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Hi, I'm new. I had surgery in January to right side of my tongue to remove a tumor. I've healed by the back portion of my tongue was still swollen after 4 months then on May 14 it shrunk to normal, and a lump showed up under my chin, I called Dr office, and explained. I said I was putting cold compress and ibuprofen, it shrunk from about size of nickel to a pea, but then last week another showed up next to it, about the size of a pea. I called to get an appt. right away. They took me in that day, did 2 biopsies and a CT scan. both showed positive with the same cancer cells as my tongue. I'm scheduled for ND on Monday AM. Scared and worried about what is next. Worried about the surgery, but more so about the radiation and the effects of the radiation. Will I definitely have to have radiation?


SCC 12/13 - T1N0
1/28/13 - removal of tumor Rt. Tongue clear margins
5/14 lump under chin, 8/14 FNA showed C and CAT
8/25 neck dissection, 14nodes removed 9 clear 5 with C
Extra Nodal Extension not present
9/9/14 tumor board meeting to determine RAD and poss chemo treatment

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I'm so confused on how this works and travels in the body... so if I would have had the ND to begin with, the cells from the swelling in my tongue still would have dumped somewhere.... if my lymph-nodes had been gone where would the cancer cells have gone? I thought the Lynph-nodes were supposed to trap the bad cells and keep them from traveling throughout the body...??? They said they only saw C in the lymph-nodes on the CT scan. So does that mean I will not need Rad treatments, because it is not anywhere else???or that I will???, I'm getting mixed messages from the nurse. I think he is trying to be nice and spare me until after the surgery. But I'd really like to know.


SCC 12/13 - T1N0
1/28/13 - removal of tumor Rt. Tongue clear margins
5/14 lump under chin, 8/14 FNA showed C and CAT
8/25 neck dissection, 14nodes removed 9 clear 5 with C
Extra Nodal Extension not present
9/9/14 tumor board meeting to determine RAD and poss chemo treatment

Joined: Feb 2014
Posts: 17
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Any advice or comments would be great, it's getting close and I'm getting more nervous each day.


SCC 12/13 - T1N0
1/28/13 - removal of tumor Rt. Tongue clear margins
5/14 lump under chin, 8/14 FNA showed C and CAT
8/25 neck dissection, 14nodes removed 9 clear 5 with C
Extra Nodal Extension not present
9/9/14 tumor board meeting to determine RAD and poss chemo treatment

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Welcome to OCF! Im so sorry you are scared! Not knowing the future is always a bit unnerving. You have found the very best place to get info and support.

Only your doctors will be able to determine if you will need rads or not. Most patients will have a surgery and about 6-8 weeks later if they are doing rads it will start. I wont lie, its not easy, none of this is but it is doable and you can get thru this. We will be right here to help guide you thru this maze of medical jargon.

How it works is if the cancer cells have gone into the lymph nodes they will gradually go from the first node to the next and so on. Simply put, think of it like peas in a pod with the first one being rotten, soon the next one will be too. From what I understand, the lymph nodes are like the gateway to passing things thru the bloodstream where they eventually (if untreated) will go thru out the body. A neck dissection will take several nodes past what they find cancerous to ensure they get them all. Just like surgery taking much more tissue around where the cancer is. Honestly, for most of us the surgery is the easy part.

My suggestion is to right now focus on your intake. Eat all your favorite foods and then have dessert too. Dont worry about gaining weight, just eat!!! Make memories with your family and friends before your surgery and stay super busy. By being busy you wont worry so much. Worrying wont help, I know its hard but by focusing on other more positive things it really will help you to feel more at ease.

Good luck!!!


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 there Christine explained it well. Ideally your should be treated at a CCC - this is where the drs. Have the most experience in dealing with this kind of cancer. Most drs who are experienced with oral tongue cancer remove a sample of nodes at the same time as the oral surgery. This is because they know there is a good chance that the cancer has already seeded to the nodes of the neck. Even a superficial cancer can do this - it depends on a lot of things - your own physiology, lifestyle, habits overall health And the aggressiveness the cancer. This type of cancer tends to be aggressive. At this point with two nodes involved I would want to go through with the surgery and then if your dr. tries to pat you on the head and say - your cured, I would suggest moving to a CCC if your not already at one. Ideally they will send you for rads and chemo. I had a fairly large tumor, but only one node involved - I had the full compliment of treatment and am grateful, smile
Btw this is a very common story we hear here about simple surgical removal and then later nodal involvement.

