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#195901 03-15-2018 09:25 PM
Joined: Mar 2018
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Vicky1 Offline OP
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Joined: Mar 2018
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Hi All,

Just got the news on Friday that my father has verrucous carcinoma in his mouth. It's all very new to me, and I don't have much information, but I'm quite concerned about it. He's been a lifelong tobacco chewer. I'm worried about what exactly this diagnosis means for him. I'm worried they'll have to remove parts of his face or mouth. Anyone have experience with this cancer? What was the treatment like?

Last edited by Vicky1; 03-15-2018 09:26 PM.

Dad was diagnosed 2/28/18 w Stage 4, N0 Verrucous carcinoma (VC) an uncommon variant of SSC
Mandibulectomy and free-flap reconstruction 5/30/18
Diagnosis changed to SSC.
Began treatment of 30 rads and 5 Cisplatin Cycles on 7/18/18
Decided not to do any more Cisplatin after the first one.
Finished treatment on 8/31/18.
3.19 Abscess & Recurrence wide mouth resection
4.16.19 Scapular Flap Reconstruction surgery
9.6.19 Clear CT!
8.6.20 Clear CT!
Vicky1 #195902 03-16-2018 05:41 AM
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
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Welcome to OCF, Vicky! Im very sorry to read about your fathers cancer. The best thing you and your family can do is to read and educate yourselves about this disease. We'll be here to help you with info and support.

Take this step by step and day by day. Dr Google is NOT your friend! At the Oral Cancer Foundation (OCF), our info is correct and up to date. Our site is Health on the Net certified to provide reliable medical info. Most other sites are not. Our group is made up of oral cancer survivors and caregivers. We have been thru our experiences first hand. We may not have medical backgrounds or degrees but we will do our very best to pass along what we have learned.

Verrucous carcinoma (VC) is a rare cancer almost always caused by tobacco use. VC is a rare form of squamous cell carcinoma (SCC) which is what the majority of oral cancers are. If your father is still using tobacco, now is the time to quit... for good! Im a former smoker and know its not easy to quit but if he is going to beat the cancer then he must get rid of all forms of tobacco. There are known cancer causing chemicals added to tobacco. Even the e-cigs are not safe with things added to them regardless of what the packaging claims. The only safe tobacco is no tobacco!

Your father will likely have many appointments with different types of doctors. A second opinion would be an excellent idea! He should attempt to get to a comprehensive cancer center (CCC) if at all possible. They use a team based approach so all the specialists are on the same page. The CCCs would be the most experienced in treating rare or complex cases, like your fathers. Smaller local hospitals may see patients with VC once every couple years while a CCC sees them every month. If he would need to travel for treatment, there are free or very low cost housing near all the CCCs. The fees are very low, maybe $10 a night. Theres even some airlines who help cancer patients with free airfare. Just remember... bedside manner is NOT determined by how skilled the doctors are. Bottom line, your father needs to get the very best medical care he can and go with it.

Your father will likely have surgery and radiation (possibly with chemo). By itself, chemo will not eliminate this type of cancer. Chemo will help make the radiation more effective. It also can be used to try shrinking tumors so surgery isnt as invasive. It is a long road and not easy but its doable! If your father is on the slim side he should up his intake and gain a few pounds before starting any treatment. Since his ability to eat will be affected (temporarily), he will want to eat all his favorite foods now, desserts too. The last thing anyone wants to do is to go into treatment with food cravings. Its probably going to be months until your father can eat those favorites, thats why I say eat them now.

Anyone who offers to help your father should be told their name and contact info will be written down. When the time comes, someone will let them know what they can do to help. Theres a million things that can be done to help your father and family while your father is being treated. A load of laundry, walking the dog, mowing the lawn, picking up prescriptions or groceries, sitting with him while he is in the hospital, cooking a meal for your family and driving your father to appointments are all things that can be very helpful when your father isnt feeling well or is going thru radiation treatments.

The publication below may be a bit technical to read but it is from a respected source to help you learn about VC. We have had members who have had VC and been treated for it.

NCBI-National Center for Biotechnology Information...Verrucous Carcinoma

List of Cancer Centers

US News Best Hospitals List

Main OCF Website... Financial Assistance including Air travel/Lodging


Hang in there!!! We're here to help you all get thru this. I hope I havent overwhelmed you with too much info.




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
Vicky1 #195913 03-19-2018 05:58 PM
Joined: Mar 2011
Posts: 130
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Senior Member (100+ posts)
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Senior Member (100+ posts)

Joined: Mar 2011
Posts: 130
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Hi Vicky, Thank goodness you found the OCF and particularly that fantastic woman who was first to respond to you with that great info. The people on this site are some of the strongest and most helpful people in the world in my opinion. Honestly... I don't think I would have survived without them. I see that you're in Maine and I'd like to make myself available to help in any way I can. I can also tell you about the my experiences with doctors in this area. Positive and negative. One in particular (Boston) who is probably the most amazing, smart, passionate, knowledgeable and capable doctor there is. His students and interns instilled more confidence in me than the 3 doctors I had visited prior to being lucky enough to find him.

Lots to learn , lots to do and lots of "waiting" Ugggg.... waiting was the worst for me. Get back to me. I'd love to chat.

Will (Portland)


Lump in left side neck discovered Sept 2009
Misdiagnosed & FNA inconclusive
Large lymph node removed Nov. 2010 SCC and HPV16 pos
PET pointed tonsilectomy Feb. 2011
1ml tumor left side tonsil
Rads scheduled March 14th 2011. 2X36 GY's (72)
CarboTaxol once a week X 4 or 5 starting 4/5/11
No PEG
Vicky1 #195985 03-27-2018 08:44 PM
Joined: Mar 2018
Posts: 83
Likes: 1
Vicky1 Offline OP
Supporting Member (50+ posts)
OP Offline
Supporting Member (50+ posts)

Joined: Mar 2018
Posts: 83
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Hi, Will from Portland. I live in the midcoast. Went to college in your neck of the woods, at USM, though. Majored in biology, so I do understand what little Ive read. I'm scared ro look into it too deeply. We've been referred to Mass General by my dad's oral surgeon. His consult happens next month. He cares for a live-in client who is dependent on him in every way, so this diagnosis is earth shattering to my family and the family of his client. It's very stressful to know he'll have no income and his client will have no home while he is treated and recovering.

Thank you, Christine, for all the info. I'll read what you've sent when I'm feeling brave again.


Dad was diagnosed 2/28/18 w Stage 4, N0 Verrucous carcinoma (VC) an uncommon variant of SSC
Mandibulectomy and free-flap reconstruction 5/30/18
Diagnosis changed to SSC.
Began treatment of 30 rads and 5 Cisplatin Cycles on 7/18/18
Decided not to do any more Cisplatin after the first one.
Finished treatment on 8/31/18.
3.19 Abscess & Recurrence wide mouth resection
4.16.19 Scapular Flap Reconstruction surgery
9.6.19 Clear CT!
8.6.20 Clear CT!

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