| | 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 | I went to Moffitt in Tampa.
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: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 716 | UPA & Fox Chase are up there, another great place is Cancer Centers of America--I was unable to get in that one, but by the time I was trying the cancer was rapidly growing. I was treated at LVH--Morgan Cancer Center, Allentown Pa. I was more then pleased with my RO, MO & ENT. When I was in the Hospital due to dehydration he stopped them from putting a PEG in--He was like whoa, slow down..Let's find the problem, the kid didn't come this far then all of sudden need a PEG. It was the Fentanyl patch that was making me nauseous and unable to keep anything down & he caught that when no one else did. In NY there is Sloan Kettering and you can't get a better ranked tx center. But, Philly has a lot of good places.
7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | OP Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Thank you Ray. That is what concerns me. I have on and off ear and tongue pain. Was your constant or did it come and go? I told my doc this a couple weeks ago and she didn't seem too concerned. I go to see her again next Monday so I'll see what she says. What kind of test did they do to determine the tumor? Was it visable to the eye?
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:)
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | OP Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | I just saw your last post. I like FCCC but I feel like I'm pain to my doc. I worry a lot. I just need to know that the pain I have is normal. Something tells me it is not. During my treatment I have had times with no pain. So now that it's back I'm not a happy camper.
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:)
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Suzanne,
I had my surgery at FCCC and still, go there for follow-ups. I am on an 8 month recall now and get a chest x-ray once a year. I was treated by Dr. R., who I am sure is the one you see.
If you want to discuss anything about him or FCCC, send me a regular email.
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: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 716 | Suzanne,
My tongue pain started late November 2007, my regular Doctors were not concerned. They all said it's nothing, I had no sore and my tongue would only hurt in that location when I ate spicy foods. Later, other products would bother that location. Then a sore developed, then an earache that was persistent and eventually it felt like my teeth were going to fall out. The tooth pain would come and go. Long story short, after my surgery and the tumor was removed--earache and tooth pain was gone and I was able to eat spicy food again! Radiation took care of that...
Stay on top of it...I would get another opinion. Others here would have more info but I believe a brush biopsy is another option.
Thomas Jefferson is another good hospital in Philly.
A nurse associated with my hospital but not my ENT said that within the last two or three years she noticed a few people from the Philly region coming in to see him. If you want, PM me and I'll send you his name and office number. Allentown is about 45-60 minutes with no traffic using the turnpike. Not sure how far you are. Looking back, for a second opinion in a timely fashion I would have gone anywhere. My ENT said I should have seen him back in January or February 2008 when I had no sore visible. I found out the hard way that not all doctors even some specialists know what OC is.
Last edited by Ray1971; 12-08-2008 05:13 PM.
7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Ear pain, tongue pain and dry mouth,pain in the throat, gum pain. I wonder when it will end. Nothing has improved at all as of yet. As for Hospitals, I have been to 2 of them locally, WV University Hospital, Ohio State university James CCC Hospital .But each one did something different for me and this OC. Just love those needles biopsies when they go into the tongue or thru the neck into tha gland just below your ear. We sure do journey thru this OC.LOL
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: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | OP Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Thank you all so much for the feedback. I really feel like I can ask my questions here. This sure is a journey. Ray, what you are explaining sounds like what I went through also. Back in 2006, 2007 my tongue always hurt. I wore mouth guards and used Kanka to numb it etc and finally went for a biopsy in March 07. I went alone for the results. I never thought it would be anything. I remember being dumb founded. The nice ladies at the desk were making copies of business cards with specialists info and as I tried not to break down. As soon as I stepped outside I burst into tears. It's beena roller coaster ever since. I wish I found this site earlier!!
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:)
| | | | | 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 | Suzanne:
I was treated at Lehigh Valley Hospital in Allentown, like Ray and Susan. The doctors and nurses there are wonderful. Im very happy with all the doctors who treated me. Especially my ENT, he is the best in the Allentown area. Others here are patients of his too.
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: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Suzanne,
I was treated at Univ of PA both times and love my doctor there. However, there has been dissatisfaction expressed on this board from time to time about one of the other Drs so maybe you ran into him. You may email me about HUP if you like.
Ear pain is one of the few symptoms of oral cancer so I would not ignore it. Pain is NOT normal so you need to find the cause, be it cancer or not. What have they done to try to find the cause of the ear pain? What type of Doctor are you seeing at FCCC? Is she primarily a surgeon? Have they run any scans? I would ask for a second opinion maybe from an ENT. The two treatment centers you are dealing with are some of the best in the area.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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