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#183096 07-04-2014 08:16 AM
Joined: Jul 2014
Posts: 29
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Joined: Jul 2014
Posts: 29
Hi Y'all. So my husband was just told on Tues, just a couple days ago, that he has tongue cancer. Has had a ct scan, and mri is tomorrow. We are being referred to an ENT 3 hours away. We haven't been told much other than a large part of his tongue will have to be removed/rebuilt from arm and thigh and a neck dissection. The appt lady said the first appt avail isn't until the end of the month, over 3 weeks away. (She doesn't know it was an appt re cancer.) So I am concerned that we won't know anything else, have questions answered etc for weeks. And isn't it better to begin treatment sooner rather than later? He's had this huge thing on his tongue since Feb. I am trying to figure out if this kind of treatment delay is normal or if I should be concerned and try to get it moved up? Sigh. Any advice would be much appreciated!


Husband tongue cancer 7/01/14 (forward/right half of tongue)
43 years old at diagnosis
Partial glossectomy/node removal 7/31/14
PEG tube placed
2 mos high dose radiation
2 treatments cisplatin, 3rd was cxld due to hearing issues
cancer in both lungs, stage 4, 05/18/15
chemo port to be placed on 05/21/15
Full scan on 05/21/15
Chemo, 3-4 types (names etc coming soon) for 7 mos
4th type depends on clinical trial and if placebo or not
He is planning to defy all odds and kick this cancer!

Joined: Sep 2006
Posts: 8,311
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You are correct to be concerned and yes you should push to get the process started promptly. This cancer has proven to be very aggressive and like all cancers the sooner it can be treated the better chances of positive outcomes.

I see you are in Tx. You need to call MD Anderson ASAP (even try them today?) and get him evaluated by their team. Unfortunately this is a life changer and you want the best possible outcome and your best chance on average is to be treated by a comprehensive cancer center, like MDA, where all the specialists he will need are under the same umbrella.

If he is a tobacco user he needs to stop NOW.

We have many registered members that have had the exact Tx he will most likely have which is a combination of surgery first, then concurrent radiation and chemo and they will be extremely helpful to the both of you. I only had to have the radiation/chemo so I will be helpful when that time comes.


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.
Joined: Jul 2014
Posts: 29
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Joined: Jul 2014
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Thank you. I was feeling as though I may be biased, as it is my husband, or unjustified in my feeling of urgency. His is active duty army so we have certain 'standard operating procedures' to follow. Our first stop, the one that is 3 wks away, is BAMC in San Antonio. MD Anderson has been brought up and I intend on pushing for there. I just lost my Dad to prostate cancer 6 wks ago and it was MD Anderson that got him over 6 more years than he should have had. I am thinking of going to see the patient advocate here to address this 3 plus wk wait and trying to get him in sooner. According to the Army's own access to care standards he should be seen within 7 days. I just feel so blasted overwhelmed right now and despite the fact I have held together so far, between losing my Dad and now hubby's dx, well, he's more worried about me right now. Sigh. So, I guess first thing Monday I will be in the patient advocate office. Thank you! I think this forum may well be the 'glue' i need to keep it together for the kids and my husband. (Oh, he's not a smoker!)


Husband tongue cancer 7/01/14 (forward/right half of tongue)
43 years old at diagnosis
Partial glossectomy/node removal 7/31/14
PEG tube placed
2 mos high dose radiation
2 treatments cisplatin, 3rd was cxld due to hearing issues
cancer in both lungs, stage 4, 05/18/15
chemo port to be placed on 05/21/15
Full scan on 05/21/15
Chemo, 3-4 types (names etc coming soon) for 7 mos
4th type depends on clinical trial and if placebo or not
He is planning to defy all odds and kick this cancer!

Joined: Jun 2007
Posts: 10,507
Likes: 6
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Patient Advocate (old timer, 2000 posts)
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Welcome to OCF! You have found the very best site to help you get thru the upcoming battle. We will support you both with info and moral support.

Im very sorry to hear about your father passing away recently. Im sure this has made your husbands diagnosis even more scary.