Re the neck dissection - you will have shoulder and arm weakness on the operative side. You will have to have physio to regain the strength - they normally cut a major muscle in your neck. It won't be pretty but it shouldn't be too painful (they cut the nerves too so you are essentially numb) from that point on there may be swelling on your face and neck in that area. Once you have a clean bill of health for a while lymphatic massage will help to rebuild those pathways that have been damaged by removal of the nodes (the swelling is lymph fluid build up)

Hopefully with two known nodes involved he will already have a radiation and medical oncologist appointment in the works for you. And hopefully he's removing more that 28 nodes.

You should educate yourself (knowledge is power) I know it's terrifying but once you get past that then it enables you to ask questions and know If your treatment veers from the norm. At which point you can have an educated conversation with your dr about why and what. smile

Hugs - I know it's nerve wracking


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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Hi Scared:
Welcome to the family. I understand how you feel right now, so many questions, so many worries, so much to think about.

I expect you feel this way because you know very little about your cancer, what caused it, how it is treated, what will the side effects of radiation, or chemo, or both at the same time be. We all felt that way when we were standing in your shoes. Some of us worried about all of this a lot, others not so much.

In one way or another we found the forum and started asking questions, just like you are doing. We all had to be told, stop worrying so much. It is what it is, worrying about it won't make it go away any quicker or be any easier to handle. Worrying will raise your stress level and it can make you unable to sleep at night, especially if you are the type to worry when you are laying there in bed before going to sleep. That was me, for a few nights that's when I would worry. But, I also was usually very tired when I went to bed, so it became easy to say to myself, I'm tired, I'll worry about this tomorrow after I sleep tonight. And guess what, when tomorrow came, I would get up, get busy with all I needed to do that day, and never worry about it then either.

But, I suppose the biggest help this forum family provided was education about cancer, and it's treatment. They told me to not only read the forum posts made by others, but also to spend time on the OCF web pages, where a tremendous amount of information lives, much of it is stuff that will answer your questions. So, I'll tell you the same as they told me, go over there and start reading. With knowledge comes power; power over the worry that comes from lack of knowledge.

This is all so new for you right now. Spend a few hours of concentrated reading, you may be very amazed at how the worry will just go away.

take care, we will be here for you every step of the way.

Tony



Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

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Thankyou Cheryl. Thankyou Tony.

I'm trying to heal now, I have an appt with my dr for the results this Thursday.
I'm pretty sure he wants me to get radiation treatments.

Thankyou for responding and your support. Yes, I'm nervous and worried, and trying to keep it in check. It is hard.

I will read more on the sight to see if that can help me.

I've read some, but I cannot say I've read as much as I should, this came all of a sudden, I thought I was done with this after operation in January.

The news hits hard.

Take care. I will keep you posted.

Angela


SCC 12/13 - T1N0
1/28/13 - removal of tumor Rt. Tongue clear margins
5/14 lump under chin, 8/14 FNA showed C and CAT
8/25 neck dissection, 14nodes removed 9 clear 5 with C
Extra Nodal Extension not present
9/9/14 tumor board meeting to determine RAD and poss chemo treatment

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Christine, thankyou as well. You responded the earliest, and I thought already responded to you, but I don't see it here. Thankyou. I appreciate the comments and the support. I'm trying to stay busy, yes, although this operation has left me in pain, I'm much more worried about the radiation treatments, the side effects of it and the results he will give me this week. holding my breath...

Sincerely,
Angela


SCC 12/13 - T1N0
1/28/13 - removal of tumor Rt. Tongue clear margins
5/14 lump under chin, 8/14 FNA showed C and CAT
8/25 neck dissection, 14nodes removed 9 clear 5 with C
Extra Nodal Extension not present
9/9/14 tumor board meeting to determine RAD and poss chemo treatment

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Posts: 5,260
Likes: 3
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What you want to know Thursday is the differentiation - (this tells you the aggressiveness) and how involved the nodes were. He should already have your appointments set up - start time should be within 5-6 weeks (healing time) between now and then you should meet with a dental oncologist (you may have to have teeth pulled) have a ct - have your mask made - meet with a medical oncologist, radiation oncologist, and a dietician, and have blood work done (this includes a TSH level (gives them a baseline normal for your thyroid which can poop out after radiation.
It's a lot to take in but time will fly - 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
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I'm a a worrier, and it is hard to get to sleep at night. I don't think he explained he explained the differentiation but I will call and ask, the only good news he gave me, which I'm assuming is good, is that the cancer was contained in the lymphnodes, and that they were not capsulary isI think the term he used. He found cancer in 5 of the 14 lymphnodes he removed.He said there was no "extra nodal extentions" and that none of the nodes had burst, they were all contained. This is still confusing to me. I'm so upset I did not get the neck dissection in the first place with my tongue operation. That is what the other dr suggested. My dr is meeting with the tumer board on Tuesday to determine treatment, at first he told me radiation, now he is saying maybe cemo too.... so scared. can you tell me what it is like to get the radiaton? does it hurt during the treatment? or does just hurt after you get home? how painful is it. Does anyone know if proton radiation is better to do than the regular radiation? I know I have a lot of questions, but I have decisions to make fast, and I don't think I've been doing to well at that so far.

