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Radiation

sjmalisz
Posts: 7
Joined: Nov 2012

Squamous Cell Carcinoma Cancer was removed from my mouth and neck lymph nodes. All lymph nodes on the right side were removed, and 2 nodes had cancer. The largest size cancer was .9 centimeters. Cancer was not protruding from my node. Five years ago, the same kind of cancer was removed from the mouth area, and no radiation was recommended. Chemo is not an option. The surgeon and oncologist are recommending moderate to high dosages of radiation in the mouth and neck areas. Does anyone have any experience with having these areas radiated. If you elected not to have radiation in these areas, I would still like hear from you. Given the relatively high level of radiation, if my cancer returns, my body may not be able to sustain radiation again.

Thank You!

Judy

CivilMatt's picture
CivilMatt
Posts: 2803
Joined: May 2012

Hi Judy,

I had stage IVa, scc, bot, hpv +, 1-lymph (3.1cm) node left side of neck. I’ve had surgery on my neck and tongue 35 radiation zaps and Erbitux (loading dose plus 7) to hopefully kill the beast.

I am reasonably intact mentally and physically. I have had many of the common side effects including dry mouth, little saliva, no taste, tiredness, etc…While I am a measurable distance from where I began; I am getting better at a noticeable rate.

After all I have learned from the H&N forum I believe (I hope) the path I chose will be deemed correct for years to come.

Good Luck!

Best,

Matt

sjmalisz
Posts: 7
Joined: Nov 2012

Matt,

Sincerely appreciate your information, and consideration given by your post. All feedback is so appreciated. Wishing you well as you continue your journey.

Judy

longtermsurvivor's picture
longtermsurvivor
Posts: 1755
Joined: Mar 2010

if you had two positive nodes, your risk of recurrance without radiation is substantial. Have they really counselled you that not getting radiation is a reasonable alternative under the circumstances?

Pat

sjmalisz
Posts: 7
Joined: Nov 2012

Pat,

Thank you for your response. Yes, I did feel well counseled, in the sense that pro's and con's were given, however given the long term implication of possibily not being able to have radiation again, the decision is up to me. Again, much appreciated!

Judy

longtermsurvivor's picture
longtermsurvivor
Posts: 1755
Joined: Mar 2010

with the thought behind this. "Might not be able to get radiation again" is something everyone is faced with. But this seems to me to be chop logic. Your best chance of CURE is right now. and that chance is predicated upon getting rads in addition to the surgery you have already had. When I had my first cancer 14 years ago, reirradiation was absolutely NOT possible. I was cured by having a radical neck disection and 70 gray to the primary cancer. WHen I got a second cancer recently, I was reassessed for radiation. They radiated a second time, and my second cancer has not recurred, at least yet.

Personally, I feel strongly that witholding radiation because it might be of use later is not a very good decision. If you get a recurrance based on what you've had done thusfar, it may or may not be treatable at all, then you've truly got a problem.

Best to you.

Pat

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

I had the same 35 radiation zaps and Erbitux as Matt, but no surgery.

my onc recently told me that in event of recurrence, rads would not be an option again. but right now I have to go with the faith that it's not coming back. mouth/throat radiation is tough, but I'm comfortable with the medical decisions made. not looking back, or too far ahead.
bless you.

sjmalisz
Posts: 7
Joined: Nov 2012

I want to thank all of you have have offered such sage advice...much needed and appreciated. Although I am knew to this service, I already feel like I'm among friends and not alone. I am getting a second opinion this morning, and will make this difficult decision within a few days.

Judy

sjmalisz
Posts: 7
Joined: Nov 2012

I want to thank all of you have have offered such sage advice...much needed and appreciated. Although I am knew to this service, I already feel like I'm among friends and not alone. I am getting a second opinion this morning, and will make this difficult decision within a few days.

Judy

MichelleLee71
Posts: 13
Joined: Nov 2012

Just got done with 30 treatments of rad on my neck in August. I'm still having issues with little to no saliva. Finally getting some taste back but minimal. My neck burn has healed and my throat no longer hurts. I also had surgery on my inner cheek and a right neck dissection to remove lymph nodes. It's a tough process to go thru but it does get better day by day.

