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Feeling overwhelmed! #196285
04-27-2018 04:26 PM
04-27-2018 04:26 PM
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Posts: 41
Maine
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Vicky1 Offline OP
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Vicky1  Offline OP
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Maine
So, had our consult with my dad's surgical oncologist and radiation oncologist and I'm a bit overwhelmed. Drove 4 hours one way to Mass General's Cancer Care Center.

Dad's going to have to have part of his jaw removed and replaced with a bone from his leg. He'll also need radiation 5 days a week for 6.5 wks. The surgeon said he does 2 or 3 of this procedure a week, so he's probably very good at it.

This is my dad though. I'm scared of what's going to happen, if he'll be in pain, his mental state, etc. Also worried about bills and helping them stay afloat while my mom is off work for the summer and Dad can't work. Stressful times!


My father's information:
64 years old
Former tobacco chewer- chewed from age 11 to age 63
Diabetic, High Blood Pressure, High Cholesterol
Diagnosed in February 2018 with Stage 4, N0 Verrucous carcinoma (VC) is an uncommon variant of squamous cell carcinoma
Mandibulectomy and free-flap reconstruction May 30, 2018
Diagnosis changed to SSC.
Began treatment of 30 rads and 5 Cisplatin Cycles on July 18, 2018
Decided not to do any more Cisplatin after the first one.
Finished treatment on August 31, 2018.
Re: Feeling overwhelmed! [Re: Vicky1] #196286
04-28-2018 06:18 AM
04-28-2018 06:18 AM
Joined: Jun 2007
Posts: 10,196
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ChristineB Offline

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ChristineB  Offline

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Joined: Jun 2007
Posts: 10,196
PA
Your father is going to have a long road ahead of him. He's lucky to have such a caring daughter in his corner!

We all are apprehensive when we're facing unknown territory. Take it one step at a time, one day at a time. Try your best to stay busy with positive things to help pass the time and keep your mind engaged so you are able to avoid dwelling on the "what if" thinking. Theres a couple things you can do to prepare.

Anyone who offers you their assistance, tell them when the time comes you will let them know what they can do to help. People really do want to help but most of the time they have no idea what they can do. Someone should stay with your father 24/7 or as much as the hospital will allow. Even if your father is asleep the hospital staff still will be in and out of his room and often will speak to your father expecting him to reply which he may not be able to do very well especially when first out of surgery. Theres a million other little things that can add up to making this so much easier on everyone involved. Walking the dog, picking up groceries or prescriptions, driving your father to treatment or a doctors appointment, doing a load of laundry, mopping the kitchen floor, mowing the lawn, taking out the trash are just a few suggestions of things friends and relatives can do to help. Caregivers will need a break from time to time to catch their breath. Even having a few people take a couple "shifts" to sit with your father while he is in the hospital is a huge help to allow you and your mother time to yourselves to deal with your other responsibilities. Write down everyone who offers their help and then you or your mother will know who to call on when you need a hand with something or a break. You can never have too many helpers.

It sounds like your father is in very capable hands. Your father will probably end up having a feeding tube and trach with this type of major surgery. Theres not much he can do to prepare for this type of surgery. The only suggestion I have is to encourage your father to eat, especially all his favorite foods, desserts too. If he is on the slim side, putting on a few pounds would be a good idea. His ability to eat and drink probably will be compromised for a while. For most patients its a temporary nuisance. Your father sure doesnt want to go into this having any cravings for his favorite foods so get him to eat everything now. Cancer patients usually burn up calories at a greatly increased rate, he may want to start keeping an eye on his intake, fluids too.

Ask about therapists or what the treatment facility offers for mental health support. Its ALOT for anyone to deal with. Many patients and caregivers need some help to get thru what they're facing. Your father may need anxiety meds or something to help stabilize his moods. It is nothing to be ashamed of!!! Many patients avoid meds thinking about the stigmas that come along with that sort of thing. Some meds take weeks to work so if he would needs something its better to start taking it sooner rather than later. Same goes for caregivers. They have a very difficult job to be the voice for their patient while showing a sunny, positive attitude no matter how they really feel inside. I applaud caregivers for the inner strength they always have. Even when they dont realize it, caregivers all show an incredible amount of strength which helps the patient feel better about their situation.

Ive had the same surgery your father is having. It is not very easy on the patient but having people supporting him will help to make it so much easier on everyone.

Please stop by often, read and learn about what your father will be going thru, ask questions and we'll help you as much as possible. Hang in there!!!

