Newly Diagnosed and SCARED!

Don't be afraid to ask questions, of your Oncologist. Follow their advice. A good one will inform you of the effects, and how best to deal with them.

The last thing I would have to say, is do everything you can to try to keep your spirits up. It really does help!

MG

There are many people who work all the way through their chemo and radiation....  I'm sure some will reply to this thread if you give them a little time.  I didn't have chemo with my radiation so I can't speak to it personally, but I really don't recall many folks on here say that they got "sick" from the chemo.  Mostly it seems to be the very acute effects on your throat.  Many people end up getting feeding tubes to help them through, many didn't.  Some will advise you to avoid it as long as possible.  What is clear is that the treatment does have long term effects on the throat and it's sort of a use it or lose it deal.  Eating and drinking as much as you can through treatment and after are important to keeping those muscles strong.

The good news is that P16 head and neck cancer is very treatable with really good outcomes (though you'll certainly encounter some more unfortunate folks on this board who have had recurrences).  You're no where near the end of your road...but it's going to be bumpy for a bit.

Good luck and we'll be looking forward to hearing how well you are doing throughout your treatment!  ;-)

The PET scan will give more information and they use that to calibrate the radiation fields if and when you need radiation. The new trend has been to attack P16 with only one modality so you might escape chemo/and or radiation. Surgery is always best where applicable and that is another modality. I had all three and was diagnosed at 51 and just turned 61 this week! You do what you have to do when the time comes. Your chances are really good!

You will be developing a relationship with three doctors, an ENT, a chemo doctor and a radiation doctor at the very least. Ask the one you get along with the best to write you a script for anti-anxiety medication, it's not a big deal, no im not addicted today and it makes a world of difference with the thought rumination that drives you nuts and keeps you up at night. It's like flicking an off switch and lets you deal with current life! Anything that comes up someone on this Board has dealt with it and can offer some insight.

Start a relationship with whoever deals with this at your employer, Human resources, Personnel, Medical, the Union whoever. Bring them in the loop and know your rights upfront and use every last one of them if needed. Hopefully that won't be your biggest concern but you need to know how much time you can be off, what part of it is paid or not, and just General medical policy. 

Some work, some don't, some have to and some should not. I remember one fellow on here who was a bricklayer and self employed and worked, my hats off to him! I could not and had a liberal medical policy. It really depends on what you do and who you are. I had a job where split second decisions were required, if you do, then you can't work, you can't risk other peoples lives but you can risk just your own if necessary. Some work until they just can't anymore and that's ok, you will know when you can't. If possible financially then rest will help heal quicker.

Lastly ask everyone for help. When folks offer anything take them up on it. Grocery shopping, rides to chemo, babysitting, cooking, any damn thing. 

Start gathering information and writing everything down, get a diagnosis and get staged. With that there is literary a flow chart for how to proceed somewhere in the national cancer guidelines, your doctors will probably stay close to that protocol depending on your diagnosis, staging, and other variables like age and general heath. I found cancer treatment to be much more professional and efficient than most other areas of medicine. Just one foot in front of the other, moving forward toward finishing treatment one day at a time. All the best!

Logan51 said:

Kempta

Ditto what ratface said. Still too early to know if you'll suffer a lot or a little. Keep in mind that all suffering can be helped w/meds- you just need to let your Dr.s know. We all survive the first round with C, and so will you. You're just living the worst of times now that we all have been through- between diagnosis and tx. And you still haven't had your PET. Might not be that big of a deal. I was 55 when tx started. Turn 65 tomorrow. You got many years of life ahead of you- Believe it.

Have a wonderful 65th birthday. I spent my 65th in my chemo doctors office deciding my treatment plan. Hopefully, you will enjoy yours more than I did!!!

