| | Joined: Apr 2013 Posts: 4 Member | OP  Member
Joined: Apr 2013 Posts: 4 | My husband had part of a tonsil and part of the base of his tongue removed yesterday and we were told that it looked like stage 4squamous cell cancer. These were sent to be analyzed,and the waiting is miserable. The shock hasn't worn off yet. I guess I'm just looking for support now because I'm feeling very alone right now.
Jana, wife and caregiver to husband, Byron, age 45, dx 4/5/13 SCC, Stg 4 BOT, non-smoker.
| | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Jaysea - You have come to the right place for support and accurate information. I'm sure others will be along whose experience more closely resembles that of your husband's. The waiting is definitely the worst part and can really be a crazy-maker - so try to keep busy, take some deep breaths and check out the main pages of this forum for information which can help you put together questions for the doctor or for anyone here. My son had SCC (Squamous Cell Cancer) on the underside of his tongue but is doing fine, now 6 years later! Did your husband have a biopsy done before surgery? Or did the doctors outline a plan of treatment for him? Once you know what the treatment plan is, you will feel a lot better and can start doing something about it. As a caregiver, you need to take care of yourself, too. And just know that you are NOT alone. Lots of people are here, ready to help you and your husband get through this stressful time, so stay close and let us know how you are doing.
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.)
| | | | | 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! You have come to the right place for Correct medical info and support. Now that you have found OCF, you are not alone! We will help you and be here to lean on.
Best wishes with everything!
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: 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 | HI... welcome and ditto what everyone else has said. It's horrifying and scary, but you will get through it. Hugs.
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: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | | Assistant Admin Patient Advocate (1000+ posts)
Joined: Oct 2012 Posts: 1,275 Likes: 7 | Jaysea, here you have a circle of friends who truly understand what you are going through. Being a caregiver is hard work and is emotionally draining. Make sure you keep doing one or two things you like doing as it can take your mind away from worrying for a little while each day. Exercise if you can and feed yourself. You want to stay in good physical form so that you can help your husband deal with his illness.
Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
| | | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | Hi Jaysea,
I know exactly where you are. All of us caregivers do. It is absolutely terrifying the first few weeks. I promise that once you have started treatment and are IN battle mode, it will get a little better. It's a tough battle, but one we have beat and you can too.
It sounds like your husband's dx is very similar to my husbands. Please know that we are here for you. I didn't find the site until we were near the end of tx, but that was when things were the worst, so it was a huge relief.
You will be completely overwhelmed for a bit, but try to remember to breathe. People told me to make time for me, but that was impossible with 3 kids and my 87 year old Mom here too. I would take a longer shower and let everything out there.
One thing I want to mention, just in case this happens to you guys. Our friends kind of disappeared. I'm not sure if they felt helpless or scared or whatever, but most of them were just gone. But it was amazing how we made new friends and these folks are the real deal.
We're here sister...
Kathy
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
| | | | | Joined: Apr 2013 Posts: 4 Member | | OP Member
Joined: Apr 2013 Posts: 4 | Thanks so much to everyone! Doctor follow up was today. No change from the pathology report. Now we're waiting to see an oncologist. Everything is complicated by the fact he had no insurance. We're self employed and he's never been able to get coverage because of type 2 diabetes. Sooooooooo frustrating!
Jana, wife and caregiver to husband, Byron, age 45, dx 4/5/13 SCC, Stg 4 BOT, non-smoker.
| | | | | 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 | Ask for any type of programs they offer for uninsured patients. Some places you have to ask to get help. If not make a payment plan to pay so much forever. Much better to be in debt and get the very best medical care out there.
PS... Ive sent you a message a while ago. Check out the blinking envelope next to the "My Stuff" tab and click on it to get the message.
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: Apr 2013 Posts: 4 Member | | OP Member
Joined: Apr 2013 Posts: 4 | Christine,
I read the message you sent, but did not see instructions for a signature. I'll look again.
Jana, wife and caregiver to husband, Byron, age 45, dx 4/5/13 SCC, Stg 4 BOT, non-smoker.
| | | | | 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 | The instructions are included in the link. Please take a few minutes to review the link. It has everything in there to help you learn the forum quickly and easily.
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: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 1 | In addition to the above. all states offer Pre-Existing Cinditions Insurance Plan, PCIP, from the Patient Protection and Afforale Care Act, enacted that covers people who have not had insurance for 6 months or more, and have cancer or other pre-existing condition, but you mention having insurance, so I don't know if it applies.
Based on age, Medcare coverage, over age 65
See about applying for Medicaid. Each state differs, some also have HIPP, Health Insurance Premium Payment Program.
There are cost sharing assistance Charities, and patient assistance programs
Chronic disease fund
Health well foundation
National organize for rare disorders
Patient access network
Patient Advocatd Foundation
Patient Srtviced Inc
RxAssist Patient Assistance Program center
Partnership for prescription assistance
Needy,Ed's
Together Rx Access
10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs
| | | | | Joined: Apr 2013 Posts: 4 Member | | OP Member
Joined: Apr 2013 Posts: 4 | The PCIP enrollment has been suspended. Still looking for other options. UAB is a teaching hospital, but they won't see him because they didn't diagnose him.
Jana, wife and caregiver to husband, Byron, age 45, dx 4/5/13 SCC, Stg 4 BOT, non-smoker.
| | | | | 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 | Diabetes compounds his issues as he will be slower to heal etc... keep it well controlled if you can and good luck with the insurance. hugs
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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