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#181828 05-19-2014 11:50 AM
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Hi I was wondering does anyone know if oral tounge cancer can get smaller i have a small bright red and white spot on tip of tounge like the size of the tip of a pin, but like a week ago it was the size of a tear drop and was a clear gray color I could feel more of the bump on my tongue then, and now I can barley feel it plus it has never hurt so don't think its a canker sore ? .so I was worried it could be cancer I don't drink and have not smoked in 4 years I only use the e cigg so does any one no if cancer can shrink and get smaller with out medical treatment? If this is not the right place to post please let me know thank you


Js
jbms #181833 05-19-2014 01:43 PM
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Oral cancer will not decrease in size unless it is being treated with one of the conventional methods like surgery, radiation with or without chemo.


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
jbms #181845 05-19-2014 06:34 PM
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Thank u very much:))) this bump on tongue started greyish white and tear drop size and now its way smaller and white with red it was just making me nervous cause ok leukplakia and darn google . so hearing that oral cancer wouldnt strink with out help makes me relived .and I hope that you have a wonderful always cancer free future smile


Js
jbms #181989 05-27-2014 06:42 PM
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I know this is a little bit older of a post, but jbms, if you get a chance you really should have it checked out as soon as possible. It could be nothing, but my tongue cancer started out as a series of recurring (or at least what I thought were recurring) canker sores. It wasn't a canker sore obviously, but the pain came and went so I thought that it was healing in between. They put me on antibiotics at first and all of the red irritated part went away except for a small white patch. I know oral cancer isn't supposed to decrease in size but I swear that mine did. Right before I went in to get my biopsy (to try to calm myself down) I was thinking to myself "gee, thank goodness my sore is less raised right now than it was two days ago, because like people have reassured me, cancer doesn't do that." So go get it looked at just in case. Even if it is smaller now than it was, if you still have it and have had it longer than 2 weeks, go get it checked out. I wasn't expecting it to be cancer but luckily freaked myself out enough by using Dr. Google. I'm glad that I did in this situation!


3/2014: 25, no risk factors (nonsmoker, rare drinker, HPV negative) SCC right lateral tongue, T1N0M0 - well-differentiated; surgery - removal of tumor, salivary gland + neck dissection
11/2017 - ovarian torsion
12/2018 - basal cell skin cancer



jbms #182100 06-02-2014 06:43 PM
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Thank u so much iam going the 9th to a ent my doc does not think it is cancer but she said she still wants me to go so iam and iam scared frown and what iam I to exspect my first visit my doc said she was sending me for a biopsy with a referal but when I called to make appomiment did say anything about that ? And if its the size of a swollen taste bud is that good on catching it early ?


Js
#182102 06-02-2014 07:19 PM
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Hi I was wondering what to exspect from my visit on the 9 th to a ent for my tongue that went from a grey blister thing starting 5/5/14 to a small bump the size of a taste bud 5/15/14 and is still there and has never hurt? What will he do? Are what would be the normal my doc wrote a referal she dont think it is cancer but wrote a referal that says eval &treat so don't know what means biopsy, just look at it , give me meds , what do they usually do first time for this?


Js
jbms #182105 06-02-2014 08:07 PM
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I'm not sure there is a standard answer, especially not knowing what part of the world you are in. I believe these are questions best directed to your doctor that wrote the referral. Generally, there are some standardized diagnostic processes that would include a biopsy.


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
jbms #182108 06-02-2014 09:01 PM
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In tucson yea. I was so scared what she was going to say that day I didn't even think to ask but she don't think it is cancer but as the saying goes only a biopsy tells but iam so nervous my insurance sucks I have a 7 month old who adores his dad just thinking of all the bad things I guess and what ifs any pointers on how to relax about it ?


Js
jbms #182111 06-02-2014 09:22 PM
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A biopsy is important so your ENT should definitely do one make sure this dr. Is very familiar with oral cancer - some aren't and miss the signs. Hugs


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
jbms #182112 06-02-2014 09:24 PM
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If you tend to worry about a lot of things, I'm not sure there is a quick answer. Keep busy so your mind isn't idle would be what I would offer. Keep your mind settled and in a good place, as best you can.