Please help.
Thank you,
Angela


SCC 12/13 - T1N0
1/28/13 - removal of tumor Rt. Tongue clear margins
5/14 lump under chin, 8/14 FNA showed C and CAT
8/25 neck dissection, 14nodes removed 9 clear 5 with C
Extra Nodal Extension not present
9/9/14 tumor board meeting to determine RAD and poss chemo treatment

Joined: Feb 2014
Posts: 17
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I've looked at the Radiation portion of this web site, and it is not helping me. I need to speak to someone that has been through it, I'm so afraid. I have 6 children, 2 grown, and 4 at home. I have alot of responsibilities, I work full time. Do I need to take a leave from work? I'm very scared about them damaging all my saliva glands, and me losing all my teeth. And I thought he was only going to radiate me from my chin line down, but he is saying he wants to do it higher above my jaw and teeth, to be able to hit my tongue with the radiation as well. I don't understand. Feeling very alone and afraid.



SCC 12/13 - T1N0
1/28/13 - removal of tumor Rt. Tongue clear margins
5/14 lump under chin, 8/14 FNA showed C and CAT
8/25 neck dissection, 14nodes removed 9 clear 5 with C
Extra Nodal Extension not present
9/9/14 tumor board meeting to determine RAD and poss chemo treatment

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All I can say is many of us made it through radiation. It's brutal but the choice isn't good, either. You won't really know about work and such until you get started. We had a traveling salesman from Florida many years ago and he traveled in his car all week long. He never missed a day of work.

Good luck and best wishes. Address the anxiety as soon as you can. The mind can help you or hurt you if you aren't aware.


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
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The unknown is always scary. Try your very best to not worry so much about things you have no control over. Focus on staying busy and doing positive things.

Radiation is not easy for most of us. What Ive noticed over the years is the patients who focus on their intake are the ones who get thru it easier and have a faster recovery. That said its up to YOU! Every single day you need to hit the minimums of 2500 calories and 48-64 oz of water. If you can push to take more in thats even better. Even 3500 calories is not too much for a patient going thru rads and recovery. Right now... EAT!!! Have all your favorites and even desserts, you do not want to go into this craving anything.

You probably will need some time off from your job. How much, nobody can say at this time. Most patients do ok managing their regular lives until about the 4 week point. Then there are others who have worked every single day thru the whole thing and other patients who have struggled from day 1. Just like everything else, cant predict who will sail right thru and who will struggle. Much will depend on how physical or even how much you need to concentrate on technical things for if you need to take off. I worked part time until I couldnt do it any longer then stayed home until I was 2 months post rads, back to work only part time for several months. Mine was a technical very detailed office job but took so much mental ability I was not thinking clearly enough to do. I also went back quicker than many do, most will be back to their regular schedules about 3 or 4 months post rads. After all this you can see why your questions are so hard to answer... everybody is different!

Do what is within your power. Assign every child things they can do to help you get thru this. They want to help and feel better about things when they are included in helping you. Make a list of every single person who has offered their assistance, get their contact info. Tell them when the time comes you will let them knwo what they can do to help. Even walking the dog, taking the kids out for a few hours to the movies, making dinner for the family, driving you to rads, or picking up meds from the pharmacy will help.

Radiation doctors must radiate a larger area to ensure all the individual stray cancer cells die. Dont worry about this! You have so many other things to focus on and this is another thing out of your control. At some point you will have to let your guard down and believe in your doctors and what they recommend. Take it day by day and dont worry about "what if" if you dont have to.

If it were me and I was going for surgery soon with so much anxiety, I would push back and go out to make some great memories with my family. Get outside and take a long family bike ride, go out to your favorite restaurant, even throw a party. Sounds nuts but its fun and will help everyone come together as a family.

Enjoy your weekend and please post when you can. 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
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Posts: 286
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Angela I won't repeat the good advice above other than to endorse it. Of course its new and scary and it won't be easy. I couldn't have worked during mine but I know others have, especially in the early weeks. Its a journey,a learning curve. No one can tell you exactly how your body will react. The medics can only give you a range of likely side effects, which ones you get and how bad they get depends on your own body, your attitude and measures you take to minimise the symptoms (pain relief, nutrition etc).

