fever.
    • Shortness of breath.
    • Rash and/or blisters, covering less than 10% of the body.
    • Nausea.
    • Vomiting.
    • Itching.






    Below is one persons story of typical Head and Neck Cancer Treatment involving radiation and chemotherapy.

    It gives you an idea of what people face that go through this.

    What you or a loved one may encounter.

    Your results may vary, for example some people get diarrhea and or constipation and some don’t.

    Some get sores inside their mouth from the chemotherapy called mucositis other not so much.

    Consult your care team to deal with any side effects you encounter




    One Persons Story of Head & Neck Cancer Treatment



    Hello Again


    I had 7 weeks of radiation, and three infusions of high-dose cisplatin. (The chemo requires an overnight hospital stay - except for the last dose, which they fractionated because they were worried about permanent hearing damage).


    On that, yes, I'm still getting tinnitus. It's intermittent and was much worse directly after the chemo - but it's still there. I don't know if it will go away fully or not, but I hope so. (If not, a small price to pay to fight the cancer).


    I never lost my voice, but when the mucositis was at its worst, talking was sometimes difficult - just because of the thick mucous accumulating in my mouth and the need to spit .. so I would sometimes sound like a cartoon supervillain or someone with some kind of speech impediment as I talk/gargled through a thick layer of yuck.


    (And yeah, I used flat mineral water and every other thing the internet suggests, including a concoction of magic mouthwash - which has viscous lidocaine (for numbing), sucralfate (for a barrier), antihistamine (to reduce phlegm), and other bits and bobs all mixed up by a compound chemist. You could google it for a try, as it was OK ... from my research the best mucositis treatments are new patent medicines available in the USA, and I think maybe just now starting to distribute into Australia .. google medicines like "Gelclair", which advertise symptomatic (and prophylactic) relief of mucositis. I couldn't get my hands on any in time to help me.


    I stopped eating around weeks 4-5 of treatment, mostly because of the rancid taste dysgeusia. Everything in my mouth tasted contaminated. (A side effect of the chemo).


    It's gone now, and I am able to take everything I need by mouth - but no solids .. just hydration and the formula that I'd otherwise put into the PEG I can drink by mouth now (so I'll look at getting the PEG removed in the next couple of weeks).


    Yes, I still have a sometimes sore throat. Basically, the radiation damage you suffer over the course of treatment is .. well it's just a horrible insult to your body. It's worse than a normal wound or injury because the treatment actively attacks the stem cells (which normally help you heal), so the wounds can be severe and slow to heal. But my pain is very manageable now .. just 2 panadol today. It was at its worst the first 2 weeks after treatment.


    When you finish the course of radiation - yes, the interior and external radiation damage can be a problem (who knows, you might get lucky, don't expect the worst). It's great to no longer have to go to the hospital every day - just be ready for the possibility that you might be debilitated at that point, and be prepared that you might need 2 solid weeks of pretty much bed rest and just ticking away time before you start to heal and feel better.


    For me, it went something like this, over the span of treatment:


    Week 1: First round chemo & 5 rads (felt fine, some nausea from chemo)

    Week 2: (5 rads) minor tinnitus onset from chemo, some vomiting, radiation fine

    Week 3: (5 rads) tinnitus fading, feeling quite good, no issue with rads some reduction in taste

    Week 4: (5 rads, chemo) start to notice mucous problems, no burns yet, more serious nausea and vomiting from chemo

    Week 5: 5 rads) noticeable exterior burns and sore, stretched skin, mucositis more severe, notice rancid taste to everything in mouth - can no longer eat or drink, become PEG reliant

    Week 6: (5 rads) mucositis worsening, always have to carry spit bag, burns need intrasite gel and daily dressing, relying on panadol / neurofin but pain increasing

    Week 7: (5 rads + chemo) mucositis debilitating, need to gag up mucous constantly, accidentally swallowing any precipitates a need to vomit, exterior neck burns are moderate and need dressings and intrasite gel, doctor escalates pain management to endone / morphine

    Week 8: (first-week post-treatment) awful awful suffering, vomiting, spitting up blood, constipation, bloating, night cramps in legs, mucositis severe, pain moderate to severe, wounds still require intrasite and dressing for a few days

    Week 9: (second-week post-treatment): exterior burns healing nicely, no longer require dressings, just moo goo (healing moisturizing cream). Pain lessening, but mucositis still awful, night cramps in legs

