| | Joined: Jul 2014 Posts: 29 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: Jul 2014 Posts: 29 | Thanks to the holiday a lot of the folks i need to speak to are still on holiday, but someone was working today and paying attention and got my husband's appt moved up to next mon. What i am wondering, as each cancer is different and i am more familiar with breast and prostate, at what point is an oncologist called in? Right now his appt is with an ENT but to my understanding, yes he has dealt with this before but not his specialty. (still working on getting in to md anderson). Is this normal? Not worried or freaked currently, just strikes me as odd after other cancer type experiences.
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: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Hi jklamert - How great you had someone paying attention over the holiday and getting your husband's appointment moved up to this coming Monday. An ENT is the best person to see your husband, but it really should be an ENT with extensive experience in treating oral cancer patients and MD Anderson is one of the very best places to be. "Tongue Cancer" is a rather general term and can refer to any lump or sore anyplace in the head and neck area. Sometimes "a lump is just a lump" and only a biopsy can tell for sure whether it is cancer or not. Some cancers grow faster than others so it is important to get moving quickly. Perhaps the ENT your husband sees on Monday can help get him to MD Anderson very soon. Hope everything goes well on Monday. Let us know what happens.
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: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Whereon the tongue is the Primary, forwsrd part or Base of Tongue?
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: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2013 Posts: 559 Likes: 1 | Hi JK - to answer your question, yes, it's pretty normal to be working only with an ENT first. Once the cancer diagnosis has been made, then the oncologist's (medical and radiation) get called in as well as a surgeon (if one is needed). As I understand the process, that's the way it flows. My hospital (not a CCC) used the doctor team approach and that's the way they did it.
take care
Tony
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
| | | | | Joined: Jul 2014 Posts: 29 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Jul 2014 Posts: 29 | Hi, sorry for my delay in responding, we've had a couple crazy days! His cancer is on the front right side of his tongue. We found out in order to get him to go to md anderson we have to convince the doc at BAMC it is necessary and that he'll get treatment there that BAMC cannot provide. The army likes to keep active duty 'in house'. So i know i can bring up proton therapy, which isn't offered at bamc, but not sure what other info i can give to convince the army to let him go to md anderson. Wiill be doing tons of research before monday!
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: 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 | Its just crazy to get treated by a physician who isnt familiar with the disease. Oral cancer has a very high mortality rate. Almost 50% of all patients diagnosed will still be alive 5 years later. This alone is reason not to fool around with an inexperienced doctor and head for the big guys... a CCC. I dont know how you can convince the government into believing its critical that your husband gets properly treated other than quoting them alot of facts and figures. Its has been scientifically proven that patients treated at CCC's have better prognosis and overall do much better. Thats not to say other facilities dont do a good job but a CCC really is preferable if that is an option for you.
Good luck!!!
PS... Send me a PM if there is anything else I can help you with on this. I can lead you to many studies that you can pass along to whoever is the one making this decision. I know I sure wouldnt be very happy if someone who has no info at all about OC was the one who was going to decide where I was treated.
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 | Ditto what Christine said push for md Anderson if at all possible this cancer has a high mortality rate. 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: Jul 2014 Posts: 29 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Jul 2014 Posts: 29 | Hi. So I have been throwing myself into working on the property or working with the animals or watching movies non-stop just trying to get my mind off all this. Is that denial, too, or coping? I would definitely love and appreciate any info, links etc to stats, studies, numbers etc that I could print to present to the doc. The patient advocate said she could tell I have done my research and to make sure to present it to the doc we are going to see so I am going to print as much as I feel is necessary to convince them to send him to MD Anderson. As a dependant, if it were me they would send me no questions asked, but as he is active duty they will try to keep it in house unless I can show them that they cannot provide him the treatment MD Anderson can. Right now I know a smidge about proton therapy? I know that is one treatment/argument I have for MD Anderson. Working on gathering info on that, too. So any info at all on ANYTHING would be sooooooooooo 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: Oct 2008 Posts: 247 Likes: 1 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Oct 2008 Posts: 247 Likes: 1 | Have you thought about contacting MD Anderson directly and explaining your situation? It's possible that they might have suggestions for how to present their level of expertise.
Years ago and not related to OC, my husband needed prior approval for an out-of-insurance plan physician. The new physician's office sent in a request for us, and it was approved.
CG to husband, dx @ age 65, nonsmoker/social drinker. Dx 5/08 SCC Stage IV, BOT T1N2aM0. 33 IMRT - completed 9/12/08. Induction Chemo (Cisplatin, Taxotere & 5FU), plus concurrent Cisplatin.
1/09 PEG removed; 5/09 neg PET/CT; 5/10 PET/CT NED
Dental extraction & HBOT 2013; ORN 2014; Debridement/Tissue Transfer & HBOT 2016
| | | | | 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 | Take a look at the US News top US Hospitals list. If this is an option, why would anyone want to go anywhere but to the #1 ranked facility on the list? 2013-2014 Top US Hospitals List from US News
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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