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#148132 - 04/12/12 05:44 AM Frustration
Path Offline
Member

Registered: 03/23/12
Posts: 8
Loc: North Carolina USA
My husband Ronnie is 58 years old. He has been in intensive care for 14 days after oral cancer surgery. Mandibule reconstruction, large cancer under the tongue removed, bottom of tongue removed, all lymph nodes on right side removed, bone from leg used for mandibule. On April 5 back to OR for PEG. April 7 back to OR for wash out of infection on right side, drain put in. April 9 back to OR to repair flap on gum on right side.
Today, back to OR to repair chin. When the cancer was removed from the inside of the chin the skin was left too thin and skin had to be added so radation will not burn through there. He walks with a walker but not too far and he is good spirits, however when in the OR on April 7 someone fell against his leg causing intense pain for days. Now they say he has to go to a special care facility. This was never mentioned to us in all the pre op talks with the two surgery teams. Is this the normal thing to do? I am getting stressed and you folks know a lot more than me......help.
_________________________
Pat Harris

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#148133 - 04/12/12 07:15 AM Re: Frustration [Re: Path]
EricS Offline
Patient Advocate (1000+ posts)

Registered: 01/03/09
Posts: 1844
Loc: Idaho
Hi Pat!

Welcome to OCF my new friend! Glad you found us my dear, sorry you had to!

From the sounds of things...this is "normal" From the sounds of things he's doing very well too as he's in good spirits and moving around, that is awesome!

The pain from where the flap was taken in the leg is very common, that was where I experienced the most pain actually after surgery. I was rockin my walker for quite sometime afterwards and still bust out my cane every now and again.

This is a "huge" surgery to be sure and it takes sometime to recover and heal. Key is to keep breathing, keep him out of pain (pain is the enemy of healing as it puts the body in distress and slows the healing process) and just take it one step at a time.

We are here to support you both, we've been there and can help answer any questions Pat. I'm very glad you found us smile The people on these forums have been a Godsend personally so plug in as much as you need! Don't be afraid to ask questions or reach out!

Eric
_________________________
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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#148138 - 04/12/12 12:06 PM Re: Frustration [Re: EricS]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 5260
Loc: Toronto canada
It does sound fairly normal since the surgery was extensive. However a few red flags are up here. Is he at a CCC? An experienced surgeon one who is good, and has performed similar surgeries - if you are at a CCC it's likely he/she would have performed a similar operaton at least once - would have known what to expect - re the skin, the leg etc.. (I didn't have the mandible/ gum reconstruction - but I did have the rest - and i came out of the OR with two drains in place. The multiple trips to the OR is a bit concerning... Infection is something that happens - and is pretty much uncontrollable (though sterility and care does have some play in it) - his immune system is likely compromised leaving him more open to infection, but having to go back in - repair - gums, and chin skin - well that sounds to me like they didn't anticipate these problems before hand... Something an experienced surgeon would - not to say that the surgeon - I'm assuming he's an ENT (surgical oncologist) isn't experienced but I meant experienced with this type of invasive cancer ) I'm surprised the peg wasn't fitted from the outset as its a simple procedure and very short, and falling against his leg well I imagine it was an accident but still - that probably made matters worse... Particularly if it's the leg the bone for his mandible was harvested from - As for the special care facility - did they say how long and why? If he's moving around and able to get nutrition via the peg it doesn't make sense...

Another question - when they're planning to start rads? They might want to send him to a special care facility during rads as he is a very heavy patient - he has to heal and pain management will be an issue during radiation considering all that has been done to him.

