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KS Toronado

(17,156 posts)
Fri Jul 1, 2022, 04:49 PM Jul 2022

My cancer update

Tuesday was first meeting with chemo doctor, he said we'd start out with surgery to install 2 stents,
one into the suction side of my heart (to inject chemo) and the other a feeding tube into my stomach.
Left that meeting pretty unhappy as reality was starting to set in what my future looked like.

Thursday was first meeting with the radiation doctor and he had looked over my PET scan that morning
and noticed that the lymph node the chemo doctor said was cancerous was right next to a tooth that had
a low grade infection. This doctor had a meeting with the chemo doctor and got him to agree not to start
chemo.

My vocal cord tumor is in it's early stages and very treatable with radiation, 6 weeks of 5 times a week,
then we'll see what's going on with the lymph node. He gave me a prescription to treat the tooth for it's
small infection. If after radiation treatment the lymph node does show cancer, he said minor surgery to
remove it was the best option, so small a problem chemo was overkill.

Next Thursday I go in and they'll make a form fitting mask for my head which they secure to the table
so I'm not moving around plus then they'll give me a schedule to start treatment.

Believe I got lucky having this radiation doctor, 25 years experience with head & neck cancer only.
Plus he believes the lymph node is OK, it's just fighting the tooth. Big weight off my shoulders.

THANKS FOR ALL THE GOOD VIBES EVERYONE, THEY'RE WORKING!

55 replies = new reply since forum marked as read
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My cancer update (Original Post) KS Toronado Jul 2022 OP
All the best, and for the best outcomes like being cancer free! electric_blue68 Jul 2022 #1
All the best malaise Jul 2022 #2
More healing vibes on the way! 💓💓💓 SheltieLover Jul 2022 #3
Thank you for keeping us updated. Nevilledog Jul 2022 #4
Please remember there are a lot of folks here (and elsewhere) who have your back. CurtEastPoint Jul 2022 #5
All good wishes, KS Tornado Hekate Jul 2022 #6
You are going to come out on the other side of all this, I know it !!!!! Karadeniz Jul 2022 #7
I hope you're not claustrophobic. I hated the mask. There was one session where they sinkingfeeling Jul 2022 #8
Here's to amazing doctors! redwitch Jul 2022 #9
Good luck - I had NHL (DLBCL) in my right sinus about three years ago walkingman Jul 2022 #10
So wishing you the best. usonian Jul 2022 #11
Sending prayers and good wishes...everything that I can think of for a speedy recovery...cancer free Demsrule86 Jul 2022 #12
Good luck! MuseRider Jul 2022 #13
Sounds like you're in great hands! Native Jul 2022 #14
Ouch - Louise and I have both had cancer... thomhartmann Jul 2022 #15
Wow.. great news. Hoping for the best.. mountain grammy Jul 2022 #16
I'd like to get my vibes working for you, too, KS T! Harker Jul 2022 #17
Good luck Toronado Ferrets are Cool Jul 2022 #18
Keep positive thoughts and heal quickly kimbutgar Jul 2022 #19
More healing vibes headed your way. wnylib Jul 2022 #20
Good luck and good healing vibes on the way. Lonestarblue Jul 2022 #21
Sending you light and love... dixiechiken1 Jul 2022 #22
best wishes and hopes rurallib Jul 2022 #23
Best wishes! Grumpy Old Guy Jul 2022 #24
Thank you for the update. StarryNite Jul 2022 #25
Best wishes for a speedy recovery. Nululu Jul 2022 #26
Best wishes and prayers. murielm99 Jul 2022 #27
That all sounds like good news. More good vibes on the way! LoisB Jul 2022 #28
Much luck to you with your treatment. The brain is very powerful, keep those positive iluvtennis Jul 2022 #29
Oh man, I can't imagine going through what you are. Please continue to do your best as you are by TeamProg Jul 2022 #30
Sending another round of good vibes! Sounds like you are well on your way with a solid plan to MLAA Jul 2022 #31
Loads of healing energy coming your way Wild blueberry Jul 2022 #32
Keeping you in my thoughts. Solly Mack Jul 2022 #33
Sending healing thoughts Marthe48 Jul 2022 #34
Oh my god this is great news, thanks for sharing luv arthritisR_US Jul 2022 #35
Sending you healing thoughts and vibes.. virgdem Jul 2022 #36
Sending you hugs of support gademocrat7 Jul 2022 #37
White light and warm vibes to you, and prayers! colorado_ufo Jul 2022 #38
Stage IV vocal cord cancer? KS Toronado Jul 2022 #40
In his case that's not possible. colorado_ufo Jul 2022 #42
Glad he's doing OK KS Toronado Jul 2022 #46
Dear KS ggma Jul 2022 #39
Thank you! KS Toronado Jul 2022 #47
I'm not sure what to say, except I will have you in my thoughts and send healing vibes Ziggysmom Jul 2022 #41
Great news - AND - a good reminder ALWAYS get a second opinion Ms. Toad Jul 2022 #43
I really got lucky having this radiation oncologist assigned my case KS Toronado Jul 2022 #44
Peace and strength to you. kairos12 Jul 2022 #45
Good Vibes....👍🏼 spanone Jul 2022 #48
Wishing you a five-year cancer free diagnosis... Trueblue Texan Jul 2022 #49
May you and your medical team kick all these challenges in their ass. Efilroft Sul Jul 2022 #50
Sending good luck from Lenexa!! USALiberal Jul 2022 #51
I'm so happy to hear this wonderful news that you were able to avoid over aggressive treatment liberal_mama Jul 2022 #52
sending more good vibes Demovictory9 Jul 2022 #53
cancer lancenichols Oct 2022 #54
stay positive llashram Oct 2022 #55