You'll be sick to death by now of the cliche "stay positive", but it is so important. Keeping yourself calm, optimistic and relaxed about things beyond your control helps the healing process enormously. Optimism and pessimism are both extremely contagious. Keep your chin up and you'll do fine.


Cheers, Dave (OzMojo)
19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil.
31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014)
11August2014 PET/CT clear.
17July2019 5 years NED.
Joined: Mar 2011
Posts: 1,024
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Angela , you have been given very good advice by other members above.
I just want to say that this is an aggressive cancer. Hit it hard from the getgo.
If you are offered chemo with your radiation, take it. Your life is worth it.
Follow Christine's advice.
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!
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Angela, I had an extremely similar case as you can see in my signature info. I am 43, normally work full time and have two small kids. I took ~ 3.5 months off work. The only time I could have worked would have been the first two weeks of Rads, but many here worked throughout (I have no idea how!). But my job is also hectic, stressful and long hours. Oral cancer is aggressive and sneaky and predictably unpredictable and do not hesitate to do radiation/chemo. It was admittedly pretty awful for me, but I was prepared to do whatever I could do to LIVE. Doing the treatment felt like taking control of the situation for me. At least that is how I got through it. If it comes back despite the treatment, then I will have no regrets. Am happy to talk with you anytime about radiation in detail. I kept a log of every med I took and how I felt, and also had a Caring Bridge site. Things start to get foggy pretty early so I found it helpful to write down what I was taking, eating etc. The good news? Im almost 3 months out and am mostly doing fine now. I have the same issues that many here have discussed but all nuisances vs QOL issues (at least am choosing to see them that way!). There is light at end of the tunnel and it is 100% worth it to keep the nasty cancer away. Good luck and keep in touch


Laurie
42 yo
Pediatrician
No smoke, social drink, HPV neg
May 2013 - SCC Right lateral oral tongue - stage 1 (T1N0M0)
Partial hemiglossectomy and sentinel node bx NEG
NED 5/29/13
3/2014 - Cancer back (never gone) in one right sided cervical node
Modified neck dissection 3/2014, N1 with microscopic ECE,39 nodes neg
30 Rads and 2 cisplatin done June 13!
PET in 3-4 months but no clinical cancer and I'll take it!
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Thankyou all very much for your advice. I'm searching in my mind how to stay positive. I'm going to need a focal point, I'm guessing that will be my children. They need me, and I need them. I noticed a few comments about high stress jobs.
I'm very interested in this because my job is very stressful. I believe it attributed to the situation I'm in greatly. I'm software developer and project manager, as a consultant. Was thinking of quiting, but with everyone saying to stay busy, I'm not sure whether to or not. It definitely keeps me busy.

I'm still pretty confused on the nodes. So I see some of you have just one or 2 lympnodes I had 5 positive... So I'm guessing that is pretty bad right? where does it go to next?


SCC 12/13 - T1N0
1/28/13 - removal of tumor Rt. Tongue clear margins
5/14 lump under chin, 8/14 FNA showed C and CAT
8/25 neck dissection, 14nodes removed 9 clear 5 with C
Extra Nodal Extension not present
9/9/14 tumor board meeting to determine RAD and poss chemo treatment

Joined: Nov 2006
Posts: 2,671
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Great suggestions above! Re the lymph node question, perhaps someone else can address that. Re stress - when your mind starts going over all the ways things might go wrong, just give them a time limit, like a minute or two and then force yourself to think of all the ways things will go right. Just take one possibility at a time, see if there is something you can do about it, or delegate someone else to do it and then move on. Make a list, and then check it off. This will release it from your brain and you can always come back to it later. . . . because you have already done something about it and you will feel more in control of the situation. Some things we worry about never happen anyway. Take deep breaths, do toe touches, yoga that gets oxygen to your brain. It takes practice. Come here often. It really helps. I was a basket case of anxiety and stress when caregiving for my son and we both made it through with this great forum and the people in it. You will too!


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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My doctor said to me in my first consultation after the diagnosis, you need to understand your full time job now is beating this disease. For example juicing. Normally not something I would bother with, makes a big mess for a small amount of juice. But fresh juice is very beneficial, and he suggested doing that and considering the exercise to be part of my "job". Things like regimenting your sleep and exercise patterns, diarising your food, medication and toileting, there are plenty of things that are beneficial (not all essential) that can fill your day. I've been off work since the diagnosis in February, but not everyone is able to take that long off.