I know it's frustrating particularly if you're unsure of what's normal - and everyone recovers at his or her own rate... But do educate yourself, and ask questions - some drs. tend to run roughshod over patients and their families because the patient and support people seem complacent to accept whatever the dr. Says. If you are more vocal, and ask for a full explanation - it makes them realize that you're not just a number but someone they are accountable to. So ask them - state your concerns- and make sure you get a complete picture of what and or why... smile

Hugs - good luck and 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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#148140 - 04/12/12 12:51 PM Re: Frustration [Re: Cheryld]
Path Offline
Member

Registered: 03/23/12
Posts: 8
Loc: North Carolina USA
Thanks for your answer ...he is at Duke and no they did not say how,long at special care. I just got a call... The flap looks to be breaking down again. Rads will have to wait until he heals completely. Something is not right about this whole thing and I feel uneasy. I was bald headed this time last year...breast cancer, but what I went through is nothing compared to this. Thanks again.
_________________________
Pat Harris

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#148142 - 04/12/12 12:54 PM Re: Frustration [Re: EricS]
Path Offline
Member

Registered: 03/23/12
Posts: 8
Loc: North Carolina USA
Thanks for the words of encouragement. I need them. So happy to have found all you good people.
_________________________
Pat Harris

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#148144 - 04/12/12 01:57 PM Re: Frustration [Re: Path]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 9060
Loc: PA
Welcome to OCF, Pat! A mandibulectomy is one rough procedure to recover from! It will take your husband a long time to recover. Its very common to send a patient who has this done to a special care facility to further recover before going home. Everything you have described sounds like its normal to me.

When I had my mandibulectomy, I was hospitalized for 2 months. I hurt so bad and would cry almost every day from the pain. It was terrible! That was my experience, everyone is different and will recover at their own pace. It will take a full year for his body to be completely healed from this invasive procedure. It is also normal to be sent back into the OR for minor tweaking. During my 2 month stint, I had a total of 7 surgeries. My first mandibulectomy failed and my face turned black where the new skin was, it had to be redone. This is not common but it does happen. Its more common within the first week of the procedure if the transported skin does not get adequate blood flow.

To help with the healing, your husband should be getting extra protein. I would speak to his doctor about this. There are liquid protein 'shots' that have 25 grams of protein and they can be put right thru his feeding tube. In cases like this, it is a good idea to help him bounce back quicker.

Hang in there, it will be ok now that you have found OCF to help you.
_________________________
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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#148145 - 04/12/12 02:03 PM Re: Frustration [Re: Path]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 5260
Loc: Toronto canada
Hi again... The flap breaking down makes me wonder if perhaps they didn't get it all maybe they should get larger margins or as Christine said inadequate blood flow... I'm assuming it's the tongue/floor of mouth we're talking about. I'm Canadian so I'm not sure if duke is a ccc - and how experienced they are with OC - I would find out - someone here may have been treated there - maybe they will pipe in. I can tell you a young girl on here last year had similar issues - flap would not take... It was redone several times - I think this was partly due to cancer stil in situ - and ultimately infection that became systemic. (she had it redone 4 times! ) I think this is a job for a very very skilled surgeon (very small space, very delicate surgery), and I have to tell you when I had my surgery my SO/ENT operated first then they had a plastic surgeon/ ENT rebuild my tongue and the floor of my mouth. It wasn't a picnic, but it was well done, I have amazing mobility with it and I lost a 3rd. I think you're right to be concerned - ask a crapload of questions get the details and research the responses. Congrats on getting through breast cancer... That's no picnic either! Hugs... You can do this.


Edited by Cheryld (04/12/12 02:05 PM)
_________________________
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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#148148 - 04/12/12 04:13 PM Re: Frustration [Re: Cheryld]
David2 Offline
Patient Advocate (1000+ posts)

Registered: 07/12/09
Posts: 1333
Loc: Los Angeles
Pat, I can't even imagine what your husband is going through, what you went through a year ago and what you're experiencing for him right now. I'll let the experts here add their advice - as they have so well already - and just send you all my best positive vibes.
_________________________
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 6 years all clear in 6/15

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#148154 - 04/12/12 05:04 PM Re: Frustration [Re: David2]
Path Offline
Member