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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
Re: Feeling overwhelmed! [Re: ChristineB] #196287
04-28-2018 12:27 PM
04-28-2018 12:27 PM
Joined: Mar 2018
Posts: 41
Maine
V
Vicky1 Offline OP
Contributing Member (25+ posts)
Vicky1  Offline OP
Contributing Member (25+ posts)
V

Joined: Mar 2018
Posts: 41
Maine
Thank you, Christine. I've been crying quite a lot lately. In reading your signature, it sounds like you had a long road to recovery. We didn't realize his cancer was effecting his bone until yesterday's meeting. I heard the radiation oncologist saying it's Stage 4 to another surgeon. I think they said N 2 after that, but I don't know what that means. They said it is likely in one of his neck lymph nodes as well, but that his lower neck is clear. Do you know if most people are able to walk after the surgery? Was your speech affected by your surgery? Our surgeon said he didn't anticipate having to remove any of Dad's tongue and seemed quite sure it wouldn't affect speech or swallowing. I will ask the social worker about therapy, etc.


My father's information:
64 years old
Former tobacco chewer- chewed from age 11 to age 63
Diabetic, High Blood Pressure, High Cholesterol
Diagnosed in February 2018 with Stage 4, N0 Verrucous carcinoma (VC) is an uncommon variant of squamous cell carcinoma
Mandibulectomy and free-flap reconstruction May 30, 2018
Diagnosis changed to SSC.
Began treatment of 30 rads and 5 Cisplatin Cycles on July 18, 2018
Decided not to do any more Cisplatin after the first one.
Finished treatment on August 31, 2018.
Re: Feeling overwhelmed! [Re: Vicky1] #196293
04-28-2018 06:28 PM
04-28-2018 06:28 PM
Joined: Mar 2018
Posts: 11
M
Maria NY Offline
Member
Maria NY  Offline
Member
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Joined: Mar 2018
Posts: 11
I had my surgery and reconstruction in January 2018. My leg healed quickly and with physical therapy I was able to get back to most physical activities after 6-8 weeks. I thought the radiation treatment was more difficult than the surgery. I was standing with a cane after the second day and walking with a cane on day 3. I was physically active prior to my diagnosis so I’m sure that helped with my recovery. Wishing your dad a speedy recovery!


Maria
Re: Feeling overwhelmed! [Re: Vicky1] #196300
04-29-2018 03:43 AM
04-29-2018 03:43 AM
Joined: Jun 2007
Posts: 10,196
PA
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ChristineB Offline

Administrator, Director of Patient Support Services
ChristineB  Offline

Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
C

Joined: Jun 2007
Posts: 10,196
PA
Yes, patients will be able to walk after surgery. From what Ive heard from patients who have had this surgery, the leg is painful. They need some PT and a walker then a cane to help make walking easier. Once the leg heals most patients will be back to almost all of their original functionality. Ive seen many who have a very slight limp afterwards. In the whole scheme of things a slight limp is not anything too serious, at least I dont think it is.

My speech was not affected by this surgery. There was significant swelling due to the complications I went thru... MOST patients do NOT have complications... Im just one of those lucky kinds of people who did. Since your fathers doc thinks your fathers tongue was not affected then he should be ok with his speech. Every case is different and will have their own things that bother the patient. If your fathers case isnt that invasive, he may not need a trach and feeding tube. Or if he would need them, it could be for a very short time possibly only necessary while hes in the hospital. Patients who need a trach should ask specifically for a Passey Muir trach so the patient is able to talk easier with having it. Make sure to mention this to the surgeon even if the doc says a trach isnt going to be used. You just never know until the doc actually gets in there and starts removing the cancer. Better to mention it and its not used than to have the regular trach given.

Hang in there and when you feel weak its ok to lean on us. We've gone thru this before and understand just how difficult it can be for everyone, not just for the patient.


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
Re: Feeling overwhelmed! [Re: Vicky1] #196312
04-29-2018 05:20 PM
04-29-2018 05:20 PM
Joined: Jul 2012
Posts: 3,125
NYC
P
PaulB Offline
Patient Advocate (old timer, 2000 posts)
PaulB  Offline
Patient Advocate (old timer, 2000 posts)
P

Joined: Jul 2012
Posts: 3,125
NYC
Hi,

I had a segmental mandibulectomy with a fibular free flap for osteoradionecrosis, which is pretty much the same surgery as if there was cancer, some cases the cancer is more involved. I was in “step down” for six days, minus one day in recovery. I was taken out of the bed around the 3rd day, actually sat up in a chair. At some point, they have you stand with the boot on, but I don’t recall walking as it was difficult. With this surgery, you have a support boot on due to part of the fibula being removed, while it heals, but reality it has little support for weight bearing. When I left the hospital on the 7th day, most go home, so i was told, but I went into rehab nursing for several months mostly due to prior treatments, and difficulty walking Also at this time, the trach, which is usually removed at your departure, was, but my stoma didn’t fully close due to prior radiation, and took a month to do so, so everytime I spoke the stoma needed to be closed off with gauze.

For the fibula, a thigh graft was placed on the lower leg for closure, but the lower leg did not fullly heal, and required a graft from tge groin, three months later, and finally healed.