Kids (grandkids in my case) were an enormous tonic to me during treatment. They had to use Poppy's special soap (hand sanitiser) when they came to visit and they brought in my meds and their priceless cuddles. The other focal point was my dog, she knows when its late in the afternoon we go to the dog park and becomes increasingly insistent as the day drags on. Many many days she was the only reason I would get out of bed at all.

Every situation is different, but I would be cautious about the idea of "keeping busy". Mainly because if it all gets too much to handle it can depress you emotionally, even if you're not working. Depression and anxiety can interfere with healing quite a bit.


Cheers, Dave (OzMojo)
19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil.
31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014)
11August2014 PET/CT clear.
17July2019 5 years NED.
Joined: Aug 2011
Posts: 269
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A year ago at this time I just started my radiation. It was a very dark time for me. This forum kept me sane. I didn't post a lot, but I came here and was comforted by the kindness of everyone here posting to others. I knew I was in great company and great understanding here. My radiation journey was not as awful as others have experienced. I'm not saying it was easy and like everyone here I deal with the aftermath. However, I can't emphasize enough that a year has made an incredible difference. I'm back to my normal life and at full steam ahead.
One thing that helped me, I let myself grieve over my situation. I told my self for six weeks during the radiation I'm going to allow myself to be melancholy. I also told myself I need to laugh at times, and think of others needs. I had support here from a few people through private message and also supported others who needed encouragement through private message. That was an incredible help. Whatever method works for you...do it.
Best wishes to you, eat eat eat, juice and drink plenty of water!
Blessings --


Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
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Thankyou so much for your comments, this really helps me so much. I'm trying so hard to be positive. It is really hard for me. I'm used to my life going 100mph, which is probably the reason I'm in this place now. I need to figure out how to relax myself, something I'm not very good at to begin with. Thankyou for your support. I really need this, and I'm sure I will need it even more as I go thru this journey. Thankyou, Thankyou, Thankyou. You are so kind and thankyou for helping me.


SCC 12/13 - T1N0
1/28/13 - removal of tumor Rt. Tongue clear margins
5/14 lump under chin, 8/14 FNA showed C and CAT
8/25 neck dissection, 14nodes removed 9 clear 5 with C
Extra Nodal Extension not present
9/9/14 tumor board meeting to determine RAD and poss chemo treatment

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Hope you feel better after the Tumour Board meeting. Once a plan of action is in place people generally feel more positive. Don't be put off by the tales of radiotherapy hell. It can be miserable but in the big scheme of things it goes by more quickly than you think and you can document here how you feel. Everyone will understand and will encourage you.

My teeth are a problem after RT but then again I'm 68, they were bad to begin with and RT has just accelerated that process. Yours might be fine.

I don't know about the lymph nodes, just that you need to see the treatment process as beneficial in spite of the side effects. I meet people here and in person who are living well after having this cancer! Your job sounds interesting but I think you will need to make huge allowances for treatment. My RO said she usually recommends four months off work. Maybe you can figure out some flexible working hours??


1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
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Angela - just a thought about your concern re work hours - Perhaps there's a way you could work from home? My son is a software developer and he works from home, has meetings online and only occasionally makes the two hour trip for the face-to-face meetings.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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alittlescared,

Try to live in the moment for a while. No one can predict with accuracy anything in the future. You will find throughout this journey that no amount of planning will direct the course of treatment and recovery. That was the hardest part for me. You will adapt and learn to just take it as it happens.

I was commuting almost 500 miles each way every week and managed to conduct business via teleconference even during chemo. That lasted until my voice went away for a couple weeks during the end of radiation. I was back at it as soon as the voice cooperated and 7 weeks later I was driving to work. I had a few medical devices and lots of supplies so I couldn't fly. I drove there Sundays and drove back Fridays.

Best wishes with the tumor board tomorrow.


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
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Four lymphnodes - I would be counting on chemo - and if not I'd be asking WHY in big bold letters. Compared to rads it's not too bad and it softens up any residual cancer so the rads can do more damage to it. 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
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You all are such a help, I don't know what I would do without you. Today the Dr called, and told me 7-71/2 weeks of rad, and Chemo. Not sure how much yet, he said either every week, or every other. did not sound good to me. The CCC we went to is 3-4 hours away from home, I really need some advice on where to the the Radiation and Chemo, they have a lodge there but because I have 4 children trying to work out care and school help is going to be difficult. But if I get organized I can probably make it happen with multiple friends and family members. Not sure about me though, away from home, will this make it harder because I will not have the day to day stuff to keep me busy? But I would be around other cancer patients, so maybe this would be good, maybe not. They do more than just head and neck there. Then I want to make sure I'm getting the best care I can, so I can be around later for my children. Not sure what to do. ???? There is a CCC here locally, we just did not go with them originally because had no referrals to the Drs, and didn't know enough about them. Both of my surgeries went well at the CCC I been going to, and I trust them. They seem ok with transferring me so I don't have to travel. I know is it different Drs getting involved for the Rad and Chemo, but should I be staying with the same team, or does it matter since they are switching me anyway...I'm stressing over trying to make the right/best decision.

