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#148326 - 04/15/12 08:10 PM New to Group
vandypaul Offline
Member

Registered: 04/14/12
Posts: 20
Loc: tn
Wife recently diagnosed with carcinoma on cheek. Been to one EEN doctor and after talking to him decided on going to a Cancer Center. She has a Cat scan this Friday and then meets with the new surgeon. Naturally concerned as she is 80 and suffers from Crohns. Putting together a list of questions for this first visit. Need suggestions to add to list. Have formed some from reading here. Thanks
_________________________
Caregiver to wife with stage 4 oral cancer. Cheek and 2 lymph nodes.Diagnosed April 2012. At age 80 decided against major surgery.Currently doing 9 chemos and then 7 weeks of radiation/chemo.

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#148330 - 04/15/12 10:25 PM Re: New to Group [Re: vandypaul]
Anne-Marie Offline
Patient Advocate (old timer, 2000 posts)

Registered: 11/03/06
Posts: 2597
Loc: TN
So glad you found this site! You've come to the best place for the latest information and help from knowledgeable people who been where you are. It's good you are making a list of questions for when your wife and you meet with the new surgeon. The main page of the Oral Cancer Foundation (see upper left corner) has several links to all kinds of information, which can help in putting questions together for your doctor or or for anyone here. Re CAT scans, if you go to the search box upper right of the main OCF page, and put in "CAT scans" you will see this:
http://www.oralcancerfoundation.org/archive_boards/treatment/CT_Scan_Questions.htm

which has lots of information on CAT scans and it will give you and idea of what to expect. Hope everything goes well. 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.)




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#148347 - 04/16/12 01:39 AM Re: New to Group [Re: Anne-Marie]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 4914
Loc: Toronto canada
Hi - welcome...

My one comment (other than glad you are going to a ccc -) is - expedience. Tell them to take care of it quickly. And find out if there are nodes nvolved... Hugs - you're awesome for being here!! smile
_________________________
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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#148357 - 04/16/12 04:51 AM Re: New to Group [Re: Cheryld]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 8409
Loc: PA
welcome to OCF! Im very glad you have found this site to help you and your wife with info and support. My first time I had oral cancer it was located in my cheek, I also had a spot behind my to molar. I am glad to hear you are heading to a cancer center. That is very smart!


PS... I was just in TN over the weekend. Lovely people and state!
_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
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 extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#148579 - 04/20/12 07:26 PM Re: New to Group [Re: Anne-Marie]
vandypaul Offline
Member

Registered: 04/14/12
Posts: 20
Loc: tn
Returned from Dr .Diagnosed stage 4. Lookng at surgery option as cancer is in left cheek. Affects upper /lower jaw as well as cheek. A 10 hr surgery with all nodes removed. Feeding tube.Followup radiation. He gives it a 40% cure rate. Other option is just radiation/chemo with no projected cure rate. Have weekend to come up with plan. She's in good health but 80 and has reservations galore. Anyone made this decision? All help will be appreciated.
_________________________
Caregiver to wife with stage 4 oral cancer. Cheek and 2 lymph nodes.Diagnosed April 2012. At age 80 decided against major surgery.Currently doing 9 chemos and then 7 weeks of radiation/chemo.

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#148583 - 04/20/12 10:15 PM Re: New to Group [Re: vandypaul]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 8409
Loc: PA
Im very sorry that you got the bad news, your wife has Stage IV oral cancer. Since she is in otherwise good health, she should be able to get thru all of the recommended treatments. It isnt easy but it can be done. Right now have her eat everything she loves and dont worry about calories. If she would gain a couple pounds its ok as most of us have lost alot of weight going thru treatments.

