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#139143 09-02-2011 01:21 PM
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Hi there,
I was just diagnosed with T1 SCC. What is the typical time line from diagnosis to surgery. Is it normal to wait 20+ days? Does that seem slow? Or does that seem quick?
I just want to have this thing removed- and the surgery was just put off about a week.
Thanks and regards,
Sally


Sally, 38 years old
T1N0M0 Left Tongue Lesion, Moderately Differentiated
10 + year history Leukoplakia, Mild Dysplasia before cancer diagnosis 8/2011
Scheduled Partial Glossectomy & Neck Dissection 9-17-11
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That seems average... Mine was a month's wait. But there were two weeks of Christmas holidays where everything slowed to a crawl! For me the sooner the better! It's an early stage so it's best to get it out ASAP... Actually I feel that way about all cancers if surgery is the primary treatment! smile my surgery was probably way more involved than yours will be that's why it took a bit longer as they have specific OR times - my surgery ran 14 hrs! smile I wouldnt be happy about the delay but it's not too bad - more than a week I would freak! smile take care- and I know exactly how you feel I wanted it GONE!


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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Sallyanne, 20 days sounds to be a good schedule for you to have surgery. I was able to put mine off for alittle over 2 months, diagnosed in early June and surgery August 24th. It also gives you plenty of time to get a 2nd opinion.

You have alot to do to prepare for the upcoming surgery. Eat all your favorite foods. Make sure all your affairs are set up to have someone take care of things for you. Its so much easier to do this now with the bill paying online. Line up everyone who offers their help. Write down their name and number, especially their cell phone. Hopefully everyone texts in case you have any speech impairment after the surgery. Once you come home it would be helpful if people would do a load of laundry or pick up a few groceries for you. There are all kinds of things that a friend could do to help you. Make sure you have something to write on, just in case, like a dry erase board.


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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Hi Sally, once diagnosed anyone would like to get it off as soon as possible. There is no standard wait time. If you want to get a second opinion, you could use the time. But invariably, irrespective of the reasons it usually takes 2-3 weeks to go under knife. My father was diagnosed SCC on 1st Feb 2009 and he had his surgery on 16th Feb. It takes a while for the news of diagnosis to sink in. There is denial first, then panic and finally admission and then you actually start planning next course of action. Ours included getting opinion for CCC and finally opting for treatment at CCC. CCC doctor wanted to operate him as soon as possible but we needed time to prepare and ofcourse there was wait period at CCC.

Having said all this, if you do require adjuvant radiotherapy/chemoradiotherapy post the surgery, just ensure that treatment is completed in < 100 days.


Father; 67 yrs; RIP: 2012/05/26

TX:SCC pT2N1M0G2;Glossectomy+SND+CCRT(59.3Gy+6xCis.)[2009]
TX:Nodal Mets; 3xDCF[2011/05/05]
TX: RND + PMMC Flap[2011/07/11]
DX:SCC PNI+ECE
TX:Re-RT 60Gy[2011/09/21]
TX:Gefitinib 250mg[2011/12/18]
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There are "protocols" for time from diagnosis to surgery and yours certainly sounds like it is well within the time limits. My first surgery was 5 weeks from diagnosis to surgery, but I do grant that the Canadian system's biggest fault is that it is slower. Our doctors do however have the right to send a patient to the US for quicker treatment if they are going to exceed the treatment protocol limits.

Glad to hear it is T1 - good luck with the surgery.

Donna


Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
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I guess I'm an exception to the rule. I saw my regular doctor on Monday, he scheduled me to see the ENT on Tuesday, the ENT scheduled the CAT scan for Wednesday. The ENT's office called on Thursday and said he wanted to see me so I saw him again that day. He's the one that told me it was cancer and gave me the name of two surgeons. I picked the "Italian" guy and called him when I got back to the office. They were waiting for my call and he saw me that afternoon. He set up an appointment for me on Friday to see a dentist that specializes with oral cancer patients and then they operated on Tuesday. Quite a week! I'm glad it happened all so quickly because as it was, I had too much time on my hands to think about it all!


57 when diagnosed. Heavy smoker. Social drinker. Diagnosed 7/9/09 with tonsil, tongue & neck cancer. Chemo induction (Cisplatin, 5FU & Taxotere) & 35 radiation tx + 7 Carboplatin.
Head and neck CAT scan on 1/15/10 shows no cancer.
1/27/12 First PET/CAT scans in 2 years - All clear!!
recurrence mid-2015
OCF supporter and avid OCF CO and NJ walk attendee with worldwide friends

*** 1-7-16 passed away unexpectedly ***
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Mine went pretty fast, too. I was diagnosed on a Monday, saw the surgeon on Tuesday, then had surgery the following week. I'm very glad that I didn't have to wait around for it.


Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
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I think the speed may have something to do with the staging - I guess the figure with a stage one or two thy hav a little wiggle room. Kudos to both our doctors! smile nd as always some hugs for doing so 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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That could very well be the case, Cheryl. Since mine was stage IV, they most likely didn't want to mess around with it.


Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
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Thank you for all of your responses.

My surgery has been confirmed for Sept 17. It's a Saturday- but they said that each of the doctors gets a rotating schedule where the doctors have their entire team working one Saturday per month. I wish there weren't so many patients with cancer to operate on- but I'm thrilled that I'll have the surgery in 11 days!!

Sally

37 (38 tomorrow), 10 years Leukoplakia history, T1 SCC, Surgery scheduled 9-17-11 at MSKCC. Ready to beat this and be cancer free!!
(will make sure that I update my signature properly before my next post!!)


