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#141718 10-19-2011 09:41 AM
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My 78 year old father was just diagnosed with neck cancer that is staged between a 3 and 4. Apparently it is not just in the area of the neck initially suspected but also one the tongue and one vocal cord is paralyzed. It may also have started to spread to the other side of the head/neck. The Dr. is recommending radiation and chemo and my dad is struggling with what to do. The oncologist won't give a blunt prognosis but does want to start radiation asap. We are trying to gather as much information as possible to make an informed decision. For example, if chemo is not going to significantly expand the quality of his life then my dad needs to decide if he wants to go through it. Any information or experience with this would be appreciated. Thank you.

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Hello Maureen:
Just wanted to let you know I saw your post, and although I don't have any experience with those type cancers, others on this Forum do, and I'm sure you'll be hearing from them soon. I hope your Dad finds some sort of treatment that won't be too hard for him to handle - others have. Although you didn't get a blunt pognosis from the oncologist, you didn't get "there's nothing we can do," so that sounds promising.
julieann


Julieann
Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer smile
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Maureen, I was diganosed with stage 4 oral cancer, which started in my tongue then went into the lymph glands. I had surgery, followed by radiation and chemo. I am over two years out of treatment, now and am doing fine. I was considerably younger than your father when I was diagnosed (64) and was in very good health. The treatment is very rough, and the after effects stay with you for a long time. I still have issues with eating, but I am not sorry that they were aggressive with my treatments. Your father will have to evaluate things very carefully.


Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
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Thank you so much for your replies and I am so pleased that you have completed the treatment and are doing well!!!

Initially my dad was planning to start radiation but it was felt that chemo would not be necessary. The ENT and oncologist have done further studies including the PET and Cat Scan and currently are recommending both radiation and chemo. The Dr. indicated that the surgery would be extremely disfiguring for him and his quality of life would be limited so he has definitely decided against surgical intervention.

Of course I realize that at 78 years old, it should be expected that serious medical issues would arise but I felt like it was a kick in the stomach when we found out all the details today. He has always seemed so vibrant for his age but now reality is setting in for my family.

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As far as quality of life after TX, the advice your father is being given sounds right to me. My personal experience is that the surgery has had the most negative impact on my life.
At any age the radiation is tough enough that for many of us the chemotherapy side effects are somewhat obscured. Stage IV requires aggressive TX. Your father is of an age that he will remember: "In for a nickel, in for a dime" with the radiation alone being the nickel and the added chemo the dime.
You sound like a wonderful daughter
charm


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
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Have your dad's cancer slides been tested for HPV?

Was/is he a tobacco user?


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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Yes David's questions are along the lines of what I was asking - mentally. Those are two important questions! smile and they make a difference with prognosis and the need for surgery! Good luck - 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
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Welcome to OCF, Maureen. Im so sorry that you are here for your father. It sounds like he has oral cancer is several locations. It is rare to have it in more that one place at a time but it can happen. I had 2 completely separate spots going on at the same time during my first diagnosis in 2007. Does your father already have a treatment plan all set? Is he being treated at a cancer center? That would be where a whole team will get together and work as a team to treat him.


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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I don't think he was checked for HBV but he was a smoker (quit is 1983)and was not a drinker. He has had numerous skin cancers over the year.

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My dad is currently being assessed by an ENT, oncologist and dermatologist. We continue to learn more about his cancer location on each visit with yesterday being the first time we were given the staging. The recommended treatment is radiation and chemo. Surgery is not an option because it is in too many different locations and the oncologist indicated that he would "lose half his face/neck and tongue."

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Just based upon what you are able to tell us about his Dx I would strongly recommend he do exactly what his docs are recommending.


