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"Live each day fully as if it were your last, as tomorrow is promised to no one. My life has never been more productive since I embraced that idea, my days never so rich, nor fully spent in meaningful pursuits. I wish that I had lived this way before I had cancer… the things that I could have enjoyed and accomplished if I had just learned to live in the moment. To fully enjoy the companionship of friends and loved ones, to savor every meal for its intricacies, to fully embrace the joy of the good that passes my way and the pain of what comes in equal doses. That we are all going to die is a given, sooner or later it is everyones destiny, and almost never in a manner or time of their choosing. But not everyone fully lives. Awareness of the finite nature of our existence is the beginning, and release of the desire to try to control is the constant battle for most. So let me set you on a path. Your odds of living to a ripe old age are about 50%. Own it and get on with the living."

Thank you, Brian Hill, for these words for living. Sometimes, in these early days of recovering and "surviving", I have trouble remembering this. I need to post it somewhere in plain view so I can put it into practice. I've had a hard night emotionally and I can't sleep. Reading this post helped. Once foot in front of the other...


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
Joined: Dec 2010
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Ben - did you get your biopsy back yet? Do you know the differentiation? What were your margins? Have they have they booked you for your rads? Set up your mask fitting? Given you the information about what you should be doing prior to radiation. Start eating as much as possible, if you are taking vitamins of any kind, make sure they don't have high levels of certain anti oxidants if they do stop taking them. (my hospital provided a pamphlet with information about the antioxidents) This can interfere with the radiation. Have your vitamin d checked. if you are fair skinned buy a good non oil based cream and start applying it to your neck and face skin... (hospital also told me this... And provided suggestions for certain brands) Have they sent you to a dental oncologist to have trays made? This kind of thing is really hard on your teeth and you should be xrayed, and any teeth you're not going to keep hopefully for the rest of your life will have to be pulled - radiation kills your saliva - and saliva is what gets rid of plaque for the most part , you will have to use floride trays for the rest of your life (not expensive 60 for the trays - 25$ for a huge bottle of flouride that lasts 3-6 mos) having a tooth pulled after radiation is a nightmare. It involves up to 30 dives in a hyperberic oxygen chamber to help promote healing as one of the side effects of radiation can be ORN (osteoradiation necrosis - not somethi you want to mess with as a number of people here have lost their mandibles because of it - your hospital might have an in house dental oncology clinic where you should be examined and decisions made re your teeth - mine did - most CCCs do I think - after my mask making it was stop one) if they don't have a dental oncologist - then get a referral to one. you should have a hearing test prior to treatment (cisplatin - most likely one of the chemos - or the only chemo depending on the dr. And hospital - can cause periferal neuropathy and hearing loss) and a head CT/MRI/PET should be done (one of the three) so they can set up where the radiation field will be - usually its a baseline CT prior to radiation. Stock up on a high calorie high protien drinks - ensure - boost - carnation. You should be able to eat up to week three, but things will eventually start to suck taste wise. Good luck there's so much to think about! Hopefully they're moving quickly with this.l the usual time between surgery and treatment start is under 6 weeks. The higher the staging the sooner it should be. Once you've healed from surgery they should be ready to go. Did they reconstruct your tongue at all? My tumor was 2.4 cmx1.4 they removed a chunk of tongue with the smallest margin being 6mm and reconstructed it with a flap from my wrist. Normally if it's something that is large (beyond a superficial amount of tongue taken, they reconstruct it immediately) I'm just asking because that would affect your healing time. we're here if you need to know anything else or just vent. Drs. Do what they do, but the fall out from all this stuff generally affects the patient so if something's up and your not sure if it's normal, chances are someone here had experienced it! Take care.


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: Jan 2012
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What little I know about the margins is in my sig. I've already got fluoride trays molded, and know to suspend my supplements especially the ones with antioxidants. I'm having teeth out tomorrow, and we're looking to start treatment at least two weeks after that. During that time the mask will be made, etc. I've got a meeting the chemo oncologist next Wednesday, and then at that point they'll make the next appointment, probably for the mask. And if they don't offer tests for thyroid levels, vitamin d, and hearing test, I'll ask; they haven't been brought up yet. The ball is rolling.

I'm losing weight, not gaining, because I started 200 lbs overweight (now 160 lbs overweight). It's a very high nutrition diet, just low fat and calories. The diet is approved. I hope that's not the next thing people will disapprove of. This weight is doing me a lot of damage, and I can spare more than enough to get through treatment. At my weight, eating nutritious and the normal amount of food is all it takes to cause the pounds to fall of. Maintaining my weight would take an unhealthy diet. I could get 3000 calories and still lose 4 lbs a week.


-Ben-
Diag 12/21/11
T3N2bMX
Surg 1/17
5cm tumor left tongue pos. L tonsil neg. 17 l. neck lymph nodes, 2 pos w/extranodal excursion. 4 teeth neg
Tongue spec 5.9x3x1.8cm. Margins clear to 0.4-0.5 cm
2/20-3/27 27 radiation, 2/20-4/12 3 chemo.
Non HPV, lifetime tobacco, drugs, alcohol teetotaler
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Ben, I am really sorry for the life changing experience you are about to go through. These folks know a lot of the right questions to ask and I wished I had found them sooner. Once you get started please feel free to reach out to the group and share what’s on your mind, the good, the bad and ugly someone will respond and be there for you. I know many of us will be watching for your comments. I will be praying for you

MarkB


Dx 11/19/2011, SCC T2(2cm)N0 M0,BOT,HPV+
Tx 35 Rad(6996cgy)IMRT, No Chemo, Tx Done 1/17/12,
Never smoked, rare drinker, 52-Male
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Also be sure and concentrate on your hydration levels. I wish all treating facilities would mandate at least weekly IV fluids.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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"OCF Canuck"
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Yes and grab some protein powder to try and mix in with your ensure. Eating healthfully is the way to go. I would never recommend an unhealthy diet. I felt the same way when I went into treatment I had an extra 40 lbs on me. I could afford to lose it so I concentrated on healthful eating - no sugar - no white flour - and I'm a Veg head - but have been for years - protein helps with healing - your fine with everything by mouth now but later you may need the protein, when food isn't all that edible. Glad to see everything else I moving, and you have more information. Great on the margins and the Ned's - when you first posted I thought they'd only removed three good luck!


