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hseals Offline OP
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Help I'm new here. I don't have oral cancer but my brother does. not sure how to start a thread any help will be appreciated.


Sister to brother with OC
Dx invasive squamous cell carcinoma
Stage IV
Joined: Sep 2006
Posts: 8,311
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Hseals,

I moved your post to your own thread.

Tell us more about your Brother's cancer & treatment, etc.. The more you can share with us the better we will be able to help.


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... some details would be good. His age, what type of oral cancer... There are different kinds. Oral (as in in the mouth - tongue, gum, cheek, or palate etc... - and lymphnodes ( if found in a higher stage) or base of tongue - which is actually in your throat area - at the actual base of your tongue (your tongue is very long and runs down your throat) - or can involve your tonsils, both generally have lymphnodes involved as well in the more advanced stages.

They generally have two different causes and often (though not always) can be determined by location.

Base of tongue cancer or tonsil cancer is often HPV related, responds well to chemoradiation which is the primary treatment - though they do sometimes remove the tonsils.

Oral cancer can be caused by smoking and chewing tobacco use, heavy drinking or all of the above. But there is also a small demographic here that have no known cause. Depending on location and size etc... often the first line of treatment is surgery, followed by radiation and chemo depending on the staging and biopsy results.

Then there is laryngeal or throat cancer as well. This one and the oral cancer - non HPV related tend to be a bit more aggressive.

The best thing you can do for your brother - other than offer support, is push him to be seen at a top cancer center. If he is in Texas too.. one of the best CCCs (comprehensive cancer center) and best Head and neck facilities in your country is actually in your state. It's MD Anderson in Houston. Being seen at a top facility will increase his chance for survival since this is ALL THEY DO... I am Canadian and was treated at one of the top CCCs in the world but if I were in the states, I would push to be treated at MD Anderson even if it meant I had to stay there for the treatment period. There are others like sloan in New York etc... too. Do a little research (christine is usually by to post the links to the top cancer centers) and give him some advice, also tell him to join if he can.

It's scary - I totally get it. But there are a lot of survivors here to offer support. 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
hseals #164916 05-14-2013 02:50 PM
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hseals Offline OP
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Thank you everyone. My brother has invasive squamous cell carcinoma. The surgeon removed an egg sized tumor that was located under his tongue and in the floor of his mouth. 18 lymph nodes were removed and one tested positive for cancer. Treatment consists of 35 treatments of radiation and 3 rounds of Cisplatin. He is being treated at Texas Oncology in Waco, Tx. He has been in treatment about 2 weeks and is often discouraged. Doctors don't offer much information and he is not sure what questions to ask. I try to help...even offered to go to doctor visits with him. He refused that because he feels the doctors should answer these questions when he asks them. Unfortunately medical jargon is like a foreign language to him and cannot come back with more questions. Should i insist on going with him? I wish he could go to MD Anderson in Houston. He had no insurance and is continuing to work so far.


Sister to brother with OC
Dx invasive squamous cell carcinoma
Stage IV
hseals #164922 05-14-2013 03:24 PM
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[quote]questions. Should i insist on going with him? I wish he could go to MD Anderson in Houston. He had no insurance and is continuing to work so far[/quote]It is usually preferable to have multiple sets of ears listening to what the doctor has to say as well as the patient to ensure things are being clearly understood. Insist if you can without jeopardizing your relationship with him. As to seeking alternate treatment options while underway is rarely done. btw - the recommended treatment seems standard of care and common and in line with what has already been done. I would place your trust in whom is caring for him now unless you get some bad vibes that there may be competence issues.

You can google NCCN head and neck cancer guidelines and read up on the professional standard of care for this sort of thing; it will ease your mind things are going fine. 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
hseals #164934 05-14-2013 04:30 PM
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Administrator, Director of Patient Support Services
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All patients need to have a caregiver or someone close to them help by attending appointments with them. Some members have asked if it was ok to record their sessions too. Depression is very common with oral cancer patients. This should be brought up to the doc. Many have taken anxiety meds and attended counseling to help get thru everything. Its a major change and shock to most cancer patients, no wonder they need a little help. Gosh, even some caregivers end up needing anxiety meds.


PS... I sent you a private message (PM). Take a look at the flashing envelope next to the "My Stuff" tab. On the drop down menu click on messages. The PM will help you navigate the forum and show you how to make a signature.


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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