| Joined: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Apr 2006 Posts: 794 | Tom, might one other be well differentiated or poorly differentiated cells in the tumor?
I, like Jerry, am one of the few whose situation did not require radiation or chemo, and it made me VERY nervous. I even asked for it! My dr. said that I shouldn't need it, and that he didn't expect a recurrence with my type of surgery and with the generous margins he took, but that if I ever did have more cancer, either a recurrence or a new cancer, then I would still have a weapon to use.
So......so far, so good.
You can go to someplace on this site to see the governmental protocols for suggested treatments for all the different circumstances.
If you are at a good cancer center, you can relax and take their advice. You still need to be certain that you continue with good surveillance over the years.
XO
Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
| | | | Joined: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2006 Posts: 720 Likes: 1 | [quote]You can go to someplace on this site to see the governmental protocols for suggested treatments for all the different circumstances.[/quote] The 2008 treatment protocols, published by the National Comprehensive Cancer Network, are available here, on the NCCN site. You may have to register, but it is brief and painless. The OCF site has the 2007 protocols here.
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.
| | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 52 | We will have the 2008 guidelines on the OCF web site by tomorrow. Thanks for bringing this to my attention.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | | | Joined: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Nov 2007 Posts: 681 | Karen, Surgery was the only treatment needed for my OC in the mandible. Pathology found clear nodes and cancer only in the 2 cm spot in the mandible. It has been 3 years and no sign of recurrence. When I asked about the possibility of recurrence my Dr. said nil. He trained at M D Anderson at at SloanK which seesaw between being #1 and #2 for oral cancer so I have confidence that he is right. Happy healing to your husband. Malka
SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013. Support OCF
| | | | Joined: Nov 2007 Posts: 212 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Nov 2007 Posts: 212 | Karen,
I too just had surgery with generous margins and no other form of treatment. My doc is the chair of the head and neck department at M.D. Anderson so I feel confident in his advice. I'm monitored closely and always have the possibility of recurrence in the back of my mind..but the way back, lol. There are those who face recurrences despite throwing everything at it the first time round so the best we can do is take a calculated guess using the advice of the experts. I wish Chip the best.
Susan
Cancer of Tongue, SCC early Stage 1, Dx 3/13/07, partial glossectomy 4/14/07 found no residual carcinoma and a granular cell tumor with pseudo epitheliomatous hyperplasia.
| | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | "OCF Down Under" Patient Advocate (1000+ posts) Joined: Aug 2007 Posts: 1,301 | Karen, Last Saturday was the 2nd year anniversary of my surgery (only). I now need to book for a check up over the next days but am quietly confident that all will be OK. Can anyone advise re yearly follow up testing. Last and all follow up visits with the H & N surgeon have only entailed him feeling around my neck area. I have never had anything else before or after surgery. Should I be asking for something more in the way of a yearly test ??? Gabriele
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma. 14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad. 6 ops and debulking (flap/tongue join) + bx's 2006-2012. bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia 24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | Joined: Aug 2008 Posts: 100 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Aug 2008 Posts: 100 | In my wifes case, it is tongue cancer so it could be different with "retromolar trigone region". I wasn't able to find the information in my notes but using the link provided by Leslie, I think what we were told any of of the following and they would recommend chemo/radiation: 1. Margins that were not clear 2. Cancerous lymph nodes (I think they may have said on both sides) 3. Extracapsular spread (my understanding of this was whether they felt the cancer was contained within the lymph nodes) 4. Perineural invasion (my understanding the cancer growing around a nerve) 5. Vascular embolism (not sure on this but would believe cancer growing close or around artery) That is the best that I can make out of it, if you use either of the links from Leslie and are able to read the flow charts, you should be able to determine the rationale that they used. For this information, I used page 24, Cancer of the Oral Cavity. Again in my wife's case, she struck out on the first 2 items above so will be starting chemo and radiation next Monday.
Colleen, they may have talked about well or poorly differentiated cells in the tumor but I don't recall. I know my wife's tumor was not as large as many on this site, I believe hers was 2.5cm long and 1cm thick, so may not have been an issue.
Karen, wishing you and Chip a long healthy future.
Tom-CG to wife, Pam 46@dx Stage IV Tongue Cancer T2N2C Dx 6/08, Surgery 7/08, 3 nodes positive 9/08 33IMRT/7Carbo/Taxol 4/09 node biopsy positive, mets to lungs/stomach 5/09 Cisplatin or Cis/Alimta study 6/09 Cis/Taxotere 9/09 Taxotere 1/10 Xeloda 3/10 Cetuximab weekly 6/29/10 lost battle
| | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,219 | Gabe,
We have talked about the lack of protocol for follow up here many times. I have not seen any formal protocol for follow ups Hopefully, Brian will chime in here soon.
I had no chemo or radiation and I see my surgeon every 6 months and this will probably remain at this interval until I reach 5 years. He wants me to get a chest x-ray once a year and I do. On my own, I made the decision to get scoped by my ENT once a year and I have very thorough oral cancer exams in my office. I feel these exams are much more comprehensive than anything that the surgeon does.
Hope this is helpful. And, congratulations on your 2 year anniversary.
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"
| | | | Joined: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Apr 2006 Posts: 794 | The protocol on the website (above, the site for the 2007 protocols) has suggested followups listed for all situations...Click on it to get a good idea. The 2008 protocols shouldn't be too different, but I'd like to see them to compare.
FYI--My doctor ordered a PET/CT scan before my surgery, and at 1 year, and at 2 years.....and will again at 3 years. He saw me every 3-4 months the first year, and then has seen me every six months since then. I don't know how long he will continue to order the scans.
On my own, I see an ENT who does a good endoscopic exam. I also see a periodontist quarterly, who looks carefully and gives me a good cleaning and dental exam, and I see a prosthodontist who adjusts my obturator about every six weeks, and he looks too. I would want more surveillance than Gabe seems to be getting.
Just tell him that you are not comfortable with not having more of an exam.
Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
| | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 52 | All the NCCN guidelines have been updated to 2008.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | |
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