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

I think if I were you I'd get a second opinion. I also was dx with SCC laryngeal IV
I was treated with 8 erbitux (chemo-like treatment but antibody based) and 35 radiation treatments. I'm healing and feeling better from treatments each day it seems. My onc, ENT, and rad onc were very confident that I should have all the treatment that I had. While it's true that should the cancer come back I probably wouldn't be able to have radiation again in that area, it's also very certain that without rads I was at much greater risk.
Surgery wasn't an option for me if I wanted to preserve my voice so I did what was highly recommended and I'm glad I did.
Knowing what I know now, I would for sure get a second opinion if I were you. Rads and chemo are very standard procedure for H&N cancers. While not every patient gets both of those treatments, most get at least one of them.
I wish you luck in whatever you decide to do. Come back often as we all always here for you.
Take care,
Billie

phrannie51's picture
phrannie51
Posts: 3597
Joined: Mar 2012

erbitux might be something that you can have, since it isn't the same as Cisplatin or Carboplatin...There are a couple of folks on here who have gone thru treatment more than one time, getting rads a second time around. I'm sure you'll hear from them.

Myself, if they gave me the option of trying radiation, I'd take it...at least see if my body could handle it.

p

mikeev
Posts: 19
Joined: Jun 2012

I had Cancer on the base of my Tongue and had 3 lots of Chemotheraphy(Cisplatin) and 35 radiotheraphy treatments, found the Chemo harder than the Rads, first one was ok but got quite sick with the other two, last one lasted nearly 2 weeks, was very lucky that the rads did not burn my skin to much, my main problem was that I could not eat anything other than soup through not being able to use my tongue. had a lot of Mucus in my mouth for about 4 weeks after treatment finished this was very uncomfortable as I could not control and sometimes looked as though I was Frothing at the mouth, still getting a little mucus but not bothering me to much, was glad that I had a PEG fitted prior to treatment starting as this was really the only way I could get enough calories into my system, I lost about 35lbs in weight from when originally diagnosed(May 2012) to when I finished Treatment(Aug 2012), have now had PEG removed and I am eating fairly well and appear to be putting weight back on.

The effects I had from radiotheraphy were, lot of Mucus, tongue burning when eating anything spicy or acidic,general tiredness, very sore throat when swallowing but 4 months after finishing treatment things are gradulally getting back to normal still have very dry mouth but can eat most things except bread without burning sensation on tongue even though I have to have gravy or some sauce with food at the moment.

would I go through it again knowing what the treatment entails probably would but you need the support of people around you expecially when you get depressed due to not progressing fast enough or because you cannot eat your favourite foods. I mainly got depressed through watching other people eating dishes that I loved but could not manage myself but have decided that the only way to beat it is to force myself to eat them even if it means finishing long after others have eaten.

Had to cancel a cruise to the Mediteranean in August due to treatments but am going on one next week to the Canaries, this has helped me to set a goal of eating most things by the time I go, have found out that If I set a goal of things to do I do not get so depressed if I dont meet the aim that week I keep trying over the next few weeks but still set new goals each week.

sylvan48's picture
sylvan48
Posts: 6
Joined: Dec 2012

hi there sorry to hear you having cancer. i wish you the best. i am going into my fourth week of radiation and Erbitux some kind of chemo, they told me that I am not getting chemo. any way I am not having soars in my mouth at the top and under my tounge and on the sides of my mouth making it difficult to eat anything that is not soft. i am also having swollowing issues. it hurts. they gave me some mouth wash mix that numbs the mouth so i can eat with less pain but lately i just don't want to eat. i am 440 pounds as of tuesday at the chemo office where they weigh me. I have chemo (i'll call it that)once a week on monday and radiation every day five days a week. other than that i am fine. i am not in pain right now. only when i have to swallow. gotta do seven weeks of radiation and i don't know how much chemo.

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