    Week 10: (third-week post): exterior burns gone, pain better, mucositis still bad, but feels a little bit better, able to sleep for more than an hour or two at a time thanks to improving mucous, night cramps gone after taking daily vitamin & zinc

    Week 11: (fourth-week post): turned a corner with mucositis, now still have to spit during day and night, but it's a fraction of what it was. Experimenting with foods but can't viably swallow them due to gross mucous - but start tentatively to sip drinks .. still mostly PEG reliant

    Week 12: (fifth post): mucositis backing off more, can now take most nutrition and hydration via the mouth and thinking of getting rid of PEG. Pain is manageable, don't require anything more than panadol. Can't yet eat solid foods, although taste appears to have returned to at least 50% of pre-cancer levels


    So ... that should give a pretty fair idea of how things have been for me .. you might get better (or worse) luck with side effects, but hopefully, it gives a little perspective. Knowing what to expect has been really tough, and it's easy to get into this habit of scouring Doctor Google almost daily. I think in the post-treatment phase the most important thing is to take it easy and not expect too much from yourself. Your body has been subjected to a major attack, give yourself time to rest and heal, and if you need help make sure you ask for it.


    Oh yeah .. and on kids .. no, they have no idea, just "dad's been a little sick"


    Link below to this online forum posting of people discussing treatment side effects.



    https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Your-experience-with-side-effects-from-head-amp-neck-cancer/td-p/25626/page/2

  • Swoosh13
    Swoosh13 Member Posts: 72 Member

    Dear RAKGA,

    I'm sorry to hear about your husband's diagnosis but am here to share HOPE.

    My husband's CT was June 27 this year and also showed left base of tongue SCC and the primary tumor there was about the same size as your husband's. On June 29 he had his biopsy and it "reassured" us that his cancer was caused by the HPV+ 16 virus (so even though he gave up smoking in 1988), it was not caused by his smoking. You will find out more from your husband's biopsy as they do test for the HPV virus. Actually they end up staging the cancer differently if it is HPV related (it's about 90% curable caught in the early stages, as it appears to be for both your husband and mine). His PET was July 19 and showed two left lymph nodes on the left side of his neck (near left base of tongue tumor) but no other metastases in his body anywhere else.

    We met with the 3 doctor tumor board the last week in July (surgeon, Hematologist (for chemo) and Radiologist). They all concurred that he was Stage I (huge sigh of relief) and no surgery. BTW the staging chart for HPV virus related tumors changed in 2018 (because so many of these tumors now ARE caused by HPV). I have that chart if you want to review it, I'd be happy to private message it to you. But I also do not want to overwhelm you at this point. What got me through this was the knowledge from this Board (especially as you'll find when you hear back from Russ later, the Admin of this Board), was following other people's journeys and asking questions.

    Please feel free to search for my User name (Swoosh13) on this Board as I have posted a number of times and when my husband was done with treatment (he finished 33 radiation days over 7 weeks and 7 weekly Cisplatin chemo treatments) on October 24. He started his treatments the day after Labor Day, September 5.

    We also got a second opinion (which is never a bad idea) from the tumor board at NW-Northwestern in Chicago in early August, as they have a different type of radiation there, Proton, but they were booked out through mid-October even in early August, so we just did all of his treatment local to us.

    He is now 11 weeks post treatment and doing quite well. He just had a follow-up with labs and both doctors this past Monday and everything looked great. They were quite pleased. He has regained 20 of the 30 pounds he lost and never needed a feeding tube thankfully. They are scheduling his first post treatment PET scan in 6 more weeks to make sure he is cancer free. Praying for that scan, but the doctors are very hopeful as well.

    I just have so much to share so read what I have posted first, and I am SO open to you private messaging me if you would like. I'd like to pay it forward, as there was another woman on here about a year ago (MarieO) whose husband had tonsil cancer and had the same treatment, and she was a wealth of information and comfort to me during our "journey."

    I am sending prayers to both you and your husband. It sounds like they did catch this early. My husband had no symptoms other than feeling a swollen left lymph node in his neck and came to tell me and off to the first ENT we went.

    Prayers, your husband will get through this, as will you.

    Swoosh13

    Gail

  • MarineE5
    MarineE5 Member Posts: 1,029 Member

    RAKGA,

    Russ and Swoosh have provided you with a lot of information and I am sure it feels like you are drinking water from a firehose. One suggestion I would like to make is try not to search on "Dr. Google" as a lot of the information out there is outdated.