The CCC I was going to only does Cancer. The one I'm switching to does Cancer, but the hospital does other things too. So it leaves me unsure. The company has a reputable name, but I don't know that I should be choosing based on that. We just found out, who the Drs will be here locally, so we are going to try to research the Drs tomorrow online. I don't know who the drs would be with my current CCC, but I know that is all they do. I live in Florida in the Jacksonville area. I'm not mentioning the names of the hospitals, because I was thinking I'm not supposed to on this forum. If I can, let me know.

Also, how soon after surgery, did you start getting radiation and Chemo, seems like they are wanting me to move fast. And ready for me to start right away, it has been 3 weeks since my surgery date. Have I healed enough to be starting radiation, will it interfere with my skin being able to heal? I'm doing well from the surgery, but my mind is so busy being concerned about the Rads and Chemo that I cannot think of anything else.

Thankyou so much for your help.


SCC 12/13 - T1N0
1/28/13 - removal of tumor Rt. Tongue clear margins
5/14 lump under chin, 8/14 FNA showed C and CAT
8/25 neck dissection, 14nodes removed 9 clear 5 with C
Extra Nodal Extension not present
9/9/14 tumor board meeting to determine RAD and poss chemo treatment

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Others will know more but I had rads four weeks after surgery. In fact a little under 4 weeks because I had a second top-up surgery. It really wasn't a problem in that respect, even at my age. The wounds had healed sufficiently to take the rads and even though the scar on my chin and neck had extra radiation, it seemed to be fine.




1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
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alittlescared, I can see the anxiety and fear of the unknown ramping up and that's part of this journey as well. Maybe taking out the blank sheet of paper, writing down all the options, listing the +/- of each might help you organize your thoughts and make the best possible decision for you and your family. You seem to use that type of problem solving method and it would also allow you to calm the mind down some.

You have listed some great points in making perhaps one of the biggest decisions of your life. You are putting together your personal support team and it sounds like you have really out some thought into this aspect as well.

As far as facilities, my personal opinion is a teaching hospital is the best option, as more research is done and they tend to stay more current and aggressive in terms of treatment. However, I've seen people go many types of places with similar results.

I know a 72 year old lady with a terminal husband with many issues and she opted to go to the closest facility after her surgery because of her husband. Her surgery was done about 2 1/2 hours away and was selected for the reputation and skills of her surgeon. She is doing excellent. She had an ear removed, her ear drum and ear canal removed in one side, then the ear re-attached. Her radiation started 3 weeks after that.

You trust the medical team and that's also a plus, even though you will be passed off to a different group, there is some level of comfort in that, also.

I don't know the ages of your children but you would know what you want them to endure. That could weigh in to your decision. Either way will be tough on them just like it will be for you.

Be sure and step back from all this and breathe from time to time. There is nothing easy about any of this.


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
Joined: Jul 2012
Posts: 3,267
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After a neck dissection, which I'm more familiar with, they usually like to start treatment within 4-6 weeks, depending on healing, so it doesn't give cancer a chance to repopulate. As far as healing, I had a neck incision from surgery that wasn't fully healed, but my ENT said radiation will heal it up faster, and did.

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






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As I understand it the CCC tumour board does a similar group diagnosis to the panel I had here. You get ROs, MOs, ENTs, speech, diet, dentists, all looking at your scans and poking and prodding you and working out collectively what the best course of treatment is. Is that the case?

If so, after that my treatment was relatively straightforward. A tough time, but not something that required the top specialists. As long as the doctor I was seeing at the time had my file, things went ok.

At the risk of oversimplifying your situation, if I had the logistic challenges you do, I'd be looking at whatever facility is closest. Cisplatin is Cisplatin and if a hospital has a million dollar radiation machine they will have people who know how to use it. I wouldn't be unduly concerned about the handover.

You do seem to be asking the right questions, I hope you can put your mind at ease soon. Try not to stress, take it one step at a time. Radiation and chemo are tough but very doable, and you have plenty of friends here with lots of support and tips to help you through.

