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#22443 03-05-2007 02:51 PM
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jimmyg Offline OP
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Hey, my name is Jimmy and I was told today that I have cancer on my tongue and will need surgery. I am kind of in shock still and did not ask all the questions that I thought of later.

#22444 03-05-2007 03:09 PM
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JAM Offline
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Dear Jimmy, Shock is an appropriate reaction when you get a diagnosis of cancer. Now what you are gonna need to do is gather all of your forces together and get your plan going! You will get lots of good help here and mountains of support. Please tell us more about you- age, family, where you are going to be treated, what the Docs are telling you, who is going to help you during tx., etc. You can freely ask any question you need to, and I can guarantee that someone will try to answer it. Most important thing right now is to have someone with you for the next Dr. appointments and research the "Getting through It" posts on this site. I know a little about Real Estate Appraisers-- you all are tough cookies! Amy in the Ozarks


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

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#22445 03-05-2007 03:20 PM
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Glad you found this site, Jimmy - There are lots of helpful people who can give you really good information. Check out all the information from the Home page and it will help you with asking questions. There is also a "search" function on the home page and at the top of this page for specific questions. Doing the research and knowing the facts will really help lessen that anxious feeling and get started on the way to fighting the cancer monster! How did you find out about it ? Was it after having a biopsy? You can ask any question you want to here and there will very likely be someone with an experience similar to yours. Also it helps to write down any questions you have for your doctor and when you see him/her, if you bring someone with you, they can help remember all the doctor's answers for you.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



#22446 03-05-2007 03:41 PM
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"Above & Beyond" Member (500+ posts)
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Jimmy,

Welcome to the most suportive and caring group that no one wants to belong to! I to was recentley diag with tongue cancer and I am 3 weeks out of surgery ! SHOCK is a Normal reaction I think. I also forgot to ask those questions as I wasnt sure I was even hearing what he said ! I found for me was i bought a small notebook to right down my questions ( even some of the answers) People here can tell you all the important questions to ask. Give them as much info as you have and they will tell you what and where to go with it. Like what stage is it , what treaments are avail. Did you already have a biopsy ? Having someone with you through all this is very important too, we cant do it alone !! And I must say Everyone here will do all we can to get you through it ( PSST They are amazing shocked } ) So feel free to ask questions cus lord knows you probably have a million of them and I found for me the more I know the more in control I feel I have ( even if i dont )


Sharlee
35 year old Female Non smoker, very occasional alcohol ..Scc T1N0M0,partial glossectomy and left neck disection ,2/9/07 No rad deemed ness. 4/16 tonsillectomy ..Trimengenial Neuralga due to surgery
#22447 03-05-2007 04:43 PM
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jimmyg Offline OP
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Thanks I really appreciate the replies. I am 60 years old, had prostate cancer 5 years ago and had surgery on 9/12/01 at Johns Hopkins. I had the biopsy today; however, the doctor said there was no doubt in his mind that it is cancer.The doctor I am seeing is at Duke. One immediate question I have, is if I should seek a second opinion. When I was diagnosed with prostate cancer I got 3 opinions and looked at all the treatment options. With this type of cancer, there does not appear to be as many options available and the time frame to act is so short. The surgery is scheduled for March 20th. I am scheduled for pre-op on Friday and a CT. At this point I have been given no details on the procedure other than there would be an incision in my neck and there would be a skin graft involved on my tongue. He also said I would have to have a breathing tube and a feeding tube. Everything was very general.

#22448 03-06-2007 01:49 AM
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Jimmy,

Is your case identified as Base of Tongue cancer or Oral Tongue? Oral is that portion inside the mouth for the most part with Base being lower into the throat area and not readily visible.

Bill D.


Dx 4/27/06, SCC, BOT, Stage III/IV, Tx 5/25/06 through 7/12/06 - 33 IMRT and 4 chemo, radical right side neck dissection 9/20/06.
#22449 03-06-2007 06:44 AM
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Hey Jimmy, it might not be a bad thing to seek a second opinion as treatment options vary. Having said that, I also think it's a very personal decision. Duke is a good facility, and it's a comprehensive cancer center. Hopkins is where I'd go for a second opinion. Knowing that your surgery is scheduled for the 20th it would mean you'd need to act quickly - like calling this week.

Regardless, you need more specific information from your current doctor so you can make an informed choice. What have you been told on your primary site, metastasis to lymph nodes or adjacent/distant areas, or stage? Was the decision on your treatment plan made by a group consultation or presentation to the tumor board? Have you had a consult with the radiation oncologist to see what they think? Have they explained all the options to you to your satisfaction?

The location of your cancer makes a big difference in whether surgery is the best choice as step 1. For example, there's a difference between surgery on the base of tongue (BOT) versus on the side of tongue and in how much tissue they are planning on removing. There are also differences of opinion among doctors and facilities on whether to do surgery first and what kind of surgery to do. Radiation and Chemo are the work horses of the HNC treatment plan so you also want to know their plan for that.

Everyone is in shock getting this diagnosis which is why it's good to take a deep breath and make a list of questions for your doctor. I would want to know the pros and cons of any procedure they are recommending for you and then you'll need to figure out where your personal comfort level is.

Jack did have surgery first because they were doing a clinical trial at U of PA on using the less invasive DaVinci robotic technique to remove BOT cancers. As a result he hasn't had any long term speech or swallowing problems from the surgery. If he'd had the traditional radical head and neck, the risks of those issues would have been higher and we may have made a different decision. These are the types of questions you need answers to.

I assume the feeding tube is because they are planning on doing radiation on you - and it's a really good idea. Ask them what the short and long term side effects of the surgery will be.

Get your thoughts together and ask more questions. It may still turn out to be the right decision for you but you'll know why and have the specifics to understand what you're getting into.

Regards JoAnne


JoAnne - Caregiver to husband, cancer rt. tonsil, mets to soft palate, BOT, 7 lymph nodes - T3N2BM0, stage 4. Robotic assisted surgery, radical neck dissection 2/06; 30 IMTX treatments and 4 cycles of cisplatin completed June 06.

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