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Joined: Sep 2008
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Suzanne,

When do you get the biopsy results? I hope that it is early next week so that you don't have to wait. Is this your ENT?
Were your margins clear after your other surgeries? I was wondering if they have ever talked about radiation with you after surgery? It would almost seem logical if the margins are still not clear or close to use radiation.

I will keep you in my prayers and you keep your positive attitude.

Patty


48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
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Hi Patty,

I received all of my results this past Friday. The tongue was severe dysplasia and the cheek was moderate dysplasia. My doctor did say she thinks I would be a candidate for radiation in the future. She doesn't want to do it now since it can only be used once. To be honest...I'm petrified to get radiation. I know so many here have gone through it but I am so scared to do that. Is radiation as bad as I think it is?


Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
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Suzanne

Radiation is no walk in the park for sure, but like everything else it is as bad as you let it be. Near the end of mine I got very down and was in quite a bit of pain and wanted to quit. I probably would have without a couple of boots in the butt from people like David, Charm and Pete and an interesting story from Brian Hill about termites. But remember that I have had treatments twice so the skin irritation was quite a bit more severe. Everyone reacts differently also. During my first radiation, I had red skin, but nothing very severe and very little dry mouth.

You are fortunate to have this site to research and get information about the radiation prior to receiving it. Also to have the support during treatments. I was on my own for my first treatments and was totally unprepared for everything from the making of the mask to the actually treatments.

What I wonder is why she says that you are possible candidate in the future if your margins are not clear now? I am a little confused about your treatment plan I guess.

Patty

Last edited by Good1; 02-22-2009 06:22 PM. Reason: typo again

48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
Joined: May 2007
Posts: 666
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Radiation is not much fun, but it can preserve tissue. In retrospect, it was not that bad.
Considering that you have multiple glossectomies, I would recommend that you consult a CCC with a multidisciplinary team. Does your physician (surgeon?) know why you get recurrences.
There are several people that had IMRT a second time.

M





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.
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Intersting...people do get radiation more than once in the same location? I hadn't heard that before. I am being treated at Fox Chase Cancer Center. To my knowledge that is a CCC.

I am thinking it is time for a 3rd opinion. What I find to be frustrating is I've been seen at The University of PA (Penn) and Fox Chase. Both are supposed to great yet both doctors said they don't know why I keep getting recurrences. Shouldn't someone know something? And...the last surgery and biopsy were both my decision. My doctor didn't think I needed either. As it turns out I did need it. That was all based on how my tongue felt to me. That is a lot of pressure.


Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
Joined: Mar 2008
Posts: 3,082
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Posts: 3,082
suzanne

One factor in the re-radiation equation is how much radiation you had the first time around and where. in my case, I already had the "maximum" 7200 GY, but my RO did consider (and abandon)the idea of using the "cyber knife" to treat this recurrence since it could be focused not to radiate my jaw nor the bulk of the prior radiation field. But he and the ENT both agreed that the surgery is the way to go here as it appears my cancer is somewhat "radiation resistant".
At the time, I thought that Radiation was the hardest thing I ever had to do, but now I am much more concerned about the aftermath of the glossectomy, mandibulotomy, neck dissection, free flap reconstruction and tracheotomy. You've already sailed through those and I appreciate your posts.
So, let me reassure you that if you need radiation, it is very doable. My entire team (RO, MO, ENT) all felt that the surgery is far more drastic than the radiation and chemo and had hoped to "spare me" from this. It's fear of the unknown that gets to you. Radiation is often used to "mop up" after surgery. I wish I knew why any of us get recurrences but no body except quacks and con artists even pretend to know.


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Joined: May 2007
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Suzanne
Fox Chase should be good. Are you seen by a team or just one physician?
Regarding the recurrences: The question is then are these actually new lesion or were they already there before and just not yet visible?
If they are not brand new, then radiation might have worked and given you a "clean slate" This especially, since with radiation you can treat a much wider field.

I would definitely get another opinion from a team (including RO, MO and surgeon)

best
M






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.
Joined: Jan 2009
Posts: 225
"OCF across the pond"
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Posts: 225
Hi Suzanne,
Good luck, keep positive, and Isend you all of my best wishes.
C


Girlfriend to Martin 49 years old at diagnosis
Diagnosed with SCC unknown primary June 2008.
Cancer found in single node Stage N2A (3 to 6cm).
Tonsilectomy 16th june, Radical modified neck dissection left side 30th june.
30 TX radiotherapy ended 9th October
First comparative study scan came back clear
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Hi Suzanne thinking of you. KATE


Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor

Finished all treatments May 25 2007
Surviving!!!
Joined: Feb 2007
Posts: 790
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If the Drs. reccomend radiation I would absolutely do it. It was not fun but gave me the peace of mind that they took care of business. I'm sorry you are having to deal with this again!

KATE


Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor

Finished all treatments May 25 2007
Surviving!!!
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