Surgeries down, radiation starting...

Husker Fan
Husker Fan Member Posts: 65
in Head and Neck Cancer #1
Hey everyone,

Thank you for all the great information you all give out to help others. The information is so helpful for those of us just going through this detour in life.

6 weeks ago I had the TORS surgery on my tonsil, back of tongue, side of tongue and all of the clear margins. Everything came back good, except that darn "nerve invasion".

4 weeks ago they did the neck dissection, everyone at work thinks I need to come up with a story about protecting a little ole lady from the bad gang, and I got cut up some! LOL The incision is a little, okay a lot longer than I thought before the surgery, but life is good. Just stretching out those neck and shoulder muscles.

I do have to say that the TORS surgery is an incredible surgery compared to what the surgeons use to do, but it is still very painful. Wow, 16 pounds lost in 2 weeks, fortunately things have improved enough to let me gain back 11 of them.

Next Wednesday I start 30 radiation treatments over the next 6 weeks. I am not looking forward to them at all, but information you all give is so helpful and makes it easier to understand what is about to happen. Thanks!

I have cut and paste all of your helpful suggestions for diet, saliva supplements, skin lotion and everything else that the radiation will do into a single document so I can find it as soon as I need the help, thank you everyone, you all are very helpful.

Keep up the great support!
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Comments

  • Pam M
    Pam M Member Posts: 2,196
    #2
    Keep Up the Good Work
    Funny - not long after my dissection, I was amazed by the huge, horrifying scars. Now - nine months out, I find myself saying "you know - the scars aren't so bad".

    Glad you're forearmed with info - this site made a huge difference for me (I also found the site before chemo rads started). Do well, and keep us updated.
  • Jimbo55
    Jimbo55 Member Posts: 590 Member
    #3
    Husker Fan
    Glad to hear things have gone pretty well for you so far. Hope it continues thru the rads. Stay strong. Cheers.

    Jimbo
  • Hondo
    Hondo Member Posts: 6,636 Member
    #4
    Husker
    You sound like you are doing great, keep up the good work and keep yourself focus, before you know it the Radiation and Chemo treatment will all be a thing of the passed.

    Hondo
  • KTeacher
    KTeacher Member Posts: 1,103 Member
    #5
    Radiation
    Glad that the surgery is over. I also had a neck dissection in July. I'm afraid when I go back to teaching that I will have children say that their dad's have the same kind of scar that I have (I teach in a rough area!). Check Sweet's Superthread, she has put together information for just about anything we would need during treatment. Good luck and prayers.

    This is a wonderful site for support and information. I wish I had known about it last summer (2010) before treatment but it has been a good resource during this current treatment.
  • Marty36
    Marty36 Member Posts: 84
    #6
    KTeacher said:

    Radiation
    Glad that the surgery is over. I also had a neck dissection in July. I'm afraid when I go back to teaching that I will have children say that their dad's have the same kind of scar that I have (I teach in a rough area!). Check Sweet's Superthread, she has put together information for just about anything we would need during treatment. Good luck and prayers.

    This is a wonderful site for support and information. I wish I had known about it last summer (2010) before treatment but it has been a good resource during this current treatment.

    I was initially very
    I was initially very self-conscious about the scar, then realized I noticed it more than other people. If I wear a collared shirt, no one really notices it. It looked worse during radiation, but now is clearing up again.

    I also had the TORS on my tongue and think it's amazing. Talked in recovery and ate/swallowed within 24 hours. It really minimizes the "damage" and heals quickly. I was lucky to have been referred to an ENT practice where someone was doing and trained in TORS (in fact, he returned from a workshop at UPenn, where it was invented) right before my surgery. My doctors at Georgetown acknowledged that it wouldn't have been possible there since they didn't have the technology.
  • hawk711
    hawk711 Member Posts: 566
    #7
    Marty36 said:

    I was initially very
    I was initially very self-conscious about the scar, then realized I noticed it more than other people. If I wear a collared shirt, no one really notices it. It looked worse during radiation, but now is clearing up again.

    I also had the TORS on my tongue and think it's amazing. Talked in recovery and ate/swallowed within 24 hours. It really minimizes the "damage" and heals quickly. I was lucky to have been referred to an ENT practice where someone was doing and trained in TORS (in fact, he returned from a workshop at UPenn, where it was invented) right before my surgery. My doctors at Georgetown acknowledged that it wouldn't have been possible there since they didn't have the technology.

    Hey Husker
    Howdy, I never had surgery but wanted to say hello and welcome. I saw the Husker Fan moniker and knew I had to drop a line. I'm Hawk711 for my support of the Iowa Hawkeyes. Welcome to the Big Ten.
    Good luck and keep us posted
    Steve
  • jim and i
    jim and i Member Posts: 1,788 Member
    #8
    Happy to hear you have made
    Happy to hear you have made it through the surgery. Praying for a coast along for the rest of your treatment.