    I had Base of Tongue cancer in 2004. Since that time, advancements have been made in the way Doctors approach the treatments, Radiation machines have improved and combination of Chemo as well. I had Surgery to remove part of my tongue, Neck Disection to remove involved Lymphnodes followed by Radiation only. Surgeon had safe margins and Radiation Oncologist agreed. Chemo was a backup plan in the event I had reoccurrence which did not happen.

    As Russ mentioned, there are a lot of long term survivors here and some that have moved on from this site and pop in once in awhile. I am sorry you find yourselves here, but you found a great site for information and a lot of knowledgeable members.

    When you have time, check out the Superthread that Russ mentioned.

    My Best to You, Your Husband and Everyone Here

  • just4jme
    just4jme Member Posts: 6 Member

    You are only a few weeks behind us (my husband and me). Today were his first radiation and chemotherapy treatments. There is a very reassuring story that has helped me immensely. Swoosh13 I think is her name. I’m eternally thankful for her sharing her own husbands journey.

    The biopsy will tell you if it’s p16 positive. Which from what I have read, has an even more positive outcome.

    Ultimately, I do understand your fear. But try to have faith everything will be okay.

  • RAKGA
    RAKGA Member Posts: 5 Member

    Just touching base. My husband had a surgical biopsy on Wednesday and the pathologist was not able to identify the type of cancer in the OR. He mentioned seeing more lymphatic tissue than was expected in SCC so they sent off three biopsy samples. On Friday, one came back showing like it was going to be negative for lymphoma but we are still waiting on the other results. The waiting is excruciating and it’s scaring me even more that we can’t even get an appt with an oncologist or a pet scan without an official diagnosis. So, we wait…. And I pray nothing is spreading in the meantime.

  • Swoosh13
    Swoosh13 Member Posts: 72 Member

    Hi Again Rakga,

    When my husband had his biopsy on June 29 we were able to get the results through his “My Chart” account with our doctor; however as I recall it did take a few days. Also to delay it further his ENT went on a week’s vacation for the July 4 holiday so we didn’t get the “official” word that it was SCC HPV+ 16 until he called us on July 6. By then I already “read” his biopsy results that it was caused by HPV. Then we decided to go with a different health system who treats more cancer than his ENT so his PET didn’t happen until July 19 and we met with the 3 doctor tumor board the last week in July. That’s when their surgeon told us it was Stage 1 (everything was left side, left base of tongue and 2 left lymph nodes which lit up on the PET scan). So no surgery, just rad/chemo

    I say all this as we were told it was a somewhat slow growing cancer. He first felt the lymph node in his neck in late April, so it took that long to get the tests and scans and dr appts done. He did not start treatment until September 5

    Do not panic. I know it’s easy for me to say now but from the size of his tumor in your first post your doctor will get back to you soon with biopsy results and you will have a better understanding of things. I’m here if you need a private “ear” to message as well.

    Prayers coming your way.

    Swoosh13/Gail

  • wbcgaruss
    wbcgaruss Member Posts: 2,219 Member

    Hi, RAKGA, try not to be too upset. Easy to say, right, but I well know it is a stressful time waiting for the results of a biopsy or scan but look at it this way, no amount of worry will change anything so in the meantime just pray, pray, pray. I know you will worry some though and that's normal, just stay as busy as you can and shove it back to the back of your mind. Clean out those closets you were meant to clean or there must be a project somewhere you need to finish. Anyway, you get the idea the busier you are the less you dwell on it. If they don't contact you by Monday I would just give them a call Tuesday, it can't hurt and they understand. Try not to be concerned with the cancer growing in the meantime when I had throat cancer till they got biopsies, did more scans, had my mask made, and put a port in and a feeding tube, radiologist made a radiation plan up it was a month after finding it that I started treatment and they didn't seem concerned about it. I also recall others on here till they get all the preliminaries in it is about a month. Usually in H&N cancers, it is squamous cell cancer and it must be a slow-growing non-aggressive cancer because many have that gap of preparation before treatment starts. Also with cancer, it has to go step by step and not miss anything so they are sure the cancer is eradicated so some amount of time and procedure is needed to make sure things are done correctly. So be as patient as you can and know that your care team is doing all they can to make it easy on you and your husband and get rid of this cancer in a timely fashion.