One more thing. Can people change their names after they register?

Alittlescared, Youngandworried and Dazedandconfused walk into a bar... smile


Cheers, Dave (OzMojo)
19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil.
31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014)
11August2014 PET/CT clear.
17July2019 5 years NED.
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OzMojo... Once you register you can not change your member name.


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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My advice... alittlescared... Go to where you know you'll get the BEST treatment. A facility that does ONLY CANCER will offer this. This is all they do day in and day out - (no regrets - )
I hear you on the lodge.
I get that it would be a hassle with the kids.
However, you will likely be tired and feeling unwell, being at the lodge will give you time to rest. You can go home on weekends and spend time with your family.
Do what will offer you the best chance of survival - so that you will be here for your kids when they get married and have children of their own. It's only 2 months of your life.
I know a lot of people say rads is rads, chemo is chemo. - anyone can do it. Chemo - yes - you can always go anywhere for that. Rads to me is different. They have a dr. actually designing the plan - it involves mathematics, location and knowledge on how best to hit the cancer and minimize overall damage. For this you want the best of the best. I know people say a good dr. is a good dr. and this is true but if they truly are tops in their field the best hospitals will hunt them down and hire them therefore I do believe the quality of the medical staff is different at a CCC.

Point in fact. My friend's mother in law was diagnosed at a local hospital (also a CCC) with stomach cancer. They were going to go in and remove most of her stomach and likely hit her with chemo etc.

I suggested a second opinion at a CCC in toronto that is the BEST hospital in the country and in the top 5 in the world. Got them a dr. they went for an appointment and were told. It's not really stomach cancer - its a tumor growing inside the muscle of the stomach. Much simpler surgery, way less invasive, and better outcome. She had the surgery and is doing amazing. Same with my father in law and his esophageal cancer. %15 survival rate. He's doing amazingly well. You CANNOT beat a top notch cancer center - they offer comprehensive treatment and do this kind of cancer all the time so they have seen it ALL.

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
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We are going to meet with the Drs at both Cancer centers. I'm trying to make a list of questions to ask them. if you can help me with the list, that would be great. I'm going to traveling early this am to get there, my appt is at 11am Eastern time. Please send me suggestions. We are meeting one Rad Oncologist today, and the other on Tuesday. Big decision. I agree, I want the best care, so we are going to interview each to decide, also looking online at their bios and publications. This is feeling very stressful with so little time to figure this all out. Here are some I was going to ask.

How do you determine the right plan for me?
Why do I do need Chemo and Rad?
How much Chemo?
If you are not targeting a specific tumor in my mouth and neck, then how do you know where to shoot the beams of radiation? what determines this?
What do you do to avoid my valuable glands and throat and heart or whatever?
I was told the radiation goes in one side an out the other, so it goes right through me? damaging every thing on way in and out?
is this the only way to kill the cancer cells?
what is my survival rate if I do this?
what can I expect for my quality of life after this? what can i do to better this?
what can I expect for pain once I start this? what can I do to minimize this?
How many of this exact procedure have you done?
Does your office have any referrals I could speak to that have been through this?
How long have you been using this machine? How old is it?
Is it the newest technology?

Then I'm stuck.... am I missing the mark here... I don't know. I just want to get better. I love my children and my husband, and I don't want them to grow up without a mother, very scared. Please help me through this. I want to make the BEST decision, but I'm getting tired and I have haven't even started yet. Went to dentist yesterday for 2 1/2 visit to start preparing my teeth for this trauma. Might have problem, so following up on that, then had to speak to my boss yesterday and tell him what is going on with me, then came home to 2-3 hours of helping kids with homework.

I will check here before I meet with the Dr. today, any help or advice or additional questions is very appreciated.

Sincerely,
Angela


SCC 12/13 - T1N0
1/28/13 - removal of tumor Rt. Tongue clear margins
5/14 lump under chin, 8/14 FNA showed C and CAT
8/25 neck dissection, 14nodes removed 9 clear 5 with C
Extra Nodal Extension not present
9/9/14 tumor board meeting to determine RAD and poss chemo treatment

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I wish you the best of luck. Seems like you have enough questions to ask. Sometimes it's also a gut feeling or instinct who to choose or where to go and feeling confident about your selection other than by a resume.

