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#186082 10-21-2014 03:32 AM
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Shariff Offline OP
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Hi Friends, May I please ask you some help. My Dad in INdia and been diagnosed with Carcinoma Tongue Cancer. We underwent Chemo+Radiation 30 sessions two months ago in Adyar Cancer Institute chennai. Now after 2 months he has got recurrence again in his neck. Doctors advising not to go for Radiation again as it might give more side affects and not suggesting for the surgery either. Basically asking to take pain killers if he gets any pain. But what steps to avoid the cancer from spread.Not giving importance and very lethargic here. PLease give me someother options to try and Im badly in need of help.


Father 62:Non-Smoker/Non Drinker/ Non- Veg/ Carcinoma Tongue / Biopsy 25 May'14 / Radiation+Chemo 25 June till 8 Aug'14 /Next Visit 5 Sept Consultation - Normal / 5 Oct'14 Consultation - Pain and recurrence of small tumour in neck / Re-radiation = NA /
Shariff #186083 10-21-2014 04:29 AM
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Im so very sorry to read about your father. The only options to eliminate the cancer are surgery and radiation. Even chemo by itself will not get rid of all the cancer.

After just finishing radiation, it would be too difficult on the patient to go thru more plus all the side effect it causes are too much for anyone to handle. Radiation causes so much collateral damage to the body that we can only have so much in our whole lives.

Is it possible to go for other opinions in your country or to another treatment facility. Here in the US we have the major comprehensive cancer centers (CCCs) where they are the US's top hospitals and treat with a multidisciplinary approach.

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
Shariff #186085 10-21-2014 07:24 AM
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HI there... tongue cancer (I am assuming it is oral tongue cancer - not base of tongue - which is down the throat...) is normally treated by removing the tumor in the tongue surgically, then usually a neck dissection is added as a preventative to remove a certain number of nodes. Most drs can predict - for the most part - which nodes should be removed. This is what your father's dr. didn't do that he should have.

Radiation is very effective against HPV related BASE OF TONGUE cancer (the one that is found down his throat) But oral tongue cancer can be tricky. Radiation and chemo in this instance are usually used after surgery.

This is a moot point now as they have already done the radiation. I would first want to know if the radiation was to just his head only (just his tongue?) or if the neck was included in the spray radius. If it wasn't he could be re -radiated. However, Ideally they will remove the nodes by doing a neck dissection and wait and see if that does the trick. It's harder for radiated skin etc... to heal however, this surgedry is often done if there is a recurrence in the neck (generally called salvage surgery).

Chemo will NOT cure this cancer, he should have surgery or be re-radiated (with chemo).

He should also have a chest CT to see if there is anything in his lungs as this is where the cancer likes to travel to after the nodes. (not always but a lot of the time)

Hopefully, his chest is clear and they schedule him for surgery ASAP. Mind you at this point because of the radiation, there may be some hot spots on his CT or MRI.

How have they determined it's in his neck? Was it confirmed by biopsy?

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
Shariff #186093 10-21-2014 08:22 AM
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Welcome to OCF and sorry about your father. As mentioned surgery and radiation are the only treatments to KILL cancer. Chemo can be used to manage the disease, meaning that tumor growth can be stopped or slowed and even reduced. It will remain but controlled and allow for longer quality life.

This is no certainty but it is an option so demand some discussion about this option. Sending him away with pain meds is doing nothing to treat the cancer in any way.

Good luck.


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
Shariff #186125 10-22-2014 10:19 AM
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Sharif, I would second the suggestion to get a second opinion. If you father has had a lot of radiation, the doctors may be reluctant to give him more because of possible effects on the spine. Could he at least have some chemo to help control the tumour? To not treat him at this point means his condition will degenerate for sure.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
Shariff #186128 10-22-2014 11:35 AM
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The longer the time distance is from the completion of radiation treatment the more of a chance reirridation would be considered is just one aspect for its consideration. I heard of a minimum of 6 months to a year, somewhere along my travels. Although, boost dose Brachtherapy may be given after external beam radiation, in certain cases, a short time thereafter, like a week, in places trained in this procedure.

Surgery is often the first line treatment for a recurrence, with or without radiation, addition of chemo, if not, palliative chemo, targeted therapy, for the time being, as mentioned.