Whether it is confirmed or not on the biopsy, it's definitely a stressful situation. Hang in there, the time will come soon enough and give that baby a big hug...often!


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
jbms #182119 06-03-2014 05:00 AM
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When is your appt?


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.
jbms #182120 06-03-2014 05:01 AM
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It's normal to be scared but it's better to know what it is.


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.
jbms #182129 06-03-2014 08:43 AM
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Thank you all so much I will try hard to not worry keep my mind on my son and wife and david my appt is monday the 9th


Js
jbms #182132 06-03-2014 09:59 AM
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Some drs will do the biopsy on the spot (depending on the size of the area) some will book a follow up date for a biopsy. It's not too bad. It really depends on what they remove. If it's a small area it will be sensitive to painful for a few days after the freezing wears off. If it doesn't heal after a few weeks that's not a good thing, but by then you should also know the results of the biopsy - they usually take 8-14 days. depending on your dr. the hospital etc..

best of luck.


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
jbms #182141 06-03-2014 02:33 PM
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Ditto, the advice to just try to stay diverted and engrossed in other interests. The waits are always difficult but pondering the possibilities only makes it worse. Easier said than done but try hard. Monday is not far away and the test results come back promptly if even ordered. It could very well be something that is identified as benign. Good luck, Don


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
jbms #182143 06-03-2014 03:58 PM
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Hi jbms, I just sent you a Private Mail the answer you are looking for.

Look for the flashing icon beside "My stuff." click on that and choose "messages."

(then smile and say "Gee, ain't technology wonderful..." smile



My intro: http://oralcancersupport.org/forums/ubbt...3644#Post163644

09/09 - Dx OC Stg IV
10/09 - Chemo/3 Cisplatin, 40 rad
11/09 - PET CLEAN
07/11 - Dx Stage IV C. (Liver)
06/12 - PET CLEAN
09/12 - PET Dist Met (Liver)
04/13 - PET CLEAN
06/13 - PET Dist Met (Liver + 1 lymph node)
10/13 - PET - Xeloda ineffective
11/13 - Liver packed w/ SIRI-Spheres
02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node
03/15 - Begin 15 Rads
03/24 - Final Rad! Woot!
7/27/14 Bart passed away. RIP!
jbms #182164 06-04-2014 09:32 AM
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Thank u everyone for being so helpful it means a lot to me u guys and gals are great and bart iam going to read my mail right now thanks again everyone I will kerp u all up to date


Js
jbms #182165 06-04-2014 10:26 AM
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Thank you all so much I will keep u all upto date


Js
jbms #182312 06-09-2014 10:42 PM
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Today got my biopsy doc didn't think it was cancer but said it could be a virus assioated with cancer which I can only think of HPV or there any others ? So like I said doc does not think it is cancer something about size biopsy hurts like hell he used some sort of tong thing cut it then satirize the wound ouch so he said a week then call for results and we shall see thank u guys for the support


Js
jbms #182317 06-10-2014 05:07 AM
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Visually, the doc can only guess which is what he is doing. The biopsy will tell you for certain what it is. Best wishes!!!!


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
jbms #182320 06-10-2014 05:30 AM
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We hear some really foolish comments on this site and this.... doc didn't think it was cancer but said it could be a virus assioated with cancer... ranks right up there with the best of "Dumb Things Doctors Say". First off as Christine points out no doctor can visually tell if something is or is not cancer, only the pathologist can do that and second IF this is a "Virus associated with cancer" like HPV then it is cancer and must be treated just like non HPV SSC.

Welcome to this site and do keep us posted.


