Squamous cell throat cancer

Posted by fwpoole @fwpoole, Sep 26 12:09pm

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.

@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.

Jump to this post

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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