Squamous cell throat cancer

Posted by fwpoole @fwpoole, Sep 26, 2021

Im a 66 YO male and I've recently been diagnosed with "Moderate squamous dysplasia with superficially-invasive squamous cell carcinoma" in my throat. Its p16 HPV. What's the difference between "moderate squamous dysplasia" and "superficially-invasive squamous cell carcinoma"?

I know that "Moderate" means its in the middle of the spectrum and superficial means on the surface. I take both of these terms as being a positive wrt my cancer. Am I right? My ENT says surgery is too risky due to the tumors relationship to my larynx. My oncologist is recommending 3-4 rounds of chemo (5-FU and Carboplatin) and 25 rounds of radiation.

I've been through chemo 2 years ago with NHL so I sort of know what to expect. But, radiation scares me. My brother in law went through radiation with lung cancer and the side effects ended up killing him. I'm also claustrophobic and prone to panic attacks in tight spaces so putting my head in a cradle or vice for radiation is NOT going to happen. And I don't want to have to live on sedatives for 5 weeks to get through it.

Has anyone ever gone through (successful) treatment for this throat cancer without radiation? I don't understand the aggressive nature of the treatment for "moderate" and "superficial" diagnosis.

Interested in more discussions like this? Go to the Head & Neck Cancer group.

@fwpoole, I'm so sorry to hear that the big "C" has struck twice – lymphoma and now throat cancer. I moved your message to the Head & Neck Cancers group where you can meet others like @karly @skoshi, @margieinia @fxdwing and @catlyn. They can also share their treatment experiences.

Fwpoole, I can understand your reluctance to have radiation therapy given your brother-in-law's experience and your claustrophobia. Remember that not all radiation is the same. Your brother-in-law's experience will not be yours. Before dismissing radiation therapy, I personally think it is worth having a heart-to-heart with your radiation oncologist. Explain to him you concerns and reluctance. Find out what alternatives there might be. Ask what would be the prognosis without radiation. How do they help people who are anxious about closed spaces? Etc.

The final decision is always yours, but I recommend having all the information to make an informed decision, including perhaps a second opinion. Have you thought of getting a second opinion? When do you start chemo?

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@colleenyoung

@fwpoole, I'm so sorry to hear that the big "C" has struck twice – lymphoma and now throat cancer. I moved your message to the Head & Neck Cancers group where you can meet others like @karly @skoshi, @margieinia @fxdwing and @catlyn. They can also share their treatment experiences.

Fwpoole, I can understand your reluctance to have radiation therapy given your brother-in-law's experience and your claustrophobia. Remember that not all radiation is the same. Your brother-in-law's experience will not be yours. Before dismissing radiation therapy, I personally think it is worth having a heart-to-heart with your radiation oncologist. Explain to him you concerns and reluctance. Find out what alternatives there might be. Ask what would be the prognosis without radiation. How do they help people who are anxious about closed spaces? Etc.

The final decision is always yours, but I recommend having all the information to make an informed decision, including perhaps a second opinion. Have you thought of getting a second opinion? When do you start chemo?

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Thanks @colleenyoung, I guess I’ve hit the cancer lottery. I just got all this news late late week and Im still waiting on the referral to the radiation oncologist and, yes, I have lots of questions. Im also looking to get a second opinion. But, I know from experience there is a cancer playbook and a flow chart for every cancer. Im sure thats where the recommendation is coming from. Im hoping to hear from others who may have gone through this, with or without radiation.

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Hang in there! I recommend Dr. David Routman Radiologist who was excellent for my similar cancer to yours. I had 33 radiation treatments and 6 Chemo’s in 6 weeks. Proton beam was the difference to me in my recover as I had very few side effects.

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@fwpoole

Thanks @colleenyoung, I guess I’ve hit the cancer lottery. I just got all this news late late week and Im still waiting on the referral to the radiation oncologist and, yes, I have lots of questions. Im also looking to get a second opinion. But, I know from experience there is a cancer playbook and a flow chart for every cancer. Im sure thats where the recommendation is coming from. Im hoping to hear from others who may have gone through this, with or without radiation.

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Sir, I have a pea-sized, Stage 1 squamous cell HPV tumor in the base of my tongue. They too rule out surgery and I'm about half way thru six infusions of carboplatin & taxol plus 35 rounds of radiation. Based on your reduced chemo and rad recommendation, perhaps your issue is less serious than mine.

