#39560 10-23-2005 05:58 AM | Joined: May 2005 Posts: 16 Member | OP  Member
Joined: May 2005 Posts: 16 | Hi everyone! I have a question. I have recurrent stage 1 scc in tongue with 1 pos. node. Surgery(tongue and neck dis.) produced clear margins, but Dr. wants to radiate due to possible aggressiveness of cancer. Does anyone have an opinion on which type of radiation to go with? I want to be as aggressive as possible. I'm only 36 so I also want to make sure I have options down the road if it comes back. Thanks. Kim | | | 
#39561 10-23-2005 08:04 AM | Joined: Sep 2005 Posts: 325 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Sep 2005 Posts: 325 | Hi Kim,
I am so sorry to hear of your cancer coming back. Your docs will know what type of radiation is best suited to your disease. Not every type of radiation has maximum efficiency for every type of tumor, so I would ask them very specifically what they think would be best in your case. I asked my Doc about implant radiation or brachytherapy, and he told me it could be done, of course, but that he didn't think it would be suitable for what I had, which was a SCC of the lateral tongue. He set me up with a radiation oncologist, (whom I will be seeing Tuesday afternoon) so that we could discuss available options and treatment modalities that would be best suited to my personal case. My opinion is that you need to talk to them and see what they have to offer, and if it is not agressive enough to suit you, get another opinion!
Andrea
SCC L lat tongue,Dx 9/15/05 T1N0MX L MND and L lateral hemiglossectomy 10/03/05. Recurrence 11/15/06 2nd surgery 12/04/06 hemiglossectomy 3rd surgery 01/15/07 tonsillectomy Radiation 01/25/07 to 03/08/07 3-D/CRT X 30
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#39562 10-23-2005 08:15 AM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Apr 2004 Posts: 837 | Kim,
I think your earlier posts indicated you were going to a major cancer center -- if so, your head and neck team should be able to recommend the best course of radiation. IMRT has some distinct advantages in terms of limiting long-term side effects, but none of us here has enough information (or background) to say whether it's right for you. Your team should be able to explain their recommendation to you and help you understand the reasons for their opinions, and if you search this site you'll also find a whole range of experiences with various forms of radiation.
Cathy
Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
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#39563 10-23-2005 03:15 PM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2003 Posts: 1,163 | Hello Kim,
The above posters have given sound advice. I can't add much but I can offer my prayers and support for a positive outcome. I had IMRT radiation but only after I asked for it. Not all are suited for it. I also have a recurrance in the same area as the original tumor. Being treated with my thrid set of different chemo drugs in the last 17 months.
All My Best, Danny Boy
Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.
Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06
Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
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#39564 10-24-2005 02:24 AM | Joined: Jul 2005 Posts: 624 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2005 Posts: 624 | At Hopkins I met a patient who had had brachytherapy (in NYC) for oral tongue cancer, but had a recurrence within two years to the tongue and also, base of tongue/nodal area. She had surgery (negative margins) for the oral tongue cancer and is getting tomo-IMRT for the BOT cancer, with concurrent chemotherapy. The tomo-IMRT is being used as it allows them avoid radiating the front part of her mouth and tongue which had received the most radiation with the earlier seed implant.
This doesn't really answer your question (you need to ask your own doctors) but it does give some idea of how a recurrent tongue cancer is treated at a major CCC. They were quite specific about the need for the chemo, because they felt this also was an aggressive cancer.
Gail
CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
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#39565 10-24-2005 10:40 PM | Joined: Oct 2003 Posts: 18 Member | | Member
Joined: Oct 2003 Posts: 18 | hey kim
i had cancer on my tongue also and i had radation (34) and chemo (two weeks) together with the raditon being applied to my both sides and now i am THREE YEARS CLEAN,listen to your doctors and always write down your questions before going to see your doc as with me i would have several questions and would forget them when i started talking to the doc, most of all put your FAITH IN THE LORD and he will bring you thur it.
mike | | |
#39566 10-25-2005 03:18 AM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | Hi Kim,
I had a stage IV cancer in my jaw and had surgery first then radiation. I did not have IMRT, I had conventional radiation. I did not have any chemo. That was almost 2 1/2 years ago and I am fine. I eat most anything I want and while dry mouth is an irritation, I can go all night without a drink and do fine during the day for a few hours without a sip of drink. Even with conventional radiation, they are able to miss hitting a salivary gland, which is what they did with me, saving the large gland on my noncancerous side.
Only your doctors can know what is best for you, and a second opinion is a must. Be sure you are at a CCC then make a decision and stick with it. There are no guarantees. People that had IMRT with chemo have the cancer come back, as do people that had conventional with no chemo. There are plenty in both groups that are still alive years later. This treatment is a personal experience and no two are exactly alike.
I wish you well with it,
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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