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jerryskids

I have Cancer :/

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Sorry to hear jerry!  Prayers sent!

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6 minutes ago, jerryskids said:

Trach tube/tracheostomy and loss of vocal cords are possibilities.  I suspect a temp tube minimum may be needed for the surgery and immediate recovery, but long term is possible as well.  For vocal cords, the surgeon saw an odd lump just below my cords on the other side, and said that if that was a tumor I'd likely lose the cords.  Ends up it isn't cancer, so that's good.  He says you can talk almost as well without the actual cords, whatever that means.  Regardless, I'm cautiously optimistic on both counts until I hear otherwise.

Tobacco is the most likely single culprit in typical cases.  I used to swallow quite a bit as well (didn't put much in but still swallowed at times).  Like I said that was 5+ years ago, but it wouldn't surprise me if this has been percolating since before I quit.  Alcohol is also a contributor and I've been drinking until the past few weeks.  

Anyone who chews knows it is hard as fock to quit.  My advice is to find a way that works for you; never quit quitting!  :cheers:

My mother quit smoking after 40 years. Many of those years 3 packs a day. Hell, she had 8 kids to raise, I don't blame her honestly. No one else in my family smokes to.this day. Ironically, she had no smoking affects, but my dad had lung cancer. They cut it out of his lung and he was fine.

But crap, my mom said once that after having quit 15 years earlier, she still had cravings to smoke.

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5 minutes ago, Strike said:

My Mom and Aunt both passed from lung cancer.  Both had been heavy smokers in their younger years but quit for at least 20 years before they got the cancer.  Cancer sucks.  Good luck man.  I'm rooting for you.

Thanks.  Over the weekend I told my wife that a part in my mind wondered if a day of reckoning would come.  Well, here we are.  Once I beat this, I presume I'll be on a regular scan/checkup schedule.  The PET scan checks the entire torso as well, so colon (my dad passed of colon cancer), gall bladder (mom had it but surgery/chemo worked), liver and kidneys (strained by alcohol) all look good.  So in an odd way, I'll be on a path to make sure nothing else crops up, and if it does, handle it early.  :cheers:

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Man. I always thought it would be the AIDS that would end up getting you. Also T's & P's.

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1 hour ago, jerryskids said:

 

I used to swallow quite a bit as well (didn't put much in but still swallowed at times). 

Uh-oh.  Your wife might want to get screened as she's definitely swallowed quite a bit of GC jizz over the years. 

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4 hours ago, jerryskids said:

Trach tube/tracheostomy and loss of vocal cords are possibilities.  I suspect a temp tube minimum may be needed for the surgery and immediate recovery, but long term is possible as well.  For vocal cords, the surgeon saw an odd lump just below my cords on the other side, and said that if that was a tumor I'd likely lose the cords.  Ends up it isn't cancer, so that's good.  He says you can talk almost as well without the actual cords, whatever that means.  Regardless, I'm cautiously optimistic on both counts until I hear otherwise.

Tobacco is the most likely single culprit in typical cases.  I used to swallow quite a bit as well (didn't put much in but still swallowed at times).  Like I said that was 5+ years ago, but it wouldn't surprise me if this has been percolating since before I quit.  Alcohol is also a contributor and I've been drinking until the past few weeks.  

Anyone who chews knows it is hard as fock to quit.  My advice is to find a way that works for you; never quit quitting!  :cheers:

developing mouth/throat cancer was the main reason why I quit. I would be so pissed at myself if I got cancer because I couldn't quit. I did start back up again for a bit where I switched to the pure nicotine pouches which have no tobacco. Those are pretty awesome. I did quit those too just to be safe.

Best of luck man. That is pretty scary stuff you are going to have to deal with. It's also not going to be easy on you. Hit me up in PM if you ever need to vent or whatnot. It's also a shame that you seem to do mostly the right things as far as exercise goes, but you still get bit by something like this. :cheers:

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Is this the poosay eating cancer?   If so,  well done.

