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Sweetz #156964 10-31-2012 05:25 AM
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Sweetz,

Where are you being seen?

The radiation plan of only 5 mins per time seems way short of most times.


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.
Sweetz #156966 10-31-2012 08:45 AM
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Sweetz, welcome to OCF! I am so sorry you have gone thru so much and have a long road ahead still. The reason why you got this is something that is bothering you but it really is irrelevant, the treatment will be the same no matter the reason.

Being young, you are at an advantage. Your body will heal faster and you are stronger than someone elderly. Try your very best to think of all the positives how few they may be right now.

Your nutrition and hydration will play a huge role in how easily you get thru your treatments. At this time eat everything you can as your sense of taste will change and eating will become more difficult down the road.

Being a mother of young children, when someone asks what they can do to help, tell them you will let them know when the time comes. Write down their name and contact info and start making a list. Now is not the time to be proud, anyone who wants to help, let them. It could be something as simple as taking the kids out for ice cream or doing a load of laundry, it will all come in hand. Contact the American Cancer Society and arrange for help with rides to and from treatment. They will also give you up to $300 to use as a voucher for medications or transportation. Take all the help you can, you will need it.

We will help guide you thru the rough times and help you will recovery and treatment tips. Hang in there and you will get thru this. If you are overly anxious and worried a therapist may help, some patients take anxiety meds too. Do whatever it takes to get thru this. These things are all just tools to make it easier.

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
Sweetz #156967 10-31-2012 08:57 AM
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Hi there... As of nov 4, I am 18 mos post treatment. I was diagnosed Dec 20, 2010. It was a dismal Christmas. Made a little better by the fact that my family Dr. was very optimistic, I had two CT's that said the cancer hadn't spread - which by the time I had surgery it had - to one node - and that it was defined as well differentiated. That got me through christmas and one of the top surgeons in Canada (a pioneer in his field) performed the surgery. I was a T2 as well. I healed quickly, then went on to do radition and chemo despite the fact that according to my surgeon - "in his opinion I am cured" - he was taking no chances and removed 40 lymph nodes - the one I had literally popped up between DX and surgery... max 6 weeks. CTs don't pick up microscopic cancer. That's why chemo is imperative as is rads.

Neither are easy... rads being the worst, but you will get through it. I am not a control freak perse. However, where my health is concerned I am super diligent. I used to be a nurse and know how people get lost in the fray etc... and things do get missed. That said. Advocate for yourself, educate yourself, and push yourself because despite all the support in the world this is your journey, and you alone are the only one who can motivate yourself.

Try not to freak out either... I know it's hard not to do. I am a few years older maybe 10 but I never smoked, drank, did drugs, and I've been a veg head for years. I attribute my cancer to chronic irritation of that area.

The one thing you need to accept is the fear. It will always be there, it's normal. Despite being okay for the most part, everytime something unexpected pops up in my mouth, or every appointment, or every scan, you get nervous. I've gotten to the point where I try to enjoy every day. be grateful for being here. And the reality is... I have had cancer... but I could just as easily die tomorrow from stepping off a curb, or in a car accident. Do what you can to prevent a recurrence. Educate yourself, look into nutrition, be diligent, seek out the best medical treatment, and best doctors at the best facility. Then believe you've done all you can.

hugs. sorry you had to join our group. But you will 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
Sweetz #156968 10-31-2012 08:58 AM
Joined: Nov 2009
Posts: 493
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Hey, Sweetz,
As others have said, welcome to OCF. Sorry you have to be here, but glad that you found us. My primary was on my tongue as well and had gone into my lymph nodes, too. I had the glossectomy and neck dissection and 7 weeks of radiation with three "big" doses of cisplatin. I never smoked in my life, was a light drinker, and was negative for HPV. Christine has given you some good information. There are many amazing people here who will help you on your journey. Good luck. We are all here for you. Hey, I was stage IV, and am now over 3 years out and was able to see my first grandchild.


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.
Sweetz #156976 10-31-2012 11:50 AM
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Posts: 58
"OCF across the pond"
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Hi Sweetz,

Sorry to hear of your condition.

I,too, was diagnosed with tongue SCC about 6 weeks ago and had surgery to remove the tumour a few weeks ago.

I am even younger than you (25) and have no family yet. But when you get such news from docs you really get to understand what is more important in this life.