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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Need help staging scc question,
I have scc, gum cancer that penetrated the mandible, my doctor says I'm T4N0M0, does that mean I'm stage IV cancer? I already had mandible replaced in June 2011 with free fibula flap and neck dissection. I had 75 lymp nodes on one side of neck all negative. Dr Lewis at MD Anderson said that was the most lymp nodes she had ever seen on one side. Lol


Debra 57 y/o female,
5-2-11 dig. Scc well diff invasive gum cancer
5-17-11 consult MD Anderson
6-15-11 mandibulectomy, w/fibula free flap, rem all teeth, neck diss removal 75 nodes one side, IRMTx30, 1.2cm submucosal tumor invading tooth socket. cT4N0M0 (IVb)
1-24-12 clear CT scans to date
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I need info from our experts on here about how to figure out my stage of cancer.
Dr. Lewis at MD Anderson said I'm T4N0M0, does that mean I'm stage IV? Thanks to you all


Debra 57 y/o female,
5-2-11 dig. Scc well diff invasive gum cancer
5-17-11 consult MD Anderson
6-15-11 mandibulectomy, w/fibula free flap, rem all teeth, neck diss removal 75 nodes one side, IRMTx30, 1.2cm submucosal tumor invading tooth socket. cT4N0M0 (IVb)
1-24-12 clear CT scans to date
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it is stage IV my dear. The good news is no node involvement (N0) and no distant mets (M0). You are in good hands at MDA and on these forums for support.


Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
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Thank you so much for the replies. I am a regular on the oc forums but just now figured out how to do signature. Lol. You all have excellent info on here. It's been 7 months since my surgery guess this is going to be an ongoing thing by everyone's comments. I pray to my God and I'm happy for how ever many days I have here on earth. The cancer has made me prioritize my life, which I understand goes along with a cancer diagnosis. I've decided to spend whatever days I have here enjoying my life with my family and friends and helping others.


Debra 57 y/o female,
5-2-11 dig. Scc well diff invasive gum cancer
5-17-11 consult MD Anderson
6-15-11 mandibulectomy, w/fibula free flap, rem all teeth, neck diss removal 75 nodes one side, IRMTx30, 1.2cm submucosal tumor invading tooth socket. cT4N0M0 (IVb)
1-24-12 clear CT scans to date
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Sounds like I have very similar to what you have. Mine also lower right molar cancer. In Jan 2011 went to dentist with loose molar and pain, said it was tooth abcess and pulled tooth. Pain still there went back multiple times with the pain. Dentist decided I needed teeth cleaning 700 dollars later still had pain and socket not healed. When I pushed on socket white puss came out. Continued in pain two more times to dentist and felt like I had food down in socket so dentist cut open the incision (2 separate times a week apart) which opening it up twice was probably not a good thing. So first noticed pain January 2011 and it took my dentist till end of April of 2011 for dentist to send me for biopsy. Finally diagnosed may 2 and may 17 I was consulting with MD Anderson.


Debra 57 y/o female,
5-2-11 dig. Scc well diff invasive gum cancer
5-17-11 consult MD Anderson
6-15-11 mandibulectomy, w/fibula free flap, rem all teeth, neck diss removal 75 nodes one side, IRMTx30, 1.2cm submucosal tumor invading tooth socket. cT4N0M0 (IVb)
1-24-12 clear CT scans to date
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Debra, very similar story on my end. Went to dentist in Sep. 07 to get my wisdom teeth pulled as I thought they were the cause of the pain. Dentist failed to identify large lesion as he thought it was caused by the wisdom teeth. Went back due to pain and complications in Jan. 08 which is when I was sent to an Oral Surgeon who identified it as possible cancer, then confirmed with a biopsy at an ENT. Been a wild ride that's for sure.

You've come to many of the conclusions I have, I actually write a blog on these forums you may relate to. Check it out if you have the time.

http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=135745

I'm glad you found us here my dear, it really is the best place for info and support.


Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
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Debra
Here is a link to the OCF main web page that spells out all the staging definitions OCF-staging explanation
If you have a slow internet connection: here is an excerpt

[quote]T4 (Oral cavity) Tumor invades adjacent structures (e.g., through cortical bone, into deep [extrinsic] muscle of tongue, maxillary sinus, skin)
N0 No regional lymph node metastasis
M0 No distant metastasis
Stage IV
Any of the following may be true: The cancer has spread to tissues around the lip and oral cavity. The lymph nodes in the area may or may not contain cancer. The cancer is any size and has spread to more than one lymph node on the same side of the neck as the cancer, to lymph nodes on one or both sides of the neck, or to any lymph node that measures more than 6 centimeters (over 2 inches). The cancer has spread to other parts of the body.
[/quote]
Charm


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Joined: Jun 2007
Posts: 10,507
Likes: 7
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Great job with the signature, Debra! Glad to have you here smile


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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