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5 hours ago, jerryskids said:

Thanks.  Over the weekend I told my wife that a part in my mind wondered if a day of reckoning would come.  Well, here we are.  Once I beat this, I presume I'll be on a regular scan/checkup schedule.  The PET scan checks the entire torso as well, so colon (my dad passed of colon cancer), gall bladder (mom had it but surgery/chemo worked), liver and kidneys (strained by alcohol) all look good.  So in an odd way, I'll be on a path to make sure nothing else crops up, and if it does, handle it early.  :cheers:

Love the glass half full attitude, its just as important as probably anything else.  :thumbsup:

 

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Scary man, for a bad situation it could be a lot worse though. Just keep us updated. Not like in the fake, Artista, “I’ve been on chemo for 4 years straight even though it only takes a couple months way, I mean the real way. You got this! 

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Buckle up for a real rough go if you end up trached for any length Jerry. PM me with any questions.  I'll make sure you know what to expect and how it should be cared for. 

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On 8/16/2020 at 9:25 PM, Patriotsfatboy1 said:

Wow, this is like a punch in the gut. I have never met you, but feel that you are a friend.  I am at a loss for words and that does not happen very often. Fock cancer and you will beat this.

Please PM if there is anything that I can do to help you through this.

Such a good post, I didn't know what to say either, it was a gut punch reading the original post.  I know this is a a focking message bored but some of you freaks I've known longer than my own wife.  

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I remember reading that nasopharyngeal cancer is one of the fastest growing cancers especially in men. And they tied it to the changing sexual Norm of going down on women. Used to be back in the day, that simply wasn't done especially in some of the more Macho ethnic cultures.

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58 minutes ago, wiffleball said:

I remember reading that nasopharyngeal cancer is one of the fastest growing cancers especially in men. And they tied it to the changing sexual Norm of going down on women. Used to be back in the day, that simply wasn't done especially in some of the more Macho ethnic cultures.

Hmm... @DonS mentioned this and his description of his cancer was much different.  But...

Quote

The risk for men is potentially serious. Although many of us associate HPV with cervical cancer, the virus is most closely linked with oral cancer—what's known as oropharyngeal squamous cell carcinoma (OPSCC). Previous research suggests that rates of HPV-related oral cancer will surpass cervical cancer by 2020. The National Cancer Institute estimates that roughly 70 percent of oropharyngeal stem from HPV type 16 infection, which is a high-risk strain.

That's what I have.  Hmm...

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36 minutes ago, jerryskids said:

Hmm... @DonS mentioned this and his description of his cancer was much different.  But...

That's what I have.  Hmm...

So you're officially in the HPV-16 poosay eatin' cancer club?  Welcome aboard, brother!  :cheers:

 

 

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14 hours ago, jerryskids said:

 He says you can talk almost as well without the actual cords, whatever that means. 

My friend smoked his way to throat cancer and lost his vocal chords. There’s a device he holds up to his throat to talk, he sounds like a robotic Darth Vader.

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6 hours ago, Voltaire said:

My friend smoked his way to throat cancer and lost his vocal chords. There’s a device he holds up to his throat to talk, he sounds like a robotic Darth Vader.

I've seen that in PSA commercials.  I didn't get the impression that that's what it would be like, largely because the cancer is not on my larynx and is limited to one side, so I'm hoping worst case is that they take a portion of the vocal cord on that side, in which case I should still be able to speak although probably hoarsely.

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2 hours ago, jerryskids said:

I've seen that in PSA commercials.  I didn't get the impression that that's what it would be like, largely because the cancer is not on my larynx and is limited to one side, so I'm hoping worst case is that they take a portion of the vocal cord on that side, in which case I should still be able to speak although probably hoarsely.

While they could've taken out my tumor via surgery they advised against that as the margins involved would've required the surgeon to take out a chunk of my soft palate.  That would've greatly impacted my speech, so that's why he went with the all radiation/chemo route.  Same success rate without the guaranteed impact.