I understand your claustrophobic reluctance to have your head restrained for radiation. The soft plastic mesh mask with thousands of small holes is certainly an experience. But it assures them pinpoint accuracy to attack your cancer. Just make sure to tell them when they mold this mask around your head that you must be able to open your eyelids so you can see out. Yes, it's that tight. Ask them to explain what's going to happen to you during the process so that you can relax. Make them go slowly.

Now in my third week of treatment, my throat just began to restrict plus I have thick saliva that I must spit out often. There are meds that help with these side effects. So yes it has begun to suck – but it sure beats the alternative. My Doc has been wonderfully honest with me about the difficulties that lie ahead – but together we shall positively persevere. I have much to live for and miles to go before I sleep. I wish the same for you.

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My son-in-law has been diagnosed with throat cancer. I do not have many facts, but so far I have been told it is in his voice box. He is waiting for a pet scan. He has been told the treatment will be 35 days of radiation with chemo once a week for a number of weeks and he will have a feeding tube. He has also been told that the next 9 months will be very difficult and unpleasant. I realize that my information is limited, but is there anyone out there that has had a similar diagnosis and what was your treatment? Any info would be appreciated.

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@sandyjr

My son-in-law has been diagnosed with throat cancer. I do not have many facts, but so far I have been told it is in his voice box. He is waiting for a pet scan. He has been told the treatment will be 35 days of radiation with chemo once a week for a number of weeks and he will have a feeding tube. He has also been told that the next 9 months will be very difficult and unpleasant. I realize that my information is limited, but is there anyone out there that has had a similar diagnosis and what was your treatment? Any info would be appreciated.

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Hello sandyjr. My heart goes out to you all. I will share my story quickly and hope some of it might help. I had my second squamous cell carcinoma on my tongue identified 10/2021. After discussing my treatment plan locally, I reached out to Mayo. Best decision. I had a partial removal of my tongue (leaving out the medical terms) and then a rebuild with muscle and vein from my arm (same surgery). I woke with a trach and obvious swelling and pain in my mouth and arm. I was released from the hospital on day 6 and the trach removed. The 6 days with the trach were difficult, but I would have to say worse in the beginning and easier to deal with on following days. The phlegm stuck in my throat, required to cough to clear, was difficult. Mayo's oncologist reached out to me advising that my cancer was aggressive, and a plan was set up for 30 radiation treatments (M-F) and chemo once a week for 6 weeks. A feeding tube was "threatened" every week as I lost weight from not being able to eat due to mouth pain. I drank a concoction of high calorie additives and drinks, blended with ice cream. I cried as I drank it because my mouth hurt so bad. Fast forward to end of August 2022 when I hit 6 months from my last treatments. I would say that it has been hard and difficult and basically sucks but family support is what has brought me through. Also, my mom and I stayed at The Hope Lodge in Rochester, MN which is owned by the American Cancer Society. Staying there was a blessing. Being able to talk with others going through similar journeys. It is free to stay there, and the Mayo has to refer you to them. I hope something here helps.

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Hello @sandyjr and @leelee70 and welcome to Mayo Clinic Connect. I am glad the pair of you have connected. @leelee70 thank you for giving @sandyjr some very helpful information on based on your experience.

You will notice that I have moved your posts into an existing discussion on Squamous Cell Throat Cancer that you can find here: https://connect.mayoclinic.org/discussion/squamous-cell-throat-cancer/

@sandyjr what questions do you still have that members such as @cooper12345 and @leelee70 can help with?

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My SCC was ear, not throat, but I met several patients with oral, throat, and salivary gland SCC in my years at Quantum Immunotherapy in Freeport, Grand Bahama Island. That is a good complementary therapy to help your immune system fight cancer after traditional medical therapy/surgery. The best results seemed to be patients who had done chemo/radiation, despite the side effects of feeding tube,etc. My radiation had only moderate oral lesions which reduced my ability to eat, but there were methods to control pain to enable swallowing. My surgery was at Mayo Clinic, Rochester, and when asking the radiation oncologist there if all radiation is equal wherever it is done, the answer was no. Living in Ohio, they highly recommended a head and neck radiation oncologist at Univ. of Michigan for a closer location for those 7 weeks. That was in 2012. With the increase in availability of proton beam therapy, I would advise a second opinion, hopefully at a large referral center for your optimum care. While the mask and radiation treatment was probably the most upsetting and uncomfortable part of my 10 years of treatment and surgeries for metastatic SCC, it is tolerable. I began with a small dose of valium to help with the claustrophobia issues but was able to stop using that partway through. My dad had oral SCC from smoking and alcohol ,and despite radical surgery at a referral center, and radiation done at a local hospital, he succumbed to a recurrence back in 1993. Every year better drugs and immunotherapy treatments become available for this cancer. The referral centers will have the best new treatments available. If you can, give it a shot. We drive 10 hours to Minnesota but I am still alive and on a new immunotherapy 10 years later. Dr. Katharine Price, the head and neck oncologist there is amazing. Best of luck to you.

