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#24356 09-25-2007 12:33 AM
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hey there, Nelie! I will definitely ask my doctors their reasons. According to what they told me so far, the reason is that "they have had recurrence in such cases and do not want to risk". Another reason, they say, is the type of cancer (but I read here it is well/moderately differentiated so that sounds strange) and my age.
The protocols say I should not do it, but sometimes you don't know whether to agree with protocols or with humans... I think the docs are simply concerned about not making me take the risk of recurrence, and I certainly can understand that. On the other hand, I ask myself, what kind of risk is that, and does it really disappear with radiation?


woman, 32 y/o, 7/07 Squamous cell cancer stage 1, G2, N0, T0 - 8/07 partial glossectomy, neck dissection (all lymph nodes and 1 tonsil negative, 2,5 cm margins negative). Doubtful about radiation, I have had different opinions from the doctors.
#24357 09-25-2007 01:56 AM
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Francesca -- While not as young as you, and with a more advanced cancer, I took the mindset that I wanted the most aggressive treatment possible to maximize the chance of a long term cure.

With a clinically negative neck and clear margins, I can understand your reticence. Radiation is not fun, but it was better (for me) than I expected, and I am not limited in my activities in any material sense. Yes, my taste is not what it was, but it is improving, and I need to drink lots of water when I eat certain foods, but other than that, my experience has been very positive, and I am presently cancer free.

Studies I have seen show that radiation treatment after surgery and neck dissection does significantly reduce the recurrence rate. Of course, nobody can say for sure whether you would have a recurrence in any event.

It is a highly personal decision, and balancing the side effects with the benefits is difficult, particularly for someone as young as you are and with an early stage cancer. Best of luck, whatever you decide.


Jeff
SCC Right BOT Dx 3/28/2007
T2N2a M0G1,Stage IVa
Bilateral Neck Dissection 4/11/2007
39 x IMRT, 8 x Cisplatin Ended 7/11/07
Complete response to treatment so far!!
#24358 09-25-2007 02:26 AM
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Francesca - don't you wish there was a magic formula that said "this is exactly how you should be treated"? Unfortunately, there isn't.

I had exactly the same diagnosis as you, and was treated at MD Anderson, one of the top-notch head and neck cancer centers. They told me that given my clean margins, etc, that no radiation was necessary, so I did not have any. Do I sometimes wonder if that was the right choice? Yes... but yet I am also thankful I did not have to go through the radiation... and so far, I am doing well...

I know it's overwhelming as you look at all the information, but it is better to be well informed and also to sometimes question your physicians - they are not God and don't have all the answers, either...


Ginny M. SCC of Left lateral tongue Dx 04/06,Surgery MDACC 05/11/06: Partial glossectomy with selective neck dissection. T1N0M0 - no radiation. Phase III clinical trial ("EPOC" trial)04/07 thru 04/08 because tests showed a 65% chance of recurrence. 10 Year Survivor!
#24359 09-25-2007 02:33 AM
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Thank you all guys, this is really helping me. I know that the docs cannot be sure about the results, but I also know that they can inform me about the possible reactions, the pros and the cons. In the end it's me, I'm the one to decide, me alone... I know that, and I'm glad that, at least, I can still decide.


woman, 32 y/o, 7/07 Squamous cell cancer stage 1, G2, N0, T0 - 8/07 partial glossectomy, neck dissection (all lymph nodes and 1 tonsil negative, 2,5 cm margins negative). Doubtful about radiation, I have had different opinions from the doctors.
#24360 09-25-2007 02:48 AM
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Francesca,
especially with IMRT it is difficult to compare radiation effects because the extent of the irraduated tissue volume and location can vary greatly. This also means that the side effects are quite variable and depend on location/volume that is zapped. Depending on your particular case the volume may not be that big, on the other hand just because it is possible now you do not want to be too skimpy and miss stuff.
Perhaps this is a point to discuss with your docs: the extent of tissue they would need irradiate?

Markus


Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
#24361 09-25-2007 10:32 AM
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To: Me2 (Ginny)
Hi, Ginny; my name is Luanne; I'm Hank's wife. He recently completed radiation for SCC of left tonsil, and base of tongue. This forum is SO helpful; wish I had found it sooner! I was interested in the clinical trial you are enrolled in---can you share some information, please? Thank you. Luanne

#24362 09-25-2007 11:22 AM
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I have been called 2 times by a radiologist and gotten 2 letters, one of them registered. He thinks I need radiation and I do respect his opinion. I sent one of the letters to my Dr at James Cancer Center at Ohio State. He called me and said I don't need radiation and gave me reasons why not. He got all the cancer when he removed part of my tongue and the 8 nodes he took out of my throat are negative. But I do wonder. The Radiologist thinks radiation would ensure the Big C wouldn't come back. I lean toward my Dr at the cancer center. Any thoughts anyone?


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
#24363 09-25-2007 11:27 AM
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I forgot to mention I have 1.5mm wide margins. I am also in a cancer study at Ohio State.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
#24364 09-25-2007 01:18 PM
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Is the radiologist who is writing you also from Ohio State, or is he affiliated with the hospital where you were considering having your surgery initially?

I'd think a place like the James Cancer Center would have discussed your case at a tumor board, with many specialities represented (surgeon, radiologist, medical oncologist, etc.) and with the treatment plan you were offered being the consensus of their opinions.

-- Leslie


Leslie

April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
#24365 09-25-2007 02:07 PM
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Francesca,

One more person here who had tongue surgery, neck dissection and no radiation. Similarly to Ginny, I too wonder if I did enough, but this of course lessens as time goes on. I did see a radiation oncologist, who did not advise radiation after the results of my surgery showed clear margins and clear nodes.

What it comes down to is: if I get a recurrence, then I probably did the wrong thing, if I don't then I definitely did the right thing.

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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