Stick with us and we will help get you both thru the upcoming hard months.


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
Joined: Jun 2007
Posts: 595
"Above & Beyond" Member (500+ posts)
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"Above & Beyond" Member (500+ posts)

Joined: Jun 2007
Posts: 595
HI, I am Retired US Army and if I were in your shoes I would get the Chain of Command involved ASAP!!! They are there to watch your 6 and have the pull necessary to get your Warrior the treatment he deserves,also argue for treatment at a Cancer Center, not a Military Hospital!!! Stay Army Strong Bob Whyte


Bob age 57, non smoker,non drinker, ended treatment on 11 Nov 2007 and started back to work on 29 Nov 2007. Veterans Day 2012 the Battle was lowered, folded, Taps was played and the Flag buried as I am know a 5 year survivor. Semper-FI !!!
Joined: Jul 2014
Posts: 29
Contributing Member (25+ posts)
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Contributing Member (25+ posts)

Joined: Jul 2014
Posts: 29
Thank you! I am already feeling soooooo much better and more capable because of y'all! Thank you HUGE! I think I may well be here a LOT! smile


Husband tongue cancer 7/01/14 (forward/right half of tongue)
43 years old at diagnosis
Partial glossectomy/node removal 7/31/14
PEG tube placed
2 mos high dose radiation
2 treatments cisplatin, 3rd was cxld due to hearing issues
cancer in both lungs, stage 4, 05/18/15
chemo port to be placed on 05/21/15
Full scan on 05/21/15
Chemo, 3-4 types (names etc coming soon) for 7 mos
4th type depends on clinical trial and if placebo or not
He is planning to defy all odds and kick this cancer!

Joined: Sep 2006
Posts: 8,311
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)
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Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Joined: Sep 2006
Posts: 8,311
You visit this site 50 times a day if you want. You and your husband are the exact reason this site was started by Brian Hill. The reason all of us continue to help others is because we were helped. I guess Brian was the first to start this play it forward thing.


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.
Joined: Mar 2014
Posts: 286
"OCF Down Under"
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"OCF Down Under"
Gold Member (200+ posts)

Joined: Mar 2014
Posts: 286
We'll be here. Let us know how you go, and we hope for a smooth ride and good outcomes.


Cheers, Dave (OzMojo)
19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil.
31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014)
11August2014 PET/CT clear.
17July2019 5 years NED.
Joined: Jun 2014
Posts: 56
"OCF across the pond"
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"OCF across the pond"
Supporting Member (50+ posts)

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Posts: 56
Hiyah, I was diagnosed with tongue cancer last November. It's not an easy road, but you will get to the other side of all this. You get the strength from inside, it will be there for you. You will get through x x x


Mar 99 white patch tongue
Dec 11 white patch changed shape. biopsy neg
Sep 13 white patch ulcerated. Biopsy
Nov 13 diag Tongue SCC T2N2BM0 poorly Differ.
Dec 13 Hemigloss. neck dissect.Trach.Caldwell Luc (suspect cysts inside face, neg), teeth out. forearm flap, abdo graft
Feb 14 PEG tube
Feb/Mar 14. 30 x radio 60gy Grade 3 Mucositis, burns, hair loss, very ill. Nerve damage ear neck shoulder
Jun 14 *now* PEG out. Have lost 98 lbs in 1 yr. Anorexia. Dysphagia, liquids only. Dysphasia. Fatigue.
Joined: Oct 2013
Posts: 559
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Hang in there Army, you will get through this just fine. You have a great support team here at OCF, everyone always willing to go the extra mile to help. They helped me immensely get through my OC ordeal.

If possible have your husband join the forum also. It's great that he has a wonderful and involved caregiver like yourself, but there is sometimes a little lost in translation him getting all his info through you. Reading the forum and website for himself he will think of questions he never thought of before. And that just makes him a better, more educated advocate for his own care.

Take care, keep fighting, you will get there, but it will be a rocky road along the way.

Tony,
Old B-52 Bombardier


Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good


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