    Wishing You The Best

    Take Care, God Bless

    Russ

  • RAKGA
    RAKGA Member Posts: 5 Member

    We got the official call this morning that the biopsy did show “trickles” of squamous cell carcinoma in the lymphatic tissues of the biopsy. The ENT has now ordered the PET scan and we hope that will happen this week. Said the viral testing for HPV will still take another couple of days. Praying for good results!

  • wbcgaruss
    wbcgaruss Member Posts: 2,219 Member

    RAKGA, sorry to hear the biopsy wasn't clear but do not worry they are following protocols and will work up a plan for your husband. That is a new term to me about a biopsy I have never heard it described as “trickles” of squamous cell carcinoma. They are going through the order of assessing your husband, the PET scan will let them see even finer things, and since it is an all-body scan (Eyes to Thighs) it will show if cancer has moved to anywhere else in the body so they know exactly what they are dealing with. Hopefully, it is all contained in one area. I have had squamous cell cancer 3 times and it was always retained in one area so I do not think this type spreads very easily. They will use the PET and possibly other scans to work up a treatment plan for him and in the meantime they will probably have him get a mask made if he is getting radiation. Also, I had a port and feeding tube during my first cancer and if your care team recommends he get either I highly recommend you follow their directions and get them. Remember they are temporary to get through treatment. I know this is a huge amount to take in and deal with but trust me just do one thing at a time and you will get through this. Always have a note pad handy and write anything down you don't want to forget. Lean on your care team they are there for you and this forum is here for you.

    I don't know if I mentioned it to you check out the Superthread at the top of the page there are loads of information in there with links and you will find it helpful.

    Wishing You The Best

    Take Care, God Bless

    Russ

  • motorcycleguy
    motorcycleguy Member Posts: 478 Member

    RAKGA,

    You're in the right place; all of us here are proof that you CAN get through this!

    Hang in there. It's a very scary situation, but you will get through it.

    My advice is always the same. It may be tough to hold onto weight, for a while. Please get your husband to EAT all of his favorite foods .. and LOTS of them.

    The most important advice, though - is to keep spirits positive as much as you can. I know that's not easy - but it helps more than you know.

    I'm glad your husband has your support...

    I wish you the best possible outcome!

    MG

  • RAKGA
    RAKGA Member Posts: 5 Member

    Good morning everyone. We finally received the final "official" biopsy results of Poorly Differentiated Squamous Cell Carcinoma P16 Positive. The ENT said this is overall good because it wends to respond well to radiation.

    The words "poorly differentiated" worry me a bit but the ENT said that was not a bad thing. (?) So... more waiting until February 5th for his PET scan and February 8th for the radiation oncologist. We are working to get something scheduled with a general oncologist as well.

    I feel like this was a hint of good news today but I am still having a hard time. :(

  • Swoosh13
    Swoosh13 Member Posts: 72 Member

    Hi Again Ragka,

    I went back and reread my husband’s biopsy results from 6/29 and his also said “consistent with moderate to poorly differentiated SCC.” P16 is positive. So very similar to what you both were just told. The HPV +16 is good because it is staged differently than say oral cancer caused by smoking, etc. My husband stopped smoking in 1988 so his was purely HPV (again more treatable with a good outcome).

    Our hospital had a 3 doctor “tumor board” that they scheduled us to see once his PET was over. Doctors were surgical ENT, radiologist and oncologist for chemo. Surgery was immediately ruled out as they told us he would get the same cure rate with just chemo/radiation. Depending on what facility your husband is being seen at they should pretty quickly set him up with the appropriate doctors.

    So yes you are getting some good news and moving down the path you need to get your husband treated and cured. Sounds like things are going in the right direction.

    Swoosh13

  • wbcgaruss
    wbcgaruss Member Posts: 2,219 Member

    RAKGA, glad to see that you are making progress and they are setting up a treatment plan for your husband and yes the HPV16 responds better to treatment lending more to a positive outcome.

    Wishing You The Best

    Take Care, God Bless

    Russ

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member

    RAKGch A,

    Welcome to the H&N forum. Now relax and “buck-up” so to speak. You have been presented with a very curable type of cancer, Base of tongue squamous cell carcinomas. It sounds like you have caught it early based on your cancer description. This is all good news when evaluating a persons “cancer”. It may be only stage I or stage II. Not only is early diagnosed cancer better for treatment it is also much better for the amount of radiation, chemo and surgery thay have to throw at it.

    Your excessive worrying will not help the situation at all. Instead, you may want o be thankful and hope the news moving forward is more the same.

    It will be alright,

    CivilMatt