| Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2011 Posts: 805 | We are not doctors, but why would you want to take a chance of ANYTHING getting away? You may as well go for it all the first time around as to have to do it again later. I would get a second opinion...but... just my thoughts. Kathy
Kathy wife/caregiver to: Kevin age:53 Dx 7/15/11 HPV16+ SCC Stage IV BOT/R Non smoker, casual drinker 7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11 PEG placed 9/1/11 Removed 11/8/11 Clear PET 10/12 and 10/13 and ct in 6/14 | | | | Joined: Sep 2012 Posts: 58 "OCF across the pond" Supporting Member (50+ posts) | OP "OCF across the pond" Supporting Member (50+ posts) Joined: Sep 2012 Posts: 58 | My lymph nodes are being processed in the laboratory. They will tell me in two weeks how they look like
25/09/12 - diagnosis: lateral left side tongue moderate SCC (10-15mm) 15/10/12 - operation: partial glossectomy + neck dissection 17/11/12 - operation: excision of the tongue scar (or extensive biopsy) 26 y.o., non-smoker, social drinker
| | | | Joined: Sep 2012 Posts: 381 "OCF Canuck" Platinum Member (300+ posts) | "OCF Canuck" Platinum Member (300+ posts) Joined: Sep 2012 Posts: 381 | Max, so glad to hear all went well. I had a trach in for 6 days while in hospital, and am just graduating from fluid to pur�es. My tongue feels like a giant cotton ball an of course only half s actual tongue so swallows difficult. But hey, the hardest part is over!
Take care, and I hope you have friends who can help after your folks leave
Tina Diag: Aug. 13/12 T3N0M0 50% + glossectomy and bilateral radical neck dissection, removal of nodes zones I - V Surgery October 11/12 Chemo/rad on hold due to clear margins and nodes Sept 21/13 clear CT with anomaly thought to be the artery, being watched closely. Dec 16/13 - anomaly confirmed artery, all clear nickname: "get 'r done" Plans: kick cancer's butt
| | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 5 | Hi there.. Food and healing? Well I'm a vegetarian so suggesting meat is not something I'll ever do, but protein is best for healing so my advice is to boost proteins and to do so without having to consume meat - which at this point may be a little difficult anyway - is to pick up a high quality protein shake and make a smoothie once or twice a day, add fresh fruit, flax, maybe some quinoa, and milk of your choice (I make almond at home so I use that ) but you can use regular, flax, hemp, almond, rice, soy, or kamut milks - all are high in protein. Don't add extra sugar - complex carbs are best for healing - that's fruit etc.. And stick to semi solid foods - I found mashed foods more difficult to eat and control than say - a soft omelet, or soft veggies, or pasta, Mac and cheese (for me it was vegan) . The drs were right - rads first for this type of cancer is usually reserved for super large tumors that would really effect quality of life, or cause major debilitation etc..(even then when I comes to saving a life and better survival rate they'll still suggest the surgery etc) The first line of defense with oral cancer of the tongue, (oral tongue not base of tongue) gums, cheek, mandible, palate, is usually surgery as it tends to be a more agressive cancer than HPV+ cancers of the base if tongue, and tonsil. Hoping your nodes all come out negative.  but do watch carefully if they don't offer you rads or chemo, this is a mistake they often make in thinking your clear go home, they've got it all - only to find later its back. rads is no guarantee but it does cut the chance of recurrence in half. That said keep your mouth as clean as possible rinsing etc...after very meal, this too will promote healing, and be gentle! 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
| | | | Joined: Sep 2012 Posts: 58 "OCF across the pond" Supporting Member (50+ posts) | OP "OCF across the pond" Supporting Member (50+ posts) Joined: Sep 2012 Posts: 58 | Cheryl, thanks for your recommendations! sounds like what i am eating. I squezze lots of fresh juices + make milk shakes based on ice cream.. it's yummy but contains a lot of sugars. In general ice cream is a well consumable product for me lol.. cold and soft.. i eat a lot of blended vegs - similar to soups.
i had my neck clips removed today. The doc said it is healing beatifully. BUT! Most of my left cheek and the area around the scar are numb. The doc said it could take quite a long period of time to heal (she mentioned it could be as long as 6 months) or she said it could even stay permanent. The surgeon who operated me said the surgery went well and the nerve wasn't damaged. I believe the numbness will go away after some time. But does anyone have any idea how long it may take?