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.
jbms #182324 06-10-2014 07:59 AM
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Kudos david... um firstly the only virus I know of that is associated with Oral cancer is HPV. Location on your tongue --- HIGHLY UNLIKELY it's HPV related. HPV oral cancer usually is found at the base of tongue (down the throat) or tonsil sometimes there is an occult cancer found in your nodes with no known primary. This can mean one of two things. The initial tumor resolved itself (very rare) or it's hiding - often in the tonsil, and is discovered later.

So either you have cancer or you don't the biopsy will tell you. Your drs commentary? useless. He's playing both sides of the fence. hugs and good luck


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
jbms #182325 06-10-2014 08:00 AM
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Check my reply to your other post.


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
jbms #182397 06-12-2014 11:44 AM
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Anyone know about how long it takes for biopsy to heal


Js
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David what if it is HPV that means it is cancer ? Or would it be pre cancer ? And what would they treat that with ? Just hope monday comes fast so I can hopefully get results little bit nervous again now . I also have NF1 which I know u can grow fibromas on your tongue so myabe that's what it is


Js
jbms #182401 06-12-2014 02:47 PM
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Well since the location is not where HPV positive cancer is typically found I seriously doubt the virus is involved. Once the virus has invaded the cell, worse case it basically alters the reproductive cycle of the cell turning it to the dark side or cancer. The only way to determine if that cancer cell was invaded by HPV is to study and stain the cell looking for a specific protein. Other than other oral pre cancer conditions like leukoplakia I have never heard of any pre cancerous HPV positive SSC because I assume the virus is either killed off by our immune system (99% of the time) or converts the cell to cancer. Most/many HPV oral cancers are first discovered by a swollen lymph node and then traced back to the primary site which is usually the tonsils or the Base of Tongue.


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.
jbms #182402 06-12-2014 02:48 PM
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HPV, which refers to the Human Pamplona Virus, is a possible SOURCE of the cancer, however a diagnosis with HPV does not necessarily prove that it was, in fact, the source of YOUR cancer.

The other and more obvious sources of Oropharyngeal cancer are a) heavy drinking in early adulthood (any beyond, if such is the case,) and b) Heavy smoking during the same life-stage. There are probably more, but that's the big three sources in a nut-shell.

In this game, having an HPV diagnosis is considered to be a good thing because the perception is that HPV associated patients have an easier time going through treatments.

I hope that this clarifies things a bit. And I wish you well.

[edit for spelling]

Last edited by Bart; 06-12-2014 02:50 PM.

My intro: http://oralcancersupport.org/forums/ubbt...3644#Post163644

09/09 - Dx OC Stg IV
10/09 - Chemo/3 Cisplatin, 40 rad
11/09 - PET CLEAN
07/11 - Dx Stage IV C. (Liver)
06/12 - PET CLEAN
09/12 - PET Dist Met (Liver)
04/13 - PET CLEAN
06/13 - PET Dist Met (Liver + 1 lymph node)
10/13 - PET - Xeloda ineffective
11/13 - Liver packed w/ SIRI-Spheres
02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node
03/15 - Begin 15 Rads
03/24 - Final Rad! Woot!
7/27/14 Bart passed away. RIP!
jbms #182403 06-12-2014 02:54 PM
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Bart said "In this game, having an HPV diagnosis is considered to be a good thing because the perception is that HPV associated patients have an easier time going through treatments."

Not to put words in his mouth but us HPV'ers suffer just as much as your non HPV'ers during the radiation/chemo phase of the treatment but there have been studies that proved that HPV+SCC responds better to the conventional treatment than HPV-SCC and therefore has less of a chance of recurrence which is a good thing.


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.
jbms #182406 06-12-2014 03:08 PM
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Thank you david and bart for your help like I said before not sure what it is waiting for biopsy results which they said Monday i would get which seems years away snd hoping its neither HPV or scc thank u again i will let u all know what it is Monday


Js
jbms #182407 06-12-2014 03:17 PM
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Also, studies show there is no prognostic benefit being HPV in cancer outside the oropharynx (tonsils, base of tongue, pharyngeal wall, soft palate).

http://oralcancernews.org/wp/study-...ncer-patients-to-vary-depending-on-site/


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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