    Debbie
  • Husker Fan
    Husker Fan Member Posts: 65
    #9
    hawk711 said:

    Hey Husker
    Howdy, I never had surgery but wanted to say hello and welcome. I saw the Husker Fan moniker and knew I had to drop a line. I'm Hawk711 for my support of the Iowa Hawkeyes. Welcome to the Big Ten.
    Good luck and keep us posted
    Steve

    Go Hawkeyes, until....
    GO Hawkeyes, until November 25th!!!

    Thanks Steve, I was born in Iowa, so the Hawks are my 2nd favorite team!
  • Husker Fan
    Husker Fan Member Posts: 65
    #10
    Thank you
    Thank you everyone for all the support and great information to get through this!

    David
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #11
    Ground Hog's Days
    Radiation is like the movie Ground Hog's Day....

    You do the same thing every day, after day, after day, after.....

    You've probably read up on all of the side effects I'm sure.

    Some things to make it a little more tolerable for me;

    Wear comfy clothes..I just wore baggie shorts, and a tank top, or soft t-shirt...usually just slip on shoes.

    They'd have me take the shirt off, shoes and my neck chain, glasses... They had the room pretty cold, but would offer a warm throw blanket or sheets.

    I also brought in a CD and left it there for each session. This was huge for me...I knew by each song being 3 - 5 minutes about when my treatment would be finished, (usually 3 - 4 songs)...

    You will quickly learn every click, twirl, groan and rotation of the machine. You'll figure out exactly when the session just ended from the sound and location of the machine.

    For me, I usually felt nothing during the session. On days they would shoot an X-Ray (usually Mondays which took an additional five minutes maybe), I would smell something similar to Ozone...

    Later after 3 - 4 hours is when I'd start feeling my throat drying out.

    You can do it, it's the roughest part, or was for me (but I didn't have the dissection) but doable...

    Best,
    John
  • osmotar
    osmotar Member Posts: 1,006
    #12
    Radiation
    I hope you continue to post during your radiation sessions, as that will be my next step in this journey.

    Blessings & Light

    Linda
  • Husker Fan
    Husker Fan Member Posts: 65
    #13
    Skiffin16 said:

    Ground Hog's Days
    Radiation is like the movie Ground Hog's Day....

    You do the same thing every day, after day, after day, after.....

    You've probably read up on all of the side effects I'm sure.

    Some things to make it a little more tolerable for me;

    Wear comfy clothes..I just wore baggie shorts, and a tank top, or soft t-shirt...usually just slip on shoes.

    They'd have me take the shirt off, shoes and my neck chain, glasses... They had the room pretty cold, but would offer a warm throw blanket or sheets.

    I also brought in a CD and left it there for each session. This was huge for me...I knew by each song being 3 - 5 minutes about when my treatment would be finished, (usually 3 - 4 songs)...

    You will quickly learn every click, twirl, groan and rotation of the machine. You'll figure out exactly when the session just ended from the sound and location of the machine.

    For me, I usually felt nothing during the session. On days they would shoot an X-Ray (usually Mondays which took an additional five minutes maybe), I would smell something similar to Ozone...

    Later after 3 - 4 hours is when I'd start feeling my throat drying out.

    You can do it, it's the roughest part, or was for me (but I didn't have the dissection) but doable...

    Best,
    John

    Ground Hog's Day
    Thanks John, what a great movie.

    I appreciate the suggestions on making this more bearable. It's always great to gain this information from someone that has already been through this.

    Regards,

    David
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #14
    Husker Fan said:

    Ground Hog's Day
    Thanks John, what a great movie.

    I appreciate the suggestions on making this more bearable. It's always great to gain this information from someone that has already been through this.

    Regards,

    David

    Fine
    You'll do fine David....just stay positive and realize each day done is a day closer to being finished.

    It starts getting rough around 3 weeks in... I had no PEG and was mainly taking in calories using numbing solutions, the water, Ensure Plus and more water, chased by a ground up percocet for any after pain.

    At no time did I feel that I couldn't make it...it just was what it was...you do what you need to do to survive and get through it.

    I know that you can do it and will be fine once through it...

    Best,
    John
  • Husker Fan
    Husker Fan Member Posts: 65
    #15
    Skiffin16 said:

    Fine
    You'll do fine David....just stay positive and realize each day done is a day closer to being finished.

    It starts getting rough around 3 weeks in... I had no PEG and was mainly taking in calories using numbing solutions, the water, Ensure Plus and more water, chased by a ground up percocet for any after pain.

    At no time did I feel that I couldn't make it...it just was what it was...you do what you need to do to survive and get through it.

    I know that you can do it and will be fine once through it...

    Best,
    John

    Thanks John
    Thanks John,

    Your encouragement is great to have. I do not have a PEG either, at this point. The doc and I agreed to try without it and I will be meeting with a dietician along the way. I am imagining that it will get like the TORS Tonsillectomy (Roto Rooter of my throat) but LONGER!

    Thanks
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #16
    Husker Fan said:

    Thanks John
    Thanks John,

    Your encouragement is great to have. I do not have a PEG either, at this point. The doc and I agreed to try without it and I will be meeting with a dietician along the way. I am imagining that it will get like the TORS Tonsillectomy (Roto Rooter of my throat) but LONGER!