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@sandyjr

My son-in-law has been diagnosed with throat cancer. I do not have many facts, but so far I have been told it is in his voice box. He is waiting for a pet scan. He has been told the treatment will be 35 days of radiation with chemo once a week for a number of weeks and he will have a feeding tube. He has also been told that the next 9 months will be very difficult and unpleasant. I realize that my information is limited, but is there anyone out there that has had a similar diagnosis and what was your treatment? Any info would be appreciated.

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Feeding tube is an excellent idea and he will learn quickly to deal with it. The alternative is to slowly starve as eating will not be a good experience after a couple weeks.
"Difficult and unpleasant", his handlers are being honest with him. Many of us on this site have been through "difficult and unpleasant" so if he feels the need for help or encouragement, please get him connected with us or others. It is not an easy path but it is the right path.
Courage! This may be one of the toughest battles he will face in his life but he will come through most likely. The alternative is to search for a nice place to be laid to rest. But whilst in this battle and the weeks and months to follow, I think as most can agree that this battle will make him stronger, appreciative of life more, and be grateful to those around him.
He may never get back to "normal" but he will have a new normal and life can be fine with a new normal. Let's get through the hard part first, the treatment. After radiation he most likely will continue to go downhill for a couple of weeks and then slowly, bit by bit, recovery begins. He will complain. He will fuss. And if he is human he will cry. But giving up is not an option.
Good luck to him. We are here. I'm twenty-one years out from my cancer and two years since my last cancer related repair. If I needed to go through that hell again I would. I'd cry. I'd fuss, but I would fight. God be with you both.

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Hi, I was diagnosed with HPVp16 of an Unknown Site on 4 Jan, 2017. Simply stated, they believed the cancer site was back and under my tongue area. Thus, treatment would be focused on the left side of my head. Diagnosis was made based on an evaluation of 31 lyme nodes which were removed. It was determined that the cancer, from the unknown site, had traveled to the first 2 nodes, one u under my left ear and the other under my left clavicle.Further, that it had not spread outside of those 2 nodes. Surgery NOT recommended but radiation, with a higher dosage, was with the UW-Madison, WI Cancer Team. Treatment began on 26 Jan, 2017 and ended 25 March, 2017 (35 treatments).
Recovery process included feeding tube (best decision or I would have starved to death). Still, I loss 65 lbs but had strength due to the high protein drink. I COULDN'T EAT! Removal of the tube felt like a quick, hard and sudden stomach punch when they removed the tube port. Mask/face cradle was a necessary evil but without it, I wouldn't be sending this message. My only support team came from the VA nursing staff, my radiation oncologist and most importantly GOD! Without them, I had no one. I highly recommend you have a team of supporters because in the first 9-12 months, the ride has many bumps in the road. Thanks to my team, I had someone to talk to. Dry mouth was TERRIBLE because my saliva glands stopped producing any saliva. Fact is, I would never get back my full salvia but, I would say I have 60% back during the day but waking up, I have 0%. I just LIVE with it. It has been 5 plus yrs with no evidence of reoccurrence. I see my Oncologist and ENT on a rotating 6 months schedule. That way, I have 2 sets of professional eyes evaluating my throat. They say 1 year and I said no! It is my body and they work for me. They have no problem with that approach.
In sum, i suggest a 2nd opinion unless it will take a lot of time. I believe waiting will only give the cancer cells more time to metastasize which can be a roll of the dice. For me, it was my best informed decision to do what I did. If I
hadn't removed the cancer cells, I would be dead today. Good Luck! You can get through it if you want to. God Bless!

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