#71568 03-16-2008 10:52 AM | Joined: Feb 2008 Posts: 19 Member | OP  Member
Joined: Feb 2008 Posts: 19 | Hello, here's my story and my question...I was diagnosed with scc on the side of my tongue at the end of December'07. (non smoker, casual drinker, age 47) In January I had a partial glossectomy and they removed a tumor that was 1.5cm across but at a depth of 5mm. My Dr. said that anytime the depth is over 4mm they suggest a neck dissection. I had that done 3/5/08 and the results were that they removed 71 lymph nodes on the rt. side of my neck and of those, one was cancerous. Staging....T1, N1, M0 "early stage 3"
My question is this, my Dr. was to present me to the tumor board on Friday...He feels that because the lymph node that was involved was small and "encapsulated" that he would not suggest radiation. Everything I'm reading is saying that radiation generally follows the neck dissection if there is any lymph node involvement.
Has anyone here had anything similar.
51 yr old female...dx 12/28/07, partial gloss 1/23/08, nd 3/5/08. Opened the neck AGAIN, 5/21/08. Non smoker, occasional drinker. Additional node pos. 6/26/09, Starting rads and chemo (5-fu, Cisplatin) 7/13/09 T1N2MO. Almost 2yrs out of treatment and feeling great....
| | | | | Joined: Sep 2006 Posts: 493 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Sep 2006 Posts: 493 | Pookie,
I'm sorry you are here, but welcome to the board. Where are you being treated at? I was told the same thing by my ENT surgeon at first. But once I got to a hospital that had a tumor board and sat down to speak with and radiation onco (RO) and the hemo onco (HO) I changed my mind. Everyone's cancer is different and only you can decide for you. I'm glad that we chose to treat with radiation and chemo, I wanted to throw everything we could at this, but that's me. There is no 100% right or wrong only what you feel comfortable with. There are many here that have had to make the same decision you are faced with, I'm sure they will be along shortly. Keep us posted and again welcome.
Tim
Tim Stoj
60 yr old. Dx Jun 06 with BOT Stage IV. Neck dissesction on 19 Jun 06. Started Tx on 21 Aug 06/completed 33 IMRTs and 3 CT (2 Cisplat & 1 Carboplat) on 5 Oct 06.
| | | | | 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 | Pookie, Did they test the cancer for HPV?
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.
| | | | | Joined: Feb 2008 Posts: 19 Member | | OP Member
Joined: Feb 2008 Posts: 19 | I'm being treated at a "world class care" facility in Cleveland, one of the "big ones" Doc called me today and said they ran over at Tumor board on friday so he'll present me this coming Friday...said it wouldn't matter since if I have treatment it wouldn't start until 4 to 6 weeks post op anyway. This made me feel that he's thinking radiation....BTW, I am also the type to throw anything at it, I'm worried about anything that they may have missed. Also, HPV was tested for, I was tested for HPV at my gyno appt, neg, and also during the pathology on the glossectomy, also neg.
51 yr old female...dx 12/28/07, partial gloss 1/23/08, nd 3/5/08. Opened the neck AGAIN, 5/21/08. Non smoker, occasional drinker. Additional node pos. 6/26/09, Starting rads and chemo (5-fu, Cisplatin) 7/13/09 T1N2MO. Almost 2yrs out of treatment and feeling great....
| | | | | Joined: Sep 2007 Posts: 98 Senior Member (75+ posts) | | Senior Member (75+ posts)
Joined: Sep 2007 Posts: 98 | Hi Pookie,
Were you treated at the Cleveland Clinic or University Hospital Ireland Cancer Center? I was treated at University Hospital Ireland Cancer Center, which is just down the street from the Cleveland Clinic. Being from Canton, it was a 62 mile /1 hr 15 min drive one way every day.
Tom
SCC T4N1M0 left side tongue & 1 node
Dx 05/21/07 42 yrs old
40 Tx IMRT @ 70 Gy started 06/25/07
Cysplatin & 5fu 1st & 4th wks
treatment ended 08/23/07
| | | | | Joined: Feb 2008 Posts: 19 Member | | OP Member
Joined: Feb 2008 Posts: 19 | Tom,
I'm being treated at CCF. This website is providing me with a lot of information and a lot of questions for my doc. I've only been treated so far by the head and neck surgeon but regardless of what he tells me I'm going to see a RO. Oh by the way, I was born in Massillon, GO TIGERS! and have a lot of aunts in Canton
Paula
51 yr old female...dx 12/28/07, partial gloss 1/23/08, nd 3/5/08. Opened the neck AGAIN, 5/21/08. Non smoker, occasional drinker. Additional node pos. 6/26/09, Starting rads and chemo (5-fu, Cisplatin) 7/13/09 T1N2MO. Almost 2yrs out of treatment and feeling great....
| | | | | Joined: Sep 2007 Posts: 98 Senior Member (75+ posts) | | Senior Member (75+ posts)
Joined: Sep 2007 Posts: 98 | MASSILLON?!! My wife went to McKinley. I went to Lake out in Hartville. I live in Plain Township (Glenoak schools).
As far as treatment goes, I would want them to be as aggressive as possible upfront so it doesn't return. I didn't have surgery, but had chemo and radiation. The tumor on my tongue was large enough that they would have had to remove half my tongue, but they opted for the chemo and radiation. So far 7 months out from treatment things look real good. I am scheduled for another PET scan at the end of April which was ordered by my RO.
Tom
SCC T4N1M0 left side tongue & 1 node
Dx 05/21/07 42 yrs old
40 Tx IMRT @ 70 Gy started 06/25/07
Cysplatin & 5fu 1st & 4th wks
treatment ended 08/23/07
| | | | | Joined: Mar 2007 Posts: 163 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Mar 2007 Posts: 163 | Paula
I am sorry you are having to deal with this.
The consensus of opinion that I have seen on this board over the past 4 years appears to be, you only get one chance at beating this disease hit it with EVERYTHING available to you .
My husband did not have surgery his tumor was also too large but as you can see he is doing really well.
Take Care
Marica
Caregiver to husband (Pete) Stage IV Base of Tongue. Dx 04 2003 Chemo/Radiation no surgery.. doing great!
| | | | | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | Hi Paula,
I agree that you should look seriously into radiation, I'm sure it would be IMRT and that seems to do less damage.
For the record, I want to say that while it's best to beat it the first time with everything you can throw at it...........having it come around again even after all that doesn't mean you're a goner. There are quite a few on here that are dealing with their second go around, myself included.
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.
| | | | | Joined: Jan 2004 Posts: 16 Member | | Member
Joined: Jan 2004 Posts: 16 | Paula,
I had neck dissection in Oct 2000, but only 15 lymphs removed and just one cancerous. I gambled and didn't have the Radiotherapy, although they had booked me in for a 2 week stint. Been lucky with no re-occurence !!
T3N1M0 Lower left jaw Oct 2000. Male, age 61, retired and trying to enjoy life | | |
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