Previous Thread
Next Thread
Print Thread
Page 1 of 2 1 2
Joined: Oct 2014
Posts: 41
Contributing Member (25+ posts)
OP Offline
Contributing Member (25+ posts)

Joined: Oct 2014
Posts: 41
My dad was just diagnosed with a second primary cancer 5 weeks after finishing treatment for SCC on his gums. It was tough news, but it's early so we are hopeful.

Surgeon says he has a small spot on the lateral oral tongue, all the way in the back. (Based on the drawing he did for us, it looks like less than 1/5 his tongue) Scope shows no voice box or epiglottis involvement. He does have a painful node on his neck, but they are not sure if that's related to his tongue or treatment - either way they are taking out along with a few others near by for good measure.

Due to location, they are going to do a radial free flap from his arm to fill the space of the cancer. Dr says dad will have a feeding tube through the nose for 14 days, plus a trach for 5 to 7.

My dad is scared and so are we. What are we to expect in terms of recovery with this surgery? Dr says they test swallowing at 14 days... My dad's strong and made it through treatment without missing a day and no PEG. He lost 5lbs through the whole process, which was amazing.

I'm hoping my dad is one of the 15% that can swallow well following surgery. Will he able to talk? How will nurses and doctors know how he feels if he can't speak? This is all so overwhelming and scary. I've read some amazing recovery stores on here and I'm hoping my dad is one too.


Caregiver to father
DX:4/14 Surgery:5/14 resection, ND
TX: 33 IMRT complete 9/14
Scan: 10/14, suspicious area tongue & neck.
Biopsy confirmed SCC BOT 2nd Primary, right lateral tongue.
11/14: surgery partial glossectomy, pec flap, trach, NG tube, ND
12/14: debridement surgery, small area removed for clear margins
12/14: biopsy positive for SCC dermal metastasis
1/15: chemo: erbitux, taxol and carboplatin
3/15: 5FU, Erbitux
8/15: enrolled in PD-1 Immunotherapy
9/15: Heaven got a new angel <3
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
Make sure you specifically ask for a possey muir valve trach so if your father is able to speak he will be able to with that type of trach.

Someone should be with him at all times, especially if he cant speak. The patient who is unable to talk really needs an advocate with them. Even if it says he is unable to speak on the door, nurses and staff will still talk to him and expect a response. Too many patients and not enough one on one staff! A dry erase board or even cell texting will help him to communicate.

Best wishes!!!


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: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Likes: 3
Hey there.. been through that surgery. Its not pretty for the first few days (frankly I looked like i'd been hit by a truck) but as long as his health is good he will get through it and to be honest it's the easiest of ALL of the treatments to bounce back from.

It's good they are doing a neck dissection. I would be almost certain that node is cancerous - plus a neck dissection is a stop gap of sorts.

a second primary is rare...

When they did my surgery they removed a 1/3 to half of my tongue, and the floor of my mouth up to my molars essentially they rebuilt my gums on the inside of my teeth.

Now about the surgery.

He will come out of surgery with a trache (likely) usually the first day or two it is a trache that does not allow for talking or breathing through anything except the trache. I think they do this to limit the amount of activity in the mouth. They want to minimize any possible damage to the surgical site. By day 2-3 they will switch it to a fenestrated trache which he will be able to breathe through his mouth and nose with and speak. This will stay in for two days more (likely) then they will remove it if everything looks good. He will have stitches in his arm (from his donor site, and a dressing from a second donor site (where they remove a superficial layer of skin to cover the wrist).