sinkingfeeling

(51,438 posts)
8. I hope you're not claustrophobic. I hated the mask. There was one session where they
Fri Jul 1, 2022, 05:18 PM
Jul 2022

couldn't get things lined up correctly and I was on the table for like an hour. I was beginning to have a panic attack.

Radiation on oral cavities is a bitch. I had the surgery, first, to remove both tonsils and like 8 lymph notes back in 2009. I had gone under for a swollen lymph node removal and they discovered Stage IV cancer on my tonsils. I did 33 radiation treatments at 3 per week, but declined the chemo. Refused to have a feeding tube.

Best of luck to you. Keep us informed.

walkingman

(7,583 posts)
10. Good luck - I had NHL (DLBCL) in my right sinus about three years ago
Fri Jul 1, 2022, 05:20 PM
Jul 2022

and had Chemo (RCHOP) and 35 radiation treatments (IGRT). They made a mask for me also.

I still have the mask as a souvenir. It's actually pretty cool. You lay down, they snap the mask on you (it fits so tightly that you cannot move your head at all) and proceed to get the treatment. You will get used to the sequence and will be able to tell when it is about to be done.

You don't feel a thing but after several you might experience some gum issues and dry mouth from the Chemo. Also, it is important that you be aware that your immune system will be greatly diminished from the Chemo so be careful and don't take any chances.

For the dry mouth I used Biotene Dry Mouth Rinse and for gum issues my wife made a mixture of 1tsp baking soda, 1 tsp salt, mixed in a quart of water. The Radiation might make your face feel kind of blistered and for that I used "Aquaphor healing ointment" which worked good.

Good luck.....You will be fine it is not as bad as you might imagine. It will pass quicker than you realize. Keep us informed on your progress, you've got this!!

Peace and Love!!

MuseRider

(34,095 posts)
13. Good luck!
Fri Jul 1, 2022, 05:40 PM
Jul 2022

It sure sounds better.