Here is a handout from ASTRO to answer questions about radiation treatment, much of which is on this site too, but being time constrained, you may not get to read. "Facts to help patients make an informed decision"

http://www.rtanswers.org/uploadedFiles/Treatment_Information/Brochures/headneck.pdf



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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Angela
Ask what criteria they use for replanning therapy. This is sometimes needed if you lose weight and the radition isn't hitting correctly anymore because there is less of you.
Ask how make up radiation is handled if you miss a day or more do to illness or the machine being down. The closer you stick to the treatment protocol (both in timing and positioning) the better chances for a cure!
Hope your interviews go well!
Maria


CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
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Angela, you will know what to ask as the discussion unfolds. Try to view all this as treatment. Treatment designed to save your life. Treatment designed to give you more time with your family. You will make it through this.


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
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Hi Angela,

The question about survival rate is one I would skip. This is a portal to the whole exercise of marking your calendar for your funeral. It only brings negative consequences and places your mind in a very bad place.

Rather, ask about QOL (Quality of Life) topics and if different treatment options have less toxicity yet similar outcomes.

If you have decisions where QOL and survivability are factors then you need to have that discussion - quality vs quantity. Either way once the treatment decision is made stuff all survivability thoughts into the envelope.

Standard of care. I would ask about and discuss the NCCN recommended guidelines and how closely your treatment follows them. Ask what specifics of your situation factored into deviations from the recommended standards.

Don't forget tumor boards. Make certain your facility uses a team approach and your case is reviewed by a group of experts. That alone is worth more than a second opinion as you are getting a dozen opinions at once.

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
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I sincerely hope your appointment went well. 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
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Does anyone understand the "nodal Extension" with the 5 lymphnodes that were removed I was told I have no nodal Extension with cancer. All of the cancer was in the lymphnodes. they said this was good. I'm confused... my tumor board had some differing opinions. All 6 of them though I could benefit from having the radiation, and they recommended it. but where they were split is on the Chemo. 2 of them said based on 2 studies - one in US and one in Europe. There were 3 groupings, group 1 with nodal extensions, group 2 with NO nodal extension, and then one other group 3 that I cannot remember what it was. He said that the studies showed that both group 1 and group 3 benefited from getting the Chemo along with the Radiation treatments, while Group 2 with NO nodal extensions it was the same results with just the radiation as the ones with Radiation and Chemo. And that this was the same result for both studies in US and Europe. So 2 of the Drs thought I only need radiation, and the other 2 think I need Radiation and Chemo.... so I don't know what to do. I know he is the professional.. but I was hoping some of you may have some input on what the No Nodal extensions thing is...


SCC 12/13 - T1N0
1/28/13 - removal of tumor Rt. Tongue clear margins
5/14 lump under chin, 8/14 FNA showed C and CAT
8/25 neck dissection, 14nodes removed 9 clear 5 with C
Extra Nodal Extension not present
9/9/14 tumor board meeting to determine RAD and poss chemo treatment

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If it were me I would have the chemo. Nodal extension means it's broken outside of the node and leaked into the surrounding tissue, chemo though not a cure softens up any remaining cancer and makes it more easily damaged by rads. Chemo isn't too bad. I had nausea a but but other than that it was okay. Mind you I was lucky some have a really tough time - but mostly people fall somewhere In the middle. I'm surprised they only removed 14 nodes. 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
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Thankyou for your advice, it was very helpful.... I did ask all the questions when we went to see the Radiologist. Just not sure what to think about the information they gave me above.

Rough day, found out I have to get 2 root canals and 1 tooth extraction this week, to prepare for the radiation..... trying to keep positive...it is very hard.



SCC 12/13 - T1N0
1/28/13 - removal of tumor Rt. Tongue clear margins
5/14 lump under chin, 8/14 FNA showed C and CAT
8/25 neck dissection, 14nodes removed 9 clear 5 with C
Extra Nodal Extension not present
9/9/14 tumor board meeting to determine RAD and poss chemo treatment

Joined: Nov 2009
Posts: 644
Likes: 1
"OCF Down Under, Kiwi"
"Above & Beyond" Member (500+ posts)
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"OCF Down Under, Kiwi"
"Above & Beyond" Member (500+ posts)

Joined: Nov 2009
Posts: 644
Likes: 1
Best wishes for the dentist. I'll be thinking of you:) I think it's great that American hospitals are so proactive with the teeth before radiation. Not sure if I had enough precautionary dental treatment.

I can understand how you feel about it though. There's enough going on without having to worry about your teeth right now.

Relaxation techniques help. So does counselling and medication.

Hope all goes well with the dentist.


1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
Joined: Dec 2010
Posts: 5,260
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"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
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"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Likes: 3
Better to deal with the tooth stuff now. It's not fun but trust me in the long run it's the best way to go. Good luck. And many hugs - you'll get through it.


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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