See about a 2nd opinion, and good luck.



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






Shariff #186133 10-22-2014 04:01 PM
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Hi Shariff, I'm sorry to hear this.
I too strongly recommend you get your Father to another treatment centre for another opinion.
My husband had a recurrence after he completed radiation and Cisplatin chemo.
His only option then was surgery. He had extensive "salvage" surgery and 31 months later is well.
Wishing you and your Father the best.
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
Shariff #186148 10-22-2014 11:25 PM
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Shariff Offline OP
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Initially in the first hospital (where the initial biopsy was taken) they recommended for the Surgery however we were informed that the Tongue will be partially removed and the jaw muscle where the tumour is located will also be removed and they did not give any assurance about the survival and a bit harsh. The next visit in the Adyar Cancer Institute informed that they can give radiation/chemo and he can survive without a surgery for couple of years and if required the surgery will be done thereafter. It is actually in the base of his tongue and going to the neck. The tumour is in the base of the jaw below right molar. 5 tooth have been removed for radiation. And now after recurrence they are not willing to do the surgery suggesting him to look for other Private hospitals for the surgery.

We are trying to consult another Oncology surgeon for a surgery opinion. But my doubt is, Is it advisable to perform the surgery now or will it affect more ?




Father 62:Non-Smoker/Non Drinker/ Non- Veg/ Carcinoma Tongue / Biopsy 25 May'14 / Radiation+Chemo 25 June till 8 Aug'14 /Next Visit 5 Sept Consultation - Normal / 5 Oct'14 Consultation - Pain and recurrence of small tumour in neck / Re-radiation = NA /
Shariff #186153 10-23-2014 06:57 AM
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Ideally you should have gone with the initial surgery. I am not sure what you mean by base of tongue? Under the tongue? Molar related and jaw is all in the oral cavity. Therefore it is highly unlikely it is HPV related. To this end surgery would have been the correct choice from the outset. I have had 1/3 - 1/2 of my tongue removed and rebuilt with a graft from my arm, and 40 lymph nodes removed from my neck. Of all of the things done to me this was the easiest to recover from. I speak fine, eat fine, my neck is good but a little numb, and my shoulder (they do cut the neck muscles usually) works perfectly now. I am not sure what the drs were going on about with regards to the inital surgery but ideally with this cancer they remove as much as they can hopefully get clear margins, and then if need be they do radiation and chemotherapy 5-6 weeks after. These are the american standards for this type of cancer. Base of tongue (which is actually down your throat - is usually only treated with radiation and chemo first. Knowing the cause of his cancer HPV or not - is usually helpful in making this decision.

Molar, and jaw involvement can be a little more invasive where surgery is concerned but a good ENT and good plastics guy can do an amazing job.

All this is a moot point as what is done is done, so my advice is find the top cancer center and push for surgery. 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
Shariff #186278 10-30-2014 12:20 AM
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Shariff Offline OP
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Apologies if I was not clear. It is under his tongue.

The hospital where we took radiation and chemo was not willing to perform the surgery.Hence We took second opinion from Apollo Cancer Hospital in our city. Initial doctors told that they will do the surgery if its only applicable to do and asked to perform Endoscopy. Endo went okay and they told it may be okay for sugery but further asked to take a PET scan to see if its affected in any other location. We went for a PET and came to know my father also has another small tumour in one of his cheek. Now doctors are saying it is not possible to perform the surgery as it is spread to another location.

Also his initial cancer under the tongue is spread inside to his throat and surgery will be much complicated as they might have to remove the voice box and full tongue making the surgery option unavailable. Now they are suggesting to meet Cheif Chemo doctor and will provide chemo for 8 cycles (one each week) and see how it goes and also will prescribe meds to control the cancer.

Totally Frustrated. Fighting hard to save my Father!!!


Father 62:Non-Smoker/Non Drinker/ Non- Veg/ Carcinoma Tongue / Biopsy 25 May'14 / Radiation+Chemo 25 June till 8 Aug'14 /Next Visit 5 Sept Consultation - Normal / 5 Oct'14 Consultation - Pain and recurrence of small tumour in neck / Re-radiation = NA /
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