| Joined: Jan 2011 Posts: 1 Member | OP Member Joined: Jan 2011 Posts: 1 | diagnosed scc left anterior tongue. had mri,pet,xray 5 days ago. T2 prolongation and enhancement aprrox 1.2cm in thickness and 2.5cm in the AP extent. My oncologist says no surgery needed. Radiation and chemo( Erbitux) will cure me. Surgeon I consulted with prior to scans said I needed major surgery - nearly half tongue taken and plastic surgeon to replace with tissue from forearm, and 4-5 days in hospital. How can I resolve which treatment is correct? | | | | 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 | Hi Frank, I wish I had an easy answer for you. Unfortunately this difficult decision is up to you. Most importantly is to be treated at a cancer center. There you will have a whole team of specialists who will discuss your case. You will want to be seen at a facility that is familiar with oral cancer. Avoid a place that sees one OC patient every couple months. You want a place that sees many oral cancer patients. Dont let distance choose your fate, sometimes the best places are close. Sometimes you need to travel for the right treatment for you. Everyone responds to medications, treatments, surgeries in their own individual way. If you are not comfortable with the treatment options or the doctors, go for another opinion. Surgeons cut, thats what they do and thats what they will recommend. Whichever way you decide, I wish you well.
Right now you will want to eat all your favorites, heck with the calories. In some way your eating will be affected for a while so you will want to enjoy everything you can now.
Best of luck to you with your decision. 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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Franz
How to resolve what TX is correct? If we here at OCF knew that answer, we would be the most highly sought after medical consultants in the world. However Christine's advice will boost your odds. DavidCPA went to 5 different doctors before he was satisfied (he did just radiation and chemo with no surgery). My surgeon advised me to do the radiation and chemo first since she could always do the surgery later. But both DavidCPA and myself had base of tongue cancer and not anterior tongue cancer. Some studies indicate different TX (although I just posted a link on how most studies are flawed) A second opinion at a CCC can be done electronically now or by mailing out CDs and DVDs. Please get your MRI/PET/Xray results sent to a CCC for their evaluation. Your doctors have an ethical obligation to cooperate and don't worry about hurting their "feelings". No competent surgeon or oconologist would be offended, in fact they would welcome independent verification by a CCC of their recommendation. I know it's a real pain and you don't feel like it, but if you are not at an NCI designated Comprehensive Cancer Center, then you should at least get their opinion. Don't be fooled by commercial frauds with big TV and radio ads like Cancer Treatment Centers of America, the American Cancer Website has pages of rueful patients posting about how they were tricked by CTA plus CTA was cited by the FTC for fraud in making up their success rates. Charm 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,219 | Franz,
Taking the advice above into consideration, your best bet would be to get an appointment at MD Anderson, which is one of the top CCC's in the country. I know that texas is a big state and you may not be close, but it will be well worth any travel that you need to do.
Note in my signature that I had surgery only. No radiation and no chemo. However, my tumor was small and I did not require reconstruction. I had a 2 cm radius section removed from the side of my tongue in order to get clear margins.
All cases are different, but as stated above, you should get the opinion of a team of specialists.
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"
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