I am very concerned about my post-surgery treatment. I am going to the the docs and all the team on 31st on my follow-up appointment. I need to prepare a list of questions.. would be very grateful if you could help me to ask the right questions.. There are a few questions that I have in mind.
1) how many lymph nodes have been removed. Were there any cancerous cells?
2) any risk of recurrence?
oh dear... i don't know what to ask them.. how can i make them not to make a mistake if they don't offer me any rado or chemo??
25/09/12 - diagnosis: lateral left side tongue moderate SCC (10-15mm) 15/10/12 - operation: partial glossectomy + neck dissection 17/11/12 - operation: excision of the tongue scar (or extensive biopsy) 26 y.o., non-smoker, social drinker
| | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 5 | If there is indication of cancer in any of your nodes then you may be offered rads and chemo, chances are you didn't have perineural involvement because your scc wasn't that large or deep, and unless you come back positive for lymph node involvement with possible leakage outside the node (ECE) then you will likely not have to have rads if that's the case - good - just keep an eye out for anything unusual in your neck, or mouth. Poorly differentiated Scc may also push them to offer you treatment. Hoping your all clear! I'm 18 mos out of treatment. Almost 21 out of surgery I still have a numb neck. Though I now feel my ear and cheek. It takes time and you may never regain it all but you will get better! hugs
Last edited by Cheryld; 10-22-2012 09:27 PM.
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
| | | | Joined: Sep 2012 Posts: 58 "OCF across the pond" Supporting Member (50+ posts) | OP "OCF across the pond" Supporting Member (50+ posts) Joined: Sep 2012 Posts: 58 | Hello All,
I had my appointment today.
Luckily my lymph nodes were clear.
The doc has suggested another small surgery in a few weeks - excision of top layer from the tongue scar where operation took place. They say it is similar to biopsy where they want to take a bit more tissue from the 'safety margin' and to check whether all bad cells are gone. As I understand it's more extensive than normal biopsy as it will be under general anaesthesia.
I wonder whether anyone else (especially those who haven't proceeded to radiotherapy) had similar simple surgery after the main one?
I would be keen to hear any other thoughts what people think about my treatment.
Regards
Max
25/09/12 - diagnosis: lateral left side tongue moderate SCC (10-15mm) 15/10/12 - operation: partial glossectomy + neck dissection 17/11/12 - operation: excision of the tongue scar (or extensive biopsy) 26 y.o., non-smoker, social drinker
| | | | Joined: Sep 2012 Posts: 58 "OCF across the pond" Supporting Member (50+ posts) | OP "OCF across the pond" Supporting Member (50+ posts) Joined: Sep 2012 Posts: 58 | I have been trying to think of a possible cause of my scc diagnosis.
I recall that the first symptoms were in July (severe tongue pain, difficulty to swallow, discomfort in mouth, there was no ulcer at that stage). Then all the aboeve symptoms disappeared and the ulcer appeared.
I smoked weed in June/July probably 3-4 times a week. They say that they put this weed into different chemicals to make it 'more effective'. You buy it from a geezer round the corner and you never know what it's made of. Can this weed contain any reactive elements that could possibly develop oral cancer?
I dont smoke it regularly but smoked it only for a short period of time (4 weeks or so) but I believe this is when my first symptoms started to occur.
Last edited by Max1987; 11-02-2012 04:38 AM.
25/09/12 - diagnosis: lateral left side tongue moderate SCC (10-15mm) 15/10/12 - operation: partial glossectomy + neck dissection 17/11/12 - operation: excision of the tongue scar (or extensive biopsy) 26 y.o., non-smoker, social drinker
| | | | 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 | This is something you may never find out. There are many who have no known cause.
It has not at this time been scientifically proven that using weed has caused oral cancer. The smoking part irritates sensitive mouth tissue but as far as I know there has not been any studies linking it to OC.
What has your doctor said about the cause of your cancer? 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: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 5 | Christine is right smoking weed may not have been the cause but it's very possible the chemicals added may have caused irritation or cell change since you can't know the chemical breakdown. You never know  try not to focus on that now - the past is the past - focus on healing and staying well.
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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