    Thanks

    PEG
    The PEG always stirs emotions here, most swear by it, but a few of us didn't have one and made it fine.... I don't think any of us didn't make a choice not to have one, it just wasn't felt necessary at the time by our MD's.

    Everyone is different and it's not something you can control. If it works out for you great, if not, you always have that option.

    Hopefully you'll be like myself, Jimbo and a few others and everything will go smooth for you (as smooth as can be)...and you'll recover fine in time.

    I have regained nearly 95% plus of both saliva and taste and currently I'm not on any meds. My thyroid took a hit and is slowly going out, but that's not uncommon for the radiation received and usually easily controlled with meds.

    Just stay in touch with your body and what's going on. Anything you aren't sure of communicate with your MD's. Maintaining a good relationship with them is huge...they can provide you with everything you need to get you through.

    Best,
    John
  • lilwriter
    lilwriter Member Posts: 13
    #17
    osmotar said:

    Radiation
    I hope you continue to post during your radiation sessions, as that will be my next step in this journey.

    Blessings & Light

    Linda

    Almost at the end of my
    Almost at the end of my third week of radiation. I was eating fine up until the end of the second week. Spaghetti, mushy life cereal, cream of brocoli soup, anything that went down easily. They had me put a port and peg tube in. Port for the chemo since my veins are so deep and they have a problem finding them and the feeding tube because, well, I'm not as strong as I thought. MD had it put in before the radiation started because he didn't want to stop treatment to put it in. If you are thin the peg tube may be the way to go because I'm told during radiaiton the last thing you want to do is lose too much weight. I'm down over 20lbs and only starting 4th week on Monday.

    Good luck. Just posted here and already feel so much support from these members.
  • Husker Fan
    Husker Fan Member Posts: 65
    #18
    One down, 29 to go...
    Well I had my first radiation treatment today. Everything went good, the mask was tighter then when I had it on when they made it. The radiation tech said that as they cool, they do shrink. Kinda freaked me out as they put it on, but thinking of all the support from my family and CSN friends got me relaxed.

    Here we go.... !!!

    Thanks everyone,

    David
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #19
    lilwriter said:

    Almost at the end of my
    Almost at the end of my third week of radiation. I was eating fine up until the end of the second week. Spaghetti, mushy life cereal, cream of brocoli soup, anything that went down easily. They had me put a port and peg tube in. Port for the chemo since my veins are so deep and they have a problem finding them and the feeding tube because, well, I'm not as strong as I thought. MD had it put in before the radiation started because he didn't want to stop treatment to put it in. If you are thin the peg tube may be the way to go because I'm told during radiaiton the last thing you want to do is lose too much weight. I'm down over 20lbs and only starting 4th week on Monday.

    Good luck. Just posted here and already feel so much support from these members.

    DePorted
    Hi LiL, you are doing really great since you posted the other day...congrats. i'm glad you have seen it "our" way after we beat you into submission, LOL....

    I had the port in for over 2 1/2 years...since January 2009. I finally had it removed a bout two weeks ago..., another milestone;

    DePorted

    Above is a photo of my actual port when they removed it. I think that I'm going to have to take it in to the Chemo Nurses next time I'm there for them to flush it, bawahahahaha....

    Best,
    John
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #20
    Husker Fan said:

    One down, 29 to go...
    Well I had my first radiation treatment today. Everything went good, the mask was tighter then when I had it on when they made it. The radiation tech said that as they cool, they do shrink. Kinda freaked me out as they put it on, but thinking of all the support from my family and CSN friends got me relaxed.

    Here we go.... !!!

    Thanks everyone,

    David

    WTG
    WTG David, you better enjoy anything that you can taste right now if you can still eat. It's going to be awhile before you'll enjoy food again.

    But, that being said, you're going to still be with us down the road to enjoy it again, that's a good thing.

    Yes, the mask was freaking me also. I had to take a little xanax the first week, but then I got used to it and could handle it after that.

    Like I mentioned, take some tunes that you like, and within 3 - 4 songs, you're done for the day.

    Best to you brother.....
    John
  • Jimbo55
    Jimbo55 Member Posts: 590 Member
    #21
    Skiffin16 said:

    WTG
    WTG David, you better enjoy anything that you can taste right now if you can still eat. It's going to be awhile before you'll enjoy food again.

    But, that being said, you're going to still be with us down the road to enjoy it again, that's a good thing.

    Yes, the mask was freaking me also. I had to take a little xanax the first week, but then I got used to it and could handle it after that.

    Like I mentioned, take some tunes that you like, and within 3 - 4 songs, you're done for the day.

    Best to you brother.....
    John

    The Countdown
    My wife and I did the countdown each day as we rode the escalator up from the rads. It started out as a little joke to put a smile on her face during those first days. It is something though when you pass that halfway mark, and even more so when you're counting off those last few sessions. Stay strong David! Cheers.

    Jimbo

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