General Discussion
Related: Editorials & Other Articles, Issue Forums, Alliance Forums, Region ForumsMy 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!
electric_blue68
(14,912 posts)malaise
(269,054 posts)Hope you get better
SheltieLover
(57,073 posts)Nevilledog
(51,122 posts)Been thinking about how you were doing.
CurtEastPoint
(18,650 posts)Hekate
(90,714 posts)Karadeniz
(22,537 posts)sinkingfeeling
(51,460 posts)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.
redwitch
(14,944 posts)And your amazing body which will cooperate with them!
walkingman
(7,628 posts)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!!
usonian
(9,815 posts)Demsrule86
(68,586 posts)MuseRider
(34,111 posts)It sure sounds better.
I live South of Topeka, if you are anywhere near here and need something let me know. OK?
Native
(5,942 posts)thomhartmann
(3,979 posts)it's no fun. You're in my prayers...
mountain grammy
(26,624 posts)Last edited Sat Jul 2, 2022, 11:33 AM - Edit history (1)
Nothing beats a smart doctor..
Harker
(14,024 posts)Power on!
Ferrets are Cool
(21,107 posts)kimbutgar
(21,163 posts)Sorry to hear youre sick that sucks.
wnylib
(21,487 posts)Sounds like you and your doctors can beat this. Look forward to the day when it is all behind you.
Lonestarblue
(10,011 posts)Kicking cancer is tough, but lots more people do it today thanks to our never-ending investment in research.
dixiechiken1
(2,113 posts)And healing vibes. Please keep us posted.
rurallib
(62,423 posts)Grumpy Old Guy
(3,170 posts)StarryNite
(9,446 posts)Keeping the good vibes going your way.
Nululu
(842 posts)murielm99
(30,745 posts)LoisB
(7,206 posts)iluvtennis
(19,863 posts)vibes flowing.
TeamProg
(6,143 posts)just slogging through it all and staying focused on that final goal.
We're all with you.
MLAA
(17,298 posts)deal with the tumor. Excellent!
Wild blueberry
(6,636 posts)We love you.
Solly Mack
(90,773 posts)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.
Marthe48
(16,975 posts)keep visualizing yourself healthy!
arthritisR_US
(7,288 posts)and keep up those great vibes. The universe has your back 🥰
virgdem
(2,126 posts)for successful radiation treatment and a speedy recovery. Hang in there, better days are coming.
gademocrat7
(10,659 posts)and good wishes.
colorado_ufo
(5,734 posts)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!
KS Toronado
(17,259 posts)His voice ever get back to normal?
colorado_ufo
(5,734 posts)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
(17,259 posts)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)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
KS Toronado
(17,259 posts)Ziggysmom
(3,409 posts)your way. Your experience proves that getting a second opinion is always best.
Healing Hugs
Ms. Toad
(34,075 posts)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
(17,259 posts)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!
kairos12
(12,862 posts)spanone
(135,844 posts)Trueblue Texan
(2,430 posts)...that gets here before you know it! I got mine last month! Best wishes to you!
Efilroft Sul
(3,579 posts)USALiberal
(10,877 posts)liberal_mama
(1,495 posts)Your radiation doctor sounds like an amazing doctor!
Demovictory9
(32,457 posts)lancenichols
(1 post)Can you please update the outcome? thank you
llashram
(6,265 posts)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