In my case the tumor was in my tonsil so that might've made it easier to nuke without too much collateral damage.  Perhaps the location of yours makes radiation/chemo only less of an option?   Obviously your doc knows the proper approach, just curious when they decide one way over the other.

Stay strong man. 

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Update$#@!  Lots of news.  A plan is coming together:

- Surgery is penciled in for 9/2, 2 weeks from today.  They have to do some shuffling to confirm but it seems set.

- It will be 9 hours total with 3 hours each for tumor, left lymph chain, and right lymph chain.  They have to do the right (other side) because the tumor crossed the midline, so it is more precautionary at this point.  I may actually ask about this, since I'm getting radiation regardless.

- I'll be in hospital 3-4 days to monitor, then (maybe worst part other than risk of death) I'll have a feeding tube for 3-4 weeks.  Sounds fun.  :mellow:  

Best part:  they expect a full resection, no margins, no removal of vocal cords, no permanent tracheostomy. 

:pointstosky:

After the month of healing starts radiation, 6 weeks, 5 times per week.  Radiation doc doesn't seem to think I'll be knocked out; in fact he thought I could drive to/from (about 40 minutes 1 way).  Chemo is TBD, might depend on the success of surgery.  Consult with him next Wednesday.

Still need to do a swallow video/consult, which will serve as a baseline for them getting my swallowing back to "normal."  I swallow pretty poorly now with a ginormous sphere blocking my throat so it seems the baseline will suck, but they didn't ask me.

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2 minutes ago, Gladiators said:

Thanks for the update Jerry.  Sounds promising.

Radiation 5 times per day rough though.  ;)

Oops, meant week.  😜

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9 minutes ago, jerryskids said:

Update$#@!  Lots of news.  A plan is coming together:

- Surgery is penciled in for 9/2, 2 weeks from today.  They have to do some shuffling to confirm but it seems set.

- It will be 9 hours total with 3 hours each for tumor, left lymph chain, and right lymph chain.  They have to do the right (other side) because the tumor crossed the midline, so it is more precautionary at this point.  I may actually ask about this, since I'm getting radiation regardless.

- I'll be in hospital 3-4 days to monitor, then (maybe worst part other than risk of death) I'll have a feeding tube for 3-4 weeks.  Sounds fun.  :mellow:  

Best part:  they expect a full resection, no margins, no removal of vocal cords, no permanent tracheostomy. 

:pointstosky:

After the month of healing starts radiation, 6 weeks, 5 times per day.  Radiation doc doesn't seem to think I'll be knocked out; in fact he thought I could drive to/from (about 40 minutes 1 way).  Chemo is TBD, might depend on the success of surgery.  Consult with him next Wednesday.

Still need to do a swallow video/consult, which will serve as a baseline for them getting my swallowing back to "normal."  I swallow pretty poorly now with a ginormous sphere blocking my throat so it seems the baseline will suck, but they didn't ask me.

Thanks for the update.  Good luck.

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look into oxygen therapy 

 

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On 8/16/2020 at 4:43 PM, jerryskids said:

Throat cancer; a large tumor blocking a lot of my airway.  A squamous cell carcinoma in my supraglottis, for those playing doctor at home.  Yes I've been throating hogs like @DonS.  In fact he and I have been PM'ing as I've started this journey a few weeks ago. 

TL;DR: It is operable, and I will have surgery in a week or two.  Post op treatment TBD.  Prognosis looks pretty good as of this weekend but there is a long way to go and several risks described below.

Symptoms started maybe 4 months ago in hindsight; a slight cough maybe once every day or two.  I was also training for Pat's Run and commented to my wife that I felt like I wasn't quite getting all of the oxygen I thought I should.  While I'm fit I'm not a runner so, what did I know? With Covid floating around and the symptoms just sorta hovering I figured I had it and was experiencing some of those longer term effects they mentioned.

In May or so I occasionally noticed that I'd choke a little occasionally when I was eating.  I figured I was getting old and just needed to chew my food better.  It never occurred to me that they were all related. 

