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#189963 06-16-2015 04:11 PM
Joined: Jun 2015
Posts: 25
MandaRe Offline OP
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Hello,
As much as I know I am going to come to rely so heavily on this site, I must admit, I really wish I wasn't here.
My name is Amanda. I am 40 years old, mom of twin boys and I was diagnosed with SCC on oral tongue on June 5th. I have never smoked a single cigarette, light social drinker, and HPV negative.
June 12th I finally met with doctor and had CT-PET scans. I have Stage 4a. The tumor involves 90% of my tongue and it has already impacted my speech. My tongue is quite firm. Today, my doctor recommended a total tongue removal. When I asked if there was anyway we could shrink the tumor first he said he would be willing to do Inductive Chemotherapy.
I have an appt at Memorial Sloan Kettering tomorrow morning for a second opinion. I can honestly say I have never been more scared in my entire life and I gave birth to twin boys that were 2 months premature!


DX 6/5/15 Stage 4a SCC left lateral tongue, tumor involves 90% of my oral tongue
LVI and PNI identified
Med Port and PEG 6/23/15
Started Cycle 1 of Induction Chemo (TPF) 6/24/15--3 cycles in total
35 External Radiation sessions and concurrent chemotherapy (2 additional rounds of Cisplatin)
Brachytherapy
Remission as of 2/17/16
MandaRe #189970 06-16-2015 06:06 PM
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Hello,

Welcome to OCF! I am glad you found us and even more glad you are going to MSKCC. It is one of the best cancer centers in the world, really.

When you go to appointments make sure you have someone who is a strong stable personality to hear and write down what is going on.

I had induction chemo and it worked amazingly well; by the time I was done with the chemo phase the tumors had basically gone away. I still had radiation and chemo to make sure the beast was dead and gone and now two year post, feel 100%.

It is so scary now but you are on a very solid track so far. Check in here all the time approvide updates and get our collective experiences. We are not doctors but sure have a ton of practical experience.

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
MandaRe #189973 06-16-2015 06:37 PM
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Welcome to OCF, MandaRe!!! Im very glad you found our site so we can give you info and support to get your thru the next few months. Its not an easy road but to me it sounds like you are on the right track with getting a second opinion at one of the country's top CCC's (Comprehensive Cancer Centers).

Some doctors dont mind if you tape their consults. Ask if its ok and tape it so you can refer back to the recording when you cant quite remember the exact words you were told.

As far as help goes, you will need lots. Any person who offers to help you tell them when the time comes you will let them know what they can do. Write down everyone's name and contact info, hopefully you can text them or your caregiver can reach out if they need help. This can be a rough road but dont worry, you have us in your corner.

Read the forum and also the main OCF pages to help educate yourself about your disease and treatments. When first diagnosed it can be a confusing and scary time. Just not knowing what comes next can be enough to freak most people out, let alone facing your own mortality. Many patients (and quite a few caregivers too) use anxiety meds and a good therapist to help.

Dont be afraid to ask questions both of your medical staff and here. We may be OC patients/survivors and caregivers but we have been thru this and can help pass along tons of tips to help make this as easy as possible.

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
MandaRe #189974 06-16-2015 06:43 PM
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Welcome Amanda,

I left a long response on the other post. MSKCC is one hospital I haven't gone to yet, although I tried with radiation in 2012. Anyway, good luck with your appointment tomorrow. I'm going to see my proton radiation oncologist tomorrow at Roosevelt Hospital for the results from my recent PET/CT scan, which I already have/know, which takes away some of the stress.


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






MandaRe #189976 06-16-2015 06:54 PM
Joined: Jun 2015
Posts: 25
MandaRe Offline OP
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Thank you all for your kind and helpful responses. Paul I see recent news of NED--congratulations! I feel like it has been one hit after another these last couple of weeks and this all happened so quickly (first noticed "ulcer" little more than 2 months ago). I am reeling and still haven't told my children. I wanted to wait to get more information and hear treatment options and also let them finish finals (freshmen in high school). Right now, it feels like the worst of nightmares. So many people on here seem to have BOT cancer--finding people with SCC on the oral tongue has been difficult, particularly Stage 4.


DX 6/5/15 Stage 4a SCC left lateral tongue, tumor involves 90% of my oral tongue
LVI and PNI identified
Med Port and PEG 6/23/15
Started Cycle 1 of Induction Chemo (TPF) 6/24/15--3 cycles in total
35 External Radiation sessions and concurrent chemotherapy (2 additional rounds of Cisplatin)
Brachytherapy
Remission as of 2/17/16
MandaRe #189979 06-16-2015 07:08 PM
Joined: Jul 2012
Posts: 3,267
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There are many here with oral/tongue cancer, who will have more to say than myself. Mine is tonsil, in the oropharynx like BOT. Everything will come together, and fall into place the more you see your doctors, medical team, gain knowledge, and have a treatment plan in place. Actually, once treatment begins, there is some relief, but leading up to that can be hectic. One thing to do, and there are many, is not to panic, which you seem to be handling well btw.