He should have a catheter mine was removed day two as I was up and about and could go to the bathroom. He should also have an NG tube - it will likely come out day 8-9 depending on how he is doing with intake (food - fluids). I heal relatively fast so I was out by day ten but they didn't want me to have food until day 8 to give my tongue time to heal. He should try to stick to softish foods for the first week or two after the hospital. I did omeletes, eggs, smoothies, puddings. Anything bulky i washed down with a drink of water or almond milk on my good side. He will have stitches in his neck (mine were hidden - bless my surgeon). He will be swollen, (lymphnodes carry lymph fluid away from the area, no nodes? Fluid build up) this is from the lack of nodes and interruption in the lymphatic pathway and of course the surgery and healing (blood etc rushes to the area to try and heal the damage) The swelling will go down some once he his healed then when he's been cancer free for a while he can go for lymphatic massage to help build new pathways and drain the fluid. Sometimes I still get a little swollen but for the most part I am "normal".

He will have an IV in - mine was in my foot - they removed it after day three when I asked them to stop the pain meds. I wasn't in pain really - my neck and cheek were numb from the surgery so other than weirdly uncomfortable from the swelling and numbness I was okay.

He should have a suction machine nearby. This is for cleaning his trache of the goop (you drool a lot - another way the body tries to heal you) so I would suck on it. I also put a cloth on my pillow so I could drool into it while I slept - gross but it was better than drooling all over myself. They also use it to suction out the trache... YEAH that REALLY SUCKED - no pun intended. I HATED THE TRACHE and the suction the most. Once the fenestrated trache was in and I didn't need to be suctioned as much I was good to go.

By the time I went home all I had was a bandage on my wrist (they removed the staples the morning I was leaving) a bandage on my leg, and a bandage covering my trache hole (which healed within two weeks)

When they do a neck dissection it tends to damage the muscle in your neck and shoulder. I needed physio for this as I couldn't life my arm and my range of motion was shot. If he starts doing passive exercises he should quickly regain it. Mine is 98-99% normal. Just a tad weaker than the other and only because I have been a lazy ass about working out. wink

Stretching his neck will help as well. I massage the muscles in the area too.

All in all it was a much faster recovery than radiation and chemo.
He should have something to write with and write on as it's likely he won't be able to speak for a few days.

Tell him he will get through it. It's a daunting surgery but with a good surgeon and plastics guy he will be OKAY.

Ideally he is being treated at a comprehensive cancer center. Hugs and best of luck to you both.





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: Sep 2014
Posts: 87
Likes: 2
Supporting Member (50+ posts)
Offline
Supporting Member (50+ posts)

Joined: Sep 2014
Posts: 87
Likes: 2
Yep, what Cherlyd says above is very true. I had the trache and similar timelines in terms of the progression of removing and adjusting pieces of it, then final closure of the thing. The trache was probably my least favourite and definitely the most annoying part of my whole treatment/recovery process. Especially in the first few days, it was quite scary when the drool/phlegm/whatever built up in the tube and needed some attention. Lots of coughing while holding the thing in place to make sure it doesn't blow out of the neck. He'll have to cough to try to blow the stuff out the tube. Eventually it won't work anymore and they'll use the suction hose. Then it will work for awhile and plug up again. Then the regular suction hose won't work anymore so they have to pop the cap off and stick the vacuum cleaner hose right in there. It can be pretty scary when you're laying there choking and the nurses happen to be busy with another patient (in my case I was in a room with five patients and three nurses stationed there - usually they were not horribly busy - maybe one would have to tend to one of the patients, but occasionally all three would be busy at the same time, & they'd hear me hacking and wheezing then would have to come tend to me instead). Once they removed the trache, I moved over to a more conventional room in the hospital and didn't have that level of attention anymore.

Also had a similar experience with the wrist flap site & staples to hold it together. I had to keep this wrapped for maybe six weeks after the surgery. My skin graft donor site was my thigh & when I was ready to go home, they still had what looked like a cardboard french fry serving container (with the bottom cut out) taped to my thigh, which allowed the air to heal the scab. I don't want to guess how much Polysporin, tape & non-stick pads I went through.

