| Joined: Nov 2018 Posts: 5 Member | OP Member 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
| | | | Joined: Aug 2018 Posts: 345 Likes: 8 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Aug 2018 Posts: 345 Likes: 8 | 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 07:28 AM.
Spouse of 58 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. 1/2020 diagnosed with cancer near TMJ 4/2020 chemo 5 days every 2 weeks 6/2020 proton therapy 9/21/2020 cancer free
| | | | Joined: Jun 2017 Posts: 30 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Jun 2017 Posts: 30 | 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
| | | | Joined: Nov 2018 Posts: 5 Member | OP Member 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
| | | | Joined: Nov 2018 Posts: 5 Member | OP Member 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
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | 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 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 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 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Nov 2018 Posts: 5 Member | OP Member Joined: Nov 2018 Posts: 5 | That is so helpful - thanks Paul B!!
Thanks and best regards, Michelle S
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