| | Joined: Jan 2014 Posts: 3 Member | OP  Member
Joined: Jan 2014 Posts: 3 | I have been reading a lot on here and boy its scary. From him having no insurance to treatment and surgery.. overwhelming
Last edited by ChristineB; 01-30-2014 03:14 PM. Reason: removed fundraising link
My son, 27 was diagnosed on Jan 21, 2014 with Stage IV Tongue cancer that also spread to the lymph nodes in his neck. He did have insurance and his friends have started a fundraising website for him. He is scheduled for surgery to remove 1/2 of his tongue along with lymph nodes on the left side of his neck. He is young and strong and has a lot of friends and family support
| | | | | Joined: May 2012 Posts: 19 Member | | Member
Joined: May 2012 Posts: 19 | Wow! So sorry to hear that! But it's great that he has so much support. Where is he getting treatment at?
My sister is a bartender and they often have fundraising events. One night they raised $10,000 for a single charity - just from bar patrons.
I'm not sure how the Affordable Care Act works, but can you look into getting insurance before he starts radiation? You'll have about a month from surgery until radiation & chemo begin. It's expensive even if you do have insurance so I can't imagine not having any assistance.
Also check out some of the posts on the Insurance & Financial Assistance forum - there are several posts there that offer help.
Last edited by glocita; 01-30-2014 10:38 AM.
T2N0M0
26 at diagnosis. Non smoker, social drinker, HPV -
Surgery May 15, 2012: Left Partial Gloss + 48 nodes removed, not 1 cancerous! Perineural Nerve Invasion. IMRT x34. Staying positive!
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | I am canadian so we have national medical coverage... but there is a part of this forum that talks about how to deal with insurance issues etc. And how to deal with the hospitals when he doesn't have insurance. I would look there. There may be information on programs etc,.
Read up on the surgery and treatment post op and chances are he is looking at radiation and chemo (if he has nodal involvement). Please seek out treatment at a CCC. I know this can be an issue with transportation and insurance - but it will give him the best chance of survival. They do cancer all day, every day. They have clinical trials. Top drs. and a comprehensive team approach to treatment plus if you are from out of town they also have a hope lodge of some sort where he can stay for the week during radiation.
hugs and welcome.
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 2014 Posts: 3 Member | | OP Member
Joined: Jan 2014 Posts: 3 | He is having the surgery at Shands UF Hospital in Jacksonville.
ACA has been not only useless and unhelpful march 1st is soonest but surgery needs to be done asap.. no budging from them. Working with Shands but as you can imagine we are trying to get 4 weeks of approvals done in 4 days.. I have located private insurance which is expensive starting feb 15th so that will help him.
Last edited by ChristineB; 02-01-2014 11:28 AM. Reason: removed fundraising request
My son, 27 was diagnosed on Jan 21, 2014 with Stage IV Tongue cancer that also spread to the lymph nodes in his neck. He did have insurance and his friends have started a fundraising website for him. He is scheduled for surgery to remove 1/2 of his tongue along with lymph nodes on the left side of his neck. He is young and strong and has a lot of friends and family support
| | | | | Joined: May 2012 Posts: 19 Member | | Member
Joined: May 2012 Posts: 19 | When is his surgery scheduled for? I'm not familiar with Florida as I've only lived in the DC area. Is Shands part of the Moffitt Cancer Center? The American Cancer Society offers amazing support to patients. One of which is called the HopeLodge, where a patient can stay for free so they can receive treatment at the best hospitals. They have 2 locations in FL: one in Gainesville and one in Tampa: http://www.cancer.org/treatment/supportprogramsservices/hopelodge/tampa/tampa-about-our-facility
Last edited by ChristineB; 02-01-2014 11:29 AM.
T2N0M0
26 at diagnosis. Non smoker, social drinker, HPV -
Surgery May 15, 2012: Left Partial Gloss + 48 nodes removed, not 1 cancerous! Perineural Nerve Invasion. IMRT x34. Staying positive!
| | | | | Joined: Jan 2014 Posts: 3 Member | | OP Member
Joined: Jan 2014 Posts: 3 | Shands is part of the University of Florida Health system.. it is in Jacksonville Fl.
My son, 27 was diagnosed on Jan 21, 2014 with Stage IV Tongue cancer that also spread to the lymph nodes in his neck. He did have insurance and his friends have started a fundraising website for him. He is scheduled for surgery to remove 1/2 of his tongue along with lymph nodes on the left side of his neck. He is young and strong and has a lot of friends and family support
| | | | | 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 | tfm.... I have sent you a couple very important messages. Please read them over. Look for the small flashing envelope near the top next to the My Stuff tab. Click on that to get your messages.
Thank you!
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: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | tfm - Sounds like your son has a lot of support and you have great suggestions above. You and your son WILL get through this! My son was only 33 at diagnosis, with no job and no insurance and he is doing fine now, 7 years later! Most hospitals have departments that can help with financial assistance. And here, you have found the best place for the latest and best information, and compassionate help from people who have been where you are. So stay with us and let us know what's happening.
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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