I was faced with the same decision. The initial surgery would have been a huge life changing operation due to the location of my tumors. I went with chemo and radiation. My tumors were gone and I was cured, or so I thought anyway. I ended up having a recurrence less than a year later with another tiny tumor appearing almost exactly where the first one showed up. I had surgery and very slowly recovered but it came back yet again. The third round involved a major surgery where my lower jaw and cheek were removed. I have thought this over many many times rethinking my decisions wondering if I had opted for surgery first if I would have gone thru it 3 times. But then the surgery would have been very involved too. All the while I did the chemo and radiation it was to avoid that big operation which I ended up having anyway.

My suggestion would be to take her to a large cancer center and get a second opinion. Dont hesitate, you want to make an informed decision rather quickly so any treatments can be started right away. Dont worry if it takes a couple weeks, but you dont want to wait a couple months to decide. I know how difficult it is to make this choice, Ive been right in your shoes 5 years ago.

Best wishes with everything!!!!!
_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
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 extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#148596 - 04/21/12 02:36 AM Re: New to Group [Re: ChristineB]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 4914
Loc: Toronto canada
I agree with Christine... A ccc is a good place for her to be treated. The surgery will likely be very involved but could take care of the worst of it, with chemo and rads doing the clean up... She may opt out of chemo and rads, after the surgery... But if she's in good health she may do well. We're here to help you both if and when you need it. Take care and god bless.
_________________________
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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#148608 - 04/21/12 03:31 PM Re: New to Group [Re: Cheryld]
vandypaul Offline
Member

Registered: 04/14/12
Posts: 20
Loc: tn
Still wrestling with decision altho leaning towards surgery. Interested in getting some idea of the recovery time altho I know everyone's different.Also wondering about dental aspects before surgery.
_________________________
Caregiver to wife with stage 4 oral cancer. Cheek and 2 lymph nodes.Diagnosed April 2012. At age 80 decided against major surgery.Currently doing 9 chemos and then 7 weeks of radiation/chemo.

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#148617 - 04/21/12 09:38 PM Re: New to Group [Re: vandypaul]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 8409
Loc: PA
Recovery time for surgery can be estimated but it all depends on how her healing capabilities are. If she takes in high protein it can help her to heal faster. The surgery will probably be an extensive one. Has the doctor mentioned any removal of any of her jaw bone or will it only be part of her cheek. She will probably have some donor tissue taken from inside her wrist and possibly more tissue taken from her thigh to cover the wrist. As you can see this can be very involved and can take 6+ hours.

My surgery was a bit different where my lower jaw was removed and a titanium plate put there but pieces of tissue were transplanted from wrist and thigh areas. It took my team of ENTs and plastic surgeons about 10 hours for this operation. Ive seen others here with 12 hour surgeries for similar operations as mine.

Make sure you ask the doctor all your questions and find out all the risks and benefits of the different methods. Ive seen several others who have had their jaws removed which is quite a bit more involved than what your wife is having done. Those patients would recover anywhere from 3 to 9 months. Anyone who encountered complications took longer, 12+ months. If I would make a somewhat educated guess, I would say expect anywhere from 2 to 5 months for recovery. I am taking into consideration she has not had radiation which would make her healing much slower but it would also shrink the tumor. Its my estimate from seeing other patients go thru other major surgeries similar in nature. Of course the doctor should be able to give you a much better guesstimate.

Best wishes with your difficult decisions.
_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
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 extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

Top
#148633 - 04/22/12 06:23 PM Re: New to Group [Re: ChristineB]
vandypaul Offline
Member

Registered: 04/14/12
Posts: 20
Loc: tn
Some portions of jaw bone will. Using skin from thigh for rebuild. All nodes.Decision time tomorrow. Having no children and living away from other close family having concerns about my ability to provide the care needed. I feel for what you all have been thru and we wonder if at age 81/80 it's all worth it. But onward and upward as we go for our pm walk. Thanks
_________________________
Caregiver to wife with stage 4 oral cancer. Cheek and 2 lymph nodes.Diagnosed April 2012. At age 80 decided against major surgery.Currently doing 9 chemos and then 7 weeks of radiation/chemo.

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