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






MandaRe #189984 06-17-2015 01:25 AM
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Posts: 1,024
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Hello MandaRe, I too am sorry that you need to be here. That said , this site is a wonderful resource and place to come to for advice and support. Even words of comfort.
You must still be reeling from this diagnosis and suggested treatment.
I am glad to hear that you are seeking a second opinion. This will be important for you to know that you have sought out the best treatment options for you. I will be thinking of you tomorrow.
Should MSKCC suggest the same treatment option, a Total Glossectomy, we will be here for you. There are some of us who have been through this. Sometimes, in order to save a life, extreme treatment is the only option. Don't get too hung up on living without a tongue. There is still great life to be had. Great life.
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!
MandaRe #189992 06-17-2015 07:50 AM
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Hey there. as an oral tongue cancer patient I have to tell you that while chemo works well for HPV+ cancers there is no proof that induction chemo will work on non HPV - two different causes two different responses. I am not saying don't try it. I am just saying that time is important and this cancer can be tricky.

Chemo is usually used in conjunction with rads because it works to soften up and damage the tumor so the rads can kill it But for your type of cancer surgery is the first line of defense with a follow up of rads and chemo if need be (with the size of the tumor and the PNI - I would be surprised if it wasn't needed) I'm sure someone here will correct me if I am wrong, but I as far as I know chemo isn't curative or overly effective. (and think of it this way - you have a tumor in 90% of your tongue - so they do three months of inductive chemo - then it shrinks say maybe to 60% - being a dr. I would still take the whole tongue or most of it to get margins and guarantee there are no cells still lurking - so what have you accomplished?) Maybe you can suggest they try rads and chemo first with an eye on surgery post treatment. But the problem with that is that tissue has a difficult time healing after it's been radiated. ROCK - meet hard place. It's a difficult decision.

I also know that no one wants to have a total glossectomy - which is what your dr. is suggesting but you need to know that it has been done successfully and eating and drinking and talking (though with a lisp) is very much a possibility after all of it and you've healed. This is where the skill of all of your drs comes into play.

You need to be at a top CCC (sloan is one of them) with the best Drs./surgeons.

You have two young children. You are young yourself (I was only a couple of years older when I was Dx'd so I know exactly what you are going through). My only plus was that I had 3 children who were almost adults (had my kids very young) I guess my point is... do whatever you have to. If it means a glossectomy - then do it. If it means a neck dissection - then say okay... schedule me now. I know it's daunting but realistically this cancer is aggressive and deadly so do whatever you can now to stop it in it's tracks.

I know that's probably not what you wanted to hear but I've never understood the tentative approach to this cancer.
I know some people are all quality of life yada yada yada. Well aside from the fact that you can have a good quality of life post this surgery / treatment despite how radical it is, I would also say you have kids a family and people who love you.

also this is an add on because I just read your other post. If your dr is telling you he has no way of determining if it will work that's a red flag right there. He is experienced - he does this all the time - this is what he does. If it worked he would likely have suggested it from the outset. Drs will not tell you what you should do. Assuming he is a top ENT - at a CCC then you can assume that he does this all the time (in fact this is ALL he does) then his advice is based on years of experience. Please give it the weight it deserves.

Now I'll shut up.

Hugs.... and many blessings to you. and I am so sorry you have to be here...


Last edited by Cheryld; 06-17-2015 01:01 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
MandaRe #189999 06-17-2015 02:51 PM
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Posts: 1,024
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Well said Cheryl.
MandaRe, there is still excellent quality of life post a total Glossectomy.
I will be here to answer any questions you may have.
Choose life.
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!
MandaRe #190004 06-18-2015 05:13 AM
Joined: Apr 2015
Posts: 91
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I am pretty new to the forum myself, but I did want to reach out to you. I am sorry you are going through all of this. I had a diagnosis of SCC to tongue as well, stage 2. If I hadn't just happened to go to the dentist in March instead of say, July my story would have been quite different. I did not have to face what you are currently, but I had the same fears of the surgery itself and what I would be left to deal with after the surgery. I will be praying for you. It turned out I was a lot more resilient than I gave myself credit for. Good luck to you and I will be watching the forum to see any updates. Denise


Biopsy tongue 3/24/15
Diagnosis SCC tongue/floor of mouth
Partial glossectomy, resection and right neck dissection done
4/22/15
T2aN0M0
05/01/2015-no further treatment indicated at this time,
monthly check ups for two years

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