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#130271 02-26-2011 09:36 AM
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ching Offline OP
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Hi there, I'm glad I found this website and forum. My husband was diagnosed with stage IV squamous cell carcinoma earlier this week. It appears that the cancer had spread from his tongue to lymph node(s) in his neck. CT scan showed that it has not metastasize to his chest area so that's good news. (diagnosis is T2N2M0) the surgery is in 2 weeks and i'm wondering what to expect post surgery. the doc has told us that he would need about 5 days in the hospital to be fed through the tube and then be home-cared for about 6 weeks. i'm wondering what would be the pain level that he would go through as the morphine wears off.. some told me it's not serious illness and others tell me it's going to be difficult.. just want to know what to expect (if that's possible at all..) and what i can do to give him good care. thanks in advance.

ching #130274 02-26-2011 10:25 AM
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My cancer was stage IV as well, starting with my tongue as also spreading to my lymph nodes. A little less than half my tongue was removed and also the lymph nodes. I had my surgery about one week after diagnosis on a Wednesday and went home on Saturday. Will he have radiation and chemo as well? I actually had more problems w/the radiation and chemo than I did with the surgery. The surgeon gave me a prescription for pain to take at home (liquid) I had pain but it was manageable. Good luck to your husband. I am glad you found this site. I wish that I had found it when I was going through my treatments.


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.
ching #130275 02-26-2011 10:27 AM
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Ching, welcome. As many here will also tell you, we're sorry that your husband, and you, are having to go through this but very gratified that you've found this online community. It's a wonderful place.

You didn't mention what specific surgery your husband would be having. I'll let those who've undergone tongue surgery speak to that issue.

If he's having a neck dissection for the lymph nodes, it's of course serious surgery but something doctors are very skilled in. Barring complications he should expect to recover from it well, although there are various possible side effects - some short term, others longer, some perhaps permanent.

I'm just about 2 years post-surgery. My neck is still numb and stiff on the left side, though it has gradually improved and I expect more improvement. That is, the area of numbness has shrunk. In my case there was likely some nerve damage to that side of my tongue, which remains largely numb. Although my RO (radiation oncologist) has told me that feeling can take up to 5 years to return, so I'm hopeful.

Will your husband be getting any additional treatment - radiation and/or chemo? That's another whole area of discussion, to address as you need it.

Pain is of course individual. I didn't find the pain from the surgery itself terribly bad. Had IV Dilaudid during my 11 days in the hospital (don't be alarmed, there was a complication in my case requiring an emergency tracheotomy) but afterward didn't feel I needed anything. Of course, once I started in with RT (radiation treatment) it was another story.

I wish you both the best. Please keep us posted on his progress. We're all pulling for you.

David 2


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
David2 #130284 02-26-2011 01:30 PM
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Where on the tongue is his Primary?

Was 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.
davidcpa #130288 02-26-2011 02:45 PM
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ching Offline OP
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Hi, thanks so much All for your replies!
David - the Primary is on the left side of his tongue (top and side). Measurement is 11mm and depth is considered deep. Doctor didn't tell us how deep but that it was deep. Also not sure about the size of the cancer on his lymph nodes but that they're there..
No, he is not a tobacco user and doesn't drink.

David 2 - doc didn't mention the specific surgery.. just that a the Primary would be removed, as well as a neck dissection to take out the lymph nodes and then taking some skin from his wrist to cover the neck dissection part. He didn't recommend chemo or radiotherapy but that surgery operation would be more successful in killing the cancer cells. Not sure if it's due to age (hubby's almost 40). He's expected to be followed up every 2 months and see if there's a need for chemo or radiation.

Zengalib - i'm not sure if he'll have chemo or rad.. We're going to cancer agency this coming week. hopefully we will know more. I think we were both shocked that we didn't really know what to ask and just signed up for the operation as early as possible. It does sound very similar to yours. Glad to hear you had 4 clear scans!


ching #130292 02-26-2011 04:47 PM
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I wouldn't consider myself totally knowledgeable but my husband has had two surgerys to remove lymph nodes now, - he now has a scar in the neck area basicly from ear to ear but has never had to have a graft from his arm to cover the neck dissection part. He did have a graft from his forearm to rebuild his tongue when he lost 1/2 of it due to the tumors. Just wondering.... I agree it is hard to take in all the info when talking with the Dr.'s. I used my cell phone to tape record the conversations and that helped a great deal. There were things said that we both did not remember the Dr. saying on the recordings.


