| | Joined: Nov 2013 Posts: 1 Member | OP  Member
Joined: Nov 2013 Posts: 1 | Hi all,
We just found out that my wife has a squamous cell cancer at the base of her tongue near the left tonsil. it's 2cm now, no lymph involvement, no other lesions. We are going to City of Hope and USC (being in SoCal). We were told by the first doc we saw she needed transoral robotic surgery (TORS). Apparently the best place for that is UPenn Medical but she'd rather stay close to home. Any suggestions about what/who in Los Angeles area?
Thanks. | | | | | Joined: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2013 Posts: 559 Likes: 1 | Hi Ufe
Welcome to a new really big family of super supportive people. It's large enough that someone will know the answer to all your questions. Unfortunately that person isn't me.
I have SCC of the left tonsil, same size and no lymph node involvement as your wife. They just did standard surgery on me (not TORS) and now I'm in radiation.
I know at least one other person here who had TORS, so maybe she will chime in later.
Again, welcome.
Tony
Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)
09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Not sure if it's. CCC, but she should be at one of it isn't. They should remove her tonsil if it's involved but usually the treatment for base of tongue cancer is radiation and chemo. Christine will likely post the list of CCCs I know some people want to stick close to home during treatment but this is cancer she should go for the best possible treatment - no matter how far away it is. Hugs.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | You have found the best place to get info and learn about your disease and how its treated. Educate yourself so you know what to expect and how to advocate for yourself. There is so much to do to prepare for treatments. Best thing you can do is to be treated at a comprehensive cancer center (CCC). At a CCC they will use a team based approach, all the specialist get together to give their treatment plan so everyone is on the same page. At the very least go to one for a second opinion. Very likely your treatment will be surgery with radiation and/or chemo. Just remember whatever specialist you are talking to (when not at a CCC) will always recommend their specialty (surgeons always recommend surgery, RO will always say you need rads, etc). Take your time to read and absorb info from OCF so you are an informed patient and a strong advocate for yourself. Check out the main OCF pages too. There you will find all the info you are asking about. There are sections for treatment, radiation, etc. Of course we are here to help you along. Right now you need to focus on your intake. You should be eating everything you like and not worry about gaining weight as you will lose some during treatments. You should get a hearing test, full bloodwork including thyroid. Line up helpers. Nobody gets thru this alone so anyone who offers to help, write down their name and contact info. Tell them when the time comes you will call on them. Call the American Cancer Society, ask for a driver to take you to rads, and either $300 towards travel expenses or in the form of a pharmacy voucher (its ok to use for co-pays). Two important things to remember thru all of this are everybody is different and will respond in their own unique way and the only thing you can control is the daily intake. Every single day you needs a minimum of 2500 calories and 48 oz of water.... NO SKIMPING! If you skimps one day and think its ok that you can make it up the next, you are wrong and will quickly fall into a cycle which can lead to dehydration and malnutrition. On chemo days and the few days afterwards push to take in extra water to flush the poison from the kidneys. When treatment begins, If given cisplatin chemo, pay very close attention to your hearing. If you notice even the slightest change inform the doc immediately. Cisplatin (very common chemo for OC patients) is known to cause high frequency hearing loss which is permanent. Those are just a few things to start with. We will be here to help you get thru everything. Lean on us and we will support you. List of Top Cancer Centers
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | Joined: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,406 | City of Hope from everything I've heard is a top place to be. But if they don't offer TORS and that's what you're looking for, I found this link: http://davincisurgeonlocator.com/search.htm?language=eng&location=los%20angeles&newlocation=34.0522342,-118.2436849&country=0&state=0&distance=0&disResultFor=SurgeonsOnly&surgSpecialty=90076&surgicalProcedure=15 If it doesn't work try going here: http://www.davincisurgery.com/da-vinci-head-and-neck/
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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