Swallowing became increasingly difficult and I started coughing consistently whenever I swallowed anything, even water.  I became convinced that something was wrong with whatever isolates the food pipe (esophagus) from the air pipe (trachea).  I hoped… prayed… meditated?  that it was irritation from drinking too much.  Did I mention that I was drinking too much?  I was.  I also used to chew, a lot, but quit that 5+ years ago.  Anyway, I stopped drinking altogether around when I noticed some blood in my mucus (there wasn't much mucus so it probably had been there for a while and I didn't notice).  Finally called an ENT.

After some Covid test delays he saw me last Friday and was confident, based on my fitness, that it was just acid reflux.  He stuck a camera down my nose into the area and… oops, big ass tumor.  Covers more than 50% of the area.  Just above the vocal cords but isn't growing on them.  He thought I should look a lot worse, so I've got that going for me.

He is friends with an ENT at Mayo who is the teaching doctor in the state, maybe country, for a laser procedure that cuts it out from the inside.  He called him that evening and said "you need to see this guy ASAP."  Got a call Monday to go to Mayo for another Covid test (I'm quite Covid free it appears), saw the surgeon Tuesday, CAT scan Wed, PET Thurs, results on Mayo patient portal Fri including a summary from the PA.  Meeting rad/onc Tuesday.  Somebody mentioned recently how much better a place like Mayo is than other clinics.  All of this under one roof (well, two campuses and multiple buildings), and so far you can set an atomic clock by their keeping appointment schedule. 

Since I can breathe fine even while laying down, the surgeon wants to collect the above data and review with their cancer board this week.  Probably surgery next week is my guess.

The good news from the tests is that carcinoma is the best cancer you can get, and as hoped it hasn't spread to other parts of my body.  It did go to the lymph nodes on that side of my neck, but that is expected apparently.  Also no sign of other tumors brewing.  I was particularly skeered about it metastasizing, because it might have been growing there for years.

Post-surgery depends on if they can get it all, if they can save my vocal cords, and if they can avoid a permanent tracheostomy (breathing thru a hole in my throat).  As the doctor said, I should get back to normal, but I may have a new "normal".  I expect I'll be eating smoothies for a few weeks, and not allowed to talk much if at all in that period.

Anyway, I'm sure there is more but for now LOOKATMEEEEEEEEE!1!!!!11!!! :(

 

Geeze Jerry... sorry to hear this brother.  Pray you'll come through it shiny.. 👍

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Best of luck with this Skids.  Hope it all goes well.  

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Sorry to hear about this JK.  Sounds like there was zero f***ing around getting a plan in-place.  Hope all goes well.

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Thanks for the update.  Hope things go well.

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Thanks all.  So, let's talk Covid.  I'm not at a higher risk of getting it.  But if I were to get it, it would be bad in at least two ways.  One, I'm not sure how Mayo would handle all of these appointments let alone surgery if I had it.  In fact I'm on hold scheduling two (more) Covid tests with them prior to the surgery.  Two and more importantly, if I were to get the bad version of Covid with, say, pneumonia, I may find myself on the wrong side of being alive.  So other than hospital/clinic visits, I'm staying home.

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6 minutes ago, jerryskids said:

Thanks all.  So, let's talk Covid.  I'm not at a higher risk of getting it.  But if I were to get it, it would be bad in at least two ways.  One, I'm not sure how Mayo would handle all of these appointments let alone surgery if I had it.  In fact I'm on hold scheduling two (more) Covid tests with them prior to the surgery.  Two and more importantly, if I were to get the bad version of Covid with, say, pneumonia, I may find myself on the wrong side of being alive.  So other than hospital/clinic visits, I'm staying home.

Good call.  You should be considered an at risk candidate for Covid so yeah you should be isolating as much as possible.

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18 hours ago, jerryskids said:

 

Best part:  they expect a full resection, no margins, no removal of vocal cords, no permanent tracheostomy. 

