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#14292 06-19-2003 07:16 PM
Joined: Jun 2003
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Hi All.

I'm sure these stories are posted often, so i'm just going to make some bullet points and i think everyone here will understand

- diagnosed Squamous Cell Carcinoma on 5/8
- tounge resection + neck dissection on 5/19
- tounge was T1, two tumors in lymph nodes
- 4 wisdom teeth out 6/6 (seemed more painful then neck dissection)
- need 6 weeks of radiation
- started radiation at Mayo Clinic (Rochester MN) on 6/18 (yesterday)
- no PEG yet, if i loose 20 more pounds will get one
- 23 years old
- almost married (was going to be 6/18, now postponed ~1 year)

I'm new at this whole thing and I'm still not even fully sure what's going on. My main question is, what should i ask my Radiation Oncologist tomorrow during my appointment? I don't even know what important questions i should ask.

any assistance you guys can give would be greatly appreciated.

Thanks!
David

#14293 06-20-2003 04:08 AM
Joined: Jun 2003
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probably should have mentioned that they've told me everything i need to know about side-effects.

i'm more interested in what i should ask about what type of radiation i'm getting. IMRT, Proton, what? any other questions i should ask?

#14294 06-26-2003 06:36 PM
Joined: Mar 2003
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Hi David, I apologize for not replying sooner I was on vacation for the last few days.

First, I hope you are doing OK with your treatments. Second I think that Mayo is a top quality treatment center and that you hopefully are comfortable with the type of treatments you are receiving there. I am astounded with the number of young people like yourself that are facing this type of cancer! I want to pass along hope for you in this battle, and there are a number of people that will help if you have questions. Let us know how you are doing.


Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
#14295 06-26-2003 09:05 PM
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Hello and welcome, David. I have been gone for a couple of weeks as I suspect many others have since you did not receive a timely response to your question. The fact that we survivors are out enjoying vacations should give you hope that there will be better times ahead for you. As you begin to experience side effects from radiation, search these messages or check the archives, as there are many tips that have been shared as we patients figure them out. I learned things here that were news to the doctors and nurses. Radiation is no walk in the park, but it is so important and as one who came through it still smiling, I can tell you that it is certainly something you can manage. Here's a tip: marking the days off on a calendar made the time go more quickly for me. Good luck to you!
Joanna

#14296 06-27-2003 09:57 AM
Joined: May 2002
Posts: 2,152
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Sorry noone replied sooner and I was locked out while they installed a new hard drive. I think you got lost in between about 6 new intros on the same day.

The one thing I would ask about is preserving your saliva glands. This is one of the major long term side effects that will last for the rest of your very long life and effect you every day. Are they giving you some medication to help preserve these? Can they possibly make a stent to protect them?

Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
#14297 07-15-2003 08:32 AM
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David,
I new here, but my name is David too! So besides sharing a name I see we share the same battle. "C". One thing was said to me early on that helped and it might help you deal with this too. Some people see cancer as demon that comes in the night and steals your spirt. Others see it like any other disease that can be treated and survived. Yours is the choice. I choice to be informed , be involved, and kick the s__t out of it!. Its a battle. Round one goes to cancer, but the rest of the rounds are mine and I'm going to win....!

Even though you state you know the side effecxts let me share with you mine. I too was told, but what I experienced was better.
- 3 weeks into it is when it starts to slow you down
-Towards the end I felt as you might in the moring
as you sit on the edge of your bed. Clearing the comb web's out, except it lasted all day. I didn't miss one day of work.
-scehdule the teartments late in the PM and don't go back to work after them.
- I never lost my salava....and it has come back somewhat after 60days. drink lots of water.
-warm showres at nigth before bed was and still is my savor.
never lost taste for sweets and vegtables (exclude tomatoes too much acid). meat and everything else became to taste like wood chips.
-drink 2 insure/sboost's per day...helps with the wieght issue....You don't want the feed tube.
-as you get further along ask me about your symtom because I might have forgot something that I did whichi helped
-GOOD NEWS...my taste came back...Not the same and it may nerver be totally the same, but I can taste......!
-ask all the questions, write them down and be deligant
-good luck and keep laughing...


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