The Oral Cancer Foundation Support Forum

Previous Thread
Next Thread
Print Thread
Looking for brutally honest answers #197526
11-04-2018 05:49 AM
11-04-2018 05:49 AM
Joined: Nov 2018
Posts: 5
M
Michelle S Offline OP
Member
Michelle S  Offline OP
Member
M

Joined: Nov 2018
Posts: 5
Hi, my name is Michelle and my mom is scheduled for surgery in about 3 weeks at Univ of Penn in Phila.

Her cancer is on the inside of her cheek and a little on her gums. Surgeon says it will be about a 10-12 hour surgery which includes:
-Removing cancer (which involves removing a few back upper teeth / molars + possible shaving of her upper jaw),
-Skin graph (skin from her arm)
-Feeding tube (down her nose) for 3-4 weeks post op
-Temporary Tracheotomy for 3-4 weeks post op
-they are predicting a 7 day hosp stay

She is 74 years old, she’s had Type 1 diabetes for about 52(+/-) years and maintains it fairly well. But with 3 surgical sites (inner cheek, arm / skin-graph, trach), puts her at a risk for healing & infection. She’s also allergic to antibiotics and is prone to vomiting, so we are worried about aspiration bc of the surgery and her trach tube & feeding tube. She also has Osteoporosis and takes Prolia. This is the first “health crisis” she’s had.

So...what are we really looking at here? She can’t help but wonder if the “cure” will be worse than the disease. Her Surgeon is saying even with her additional medical conditions, he’s predicting a minimum cure rate of 85%.

While we know no one has a crystal ball and can’t predict all the “what if’s”, we would love some other folks to weigh in here. We just want honest answers. The good, bad & the ugly.

I should also mention that my mother is a woman of great faith and resolve. She is not afraid to simply just opt out of treatment and let the chips fall where they may. She has considered going into palliative care and her family supports her no matter what.

Thanks for listening!!


Thanks and best regards,
Michelle S
Re: Looking for brutally honest answers [Re: Michelle S] #197527
11-04-2018 06:28 AM
11-04-2018 06:28 AM
Joined: Aug 2018
Posts: 144
C
ConnieT Offline
Senior Member (100+ posts)
ConnieT  Offline
Senior Member (100+ posts)
C

Joined: Aug 2018
Posts: 144
hugs to you and your mother Michelle. I'm a caregiver but it's hard to take it all in before, during and after. I'm not sure I would still be able to walk through this without my faith! All I can say for you from my experience is that your mom has to do all they say or the road will be far worse for her. My husband refuses to do what he has been told and is paying the consequences. It is a hard path for all involved.

Best wishes as decisions are made.

Survivors will come here and give you more info. They have been a foundation of information for me through this path

Last edited by ConnieT; 11-04-2018 06:28 AM.

Spouse of 56 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
Re: Looking for brutally honest answers [Re: Michelle S] #197534
11-04-2018 03:20 PM
11-04-2018 03:20 PM
Joined: Jun 2017
Posts: 23
M
Magnum Offline
Member
Magnum  Offline
Member
M

Joined: Jun 2017
Posts: 23
Michelle,

Best of luck with your mom's upcoming surgery. Can I ask why the surgeon is waiting three weeks before he operates on your mom?

Some of your questions are better answered by her doctors. One thing I've noticed is your listing of the skin graph - and you possibly omitted it due to simplicity sake - being taken from her forearm. I also had skin from my forearm removed (this area closely matches the blood vessels, etc, inside your mouth) but then, in addition, I had skin removed from my upper thigh to replace the forearm skin.

As far as having the cure be worse than the disease - being given an 85% cure rate is awesome! I wouldn't do anything, other than what they tell you to do, to jeopardize that! After my first re-occurrence I was given a 25% chance of survival. However, I assumed the doctors gave me that percentage based upon historical data - they did not take into consideration the power of prayer. I believe that prayer has helped me get to the point I'm at today. After my last PET scan (last week), my MO told me I had "defied the odds" - I could't have been given a more positive test result - especially after nearly 3 years of hearing nothing but negative results.

If I was your mom, I'd hold onto that 85% and have it be one of my motivations to see this through to "cured"!


