Surviving Stage 3 Nasopharyngeal Carcinoma

[purr-rat beauty]

When diagnosed I had no idea how intensive the treatment would be, even though it took a toll on my body, I was very much locked in as that patient and functioned instinctively throughout my days to get the radiation and chemotherapy completed. I was assured the prognosis was good and I have faith in that statement but recovery has been challenging.

With the kind of radiation to the throat ( adenoids and a few lymph nodes in neck ) I have had some significant and uncomfortable changes to my ability to generate saliva, swallow, taste, speak, and hear. I naively thought recovery would be progressive and swift but I am discovering is that it's more nuance, non-linear, and slow. Every day I hope to have a bit more moisture in my mouth without additives or liquids and that's not happening, food for the most part is bland and certain proteins/carbs take time to break down while eating. The scarring from the tumor may have caused blockages in my ears which ENT is taking their damn sweet time to get back to me and I don't want to be pissed about that. My libido is shot, confidence fried.

I am out on disability but am not sure how well I'll function with some of the brain fog, voice fatigue, and exhaustion from many nights of poor sleep. I'm frustrated as this is burdensome and I feel like a burden at times. Many have encouraged taking it easy on myself but I also want to feel normal again and that's just not happening on my time frame. It's been a few months and my PET is 2/18, obviously there's some anxiety of discovering if the cancer was eradicated or if further treatment is needed.

[MotownPgh]

1. Recovery from treatment will take a year

It's so tough. But the only thing that helps is time. Hope the pet scan is clean. And yes the odds are good!

[purr-rat beauty]

5. My oncologist stated about a year...

She said some things may never be normal again =

I hold out hope that I am a unique case and it'll all pass over as if it never happened.

[godsentme]

2. I feel your anxiety

Sending you peace and grace as you go through this challenge. My husband is going through chemo and radiation for stage III lung cancer. I truly appreciate you expressing what your going through. Wishing you the best good news on 2/18 and that ENT gets with the program immediately.

[purr-rat beauty]

6. thank you for your caring thoughts

I hope your husband has the strength to endure his treatment and finds freedom from his cancer. He is not alone in his experience. You are not alone, please reach out for support when you need someone to hear you.

[Solly Mack]

3. I had radiation to the entire right side of my head, to include the neck.

It took time to produce a small amount of saliva. I didn't feel close to normal for about 5 years. I still can't swallow as well as before surgery and radiation (it's been over 10 years).

The inability to swallow put me into the hospital for a month, this was about 3 weeks after treatment ended, and the result was a feeding tube for a several months. My body was shutting down. It got bad.

Food and drink tasted funny for years. Enjoyment came back slowly and in stages. I still can't tolerate spicy. Things I never thought of as spicy are now too spicy for me.

It does take time, and it won't be on your time frame. Your body controls that.

Sucks, I know.

I was impatient and wanted it over and done with.

Best of luck. Hang in there. It does get better...eventually.

Hoping for clear scans!

[purr-rat beauty]

7. Yes, little spiit is a triumph is seems

What exactly did you struggle with when swallowing? Did you see S&L for swallowing exercises? I feel my swallowing is forceful at times but I can get liquids and solids if I can emulsify them enough while chewing to get down ( cheeses, breads, tough proteins, fibrous vegetables are a task ) When I awake, my throat and mouth are stone dry it takes attention. I have a humidifier but it's across the room so probably not getting much of that moisture.

Food and drink are weird, sweet stuff makes it way through, for a moment I was registering salt, but since it has mellowed. At times my food has a tint of cough drop flavor that pops up in the back of my throat and it messes with my appetite.

I hope you are doing much better than before and thanks for the words of encouragement!

[Solly Mack]

8. My throat was irritated and swollen from the radiation, and I was producing excessive mucus - thick mucus.

So thick it clung inside my throat, causing my gag reflex to go into overdrive. I couldn't swallow and what I could swallow couldn't go down.

Dry mouth, dry nose, with nasty muck clogging my throat. Sounds gross because it was gross. I disgusted myself a few times.

I had to relearn to swallow, yes. Force myself to swallow.

I stayed with soft food for a long time. Little by little adding other things back. It all depended on taste too. Some foods still taste funny to me.

I don't have meals without a cup of coffee because something hot/warm helps with swallowing.

I am doing much better, thank you.

Time is both your friend and your enemy.

Patience exists to taunt.

But a sense of humor is a lifeline.

[XanaDUer2]

4. Healing thoughts

Hope you're ok

[Sparkly]

9. Stage 3 is good if the cancer isn't high-grade!

I'm no medical expert, but it's my understanding that if it hasn't metastasized to a distant organ (and/or hasn't invaded lymph nodes), and isn't an aggressive type, once you're in remission you have a VERY good prognosis!

Yes, the surgery, chemo, and radiation are awful. They also leave you immune-compromised. Take good care of yourself, stay very well hydrated, and stay as active as you possibly can!

Wishing you all the best!

[purr-rat beauty]

10. apparently the kind I have/had of naso-cancer is the better kind, odd to say

There's 2 types of nasophayngeal - one that comes from an HPV infection ( didn't have the vax when I was a kid ), and a version that is common with those with Asian descent and is more aggressive =(

I appreciate your optimism, it did hit a few lymph nodes within the neck, PET didn't show spread beyond luckily.

I'm doing the things recommended for rehabilitation, obviously not sure if it's up to their standards or not.

thanks for checking in, I hope you are doing well