I live South of Topeka, if you are anywhere near here and need something let me know. OK?

wnylib

(21,346 posts)
20. More healing vibes headed your way.
Fri Jul 1, 2022, 06:43 PM
Jul 2022

Sounds like you and your doctors can beat this. Look forward to the day when it is all behind you.

Lonestarblue

(9,958 posts)
21. Good luck and good healing vibes on the way.
Fri Jul 1, 2022, 06:43 PM
Jul 2022

Kicking cancer is tough, but lots more people do it today thanks to our never-ending investment in research.

TeamProg

(6,046 posts)
30. Oh man, I can't imagine going through what you are. Please continue to do your best as you are by
Fri Jul 1, 2022, 07:35 PM
Jul 2022

just slogging through it all and staying focused on that final goal.

We're all with you.




MLAA

(17,252 posts)
31. Sending another round of good vibes! Sounds like you are well on your way with a solid plan to
Fri Jul 1, 2022, 07:36 PM
Jul 2022

deal with the tumor. Excellent!

Solly Mack

(90,758 posts)
33. Keeping you in my thoughts.
Fri Jul 1, 2022, 07:38 PM
Jul 2022

After all was said and done, I took my face mask home after my last radiation treatment and eventually had it painted to look like a day of the dead mask, which I then put on the wall.

arthritisR_US

(7,283 posts)
35. Oh my god this is great news, thanks for sharing luv
Fri Jul 1, 2022, 07:40 PM
Jul 2022

and keep up those great vibes. The universe has your back 🥰

virgdem

(2,124 posts)
36. Sending you healing thoughts and vibes..
Fri Jul 1, 2022, 07:54 PM
Jul 2022

for successful radiation treatment and a speedy recovery. Hang in there, better days are coming.

colorado_ufo

(5,730 posts)
38. White light and warm vibes to you, and prayers!
Sat Jul 2, 2022, 11:35 AM
Jul 2022

My son went through all this. He is Stage IV, but after 5 years still doing all right.

Just live one day at a time!

colorado_ufo

(5,730 posts)
42. In his case that's not possible.
Sat Jul 2, 2022, 01:12 PM
Jul 2022

When his extremely rare medullary thyroid cancer was discovered, it had already spread to dozens of lymph nodes, and tumors had wrapped around his vocal cords and major blood vessels.

Three H&N surgeons and another on video screen worked for hours, and he emerged with 42 staples in his neck and four drains - one rubbing against a major nerve that would send shock waves down his body. They were able to save one vocal cord, for which we are eternally grateful. His voice is very different but not unpleasant, and speaking tires him, but he never complains and is able to do his job and talk on the phone, etc. His ability to speak as well as he does baffles the surgeons!

There are some treatments that can help the vocal cords. Heal up well, and have your doctors check into those.

I think you will do fine.

KS Toronado

(17,156 posts)
46. Glad he's doing OK
Sat Jul 2, 2022, 02:46 PM
Jul 2022

My next meeting with him or his nurse I'll have to ask them what will happen to my voice in the long
run as I've forgotten to ask. Only thing they said about my voice was best to keep my big mouth
shut during treatment. They did say that in a professional way.

ggma

(708 posts)
39. Dear KS
Sat Jul 2, 2022, 11:48 AM
Jul 2022

You were one of the first DU regulars to welcome me, and I felt exactly that, so I am sending you love and mama-level hugs (because no one hugs you like a mom).

gg

Ziggysmom

(3,399 posts)
41. I'm not sure what to say, except I will have you in my thoughts and send healing vibes
Sat Jul 2, 2022, 01:06 PM
Jul 2022

your way. Your experience proves that getting a second opinion is always best.

Healing Hugs

Ms. Toad

(34,000 posts)
43. Great news - AND - a good reminder ALWAYS get a second opinion
Sat Jul 2, 2022, 01:12 PM
Jul 2022

before engaging in treatment which has signficant risks of its own! Preferably with a high volume center or (as you did) with someone who specializes in the condition. Doctors frequently see through the lens of their own practice - and the lens for medical oncologists is chemo. Some doctors simply don't have enough experience. And a few more are afraid if they give you any information which (in their eyes) gives you an out to the treatment they believe is best, you will make the wrong decision - so they withhold complete infomation.