Susan
04.12.16 1st surgery; rt partial glossectomy; neck dissection; 2/38 lymph nodes positive
05.12.16 Resected T2, N2b, M0
05.24.16 Rad, Cisplatin
10.03.16 Clear PET
04.11.17 Clear PET
06.09.17 1st recur
06.21.17 2nd Surg: rt partial glossectomy; forearm free flap; rt thigh skin graft
11.09.17 2nd recur
11.30.17 Nivolumab
02.06-16.18 Brachytherapy
06.12.18 3rd recur
06.12.18 Lt axillary lymph node SCC
07.05.18 Pain pump placd
08.23.18 Pump removd
10.29.18 PET-CT responds to treatmnt


Re: Looking for brutally honest answers [Re: Magnum] #197540
11-05-2018 06:56 PM
11-05-2018 06:56 PM
Joined: Nov 2018
Posts: 5
M
Michelle S Offline OP
Member
Michelle S  Offline OP
Member
M

Joined: Nov 2018
Posts: 5
Thank you so much for the encouragement, Magnum. I guess I’m looking for a detailed play by play of what her surgery will entail and what could go right and what could go wrong. It just all seems so invasive and extreme...but the drs slough It off like it’s no big deal to have a 10-12 hour surgery and come home with a feeding tube and tracheotomy.


Thanks and best regards,
Michelle S
Re: Looking for brutally honest answers [Re: ConnieT] #197541
11-05-2018 06:58 PM
11-05-2018 06:58 PM
Joined: Nov 2018
Posts: 5
M
Michelle S Offline OP
Member
Michelle S  Offline OP
Member
M

Joined: Nov 2018
Posts: 5
Thank you Connie T, I appreciate your support and encouragement. I would love to chat with people who have had this surgery and get their input. We just want to know what to realistically expect.


Thanks and best regards,
Michelle S
Re: Looking for brutally honest answers [Re: Michelle S] #197545
11-06-2018 03:30 PM
11-06-2018 03:30 PM
Joined: Jul 2012
Posts: 3,121
NYC
P
PaulB Offline
Patient Advocate (old timer, 2000 posts)
PaulB  Offline
Patient Advocate (old timer, 2000 posts)
P

Joined: Jul 2012
Posts: 3,121
NYC
The University of Pennsylvania is a fine hospital, although I’m from another state, I heard positive things about them with head and neck cancer. It’s true, many doctors make it seem like a walk in the park, but I’m sure their confidence in doing these surgeries comes into play.

I wouldn’t give too much thought into statistics! Each person is unique, and lots of info, if you’ve been reading, is outdated. I was never given any survival rates by my doctors, although i peeked on-line, and that was with 7 recurrences. They even increased the age of patient treatment from the ages in the 70’s into the mid 80’s, although other factors of physical condition come into play.

I have type 2 diabetes, so I know about, and have suffered from delayed healing. A key is controlling the blood sugar, if you can, and in the hospital they test you constantly.

One thing with a tporaey trache is communicating. I was alone, so I had no one to help me, and even had iSpeak on my cell phone, but that wasn’t given to me until a day later, and much hand signaling. When I did obtain my cell phone it was a waste because the surgery recovery had effected my vision. Eventually, I was given a dry erase board upon my request, which helped a lot. By day 3 or 4 my doctor placed the speaking trache, so I was better able to communicate better.

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: Looking for brutally honest answers [Re: Michelle S] #197551
11-07-2018 07:54 PM
11-07-2018 07:54 PM
Joined: Nov 2018
Posts: 5
M
Michelle S Offline OP
Member
Michelle S  Offline OP
Member
M

Joined: Nov 2018
Posts: 5
That is so helpful - thanks Paul B!!


Thanks and best regards,
Michelle S

Moderated by  Brian Hill 

Support OCF
Help OCF

Shop Amazon and Help OCF

Top Posters(All Time)
ChristineB 10,171
davidcpa 8,311
Cheryld 5,260
Brian Hill 4,743
Gary 3,552
Newest Members
LRG, jennirains, Chalice, G Todd, Chell5
11798 Registered Users
Forum Statistics
Forums23
Topics17,323
Posts192,620
Members11,798
Most Online306
Aug 21st, 2016
Brag Box
Powered by UBB.threads™ PHP Forum Software 7.6.2