| Joined: Feb 2004 Posts: 598 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Feb 2004 Posts: 598 | I had a PET/CT scan prior to treatment, then one about 3 months after treatment, and again at 5 months, due to what turned out to be false positives.
I have ongoing appointments with my MO, RO and the Surgical Oncoloogist/ENT. The first year I was seen every 90 days by each doctor, staggered so that I saw somebody every month. This year, they have extended a bit to every four months, which staggers out to about 6 weeks between appointments. The surgical oncologist/ENT, and the RO do extensive examinations of the head and neck. The MO does a more cursory examination, but I have a blood draw every visit with him, and a Chest X Ray every other visit. He also does a more thorough examination of lungs, abdomen, etc.
All in all, I feel I am pretty well prodded, poked and otherwise assessed on a regular basis. ;-)
Jeff SCC Right BOT Dx 3/28/2007 T2N2a M0G1,Stage IVa Bilateral Neck Dissection 4/11/2007 39 x IMRT, 8 x Cisplatin Ended 7/11/07 Complete response to treatment so far!!
| | | | Joined: Nov 2007 Posts: 212 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Nov 2007 Posts: 212 | Gabe,
My doc does an ultrasound of my neck before every follow up visit. He says the technicians at MDACC are so skilled he thinks that is a better protocol to follow in my case since my tumor was not an aggressive type. It works for me...
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 | Thank you all for your input on follow up examinations. The 2008 updated guidlines also further clarifies for me what follow up exams should be performed for my Dx. I will print out your replies and the relevant pages for my Dx from the protocols and take it with me when I have the 2 year check soon. Karen, how is your husband doing now and did you get any further information from the surgeon re no chemo or radiation required? Cheers 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: Oct 2008 Posts: 37 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Oct 2008 Posts: 37 | HI! I need to choose a place for workup and treatment.I live in Cincinnati, OH and have heard horror stories about our local University Hospital. I am seriously looking at going to M.D. Anderson in Houston for workup and surgery even though its a lot more work. Have you ever heard anything less than excellent about the level of care and outcomes from M. D. Anderson?
Thanks.
Mike
DX SCC right lateral tongue 12/01/08 | | | | 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 | Please go to the additional resources page of the main web site. One there choose the topic heading that says databases. One of the very first listings there is a link that it titled, "best hospitals". You will now be taken to a list of the top 50 cancer hospitals in the US, updated every 6 months. MDACC is at the very top of the list. If you read through how they come to their listing order, there are many factors, not the least of which is survival rates. In all this, two things to remember. One that the disease is very unforgiving of half measures, or incomplete primary treatments. The second is that you only get one chance to make the best choice that you can. If you choose MDACC there are inexpensive fully equipped apartments for rent right next to the hospital that social services can hook you up with for the couple of months you will want to be there if you do not have family or friend in the immediate area. For me that was the hot set up. The top ten are full of hospitals ion the east coast if you have family in that area, any one of which I would feel good about going to. I was diagnosed in November and went through treatment in Dec and Jan with a return for surgery in Feb. Winter in Houston is way better than winter in the north east. I went to treatments in jeans and a T shirt.... way better than slushing though a couple feet of snow... and cheerier to be in during a depressing time.
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: Feb 2004 Posts: 598 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Feb 2004 Posts: 598 | Wouldn't argue with MD Anderson, but also check out the Arthur C. James Cancer Hospital & Solove Research Institute in Columbus. They have an excellent reputation, especially in Head & Neck cancer. I have been very pleased with my treatment and recovery course, and know several long term survivors.
Worth a look. Jeff SCC Right BOT Dx 3/28/2007 T2N2a M0G1,Stage IVa Bilateral Neck Dissection 4/11/2007 39 x IMRT, 8 x Cisplatin Ended 7/11/07 Complete response to treatment so far!!
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | I must agree with Jeff. The James Comprehensive Cancer Center is one of the better Cancer Centers and we can't leave out Cleveland. Another closer Hospital for you is the Wheeling Shiffler Comprehensive Cancer Center in Wheeling, WVa at Wheeling Hospital.
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: 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 | Maura Gillison from Hopkins is moving to James the beginning of January. They have recently received a huge long-term endowment and are recruiting the best from institutions all over the US.
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 2008 Posts: 72 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Nov 2008 Posts: 72 | Please emaile me your reasons for not going to Cincy...I was recomended to go there and I am scheduled onthe 22nd for my partial glossectomy & neck dissection.
*Shaylynn* 11.25.08 SCC of tongue diagnosed @ age 23 T2N2cM0 12.20.2008 Partial glossectomy & left neck dissection. Clear margins. 6.24.09-Pet Scans show 2 areas of concern 8.5.09-Recurrence-Perotid Gland and swollen node removal 9.29.09 Carboplatin & Taxol x8 Tomo x39 11.19.09 WILL COMPLETE TREATMENTS!
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