Even though I had about 7cm (which is just less than 3") of tongue removed, I can now eat almost everything and speak reasonably clearly (with a few occasional exceptions where I have some trouble and need to spell out a word or try to use an alternate word). When I was in the hospital, I used a clipboard, some paper and a pencil. Someone bought me a dry erase board and felt pen combo, but by that time I could already speak. I had also downloaded an app that will translate text you type and speak it out loud, but never actually ended up using it. It'll be helpful to make sure he has access to the dry erase board or at least a pen & paper when he wakes up from the surgery. The first time I tried to communicate with nurses I had a lot of trouble & it was quite frustrating until they scrounged through the storage room to find this for me.


Dx 2014Jan29 (42 yr old otherwise fit nonsmoker)
SCC tongue stage III T3N0M0
subtotal glossectomy, partial neck dissection, RFFF, trach, NG tube 2014Feb25 16 days in hospital
RAD 25 zaps 2014May5-2014Jun9
Back to work, paddling & hiking shortly afterwards
Joined: Oct 2014
Posts: 41
Contributing Member (25+ posts)
OP Offline
Contributing Member (25+ posts)

Joined: Oct 2014
Posts: 41
Thanks for the tips Christine. I did ask the surgeon if he would be able to talk with the trach and they said yes of course. I will verify that it is this type of trach.

Cheryl, your detailed experience is very helpful. I've been researching the procedure, but nothing is like a first hand account. I actually told my dad about your scenario and I think it made him feel better. The idea of removing part of your tongue is daunting. My dad doesn't speak much English and he never heard of tongue cancer before so it was shocking to say the least when the dr detailed the procedure. Of course he didn't detail the specific recovery that you did.

I think his biggest concern is the trach. It seems like that is the least liked part of the process for many, I'm a little scared because he may be alone at times (i work full time and my mom doesn't drive) and with the inability to speak I get worried that he may not be helped or he may panic, be in pain, etc.

Aside from that, my concern is his swallowing thereafter. Cheryl you mentioned removing 1/2 to 1/3 of your tongue. Did that include any back portion of your oral tongue?

Van paddler, thank you for your account as well. It's encouraging that you speak and eat well despite the surgery. I think that's always everyone's biggest fear. Did you go to speech and swallow therapy? How soon after surgery were you eating? Dad's surgeon says they test swallowing at 14 days. Does that mean he won't eat at all before then?

I'm curious about the tongue swelling. My dad already had a neck dissection with his first surgery so I am aware of that and how it comes and goes due to lymph system. Does the tongue heal relatively quickly?


Caregiver to father
DX:4/14 Surgery:5/14 resection, ND
TX: 33 IMRT complete 9/14
Scan: 10/14, suspicious area tongue & neck.
Biopsy confirmed SCC BOT 2nd Primary, right lateral tongue.
11/14: surgery partial glossectomy, pec flap, trach, NG tube, ND
12/14: debridement surgery, small area removed for clear margins
12/14: biopsy positive for SCC dermal metastasis
1/15: chemo: erbitux, taxol and carboplatin
3/15: 5FU, Erbitux
8/15: enrolled in PD-1 Immunotherapy
9/15: Heaven got a new angel <3
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Likes: 3
Yes the tongue heals relatively quickly though having had rads may slow this down a bit for your dad. With response to the tongue area, they went from tip to back and a bit down my throat I know they cut me from the inside of my molars between my tongue and teeth, all the way down and out through through my neck (they filet me...) If you know anything about head and neck anatomy I basically have a scar running down my throat inside..

The trache truly sucks, I mean it's was way worse than anything, being suctioned sucks too. I thought for sure they'd sucked out part of my damn lung - they definitely scratched it. Hopefully they will put in a fenestrated trache right away but it wasn't part of my hospital protocol, they prefer there to be minimal messing with your mouth for the first few days.

