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#155324 09-29-2012 09:14 PM
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In late April I was diagnosed with cancer at the base of the tongue.
I decided on Erbitux over cysplatin and underwent radiation and Erbitux for 3 months.
Now, I'm pretty sure that the cancer is back even though I had a clean up-the-nose-down-the throat scope exam 10 days ago.
The docs are determining if they move the PET scan closer than the scheduled Nov 2.

I was told that there could be no more Radiation and surgery would be the only fall back. I am looking for suggestions and alternatives.

Charm, it sounds like carboplatin might be the thing for me at this point. Keep posting please.
Feeling a little hopeless and a little scared.


Squamous Cell Carcinoma base of tongue
Erbitux 12 wks
IMRT Radiation ended 8/7/12
MRI Cancer live 10/3/12
3 rounds Chemo (Cisplatin, 5FU, ??)
Brachytherapy 7days ended 1/28/13
PET SCAN 4/19/13
70 yr old 8/20/12
Walt
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Welcome to OCF! So sorry to hear you are facing a recurrence. If you just finished treatments all kinds of things can be happening in your recovery. Scar tissue can cause pain and many times members are concerned about it which turns out to be nothing unusual. I hope this is the case in your situation! Ive had oral cancer 3 times and its not easy to face a recurrence. The only treatments for oral cancer are surgery, radiation with or without chemo. As far as alternatives go, there are a million false remedies on the internet so beware!

Is there a tumor for the doctors to biopsy? When did you finish radiation? Did you have surgery?

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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
Joined: May 2012
Posts: 31
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Radiation ended early August.

No, I didn't have surgery. The tumor hasn't been visible since early July/late June.

Even as recent as 2 weeks ago the nose scope exam looked normal.

Ear nose and throat doctor is contacting radiation doctor to see if the PET scan can be moved up. Now scheduled for October 29.



Squamous Cell Carcinoma base of tongue
Erbitux 12 wks
IMRT Radiation ended 8/7/12
MRI Cancer live 10/3/12
3 rounds Chemo (Cisplatin, 5FU, ??)
Brachytherapy 7days ended 1/28/13
PET SCAN 4/19/13
70 yr old 8/20/12
Walt
Joined: Mar 2008
Posts: 3,082
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Walt

Two months after TX is still rough as Christine mentions.
Not sure what symptoms you have that make you think the cancer is back already and it could just be lingering side effects. Plus a Petscan that soon after base of tongue cancer has a high chance of a false positive which will worry you even more. Since your doctor seems accommodating, consider asking for an MRI instead. Petscans are terrific in spotting lymph node cancer and their increasing use is a major reason for the decrease in unnecessary neck dissections. But BOT cancer patients' mouths suck up as much sugar rebuilding themselves as any remaining cancer cells do and sometimes more, so remember that if you do go with the Petscan that a "bad" one may not be bad at all.
While I did have surgery when my cancer came back, I also did have radiation and chemo. The "no more radiation" doctors are generalizing about no more IMRT radiation, usually because they are not using CyberKnife or similar focused radiation. It's just a candid self assessment of their radiological ability instead of a medical fact . Actually a second dose of radiation is becoming almost standard at CCC, mine is just ahead of the curve with being able to do a third round of radiation.
Bottom line: get yourself evaluated at a CCC where if in fact your cancer has come back, you will have more options of treatment. It is not hopeless although I do agree that it is scary. Hang in there.
Keep the Faith
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
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This soon after finishing treatments means your PET may light up like a Christmas tree. There is swelling and healing sores which will look like its back. My doc explained to me that a PET should not be done with less than a 3 month window after finishing treatments, he said 4 months post rads is even better.

To ensure accuracy, rest the day prior to and the day of the scan. The day before, drink plenty of water to help flush your body and avoid carbs and sugar. These little things all add up to making your scan more accurate.


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
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
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One point everyone else didn't mention but I'll hit. Carbo, and or cisplatin is ONLY effective for oral cancer in conjunction with radiation. Likely they won't reradiate if it is back (what you're feeling in term of a recurrence may just be healing or residual fall out from radiation.) I'd push for an MRI, the only reason I say this is because of the Erbitux/cisplatin/carbo - HPV conundrum. I do believe in clinical trials but in conjunction with standard treatment not in replacement of - too much risk where your life is concerned. So if it is a recurrence so soon after I think surgery is you option, unless as charm says theyre willing to do cyber knife etc.. Good luck. I hope very much this is just a scare.


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
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Posts: 5,260
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You just heard from 2 of the best. They have been thru this and know what can occur for awhile after treatnents. I have been there too with their help and advice. Get your mind on something else and enjoy your life.


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
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Posts: 618
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Walt,

Last study I saw said PET scans read 40% false positives when taken under 12 weeks after radiation. having said that I just had one 10 weeks out and it was clear but my docs said the one they are more interested in is the one I have comming up that will be 6 months from completion of radiation. So keep that in mind if they OK the PET early.

What makes you think the cancer is back?


Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
Joined: May 2012
Posts: 31
Contributing Member (25+ posts)
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Joined: May 2012
Posts: 31
I so appreciate the knowledgeable caring advice.

I'll message my ENT doc and request an MRI instead of a PET this soon.

I'll also enjoy my day with your recommendations and presence.

I'm experiencing peace. Thanks!


Squamous Cell Carcinoma base of tongue
Erbitux 12 wks
IMRT Radiation ended 8/7/12
MRI Cancer live 10/3/12
3 rounds Chemo (Cisplatin, 5FU, ??)
Brachytherapy 7days ended 1/28/13
PET SCAN 4/19/13
70 yr old 8/20/12
Walt
Joined: Jul 2012
Posts: 3,267
Likes: 1
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
Likes: 1
It's still early. PEzt's are usualy usually done no Zearliet than 12 weeks. I hadno one at 5 months, and still showed false postive. CT and MRI are not as reactive, sensitive like the PET, which relies on glucose activity, and often times are used instead of PET, for earlier diagnostics due to high false positives in PET, as mentined. None of my cancers were ever found during my scopes, and only after a direct biopsy was done during the largynoscope or FNAB. There are other radiation, surgical techniques like laser surgery, brachtherspy, and IORT..intraopertive radiation therapy, both of which are good in previously irridatec areas. They usually incorporates resection, EBRT, possibly a flap, and maybe more EBRT after, Reirridation, robotic surgery. Hopfully, it's all clear.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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