Registered: 03/23/12
Posts: 8
Loc: North Carolina USA
Thank you for,the kind words. I have learned his ent dr. Does not want to take,him back to surgery at this time. Dont know why. The plastics are the ones saying the flap is breaking down. At first we were told he would,be in icu for 5 to 6 days amd be in hospital dor 10 days, well that went out the window. 14 days and 5 surgeries later. Oh well.
_________________________
Pat Harris

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#148156 - 04/12/12 05:26 PM Re: Frustration [Re: Path]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 9060
Loc: PA
Pat, this is a very hard complicated procedure. All kinds of things can happen. I was kept in a medically induced coma for 3 weeks so I was lucky and slept thru the worst of it. A physical therapy facility is a very good place to go before he is sent home. It will help him to prepare and gain strength before he goes home and is left without the medical professionals being there with him.

The plastics doc is probably trying to wait it out and is hoping it takes so your husband can avoid another surgery. I hope it turns around and he can avoid having anything else done. As far as looks go, any reconstructive procedures can be done down the road. They will make him wait a full year before doing any major adjustments.

Best wishes!
_________________________
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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#148157 - 04/12/12 05:52 PM Re: Frustration [Re: ChristineB]
AnitaFrances Offline
"Above & Beyond" Member (500+ posts)

Registered: 09/25/09
Posts: 694
Loc: Media, PA
Hi, Pat,

My husband also had a mandibulectomy and his procedure happened well after the initial cancer surgery. He has had numerous surgeries for infection control, and exterior flap replacements and most were done by the Plastic Surgeon. He comes home with one or two drains each time. It sounds like you are in a very good place to me (Duke). Everything you have said sounds "normal", although your husband seems to be getting everything at once. That must be so hard for you. Keep asking questions and voice your concerns to his team. You have every right to know what, why and when. Not knowing is the worst place to be. And scariest. Arm yourself with knowledge.

The leg pain lasts a long time, and so does the jaw discomfort. This is a process that will take months, maybe years, to get through. My husband is having his 11th surgery in 2 weeks for recurring infection related to radiation. As hard as all this is, you get to a point where you go along and do what needs to be done. Pain control is super important. No one should be a hero by not getting relief. While lots of things have changed for us, he is golfing and enjoying life. You guys will get there, too.

So, hang in there, keep posting here and know that you are not alone.

My best to you and your husband-
Anita

_________________________
Anita (62)
CG to husband, Clark, 72,
DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08,
HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft.
Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear,
PEG out 1/11. 6/11 non union jaw fracture
Fractured jaw w/surgery 7/14

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#148160 - 04/12/12 06:58 PM Re: Frustration [Re: ChristineB]
Path Offline
Member

Registered: 03/23/12
Posts: 8
Loc: North Carolina USA
When they did the surgery they cut his throat in the wrinkle flap and raised his face up. Can't even tell he had that kind if surgery. He looks good, but he is upset this time. Just got a call have to go to Duke, they are going to do something. Will let you know. This is the greatest site. The people are wonderful. I read the site a while before I dared to write. Thank all of you and bless each and everyone.
_________________________
Pat Harris

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#148161 - 04/12/12 08:02 PM Re: Frustration [Re: Path]
SUEZ Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/21/10
Posts: 531
Loc: AURORA, OH
You've found the right place for information and support as everyone else glad you found us sorry you had to. Hope all goes well today with what they are going to do again. Please come back and keep us informed on Ron's progress!
_________________________
CG to Ron
Out of Pain 4/3/13
4/12-lung and under chin growth no treatment
1/13/12 lung biopsy
6/11 recur 6/30 resection #2 Clear margins
Clear 12/10
Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out
RAD 30 8/10
DX 4/2/10 "Oral Cavity" T3NOMO
12/28/07 Non Hodg Lymph remission 7/08

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#148167 - 04/13/12 12:05 AM Re: Frustration [Re: ChristineB]
KP5 Offline
"Above & Beyond" Member (500+ posts)