CG 2 Emmett,7/09 DX SCC rt tongue. T2N1M0, 1 node, marg neg.4/10 PET/CT clear, 9/10 C back. 10/10 Rad hemi, 2 tmrs mod diff. resec flr of mth. Flap 4 nodes/w/ext cap. 11/10 Peg, CX3 HD, 30 rad. 1/31 & 3/21 6/11/11 - PET/CT "activity" 9/11-all Clear. 12/11 peg out. 2/15 still all clear! 9/14 Prostate cancer treated with pencil beam proton therapy, best radiation experience. Keep it in mind as a treatment option for all tumors that can be seen including head and neck.
Karenj #130297 02-26-2011 05:47 PM
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Hi Ching, welcome to OCF. I did not have my tongue or lymph nodes affected any of the 3 times I was diagnosed with oral cancer. See, there are so many different places it can be, mine was in my cheek and behind my top left molar. Where is your husbands tumor? Right now Im sure you and your husband are trying to figure out all kinds of things. You have come to the right place, we will help you!

You should be encouraging your husband to eat right now. If he gains a few pounds that isnt a bad thing! Until the doc actually gets in there and operates, he cant be sure how much tissue will be taken. As far as the pain goes, the docs normally dont send patients home on morphine. Its usually some other pain med like oxycodone or lortab, make sure you ask for liquid. This can be put right down his tube! Make sure you flush it with water afterwards. If you need help with info on the feeding tube, let me know. I can help with that too.

A second opinion at a cancer center is a good idea. It can mean a completely different treatment plan. Its where a whole team of doctors discuss how best to treat your husband as an individual. Regardless of what caused the cancer, the treatment will still be the same, that doesnt change. If your husband is a smoker then his odds of a recurrence are greater than if this was caused by HPV.

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
-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
ChristineB #130312 02-26-2011 06:45 PM
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Ching, I wish you and your husband luck in the coming weeks. You have come to the right place. My diagnosis really took me by surprise as well. The last time I had been hospitalised was when my son was born, and he is 32 years old. They really moved quickly with me. I was fortunate in that I didn't need skin grafts or a trach. I did have a PEG tube before I started radiation and chemo, and also a port. (I still have the port.) Be glad if he doesn't have to have radiation or chemo. I really had no problems with the surgery. Keep us updated on your husband's "new normal."


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.
zengalib #130317 02-26-2011 09:54 PM
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I had a similar surgery as your husband probably will have. For me, the right side of my tongue and neck. They took the whole right half of my tongue, and 40 lymph nodes from the right side of my neck.

Did they biopsy lymph nodes? Cuz they usually don't say it is for sure in the lymph nodes until they biopsy them.
But my doc, as well as many other docs, may follow this surgery with radiation, due to spread to lymph nodes, and depending on deepness.

Mine went from top to bottom of my tongue, so I guess you could say it was deep, smile. I also had perineural invasion, which means the cancer ran along/around my nerves, and because of how deep it was, plus spread to lymph nodes was why they chose to do radiation.

Surgery was a lot easier then radiation, but wasn't a cake walk. For me, I was in for 8 days, and had a about 10 hour surgery using the free-flap transplant from left wrist/forearm to recreate tongue, and 40 lymph nodes pulled during right side neck dissection. Also had a tracheostomy, and NG tube (feeding tube that goes in through nose, through digestive tract, into stomach). Those are both pretty much a guarantee, the feeding tube (whether it be a NG tube or a PEG tube) and tracheostomy as we are sometimes on a ventilator after such a major surgery.

My pain was always kept under control from surgery, it was radiation that it was difficult to manage, but every one is different for everything. Healing times, way they respond to meds, and how things heal.

I have pictures if you are interested, but best advice I can give you, is bring a notebook. Have any questions you can think of before your appointment written down, and bring them with you in the notebook, and write the answers down. That was a big help for me through it all. Also something for him to write on for communication after surgery would be a good idea. My hospital had a little dry erase board and marker i could use, but i was constantly have to erase that thing, due to tracheostomy, you can't talk unless they plug it. Thats the type I had. This doesnt mean your experience will be the same as mine. Many people get a special trach that allows them to talk without a problem.

Not trying to scare you by any means. If I did I am sorry I was just telling you my story which will be different than yours. If you have any questions, let me know. Where is he being treated at, and where do you live? One more question, do you know the date of his surgery yet?

I am sorry you had to find this site, but I am glad you did, it was a huge help for me, and I hope it is for you and your husband!


25/female at diagnosis
Dx;stage 3 SCC tongue 03/25/2010
Surgery 04/13/2010
Trach,ng tube, peg feeding tube
Hemiglossectomy, right side neck dissection, 40 lymph nodes removed. Free-Flap transplant to tongue.
30 rounds IMRT ended July 15,2010
bethers0808 #130330 02-27-2011 07:09 AM
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Most likely his cancer is not related to HPV due to the location of the Primary. He falls into that 3rd category of oral cancers which have become more prevalent in the last 3 years and that is Non smoking HPV negative and they have shown themselves just as aggressive as tobacco related HPV negative SCC. I would still try and get a 2nd opinion because in the 5 years I have been on this site I have never heard of anyone needing a graft for a ND. JM2C's


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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