Try not to worry about it - you will be fine. I, too, tried to cry a few times and was concerned that my quality of life may change. However, worrisome and negative emotions won't help you and won't cure the desease. Stay positive, and believe in the best. Trust your docs and remember that this desease is curable and it's not death sentence - you just need to go through some kind of medical input. Don't think that it's a tough road, believe it's doable and you will cope well because you are young and you won't note how soon you are done.

I also used to smoke a pack of cigarettes per week between the age of 17 and 21. Then I gave up. I drink socially.

I have also heard from other young people that they used to be light ex-smokers in the past and that they got SCC at a later stage. Perhaps it could be a new topic to study - if there is any connection of 3 cigarettes a day and SCC.

Allen Carr, who has written 'the easy way to stop smoking' (this is how i gave up actually) says that smoking 3 cigarettes a day is more harmful than smoking 1 pack a day. It's better to smoke properly or not to smoke at all.

Gook luck with rad and have no negative thoughts!

Max


25/09/12 - diagnosis: lateral left side tongue moderate SCC (10-15mm)
15/10/12 - operation: partial glossectomy + neck dissection
17/11/12 - operation: excision of the tongue scar (or extensive biopsy)
26 y.o., non-smoker, social drinker
Max1987 #156981 10-31-2012 07:41 PM
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Thanx Max,
I'm trying to focus on the possitive and let go of all the negative stuff. I know that possitive thoughts bring possitive out come, sometimes I just need to be reminded wink

When I had my consultation with the radiologist I remember sitting in the waiting area and all I saw were faces no younger than 60 yrs of age. I remember feeling so bad and alone at that moment, I remember thinking how can I relate to anyone here.

For a while I didn't want anything to do with any support groups or what not. I guess it was fear, anger and most of all denial, I didn't want to believe that this was happening to me at 30 yrs WHO GETS ORAL CANCER AT 30??? But I've come to realize cancer knows no age, gender, sex or anything it just happens.

Sweetz #156983 10-31-2012 08:03 PM
Joined: Sep 2012
Posts: 381
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Yep Sweetz, she's a bitch, but one who can be beaten to submission. We're all a testament to that!


Tina
Diag: Aug. 13/12
T3N0M0
50% + glossectomy and bilateral radical neck dissection, removal of nodes zones I - V
Surgery October 11/12
Chemo/rad on hold due to clear margins and nodes
Sept 21/13 clear CT with anomaly thought to be the artery, being watched closely.
Dec 16/13 - anomaly confirmed artery, all clear
nickname: "get 'r done"
Plans: kick cancer's butt
Sweetz #156990 11-01-2012 01:42 AM
Joined: Sep 2012
Posts: 58
"OCF across the pond"
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i'm too probably the youngest patient, who have been diagnosed with scc, in all entire hospital where i am having treatment... my docs were very surprised at my biopsy results when they came scc... but there are so many young people, who have been diagnosed with scc, on this forum...
and they still don't know what causes oral cancer in young adults.. i don't even know what i've done wrong given that i have always been trying to eat healthy and to maintain healthy life style...
but yes..it's a bitch and we will fight this bitch

Last edited by Max1987; 11-01-2012 01:42 AM.

25/09/12 - diagnosis: lateral left side tongue moderate SCC (10-15mm)
15/10/12 - operation: partial glossectomy + neck dissection
17/11/12 - operation: excision of the tongue scar (or extensive biopsy)
26 y.o., non-smoker, social drinker
Sweetz #157011 11-01-2012 03:15 PM
Joined: Dec 2010
Posts: 5,260
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"OCF Canuck"
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Max you should meet with aussie Dave he was 18 at the time of dx. mind blowing, and there was a young girl here las year they couldn't get on top of it where she was concerned. She battled for 2 years she was 20 when she passed. Eyes widen - particularly when you say I don't smoke don't drink and exercise daily - we dont match the demographic.

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
Sweetz #157014 11-01-2012 04:01 PM
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Posts: 58
"OCF across the pond"
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Cheryl,

if you are talking about this Dave (http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=130391) then my first message was posted in his thread.. this is actually how I found OCF when I was googling but it seems he hasn't been here since January.. but he was 21 at dx. perhaps you are talking about someone else?

Last edited by Max1987; 11-01-2012 04:15 PM.

25/09/12 - diagnosis: lateral left side tongue moderate SCC (10-15mm)
15/10/12 - operation: partial glossectomy + neck dissection
17/11/12 - operation: excision of the tongue scar (or extensive biopsy)
26 y.o., non-smoker, social drinker
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