I was unfortunate enough to be diagnosed with sarcoma in the peak of COVID (before vaccines were available). It's a rare cancer (1% of all cancers, with 50-100 sub-types within that 1%). , so no one has enough experience. Mine was caught earlier than 90% of sarcomas - so the number of people who have my sub-type, caught as early as mine was caught is vanishingly small. There aren't any good studies about how to treat it - and my best bet would have been a second opinion at a high volume center - in Texas. I'm in Ohio - and we were in the middle of the biggest COVID peak before omicron.

My radiologist (looking through his radiologist lens) suggested radiation. They took my case to the tumor board - and my radiologist reported out that the tumor board unanimously recommended radiation. Absent a true second opinion, I decided to ask for an internal second opinion with the doctor my pathologist had suggested. From that doctor I learned that the tumor board was not unanimous (the radiologist apparently didn't want to give me any information that might give me an out from radiation).

In my case, radiation would have come with a significant cost - the loss of muscle near the tumor - which would have meant a permanent loss of function in my dominant hand/arm. Because it is so rare, and caught earlier than 90% of reported cases, there is no clear evidence of a benefit from post-surgery radiation. Radiation (post-surgery) is intended to reduce the chance of local (not metastatic) recurrence - and since the tumor was right on the surface we would immediatley notice any recurrence. So it made sense to delay radiation and treat any recurrence more aggressively.

I just had my 1.5 year check-up. No local recurrence, and no metastasis to my lungs. I'm 6 months away from being able to shift to surveilance every six months. But so far - it looks as if I have saved full function of my dominant arm by getting a second opinion.

I'm glad you have a good radiation oncologist! I hope the changed treatment plan serves you as well as mine has me!

KS Toronado

(17,156 posts)
44. I really got lucky having this radiation oncologist assigned my case
Sat Jul 2, 2022, 02:29 PM
Jul 2022

He's from a small town in Montana, after medical school spent 5 years at the largest cancer center in
Utah when he and his wife decided raising their kids in a large metropolitan area was not the best place
for them to grow up. So they looked around for small towns with a cancer center and decided to move
here, he's been here 20+ years now.

Any doctor who will butt heads with his fellow doctors with "This guy doesn't need chemo, don't put him
through the pain and expense of chemo" (his actual quotes) has my vote and will recommend him to
anyone who has cancer. Glad you bet yours!

Trueblue Texan

(2,420 posts)
49. Wishing you a five-year cancer free diagnosis...
Sat Jul 2, 2022, 04:06 PM
Jul 2022

...that gets here before you know it! I got mine last month! Best wishes to you!

liberal_mama

(1,495 posts)
52. I'm so happy to hear this wonderful news that you were able to avoid over aggressive treatment
Sat Jul 2, 2022, 09:36 PM
Jul 2022

Your radiation doctor sounds like an amazing doctor!

llashram

(6,265 posts)
55. stay positive
Fri Oct 28, 2022, 10:46 AM
Oct 2022

try not to let the fear get you down...difficult sometimes I know...it did plague me sometimes as I prepared for the worst. But here I am 4 years from the chemo-radiation. I had to carry a chemo pump around 5 days a week. Got the weekends off like you. But 5 years from diagnosis, treatments for months and finally remission. Of course, I only have 1/3 of a bladder left. But a small price to pay. Fight laugh when you can and try and stay positive in the face of an enemy. I LAUGHED AND JOKED WITH THE MEDICAL PERSONNEL DURING TREATMENT. And that buoyed my emotions to keep fighting. I will keep sending good vibes in your direction... just find humour and feed off it if that makes any sense. Stay peaceful if you can

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