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#84375 11-17-2008 08:07 PM
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What am I supposed to do to follow up. How many months for exams. How many months for CT/PET. And with which doctors. For example, the choices might be the radiation oncologist, the oncologist, and the ENT.

BTW, the reason I am asking here is my phone calls are not being returned. So if there is a guideline here, I'd like to know. I'm tried of trying to find out info from the doctors.


Squamous cell carcinoma base of tongue. Lymph involvement unclear; staging placed at "2 or 3." Biopsy 4/18/2008. Treatment: IMRT every day for 7 weeks. Cisplaten once a week to sensitize cancer to radiation. Treatment ended 7/16/08. PET/CT shows no more cancer.
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This could vary by stage/type of OC and how it was treated. I can tell you that I see my rad. oncologist and med oncologist every 6 months. My ENT wants to see me every other month unless I have a problem. Unfortunately I end up seeing him every month. Dentist is every 3 months.


Christine
SCC 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 smile
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Right now I see my Radiation oncologist every three months, my Medical oncologist every six months, and my ENT every 6 weeks. I know I'll see my ENT every 6 weeks for the first year, every two months the second, every three months the third, and then every six months after that. I'm not sure what happens after 5 years, we'll see when we get there! But I guess every doctor is different with their preferences and such, so you would definitely have to talk to your doctors to get their preferences.


Stephanie, 23, SCC on the right side of my tongue, surgery on 5-19-08, over half my tongue removed, free flap constructed from my forearm, bilateral neck dissection, one positive node. Radiation (32) and chemo (carboplatin) started on 6-16-08. Recurrence 4/09 in lungs.

**** Stephanie passed away 12.15.09.... RIP our dear friend****


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Andrew
I am sure, for many reasons, this varies, but the NCCN guidelines show in the first year that you should have an exam at least every three months.

My ENT said eventually I would just be seeing him. Our appointment is monthly for the first year, and he will order my PET/CT scan about every six months during the first two years, then at least yearly through the fifth year

In the second year, appointments will be every other month. then they become quarterly and at some point twice a year.

The NCCN guidelines do not seem to specify a PET/CT scan frequency after the post TX three month follow-up scan.

http://www.nccn.org/professionals/physician_gls/PDF/head-and-neck.pdf


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

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I was seen every 3 months for the first year by at least one member of my team, sometimes all three. My second year it was increased to every 4 months but usually only one member got to see and scope me!! LOL and now I have graduated to every 6 months and I now only alternate between my RO and my cancer surgeon but they still want to do the scope thing. I even kind of miss the more frequent appts because I enjoy talking to them and finding out what's new at Moffitt. I would be a volunteer except they are located 40 miles one way from my home and I have to go thru the City of Tampa to get there. UGH


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.
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Thanks for the responses. In the routine follow-ups, what is the doctor supposed to do. My only follow-up so far has been with the radiation oncologist. He examined my throat with a dental mirror. I asked him about the scope, and he said it was broken. Then he told me everything looked okay. So I contacted the onco dentist ans asked if there is any way to see the base of my tongue with a dental mirror. He said "no." IOW, I had no exam, but the doctor led me to believe I did.

So I found an ENT on my own to get my throat examined. I asked what the next step should be and he said to see the radiation oncologist in 6 weeks. I told him about the dental mirror, and he didn't seem to be bothered by another doctor looking at the throat with a tool that can't see it. He told me to see him anyway.

Thoughts?



Squamous cell carcinoma base of tongue. Lymph involvement unclear; staging placed at "2 or 3." Biopsy 4/18/2008. Treatment: IMRT every day for 7 weeks. Cisplaten once a week to sensitize cancer to radiation. Treatment ended 7/16/08. PET/CT shows no more cancer.
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Docs may be reluctant to rat out other Docs -- That's my thought!


Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
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I was seen every 6 weeks in my first year by the H&N surgeon, MO and RO. 2nd year was every 3 months. Years 3-5 was every 4 months. I am now seen by the RO annually, MO and H&N surgeon every 6 months (or sooner if I suspect a problem) Basically they followed the NCCN guidelines. My H&N surgeon is my PCP. The MO manages my blood chemistry.

I am sort of shocked that the doctors didn't tell you the post Tx exam protocol.

Are you sure it was a dental mirror? ENT's have special mirrors that they use and they also heat the mirror to prevent fogging. They can visualize down to the vocal cords with those.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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My experience is similar to Gary's. The three docs (ENT/Surgeon, RO and MO) had me on a bi-monthly schedule for each of them, which really meant, in practice, that I saw one of them every 3 - 4 weeks. This year it is every three months, which means I see one of them every 5 - 6 weeks. Next year it will be 4 months, then 6 months for years 4 and 5, and annually after that.

My ENT/Surgeon prefers the heated mirrors and light to the scope. They can visualize the base of tongue with the mirrors. According to him, he gets a better overall view with that. The narrower field of view with the scope can result in missed areas. He will use the scope if there is a particular area of interest that the mirror shows.

My RO uses what I term sort of an intermediate step -- he uses a rigid endoscope to visualize the area.

Either way, I am confident I am getting a thorough once-over. I would certainly demand the same from your team!


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!!
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The ENT I saw told me I didn't need to see him again for 6 months. The RO told me nothing about follow-up. The oncologist doesn't look at my throat.

What type of exam should I expect, and from which doctors.

Last edited by Andrew111; 11-19-2008 07:01 AM.

Squamous cell carcinoma base of tongue. Lymph involvement unclear; staging placed at "2 or 3." Biopsy 4/18/2008. Treatment: IMRT every day for 7 weeks. Cisplaten once a week to sensitize cancer to radiation. Treatment ended 7/16/08. PET/CT shows no more cancer.
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