| | Joined: Jun 2014 Posts: 86 Supporting Member (50+ posts) | OP  Supporting Member (50+ posts)
Joined: Jun 2014 Posts: 86 | Hello everyone I need your help. My little brother who is 22 years old was just diagnosed with squamous cell carcinoma, moderately poorly differentiated. I am really scared. He had a sore on his left tongue for about 2 months and we thought it was just a kinker sore and now we got the results back and we are scared. Qe are taking him to a specialist tomorrow. Can you give me insight? Is his survival rate only 5 years? I keep reading that it is 5 years and im so scared.
Thank you for your help,
AK
22 YO Brother Dx 6/17/14 w. SCC R Lateral tongue
CT scan clear LN 6/20/14
HPV-, non-smoker
R tongue, right hemiglossectomy Surgery 6/24/14
(Not reoccurrence but went to NCCC instead
R neck dissection, tracheostomy, radial free flap, R tongue dissection surg 8/11/14
PT1N2B.3 positive lymph nodes out of 13
Extranodal extension present
9-15-14 IMRT (35x) & Cisplatin (2x) begun
10-21-14 peg in. 10-31-14 1 round of carboplatin
11-4-14 IMRT rx comp
3-27-15 Recurrent tumor in lymph node, L neck diss.
10-29-15 brother passed away, 23 yrs old
| | | | | Joined: Apr 2013 Posts: 319 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Apr 2013 Posts: 319 | Hi Ak123.
First, my condolences about your brother. It's always a shock to learn that someone very close, as with the case of your brother, has a life-threatening disease!
But please take a deep breath now. A huge part of the determination of his life expectancy depends on what Stage is cancer is when he was first diagnosed.
The "expected" 5-year survival rate is different for each stage. I'm stage IVc, which has the least "expected" number of years before the disease overwhelms the bodies ability to cope.
No one can give you a definitive answer to "Is his survival rate only 5 years?" because the reality of this prognosis business is that it is entirely a matter of Statistics. Within any staging group, some will have a shorter life, and some will have a much longer survival.
And don't forget, we are all born with an incurable and 100% fatal condition called "life." And that means that NO ONE gets out of here (this existence) alive. Even if his prognosis is for 5 years, he ( or you or me) could easily die from some other event, like getting hit by a car as you walk across the street.
In my case, none of us are expected to last 5 years. But I expect that some do. I'm 3-1/2 years into this prognosis, but I fully expect to outlive that number by a considerable amount of time. I might be wrong. C'est La Vie.
Wait for the detailed prognosis from his Medical Oncologist before hitting the panic button, You may well have caught it in time and he might well actually get cured!
Try to maintain a calm mind and go into each meeting with the medical team with an open mind and avoid thinking about what you are going to hear. It could be good news, and obsessing about it now will have only brought unnecessarily grief and anguish to your mind.
And should the news be less than good, you will have denied yourself the normally peaceful mind by dwelling on the future. No one can say what the future will bring, facing it with a calm mind with no expectations will lower your stress and Cancer feeds on stress.
And sugar.
I hope this helps,
Bart
My intro: http://oralcancersupport.org/forums/ubbt...3644#Post16364409/09 - Dx OC Stg IV 10/09 - Chemo/3 Cisplatin, 40 rad 11/09 - PET CLEAN 07/11 - Dx Stage IV C. (Liver) 06/12 - PET CLEAN 09/12 - PET Dist Met (Liver) 04/13 - PET CLEAN 06/13 - PET Dist Met (Liver + 1 lymph node) 10/13 - PET - Xeloda ineffective 11/13 - Liver packed w/ SIRI-Spheres 02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node 03/15 - Begin 15 Rads 03/24 - Final Rad! Woot! 7/27/14 Bart passed away. RIP!
| | | | | Joined: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2006 Posts: 756 Likes: 1 | Welcome to OCF! I'm very sorry to hear about your brother. He is very young to get OC, but it is not unheard of. We have a number of young members on the OCF forum. Oral cancer can be very aggressive, and it does claim a lot of lives each year. Often this is because of late stage diagnosis. I was diagnosed in 2005 with SCC stage 1 on my tongue and I know many long term survivors. Don't dwell on the statistics, as each person is different.
OC is treated by surgery and/or radiation with or without chemotherapy. The OCF website and this forum are excellent resources to educate yourself about oral cancer. If possible, try to take him to a Comprehensive Cancer Center that treats a lot of oral cancer patient. There is a list of these hospitals on the OCF website somewhere and I'm sure if you read some of the posts on the forum there will be a link to this list. Who you are treated by and where are critical!
Make a list of questions to ask the doctor you are taking him to tomorrow. Get copies of his biopsy report and other medical records. The OCF forum is made up up of OC survivors and caregivers and we are here to help you and your family 24x7. Please use us as a resource and don't be afraid to ask questions. Wishing your brother the best!
Susan
SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Welcome to OCF! Please do not misinterpret the 5 year survival rate as meaning he will only be here for 5 more years. That simply means that at 5 years post treatment the survival rate is only about 55-60% of everyone who was treated will still be alive. That shows you oral cancer is nothing to play around with! Ive seen patients with terminal diagnosis survive for several years while others who seemed to have a much less invasive case of OC pass away. There is no rhyme or reason, (to be blunt and repeat what one of our long time members would say)... you will either make it or you wont. I suggest going to a major comprehensive cancer center (CCC) and seeking the best medical care you can for your brother. Below is a list of CCC's. They are the countries top hospitals to treat cancer and where your brother should get the most up to date treatment available. The CCC facilities all use a team based approach where the specialists get together so everyone is on the same page. If you cant get to a CCC, there is also a list of the top US hospitals. Look for a teaching hospital or university hospital. Find the best medical care you can and get a second opinion. CCC List US News Best Hospitals List You have found a great place to get info and support! We will help both you and your brother get thru this so stick with us.