Registered: 10/09/11
Posts: 805
Loc: NY
Hi Pat,
So sorry for all you and your hubby are going through. I, too, don't have experience with this tx, but have been a caregiver and can feel your protective instinct in your words. You go girl I have learned that my instincts were right almost everytime with Kevin. You have to be your husband's advocate here, so if you are really that uncomfortable, let it be known. Be patient with your words, but ask for explanations and expectations. They should understand your questions and concerns since this has gone a little different from the plan!!
Stay tuned in here. Will be praying for things to level out and you to find some peace.
Kathy
_________________________
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14

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#148181 - 04/13/12 05:13 AM Re: Frustration [Re: KP5]
Kerri Offline
"Above & Beyond" Member (500+ posts)

Registered: 08/08/11
Posts: 592
Loc: MA
Hi, Pat.

I just wanted to welcome you and offer my support. Although I don't know a lot about your husband's surgery, I just think that you have incredible strength. You have been through your fair share of the dreaded "C", so please don't minimize what you have endured!

Your spouse is lucky to have a caregiver such as yourself who understands what it's like to be a patient. It's unfortunate that all of this is happening to you both and I'm so very sorry for this.

You and your spouse will be held in my thoughts and here's to hoping for a full recovery and good prognosis...for you both! It won't be easy, I'm sure. Life is definitely not fair! Best wishes in getting through this one day at a time.
Lean on us any time!

Kerri
_________________________
37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
42 years old now...I wasn't sure I would make it! Hoping for 40 more!

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#148198 - 04/13/12 01:20 PM Re: Frustration [Re: Kerri]
Anne-Marie Offline
Patient Advocate (old timer, 2000 posts)

Registered: 11/03/06
Posts: 2671
Loc: TN
Pat - I'm so glad you found this great place to come to for great advice and support. As a caregiver, I don't know what I would have done without OCF. Be sure and ask any and all questions you have when you and your husband have your next appointment. Write them down or have someone else go with you - it helps to be able to remember what was said and check with each other later. Hope everything goes well for both of you. Stay close to us here and let us know what's happening.
_________________________
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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#148229 - 04/13/12 11:50 PM Re: Frustration [Re: Anne-Marie]
Path Offline
Member

Registered: 03/23/12
Posts: 8
Loc: North Carolina USA
Ok doctor said more surgery next week because the flap under the tongue is breaking down. Today they said they found a bug in his saliva that is causing the problem. They didn't say what the bug is, but it must be a strong one to eat through stitches that have only been in for a few days. Has anyone had this problem?

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#148230 - 04/14/12 12:39 AM Re: Frustration [Re: Path]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 9060
Loc: PA
Ask for specifics. Dont allow them to be vague like that. Ask if your husbnd has MRSA or a staph infection. Both can be a serious problem especially with a compormised immune system. You are his best advocate and they work for you both.

Good luck!!!
_________________________
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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#148232 - 04/14/12 12:46 AM Re: Frustration [Re: ChristineB]
Path Offline
Member

Registered: 03/23/12
Posts: 8
Loc: North Carolina USA
I was not there when they told him...I will find out tomorrow. I know that he has or had predominate gram positive cocci. I have his medical report up until the last two surgeries and I will have those Monday. It does not mention how many nodes they took out, bit dr said all on the right front of neck. Again thanks.






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#148233 - 04/14/12 12:48 AM Re: Frustration [Re: Path]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 9060
Loc: PA
If you dont see anyone to ask, call the nurse and ask her to check the chart. There is always a doctor on the floor just sometimes you have to ask for them to get the answers.

Im impressed by your excellent record keeping! Great job!!!!
_________________________
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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#148236 - 04/14/12 01:09 AM Re: Frustration [Re: ChristineB]
Path Offline
Member

Registered: 03/23/12
Posts: 8
Loc: North Carolina USA
I will. Thanks.

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#148267 - 04/14/12 01:49 PM Re: Frustration [Re: ChristineB]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 5260
Loc: Toronto canada
Yes be diligent and make noise. and when you drink out the information research it. It puts you in a better position knowledge wise! Hugs you're doing awesome. Despite being worried!
_________________________
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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