#41346 06-09-2007 03:30 PM | Joined: May 2007 Posts: 104 Senior Member (100+ posts) | OP  Senior Member (100+ posts)
Joined: May 2007 Posts: 104 | I had IMRT 35 times from Jan 20th-March 15h of this year & the docs thought my cancer was gone. However, I just had a CT and something showed up. They think it's back or may never have left. Supposedly, it's an inch on my tongue going back to the base. So, I have to have surgery which they said will affect my speech and swallowing dramatically. I also have to have radiaiton AGAIN. Which they said is going to completely dry my mouth out of any remaining saliva, etc. It all sounds horrible.
Can someone help me? Has anyone had it twice? What about surgery going from the middle of my tongue back to the base? Doesn't cross midline. I am so scared. I'm only 31 w a 2 year old daughter. I don't know why this is happening. Please someone help me!
Jordan's Mom. Linda
She fought the fight with courage, hope and dedication. Ten months of battling tongue cancer. They thought they had it after each treatment. Not to be. Christa died at 32 y/o in Nov. '07.
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#41347 06-09-2007 04:55 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | Hi Bailey,
I can only imagine your fear right now but don't let it get the best of you. You need to make clear decisions right now. Are you being treated at a CCC? Do you have a team of doctors? Tell us that information first. You may need a second opinion.
As far as having radition twice, I don't know of anyone that has. I DO know that there are many survivors on here that have had the type of surgery you are facing and are doing fantastic.
I think right now your best defense is to make sure you are in the hands of people that KNOW the best treatment for you and have the skills to perform that treatment.
Minnie
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#41348 06-09-2007 06:15 PM | Joined: Mar 2007 Posts: 525 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Mar 2007 Posts: 525 | Hello Bailey. I can not comment as I have not had rad yet. I am so sorry to hear of the recurrance. Why this disease attacks young people is an unanswerable question. I just sent you a PM (private message) with some info in it as you have no E-mail listed. I wanted to E-mail a thread to you. You can see it by going to the "General Board" forum. There is a topic titled "How to get the most out of this forum". It has valuable info you can use. Keep posting and we will help you. I'll be praying for you as you go thru your journey. Best Wishes, Petey 
DX 3-21-07 L tongue,SCC Stage IV (T3N2MO) TX Slash/Burn/Poison Method.
***Rapid Aggressive Recurrence 8-4-07 with same DX/TX. Life does not cease to be funny when people die any more than it ceases to be serious when people laugh. Never Give Up! ****UPDATE**** Our dear friend Petey passed away, RIP 9-2-07
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#41349 06-10-2007 01:58 AM | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Bailey,
I went to a CCC, Moffitt, in Tampa, Fl. I was told my MO that I couldn't have rad again because there would be to much damage to the blood vessels the 2nd time around. Make sure you ask them about the risks associated with the 2nd rad Tx. Not saying I wouldn't opt for it anyway but I would definately ask more questions and seek other opinions before I mad up my mind.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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#41350 06-10-2007 08:47 AM | Joined: Mar 2002 Posts: 1,140 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2002 Posts: 1,140 Likes: 1 | Bailey, five years ago I had 37 IMRT sessions of 45 minutes each. When I was finished, I commented to the radiation oncologist that it was a good thing they gave me a whole boatload of rad because it was my understanding I could not have any more.
His comment was "that is not necessarily true" which I found strange, but did not follow up on, as I was very happy to see the last of that place.
I just want yu to know that option may not be closed to you. | | |
#41351 06-11-2007 03:24 AM | Joined: May 2007 Posts: 27 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: May 2007 Posts: 27 | Bailey: Alan had a lot of radiation with his first bout of cancer. They said he can't hve anymore. Today the rediation is much more focused and controled. Perhaps this is why they can do a second set.
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#41352 06-11-2007 10:58 AM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Actually clinical trials were started some time ago (in Europe) about receiving RT more than once and surprisingly the collateral damage was not as bad as they expected.
IMRT, because of it's highly targeted nature, can be repeated if it is not exactly at the same site.
PBT may be the treatment of choice for recurrence since it has little to no collateral damage.
Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#41353 06-11-2007 12:52 PM | Joined: May 2007 Posts: 61 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: May 2007 Posts: 61 | Gary-
thanks forthat info. I don't know what PBT is. Please explain. How do you know this info??
SCC-tongueT3N0M0- IMRT 35times-1/07-3/07; along with one cycle of Cisplat & one cycle of Carboplat; weekly erbitux.finished all tx.3/07-supposedly gone. Recurrence 6/07. Age 31-non-smoker/social drinker. Devastated it's back.
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#41354 06-11-2007 01:28 PM | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Bailey,
Although I did not have radiation, I was treated at Fox Chase Cancer Center and during conversations with some people on staff there, I was told that there are many patients that get radiation more than once.
Good luck and I will be praying for you to have a successful outcome with your treatment.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
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#41355 06-11-2007 05:28 PM | Joined: Apr 2007 Posts: 131 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Apr 2007 Posts: 131 | While my husband was in PMH lodge he told me that some of the patients living there were receiving radiation for the second time. Originally one patient he was talking to stated he received radiation in 2005 and now 2007 he is receiving it again. Food for thought. I am not aware of the details. Certainly gives us hope. Carol Ann...
Carol CG to Husband age 60 Stage IV SCC right tonsil T4AN2B tx rad x 35 chemo x 2 Currently after treatment no sign of cancer in throat. (all clear to date)
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