ChristineSCC 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  | | | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | | "OCF Kiwi Down Under" Patient Advocate (1000+ posts)
Joined: Mar 2011 Posts: 1,024 | Hello AK, I'm really sad that you have to be here, your Brother is so young.
However this disease doesn't take any notice of age. I do know that on initial diagnosis one does get sent into a whirlwind of panic and rambling thoughts.
I reiterate what all the above posters have said. Take a deep breath and breathe .
Can not stress enough the importance of being seen at a Comprehensive Cancer Center with the whole team approach. Look through the list Christine has posted and get your Brother to one of them. This disease needs to be treated correctly from the get go to give your brother the very best chance of Cure. Yes, cure. This disease is curable. Hang onto that thought and take it one day at a time.
My very best wishes to you, your Brother and your family.
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!
| | | | | Joined: Jun 2014 Posts: 86 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Jun 2014 Posts: 86 | Thank you Bart! We will know the stage tomorrow. I am very sorry for your cancer too. I will pray that you live 100 more years. Our oral doctor is sending us to a Otolaryngology is that the same as an Oncologist? and you are so right no one is guaranteed life.
22 YO Brother Dx 6/17/14 w. SCC R Lateral tongue
CT scan clear LN 6/20/14
HPV-, non-smoker
R tongue, right hemiglossectomy Surgery 6/24/14
(Not reoccurrence but went to NCCC instead
R neck dissection, tracheostomy, radial free flap, R tongue dissection surg 8/11/14
PT1N2B.3 positive lymph nodes out of 13
Extranodal extension present
9-15-14 IMRT (35x) & Cisplatin (2x) begun
10-21-14 peg in. 10-31-14 1 round of carboplatin
11-4-14 IMRT rx comp
3-27-15 Recurrent tumor in lymph node, L neck diss.
10-29-15 brother passed away, 23 yrs old
| | | | | Joined: Jun 2014 Posts: 86 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Jun 2014 Posts: 86 | Susan- If you dont mind me asking did you do surgery or radiation? If you dont want to answer please dont worry at all. We scheduled him with an appointment with an Otolaryngology doctor. I dont think he is at a a Comprehensive Cancer Center. Is that a bad idea? we just want to get to an appointment first thing in the morning. What kind of questions should I ask? I am so confused.  I did get a copy of the bioposy report and it says Squamous cell carcinoma, moderately poorly differentiated (tumor is present in all margings. P16 immunoperoxisade stain is negative.)
22 YO Brother Dx 6/17/14 w. SCC R Lateral tongue
CT scan clear LN 6/20/14
HPV-, non-smoker
R tongue, right hemiglossectomy Surgery 6/24/14
(Not reoccurrence but went to NCCC instead
R neck dissection, tracheostomy, radial free flap, R tongue dissection surg 8/11/14
PT1N2B.3 positive lymph nodes out of 13
Extranodal extension present
9-15-14 IMRT (35x) & Cisplatin (2x) begun
10-21-14 peg in. 10-31-14 1 round of carboplatin
11-4-14 IMRT rx comp
3-27-15 Recurrent tumor in lymph node, L neck diss.
10-29-15 brother passed away, 23 yrs old
| | | | | Joined: Jun 2014 Posts: 86 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Jun 2014 Posts: 86 | Christine we are going to a Otolaryngology doctor named Jan Akervall tomorrow he is at Rontal-Akervall Clinic .
is that a bad idea?
Last edited by ChristineB; 06-18-2014 07:10 PM. Reason: removed web site
22 YO Brother Dx 6/17/14 w. SCC R Lateral tongue
CT scan clear LN 6/20/14
HPV-, non-smoker
R tongue, right hemiglossectomy Surgery 6/24/14
(Not reoccurrence but went to NCCC instead
R neck dissection, tracheostomy, radial free flap, R tongue dissection surg 8/11/14
PT1N2B.3 positive lymph nodes out of 13
Extranodal extension present
9-15-14 IMRT (35x) & Cisplatin (2x) begun
10-21-14 peg in. 10-31-14 1 round of carboplatin
11-4-14 IMRT rx comp
3-27-15 Recurrent tumor in lymph node, L neck diss.
10-29-15 brother passed away, 23 yrs old
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Sorry but I do not know about individual doctors (except a top few) or small treatment facilities. Check the lists I posted and see if they are on there for being one of the top CCC's or hospitals.
The best advice I can give you is to go to a CCC. If that is not an option then find the best medical care you can. A second opinion is also a good idea. Just remember... surgeons cut, radiation oncologists always recommend radiation, same goes for chemo oncologists. This is why going to a place where they use a team based approach, all the doctors will get together and discuss each case individually. They will all be on the same page when a treatment plan is drawn up.
Cancer, especially oral cancer is not anything to play around with. Where a patient gets treated can make a major difference! Im sorry, I can not advise you which facility is the best one to take your brother to. I can only give you the list of our country's top places, its up to your brother and family to decide what works best for him. I know its not easy and everyone doesnt know which way to turn when first being diagnosed. This is why a second or even third opinion is so important.
Good luck!!!
ChristineSCC 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 | | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | This should help... Main OCF pages I suggest reading and educating yourself both here on the forum and on the main OCF pages. There are all kinds of important things there as well.
ChristineSCC 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 | | |
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