Sally, 38 years old
T1N0M0 Left Tongue Lesion, Moderately Differentiated
10 + year history Leukoplakia, Mild Dysplasia before cancer diagnosis 8/2011
Scheduled Partial Glossectomy & Neck Dissection 9-17-11
Joined: Dec 2010
Posts: 5,260
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That's great... now you have somewhere to focus your energy... you'll do fine... best of luck during surgery!


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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So pleased that your surgery is so soon! I had T1 SCC and it was a little over a month from the time I was diagnosed until my first surgery. Hope all goes well and that you'll have this behind you soon. Sending healing thoughts!


Catherine, SCC floor of mouth DX 2010,unclear margins, PET scan clear, no chemo or rad,biopsy in 9/2010, 2nd excision 10/2010 didn't get all carcinoma in situ; partial gloss & excis. right floor 2/2/2011 margins clear. Part.gloss-10/5/2011 sev dys clean marg. HPV neg. Don't smoke or drink. SCC floor of mouth left side 4/2016. Dysp excis. rt palate 7/2017 Part gloss sev dys lat marg 2/2019 Part gloss free flap rt neck disc 5/2020 Part gloss bilat neck disc 7/2020 33 rad 3 cis.
cbhh #139384 09-06-2011 05:39 PM
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Hi Sallyanne,

It looks like you already got the answers to your questions:)

Good luck on the 17th and I look forward to hearing from you. Hang in there and like Christine said....eat all of your favorites now!!


Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
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One more question.... Has anyone had bad acid reflux? I told the doctor earlier this week & he looked at my throat & wasn't worried. But, I've never had this before & it's bothersome & tastes bad. It could just be my nerves- but not sure is something that anyone else has had along with tongue & tumor...?
Thanks!


Sally, 38 years old
T1N0M0 Left Tongue Lesion, Moderately Differentiated
10 + year history Leukoplakia, Mild Dysplasia before cancer diagnosis 8/2011
Scheduled Partial Glossectomy & Neck Dissection 9-17-11
Joined: Jan 2009
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I had bad reflux before, still deal with it although it is not as bad now as I'm on a liquid diet. Prilosec OTC or I get the Omneprozale from Costco really cheap and I'm good to go


Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
EricS #139583 09-09-2011 06:42 AM
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I've been on the Omneprozale from the end of treatment. Have no problems since. Just part of what the rads do I guess.


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
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I haven't even had any rads or surgery yet... My body seems to have jumped the gun!! smile


Sally, 38 years old
T1N0M0 Left Tongue Lesion, Moderately Differentiated
10 + year history Leukoplakia, Mild Dysplasia before cancer diagnosis 8/2011
Scheduled Partial Glossectomy & Neck Dissection 9-17-11
Joined: Dec 2010
Posts: 5,260
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Its likely nerves! His whole thing can take you by surprise and really does a number on your head! You may thin your okay but your body sometimes knows better! Try not to worry... And good luck on the 17th


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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Sally,

I had acid reflux. I told my Surgeon at Moffitt I feel like something is stuck in my throat he told me it's acid reflux he put me on Nexium. I take it daily and have for the past 2 years I don't have that feeling anymore.

Look in your messages sent you one.

Good luck on the 17th I'll be thinking of you. You'll be fine. I know the worry, been there. Keep us posted as soon as you can.

God Bless...

Connie


SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2.
Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.

CT Scan 9/11 clean, CT Scan 9/12 clean


Moffitt Cancer Center in Tampa, FL. A+.

My hometown Lockport, NY.



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[quote=sallyanne]I haven't even had any rads or surgery yet... My body seems to have jumped the gun!! smile [/quote]

Sally, you know what emotional conditions like anxiety, stress and nervousness can cause acid reflux. Try to relax and stay calm, you will be alright. All the best for your surgery.


Father; 67 yrs; RIP: 2012/05/26

TX:SCC pT2N1M0G2;Glossectomy+SND+CCRT(59.3Gy+6xCis.)[2009]
TX:Nodal Mets; 3xDCF[2011/05/05]
TX: RND + PMMC Flap[2011/07/11]
DX:SCC PNI+ECE
TX:Re-RT 60Gy[2011/09/21]
TX:Gefitinib 250mg[2011/12/18]
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I am very happy to hear yours is a stage 1 and very much hope you have a good surgeon.

Your wait time is reasonable.

Before I go into my situation, remember everyone is different! When I was first diagnosed with tonsil cancer on a thursday
(before easter weekend 2004) the ent I first went to scheduled me for surgery the following Tuesday...his plan was to remove my infected tonsil followed by radiation......sound good?

My tumor measured about 3 cm.

Over the weekend I researched surgery on this disease online and spoke with another physician's nurse by phone on monday, the day before my scheduled surgery.

She convinced me to go to her physician the next day
(I canceled my surgery with the other ent) as he was also an ent who ONLY did surgical oncology in the head and neck.

Further he was one of literally a handful of doctors in the world trained in the use of transoral laser microsurgery......a device that when used by skilled physician has shown to have a very good success rate at achieving negative margins.

I had to wait an additional 3 weeks.

By the time I was operated on he removed a tonsil tumor that had grown to 3.5cm and the cancer had spread to a node and and broke open to the soft tissue in my neck. That tumor was almost 5cm.

He also performed a neck dissection and removed 3 layers of nodes. I am glad of my decision because even though I waited an additional 3 weeks...I had chose the right surgeon who indeed achieved negative margins in my stage IV cancer.

I did have to have f/u radiation for possible microscopic disease
which I did and completed my treatment.

Thats another story....


to my soft tissue in my neck

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