| Joined: Sep 2009 Posts: 3 Member | OP Member Joined: Sep 2009 Posts: 3 | Hello-husband recently diagnosed with metastic SCC of the neck with occult primary. After discussion with drs and research looks like neck dissection followed by rad. is the course most recommended. Any thoughts? Thank you | | | | 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 | Several things push docs towards one treatment idea or another. One of these is cancer etiology. What risk factors did he have for the disease? If tobacco is out of the picture, I would want them to take the tonsils at the same time and do pathology on them. A patient that is intraorally occult, with positive cervical unilateral nodes, (based on clinical experience at Johns Hopkins) has a high probability of having the tonsil contain the unknown primary. While tonsillectomies for kids are no big deal, for adults it is a bit more involved. The JH experience found patients that presented like this, when bilateral tonsillectomies were performed prophylactically, they found SCC in one of the tonsils in about 70% of the patients that were visually occult. This could change treatment protocols, and that tissue excised at surgery (tonsil or cervical) should be typed for HPV by PCR testing. Some institutions are doing chemo /rad and that can be simultaneous or neo adjunctive. It would be helpful to know more about what you have been told at this point, staging etc, and where you are being treated to help in giving you useful information. We all wish you the fastest and most successful path through this treatment process.
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: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | "OCF Canuck" Patient Advocate (1000+ posts) Joined: Sep 2006 Posts: 1,357 Likes: 5 | Hi. Welcome to the board and I am sure you will get to know many and get the advice you need. At this point I'm not sure what the diagnosis means - what is "occult primary"? I have had radiation to the mouth/neck twice - once to each side, but I think your question is whether the course of treatment is appropriate and I am not the one to answer that or you.
Thankfully we have many knowledgeable people here who hopefully will be able to answer. If you ahve questions about the radiation itself, perhaps I can help with that. In the meantime, take care - you have a difficult role as a caretaker, but know the patients do appreciate it.
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | Joined: Jul 2008 Posts: 507 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2008 Posts: 507 | Please be sure all possibilities have been explored to find your husbands primary tumor. For reference, I had several scopes, a PET/CT, Hi-res CT, Sonogram and Surgical Exploratory with biopsies concurrent with the Selective ND. Normally a Comprehensive Cancer Center can find the primary and if not is better equipped to handle what will likely be more extensive radiation treatment planning (less targeted with more and broader fields which can lead to increased morbidity such as severe dry mouth and burn). Basic NCCN Guideline recommendations for an Occult Primary include a tonsillectomy, neck dissection, HPV test and depending on the staging of the lymph nodes radiation or chemo/radiation. Normally they take the tonsils with very wide margins so it takes a couple days in the hospital. I suggest you ask about a selective neck dissection since these seem to have less long term issues. Ask about advanced 360 degree IGRT systems such as Tomotherapy or Varian Trilogy, etc..) These systems can be programmed to paint the guesstimated primary target fields with radiation beamlets delivery in smaller fractions from more directions than used by most conventional IMRT systems and may substantially minimize problems during and after treatment. Good luck
Don TXN2bM0 Stage IVa SCC-Occult Primary FNA 6/6/08-SCC in node<2cm PET/CT 6/19/08-SCC in 2nd node<1cm HiRes CT 6/21/08 Exploratory,Tonsillectomy(benign),Right SND 6/23/08 PEG 7/3/08-11/6/08 35 TomoTherapy 7/16/08-9/04/08 No Chemo Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11
| | | | 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 | donna- occult= not visible or identifiable
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | And after all of this, maybe he will be told the OC is unique as I was.
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
| | | | Joined: Jul 2009 Posts: 31 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Jul 2009 Posts: 31 | I can only give my personal experience. I was diagnosed with BOT primary and cervical met. From all the reading I've done here it seems they have a tendency to go chemo and Rad if the cancer has Mets. They can come back an do the radical neck later or not at all if the rad and chemo worked well. The problem with surgery is that it delays radiation. It;s a catch 22 situation. Your at a perfect jucture for a second opnion.
Rick
Age 50 at DX July 13 2009. T1N2BMO, stage III BOT-2 nodes right side, HPV negative, drinker-smoker, cisplatin x 3 IMRT x 39 70 GY, pegged and ported. Started treatment on 8-3 2009. Selective neck disection 11/30/2009, 9 nodes removed-neg pathology
| | | | 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 | Wife, I was originally told they thought mine was an OP but they put me under and were planning to do a biopsy of my BOT and then take my tonsils because they wanted to find my Primary. Luckily for me they found mine in my BOT and stopped. Also Moffitt did not believe in my case it was necessary to do a ND pre rad and chemo opting to save that procedure only if I needed it post Tx which I did not and I'm glad I didn't. I saw 5 different cancer docs before deciding on Moffitt a CCC http://www.oralcancerfoundation.org/resources/cancer_centers.htm and their Tx plans differed drastically from cancer doc #1 to Moffitt #5. So IMO I would get other opinions especially from a CCC.
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: Sep 2008 Posts: 711 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2008 Posts: 711 | Hello and welcome. Here's how they found my op. ENT took samples of several areas where he thought it might be which was just in and out surgery. When he found it was on the tonsil he said there was no need to remove the tonsils as the radiation treatment would just burn them away. Seems to have worked that way.
David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer. And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer. May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
| | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Dec 2008 Posts: 1,004 | Hi Wife....welcome to OCF. There are many people here that are educated enough to answer your questions. I am not one of them:) I had tongue primary and have only been treated surgically.
That said...I know a lot of people have radiation. It's a long road and is not easy. He will need your support and help. WendyG and her husband Steve have just gone through treatment. Wendy has a blog called "My Steve" and it is an inspiring story.
Good luck to you and your husband. We are here for you.
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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