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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Ben,

I hope all goes well you'll be in my thoughts and prayers. I do want to tell you what happened to me. I went to 5 Dr.'s like I said in my previous post, but I didn't go into detail.

Here it goes...the last Dr I saw was a Radiation Oncologist he had my medical records in hand and asked me what are you doing there. I was dumb-founded. I told him the ENT (Surgeon) sent me here for Radiation on my tongue. The young Dr. who just came here from Mass. General told me he would never do Radiation on my tongue I needed surgery. He called the ENT he was so upset with him. The Radiation Oncologist had one of his colleagues come in to take a look, he gave the same answer, surgery. The Oncologist got on the phone and called Moffitt Cancer Center asking them if they have an opening for me to see the Surgeon ASAP. The Oncologist told me if you were my Mother you would be going to Miami to see Dr..so and so at a Cancer Center, Moffitt Cancer Center or a Cancer Center in the Boston area I can't remember which one he said. I had no clue what a Cancer Center was,I wanted to be near home for treatment. I didn't want to put anyone out driving me back and forth to Tampa.

Then I got hysterical for the second time here I'm 62 that was 3 years ago and I thought none of them (Dr.'s) know what the hell they are doing and I'm going to die.

I immediately came home and goggled Tongue Cancer that's how I got to this forum. A Dentist who has the same cancer as I do started talking to me online in the forum. After visiting this site for a few days he asked if he could call me. I thought for a minute thinking hmmmmm not so sure about this. The best thing I did was say yes. He said, let me give you my number and you can call me, I liked that. People on here know him he was very nice and told me what would happen. I was very grateful for him to communicate with me I was a little hyper about my cancer and what caused it. I blamed everything under the sun even my cell phone, how dumb was that. Everything he told me was right on the mark from my visit with my surgeon to aftercare.

When I walked in to Moffitt Cancer Center it was something I have never seen before. The kindness, caring, the place is huge and one thing I noticed was the high tech, the latest of the latest and the best of the best. I was told everything up front on my first visit. We're going to do this and that etc. etc. I took someone with me which you should do because it all went right over my head I was in a daze. My friend took notes, asked questions and when we got come he told me everything I missed.I was also told after surgery if any problems in the future no matter how many years down the road you come back to us you do not go to any other doctor. I thought you betcha.

I know this is long, listen to what people here are saying, go to the Cancer Center you've picked, but please ask questions start writing them down now, TSH levels etc. etc. You'll know at the end of your appointment whether you made the right choice.

Charm....I think you and I had this discussion before.....I had my lymphnodes removed 14 and all clear. My surgeon told me cancer cells are so small the CT Scan won't pick them up and to be on the safe side he recommended it but it was up to me. I did and I would do it all over again. If I didn't I would be sitting here thinking and thinking...I should have done it.

Ben....All of us here have been to hell and back with our own different cancer, most of us have a few good stories to tell. I know your upset and your mind is going every which way everything will fall into place and don't go away!!!!! Stay here with us the people on this forum are very knowledgeable. Yeah I know this is the internet and who is that person talking to you, we're all human like you.

Take care...Good Luck and 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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I'm madly in love with everyone at the Coborn Cancer Center here in St. Cloud, MN. They're all great people, and strike me as very talented and professional. And to say "likeable" would be an understatement.

I'm getting my feeding tube and cath port installed on February 17th. And starting treatment on Feb 20th. 33 radiation treatments, 5 days a week. 3 chemotherapy treatments (Cisplatin) 3 weeks apart, to run concurrently. First chemo on the same day as first radiation, and last chemo 2 days before the last radiation. I'll be getting IV fluids at least 3 days a week. Monday, Wednesday, and Friday. I go in on Monday to have my mask made, and I have my annual physical with my primary care physician on Wednesday. I'll be asking about checking my thyroid and Vitamin D levels. Anything else I should have checked before treatment begins?


-Ben-
Diag 12/21/11
T3N2bMX
Surg 1/17
5cm tumor left tongue pos. L tonsil neg. 17 l. neck lymph nodes, 2 pos w/extranodal excursion. 4 teeth neg
Tongue spec 5.9x3x1.8cm. Margins clear to 0.4-0.5 cm
2/20-3/27 27 radiation, 2/20-4/12 3 chemo.
Non HPV, lifetime tobacco, drugs, alcohol teetotaler
Joined: Nov 2009
Posts: 493
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Don't forget your teeth. If you haven't already, see your dentist and get fitted for flouride trays, which you will probably use for the rest of your life. Good luck, Ben, you have a long road ahead of you, but you can get through 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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Oops, I see from one of your earlier posts, that you had your teeth out. All of them? Your journey has been very similar to mine. My cancer started on my tongue and also involved the lymph nodes, and my radiation and chemo followed the same path that yours will. Again, good luck and keep us posted.


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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