The nerve for the mouth was cut, so if there is no graft, if it can be done, will effect the lip. Today, I have no more trouble with my legs than I did before this surgery.

I hope this helps


10/09 T1N2bM0 Tonsil
11/09 Taxotere Cisplation 5-FU 6 Months Hosp
01/11 35 IMRT 70Gy 7 Weeks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 weeks Taxotere Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Removed IORT 10Gy PNI
12/13 25 Proton Therapy 50Gy 6 weeks Carboplatin
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fibular Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent






Re: Feeling overwhelmed! [Re: Vicky1] #196319
04-30-2018 03:42 PM
04-30-2018 03:42 PM
Joined: Mar 2018
Posts: 41
Maine
V
Vicky1 Offline OP
Contributing Member (25+ posts)
Vicky1  Offline OP
Contributing Member (25+ posts)
V

Joined: Mar 2018
Posts: 41
Maine
Thank you for all of your responses! Did you all have a lot of pain while you healed? Did you look much different after your surgery?

Last edited by Vicky1; 04-30-2018 03:46 PM.

My father's information:
64 years old
Former tobacco chewer- chewed from age 11 to age 63
Diabetic, High Blood Pressure, High Cholesterol
Diagnosed in February 2018 with Stage 4, N0 Verrucous carcinoma (VC) is an uncommon variant of squamous cell carcinoma
Mandibulectomy and free-flap reconstruction May 30, 2018
Diagnosis changed to SSC.
Began treatment of 30 rads and 5 Cisplatin Cycles on July 18, 2018
Decided not to do any more Cisplatin after the first one.
Finished treatment on August 31, 2018.
Re: Feeling overwhelmed! [Re: Vicky1] #196333
05-01-2018 04:49 PM
05-01-2018 04:49 PM
Joined: May 2018
Posts: 5
Australia
A
An Hurst Offline
Member
An Hurst  Offline
Member
A

Joined: May 2018
Posts: 5
Australia
Hi Vicky

I’m going through the same fears as my mum has just been diagnosed with ACC however we are still in the early stages of diagnosis, treatment schedule has yet to be determined. We are in Australia but sending positive thoughts your way.


An


My mum has just been diagnosed with ACC. Treatment has yet to start as we’re still completing required scans. Surgery has been recommended. Would like to learn more about ACC and how to help her through this.
Re: Feeling overwhelmed! [Re: An Hurst] #196335
05-01-2018 06:35 PM
05-01-2018 06:35 PM
Joined: Mar 2018
Posts: 41
Maine
V
Vicky1 Offline OP
Contributing Member (25+ posts)
Vicky1  Offline OP
Contributing Member (25+ posts)
V

Joined: Mar 2018
Posts: 41
Maine
Love and strength to you and your mom, An! It is amazing what doctors can do today. I think we're in good company in this forum! I already feel better, knowing that people do make it through these procedures which sound so scary.


My father's information:
64 years old
Former tobacco chewer- chewed from age 11 to age 63
Diabetic, High Blood Pressure, High Cholesterol
Diagnosed in February 2018 with Stage 4, N0 Verrucous carcinoma (VC) is an uncommon variant of squamous cell carcinoma
Mandibulectomy and free-flap reconstruction May 30, 2018
Diagnosis changed to SSC.
Began treatment of 30 rads and 5 Cisplatin Cycles on July 18, 2018
Decided not to do any more Cisplatin after the first one.
Finished treatment on August 31, 2018.
Re: Feeling overwhelmed! [Re: Vicky1] #196340
05-02-2018 06:50 AM
05-02-2018 06:50 AM
Joined: Jul 2012
Posts: 3,125
NYC
P
PaulB Offline
Patient Advocate (old timer, 2000 posts)
PaulB  Offline
Patient Advocate (old timer, 2000 posts)
P

Joined: Jul 2012
Posts: 3,125
NYC
Vicky1,

I wouldn’t say I was in alot of pain, as I was on pain meds in the hospital and nursing home. They don’t want you in alot of pain as it interferes with healing too.

I looked somewhat different, not with the jaw replacement, but from the weight loss, all the prior surgeries, and the necessity to use the artery and vein from my chest for the mandibulectomy due to having no vascularity in my left neck from prior treatments/surgery, and a skin graft to protect this area too, otherwise, I’m back to my usual pre-surgery self, at two years out. Don’t get me wrong, it was a difficult time, especially being alone, and had my share of words, but actualky, I don’t think about it much now, except when I go to the doctor(s), and try to recollect everything for their review, which is mostly ongoing issues.

I hope this helps!


10/09 T1N2bM0 Tonsil
11/09 Taxotere Cisplation 5-FU 6 Months Hosp
01/11 35 IMRT 70Gy 7 Weeks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 weeks Taxotere Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Removed IORT 10Gy PNI
12/13 25 Proton Therapy 50Gy 6 weeks Carboplatin
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fibular Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent






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