As long as he has a call bell and knows to call when things begin to get raspy (not wait until things are intolerable) he should be okay. Then he can simply write down what the problem is and they can deal with it. I was out of the step down unit, within 18 hours after my surgery so I was in a semi private room almost immediately - I was in the top hospital in Toronto and still the nurses sucked. I thought at one point they were going to kill me. So hopefully he will have a better experience. Don't get me wrong my dr was amazing and so was the plastics guy but the floor nurses were idiots - and I'm not one to complain. In fact my husband told the nurse - you know what - my wife is not a complainer - she's very independent and very strong - so if she's complaining you have a problem.

Too funny.. Your dad may need an advocate - it really depends on the hospital. Maybe drop your mom before work? We did this with my father in law and we kinda covered him in shifts. He had esophageal cancer and the surgery was fairly large (I still tease him - my surgery was double the length of his) so we would drop my mother in law, come back later spend some time with him make sure she ate then Someone else would pick her up and take her home.

Best of luck.. He should be okay. For me my dressings weren't on nearly as long as xanpander - mind you I was a nurse at one point in my life and knew how to minimize my dressings. My leg was uncovered when I left. My wrist - well the staples were removed the day I left (day 10) and we just put a dressing over the area, and my neck I had steri strips and a small (skin colored finger wrap bandage). I covered it with a gel mesh then bandaged it. Very small. I was on a beach in Mexico 20 days after my surgery, I spent the week I got out of the hospital sorting out my son's passport issues and booking the trip. smile

Hugs

Last edited by Cheryld; 10-27-2014 09:37 AM.

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: Sep 2014
Posts: 87
Likes: 2
Supporting Member (50+ posts)
Offline
Supporting Member (50+ posts)

Joined: Sep 2014
Posts: 87
Likes: 2
[quote=ConcernedDaughter]Van paddler, thank you for your account as well. It's encouraging that you speak and eat well despite the surgery. I think that's always everyone's biggest fear. Did you go to speech and swallow therapy? How soon after surgery were you eating? Dad's surgeon says they test swallowing at 14 days. Does that mean he won't eat at all before then?

I'm curious about the tongue swelling. My dad already had a neck dissection with his first surgery so I am aware of that and how it comes and goes due to lymph system. Does the tongue heal relatively quickly? [/quote]
I didn't really have any speech therapy. The person who came to see me when I first started eating taught me how to roll the food over the top hump of my tongue. I think I was starting to be able to speak reasonably clearly at that time, so they never really seemed concerned. I speak more clearly all of the time, but still get tripped up when spelling D's and G's - they seem to sound the same to others.

I started eating solid food probably around day 14 as well. Before that time (and after the surgery), I was on a nasal tube and they just kept dumping some light brown gunk down there. Not really sure what exactly it was - I'd guess its some sort of high calorie product similar to Boost or Ensure. Then they started me out slowly with soups & juices, then cream of wheat & blenderized foods. When I proved I could eat enough calories on my own, they yanked the NG tube out, removed the last of my staples from the wrist site, and let me go home.

Haha, I probably had the wrappings on my wrist for longer than necessary. The nurses just told me to keep applying Polysporin and covering it with the non-stick pads, then sent me on my way. I wasn't really told when I could STOP doing this, and once I was out of the hospital, I was seeing different people of various specialties that didn't really know much about wound care, so I just used up the rest of the pads they gave me. It was also quite easy to scratch, and because I paddle in waters with a fair amount of coliform in the summer, I kept wrapping it up just in case I nicked it somehow while I was on the water.