:pointstosky:

 

Now that is GREAT news. Good for you Jerry. Just be sure that when you go into surgery that you have a note pinned to you that says, "I am not a black baby." 

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so in all seriousness. my  74 y/o step mother (36 knee)  recently  had throat cancer and had to have part of her throat removed and radiation treatment for 8 weeks. After 3 months of eating from a tube, she finally started to eat regular food. She is doing well now and is cancer free for now.  My father is 73 and is living and is also a cancer survivor, twice. My mother died at 48 from lung cancer.  🙏 for me.

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18 hours ago, jerryskids said:

Thanks all.  So, let's talk Covid.  I'm not at a higher risk of getting it.  But if I were to get it, it would be bad in at least two ways.  One, I'm not sure how Mayo would handle all of these appointments let alone surgery if I had it.  In fact I'm on hold scheduling two (more) Covid tests with them prior to the surgery.  Two and more importantly, if I were to get the bad version of Covid with, say, pneumonia, I may find myself on the wrong side of being alive.  So other than hospital/clinic visits, I'm staying home.

Yes, definitely something to navigate as you go through this process. I have a couple of friends who are still fighting cancer and we take that into account. One of my best friend's wife has cancer and we have indicated to him that he needed to change his behavior. If he caught it, then he was likely going to be out of the house for a while. He cleaned up his act and has been careful, which certainly helps his wife feel better as she goes through treatments.

Bottom line is that you need to take care of yourself and others need to respect that. 

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Hey Jerry. I haven't been on here much lately but I popped in a couple of days ago and missed this thread at first. This is a punch in the gut. Really sorry to hear about this. It sounds like you are getting top notch advice and care. I know you'll beat this! Chin up and stay away from the filipina nurses. They'll wear you out. 

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21 minutes ago, MedStudent said:

Hey Jerry. I haven't been on here much lately but I popped in a couple of days ago and missed this thread at first. This is a punch in the gut. Really sorry to hear about this. It sounds like you are getting top notch advice and care. I know you'll beat this! Chin up and stay away from the filipina nurses. They'll wear you out. 

:lol:

Good to see you Med, hope you stick around.  :cheers:

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23 hours ago, jerryskids said:

Update$#@!  Lots of news.  A plan is coming together:

- Surgery is penciled in for 9/2, 2 weeks from today.  They have to do some shuffling to confirm but it seems set.

- It will be 9 hours total with 3 hours each for tumor, left lymph chain, and right lymph chain.  They have to do the right (other side) because the tumor crossed the midline, so it is more precautionary at this point.  I may actually ask about this, since I'm getting radiation regardless.

- I'll be in hospital 3-4 days to monitor, then (maybe worst part other than risk of death) I'll have a feeding tube for 3-4 weeks.  Sounds fun.  :mellow:  

Best part:  they expect a full resection, no margins, no removal of vocal cords, no permanent tracheostomy. 

:pointstosky:

After the month of healing starts radiation, 6 weeks, 5 times per week.  Radiation doc doesn't seem to think I'll be knocked out; in fact he thought I could drive to/from (about 40 minutes 1 way).  Chemo is TBD, might depend on the success of surgery.  Consult with him next Wednesday.

Still need to do a swallow video/consult, which will serve as a baseline for them getting my swallowing back to "normal."  I swallow pretty poorly now with a ginormous sphere blocking my throat so it seems the baseline will suck, but they didn't ask me.

Good news!

If you need references on swallowing I think Sux is still around from time to time ;)

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Going to try to commit 9/2 to memory and 🙏

Glad you're getting what sounds like excellent care. Sorry you're dealing with all this, though.

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2 minutes ago, naomi said:

Going to try to commit 9/2 to memory and 🙏

Glad you're getting what sounds like excellent care. Sorry you're dealing with all this, though.

I'm sure I'll come in the night before to remind everyone.  :D  lookatmeeeee

Which reminds me, I won't know what time I have to arrive for surgery until I call in after 6PM the night before.  I presume this is normal.  :unsure:

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