Welcome to the club no one really wants to be in. As you will see over time, there are a lot of cancer warriors on this site. I learned a lot from all my fellow warriors. I was lucky to have found this site 4 weeks before my treatment began. It really helped me. One of the things that scared me the most before starting treatment was the fact I was going to have my head positioned on the radiation table with a mask holding me down. I am really really claustophobic and was panicing just thinking about it. I even practiced at home before treatment by putting my head under my desk and playing the sound of the radiation machine on the computer. Pretty weird looking back on it. One thing I ended up doing was taking the sedative Ativan. I took it one hour before each radiation treatment. I ended up not having any issues at all. I made it thru all 35 radiation treatments and never once paniced or had to stop. If I can do it, anyone can. Read as much on this site as you can, knowledge ispower. I was treated for HPV16 Tonsil cancer with 3 lymph nodes. 35 Rads and 3 high dose Chemo Cisplatin treatments. I was one of the lucky ones and did very well thru treatment. I was 65 years old during tretment and in pretty good shape. Eating will most likely be a problem for you. Have fun right now eating and put on some extra weight because you will definitely lose some. Eating can be tough during treatment. For me the worst was losing my taste and saliva. I'm now 14 months out and have most of my taste and saliva back. Everything takes time after finishing treatment. Currently, I am cancer free (NED) NO EVIDENCE of DISEASE. Good luck with your treatment. You can do this. God bless.

Rick

You will go crazy if you do more than basic research on the Internet. I recall the story I got from my Oncologist was SO much more positive!

She is also correct about eating. It's hard to explain to someone who hasn't experienced some loss of taste - but EAT EAT EAT. This is one time in your life when you should savor every bite, and have no worries if you gain a couple pounds. It's actually GOOD for you - at this point.

And finally, she nailed the landing too - you WILL surprise yourself with how strong you can be .... and you will be amazed at the amount of support your friends and family offer up. LET THEM HELP YOU!!

I'm sending good thoughts and another prayer!...

MG

Kempta said:

Rick-

Rick-

Your cancer and your fears mirror mine.  Did you worry about your other tonsil and if they'd target that one too.  Seeing as the HPV is already there, I'd love to get this the 1st time around. I too, looked up the "mask" and freaked myself out.  I did get ativan for the PET and only took half so I could function the rest of the day.  It worked very well. 

 

Love to stay close to your progress and hope you can be there to offer advice as I am just beginning HELL. 

 

Tessa

My tonsil / lymph node cancer was all on the right side. The primary was the right tonsil with a spread to 3 lymph nodes in the upper part of my neck, The lymph nodes affected were in level 1 of the neck. Level 1 is the upper part of the neck. The higher up the better. The nodes were never at the point where I could feel or see them. The tonsil however filled the whole right side of my throat all the way out to the Uvula. I had the maximum amount of radiation to the right side - 70 greys. In addition, they determined that they would do 54 greys to the left side as a precautionary measure even though the pet scan showed no visible cancer on that side. By the fifth week you could no longer see the tonsil tumor. It completely had melted away. My throat looks completely normal now. Just so you know, I also had to take Ativan for all my pet / mri scans. Had no issues with that either. Hurt my neck several years ago and when I went in for an mri I freaked out and could not do it. Ended up taking ativan a couple days later and was able to do it. I think that experience is what freaked me out about the mask deal. If you only took a half pill for your pet scan and was ok you are not going to have any problem with the radiation treatment. I did 3 things during my radiation treatments - listened to pretty loud music, kept track of the minutes by counting and had the staff tell me how much time I had left every 5 minutes. A couple times they forgot to update me every 5 minutes and it made it more difficult for me. Treatments average 15 - 20 minutes. Depends if they are doing a scan with the treatment. Do whatever works best for you. You mentioned you only took half an Ativan and was fine. I'm so claustrophobic I had to take 3 ativan 1 hour before my treatment. Had to have someone drive me to all my treatments. Your gonna do just fine. I concur, try to stay off the internet and try to do most of your research on this site. You will learn much more here. God bless and email me any time for any of your concerns or questions.

Rick