Dx 2014Jan29 (42 yr old otherwise fit nonsmoker)
SCC tongue stage III T3N0M0
subtotal glossectomy, partial neck dissection, RFFF, trach, NG tube 2014Feb25 16 days in hospital
RAD 25 zaps 2014May5-2014Jun9
Back to work, paddling & hiking shortly afterwards
Joined: Oct 2014
Posts: 41
Contributing Member (25+ posts)
OP Offline
Contributing Member (25+ posts)

Joined: Oct 2014
Posts: 41
He's out of surgery. They took about 40% of his tongue out which is more than we were expecting. We were never told an exact amount, but judging by what the doctor drew for us, it looked like 25% at first. We are bit in shock as the dr also removed branches of the carotid artery and jugular vein due to a node that appears cancerous. The road to recovery seems very long. They seem confident that all the cancer is out (fingers crossed) but speech and swallow therapy may be needed as well as physical therapy for his shoulder due to a pec flap. This is the second surgery in less than 6 months. I didn't expect to be back to this so soon, but it is quite scary and I know this will have a major affect on my fathers mental state of mind.

I'm venting a bit and getting off topic, but wondering how long it will take before he feels okay. I am hoping pain drops down soon and that we can see an improvement is speech and eating soon especially with the holidays quickly approaching.

Last edited by ConcernedDaughter; 11-14-2014 01:43 PM.

Caregiver to father
DX:4/14 Surgery:5/14 resection, ND
TX: 33 IMRT complete 9/14
Scan: 10/14, suspicious area tongue & neck.
Biopsy confirmed SCC BOT 2nd Primary, right lateral tongue.
11/14: surgery partial glossectomy, pec flap, trach, NG tube, ND
12/14: debridement surgery, small area removed for clear margins
12/14: biopsy positive for SCC dermal metastasis
1/15: chemo: erbitux, taxol and carboplatin
3/15: 5FU, Erbitux
8/15: enrolled in PD-1 Immunotherapy
9/15: Heaven got a new angel <3
Joined: Apr 2014
Posts: 236
Gold Member (200+ posts)
Offline
Gold Member (200+ posts)

Joined: Apr 2014
Posts: 236
ConcernedDaughter

Happy that your father came through his surgery. My mother also hade 2 surgeries within 6 months. It seems like the recovery is a little slower the second go round. At least for my mother it was. He has been through a lot in such a short period of time.

Like Christine said keep the pain meds. going. I learned the hard way and waited till the pain hit and that was not good.

Best wishes for a good recovery.
Heidi


Last edited by sweetpe1; 11-14-2014 06:23 PM.

Sweetpe
Caregiver
RE:My Mother
Age 70
Non Smoker
SCC 3/4/2014 Left rear jaw
Mandiblctmy 3/25/2014
35RAD Completed on 06/03/2014
MRI 9/3/2014
25mm lobulated recurrence left mandible/floor of mouth carcinoma
9/23/14 Salvage Surgery
MET(s)
9/23/14 Salvage Surgery Not Successful
Chemo Recommended
1st Round of Cisplatin Chemo Started 10/20/14
Cisplatin stopped 11/20/14. Side affects to bad.
Chemo started again 1/22/15 Carbo/Docetaxel
Passed Away April 22,2015


Joined: Oct 2014
Posts: 41
Contributing Member (25+ posts)
OP Offline
Contributing Member (25+ posts)

Joined: Oct 2014
Posts: 41
Thanks Heidi. It's certainly been a difficult year and we still have some tough times ahead. I'm trying to be strong but it's hard to see my dad suffer. He's the strongest person I know. I know he's going to kick cancers butt and start enjoying life again soon.


Caregiver to father
DX:4/14 Surgery:5/14 resection, ND
TX: 33 IMRT complete 9/14
Scan: 10/14, suspicious area tongue & neck.
Biopsy confirmed SCC BOT 2nd Primary, right lateral tongue.
11/14: surgery partial glossectomy, pec flap, trach, NG tube, ND
12/14: debridement surgery, small area removed for clear margins
12/14: biopsy positive for SCC dermal metastasis
1/15: chemo: erbitux, taxol and carboplatin
3/15: 5FU, Erbitux
8/15: enrolled in PD-1 Immunotherapy
9/15: Heaven got a new angel <3
Page 1 of 2 1 2

Moderated by  Brian Hill 

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,166
Posts196,921
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5